Literature Review NATIONAL COUNCIL ON DISABILITY A STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Literature Review Preliminary Findings December 3, 1991 Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street, N.W., Suite 1112 Washington, DC 20005 Table of Contents Page I. Introduction 3 II. Recent Public Policy Experience 4 III. Approach to the Literature Review 16 IV. Findings 18 V. Review of Literature on the Financing of Assistive Technology and Related Services 24 VI. Appendix 85 . Policy Letter: Office of Special Education . Policy Letter: Rehabilitation Services Administration National Council on Disability Study on Financing of Assistive Technology Devices and Assistive Technology Services for Individuals with Disabilities Literature Review I. Introduction The application of technologies to diminish the limitations and extend the capabilities of persons with disabilities is one of the prime social and economic goals of public policy. (Gibbons, 1982, Office of Technology Assessment). In the past 25 years, Congress has established over 30 programs that affect Americans with disabilities. There are over a dozen agencies on the federal level charged with the responsibility of managing these programs, interpreting Congressional mandates, and monitoring state implementation. Although sometimes described as a patchwork quilt or "federal maze" (President Ronald Reagan, 1983), which continues to grow more complex each year, there is agreement that federal laws and programs must be directed toward the national goal of "assuring equal opportunities and promoting independence for persons with disabilities," (National Council on Disability, 1986). Technology is a proven means to assure equal opportunities and promote independence. The public record of House and Senate hearings that led to the passage of the Technology Related Assistance Act in 1988, (P.L. 100-407), documents professionals, parents, and consumers' viewpoints that for many individuals with disabilities, assistive technology devices and services enable them to: a. have greater control of their lives; b. participate in and contribute more fully to activities in their home, school and work environments; c. interact to a greater extent with non-disabled individuals; and d. otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities. (Section 2: Findings 29 USC 2201) If persons with disabilities had a sufficient income base, identified appropriate technology would be purchased without third party involvement. However, the limited economic status and purchasing power of persons with disabilities requires a search for alternative solutions. The development and use of technologies by persons with disabilities is critically impacted by the availability and allocation of public resources in support of public policy to promote equal opportunity and independence. An effective funding system(s) that is incentive driven, outcome oriented and consumer responsive must be designed to respond to the concerns frequently expressed by potential technology users with disabilities. "Technology could dramatically change my life... Unfortunately, I can't afford it!" The purpose of this study is to examine the effectiveness of current third party payor options in the public and private sectors on state and federal levels and propose the development of alternative strategies for acquiring or paying for assistive technology devices and services. II. Recent Public Policy Experience During the past six years, Congress and federal agencies have moved dramatically forward with public policy that improves access to assistive technology (see Table 1). An effective funding and financing strategy must be designed in light of seventeen significant public policy developments that have occurred since 1986: 1. Amendments to the Rehabilitation Act, P.L. 99-506 A. In 1986, for the first time, a definition of rehabilitation engineering was added to the Act to "include a range of services and devices which can supplement and enhance individual functions..." The Amendments require each state vocational rehabilitation agency to describe in their three-year state plan how rehabilitation technology services will be provided to assist an increasing number of individuals with disabilities. The Amendments also require the application of rehabilitation technology services when making determinations of eligibility. This is particularly important for individuals who might otherwise be found ineligible for vocational rehabilitation services. The Amendments further include rehabilitation engineering technology as one of only four services which must be provided by the state rehabilitation system without consideration of comparable services and benefits -- a clear indication of Congressional recognition both of its importance and of the need for public systems to provide funding support to enable people who can benefit to be able to access these important supports. B. An important new direction in public policy was accomplished with the addition of Section 508 to the Act, without imposing any significant new financial burdens on government, business, or employees. Federal agencies must provide workers with and without disabilities equivalent access to electronic office equipment. As a result of Section 508, the federal government, with the General Services Administration (GSA) taking the lead, has changed its rules for purchasing/leasing information technology. New guidelines for functional performance can be accomplished by manufacturers of computers "building in alternative capabilities such as single keystroke commands or providing hooks for the addition of adaptive peripheral equipment such as a one-handed keyboard or a braille printer." (Resna TA Project, 1990) As implementation of Section 508 proceeds, it is expected that accessibility-related equipment and support services will become an integral aspect of federal agency acquisition. It is anticipated that these new accessibility procurement guidelines by the federal government, who is the single largest purchaser of computers, will stimulate the accelerated development, manufacturing and marketing of accessible or adaptable office automation systems. 2. Early Intervention for Infants, Toddlers and Families, P.L. 99-457 In 1986, Congress enacted P.L. 99-457, within which was included a new Part H amendment to the Individuals with Disabilities Education Act (formerly Education for the Handicapped Act). This public policy declaration dramatically advanced national efforts to provide appropriate services to infants and toddlers with disabilities and their families. The statutory definition of early intervention services states, in part, "...designed to meet a handicapped infant's or toddler's developmental needs in any one or more of the following areas:", which include physical development, cognitive development language and speech development, psychosocial development, or self-help skills. Amplification of Congressional intent occurred in the Department of Education's final regulations issued on June 22, 1989 at 34 CFR Part 303, which includes the following: 'Occupational therapy' includes services to address the functional needs of a child related to the performance of self-help skills, adaptive behavior and play, and sensory, motor, and postural development. These services are designed to improve the child's functional ability to perform tasks in home, school, and community settings, and include: (i) identification, assessment, and intervention; and (ii) adaptation of the environment, and selection, design, and fabrication of assistive and orthotic devices to facilitate development and promote the acquisition of functional skills. With this new legislation and regulations, a major leap in assistive technology public policy occurred by creating an entitlement to such services for infants, toddlers and their families. A five year planning process will in 1992 be replaced by a new entitlement to services. 3. Employment Opportunity for Disabled Americans Act P.L. 99-463 The greatest public expenditures on behalf of persons with disabilities remain income maintenance programs. The two largest are Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI). In 1986, Congress approved new legislation to make it easier for people with disabilities to work and not lose their SSI benefits. As part of this public policy goal, Congress permanently authorized the PASS program. PASS is an acronym for Plan for Achieving Self-Support. An individual who is receiving SSI, or who would qualify for SSI by setting aside income from their paycheck, is eligible to develop a PASS. Each plan must be approved by the Social Security Administration, and can be used to purchase work-related assistive technology equipment or devices. The plan must state a clear and realistic vocational goal, and explain how the sheltered income will be spent within a specific timetable. This policy approach recognizes the importance of assistive technology to achieve the goals of independence and self-sufficiency, and gives special consideration from a tax or income perspective of the extra costs associated with acquisition. 4. Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987, P.L. 100-146 The Developmental Disabilities Assistance and Bill of Rights Act reflects emerging "best-practice" supports and services within a value-based context for individuals with developmental disabilities and their families. During the 1987 reauthorization process, Congress added assistive technology as a priority for state planning and funding for system development and system change. Within the 1990 amendments to the Act (P.L. 101-576), Congress modified the definition of assistive technology to conform to the definition in the Tech Act (P.L. 100-407). With this legislation, public focus on the financing of assistive technology was further advanced within a state system for planning and systems advocacy. 5. Older Americans Act of 1965, as amended (P.L. 100-175) In 1987, the Act was amended (P.L. 100-175) to include several provision related to older persons with developmental disabilities and/or mental health needs. Among the provision are requirements that: o planning linkages be established between HHS Commissioners of Aging, Developmental Disabilities and Alcohol, Drug Abuse and Mental Health; o the Commissioner of Aging consult and cooperate with the Commissioner of the Rehabilitation Services Administration in planning Older Americans Act programs; and o in evaluating OAA programs the Commissioner on Aging consult with developmental disability organizations whenever possible. Title III, Part B, Grants for Supportive Services, Nutrition and Other Activities, assists older individuals in avoiding institutionalization and individuals in long-term care institution who are able to return to their communities, including client assessment through case management, and integration and coordination of community services. The term "client assessment through case management" includes the provision of assistive technology. The term "assistive technology" is defined as engineering methodologies, or scientific principles appropriate to meet the needs of, and address the barriers confronted by, older individuals with functional limitations. Grants are awarded to States to develop and strengthen services systems on aging. State plans include several assurances including assurances associated with access to services (i.e. transportation, outreach, and information and referral). The phrase, "information and referral" includes information regarding to assistive technology. 6. Medicaid Amendments of 1988 for Special Education Related Services, P.L. 100-360 The Medicare Catastrophic Coverage Act (P.L. 100-360), contains a significant technical amendment to Medicaid law, which was not repealed with the Catastrophic Act. This legislation was intended to resolve a historical dispute in which the Health Care Financing Administration had declared that any service within a child's individualized education program (IEP), was the financial responsibility of the education agency and could not be billed to Medicaid. The 1988 amendment and accompanying report language explicitly offered states the option of including special education and related services under Part B of IDEA, and those services included under Part H of IDEA as Medicaid reimbursable services under the state's Medicaid plan. With this policy, Congress provided a major opportunity for states to access federal Medicaid funds for a full range of individual assistive technology services without adding additional burdens to the local and state special education budgets. 7. Technology-Related Assistance Act, P.L. 100-407 This federal mandate provides financial assistance to states on a competitive grant basis, to plan and implement a consumer responsive system of technology services for individuals of all ages with disabilities. Technology services and devices are defined in a broad context to stimulate creative problem solving, interagency coordination and professional consumer collaboration. In the first two years of implementation of the Act, 23 states have competed successfully for funding. States have broad discretion to target their funds to training, public awareness, service demonstration, policy analysis, and systems change. Unlike already existing public programs, this federal initiative represents the first time Congress targeted new public resources exclusively to expand access to assistive technology. 8. Telecommunications Accessibility Enhancement Act of 1988 P.L. 100-542 In 1988, Congress authorized P.L. 100-542, The Telecommunications Accessibility Enhancement Act of 1988. The purposes of the Act are to implement an interim telecommunications relay system to serve the needs of individuals who are hearing-impaired and speech-impaired for access to Federal departments and agencies; to equip all Federal departments and agencies with TDDs or facilities to accommodate portable TDDs; to provide for the assembly, publication and maintenance of a TDD directory for Federal departments and agencies; and for the publication of governmental TDD access numbers in other existing directories. The Act also required the FCC, in consultation with the Architectural and Transportation Barriers Compliance Board to establish and implement a telecommunications system for individuals who are hearing impaired and speech impaired within the Federal Government that serves as an interface between the TDD user and Federal departments and agencies. 9. Medicaid Early and Periodic Screening, Diagnosis and Treatment Amendments of 1989, P.L. 101-238 Included within the massive Omnibus Budget Reconciliation Act of 1989 (OBRA '89, P.L. 101-238), Congress enacted major changes within the Medicaid program required in all states, called Early and Periodic Screening, Diagnosis, and Treatment (EPSDT). Although EPSDT has been one of nine state Medicaid mandated services since its enactment in 1967, the states have had great discretion in interpretation and implementation of this benefit. As of April 1, 1990, the EPSDT Medicaid benefit was "federalized" and mandates that all children from birth to twenty-one years of age receiving, or eligible to receive Medicaid are entitled to the "medically necessary" diagnostic and treatment services for any physical or mental problem identified during such screening or assessment. Such services would be reimbursable under Medicaid if such "treatment" is coverable under federal Medicaid law, even if these "treatments" are not in the state's Medicaid plan; e.g. augmentative communication devices, wheelchairs, hearing aids, optical aids including glasses, etc. As a result of this Amendment, a significant number of children with physical, sensory or mental disabilities now have a right to assistive technology. Due to established practices within Medicaid, many challenges remain in assuring this right in concert with the second, and often overlooked, statutory purpose of Medicaid: "to furnish rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care," (P.L. 90-248, 42 USC 1396, Sec. 1901). 10. Americans with Disabilities Act (ADA), P.L. 101-336 Signed into law by President Bush on July 26, 1990, the Act will protect over 40 million Americans with disabilities from discrimination in employment, public services, transportation, public accommodations and telecommunications. Each Title of the Act specifically references assistive technology equipment or devices as a means to achieve access and equal opportunity. In Titles I and III, the purchase or modification of equipment and devices is included within the definition of "reasonable accommodation." However, the removal of architectural, physical, or communication barriers, through "reasonable accommodation," is not an absolute civil right. On a case by case basis, access to employment opportunity or public accommodations must be weighed against a defense of "undue hardship," a still evolving standard to evaluate the degree of difficulty and expense to a particular business. Title IV of the ADA expands access rights to the important area of telecommunications. Telephone services offered to the public in every state must include interstate and intrastate telecommunications relay services so that these services provide individuals with speech and hearing impairments access to communications equivalent to those provided to individuals able to use voice telephone systems. In multiple approaches, ADA will begin to redefine the inclusion of assistive technology within the core and penumbra of civil rights to be enjoyed by citizens with disabilities. The current year, 1991, represents a critical year of regulatory development that will begin to more solidly define the limits of access to assistive technology as part of "reasonable accommodation" in the workplace, commercial buildings, and public arenas. 11. ADA Tax Credit, P.L. 101-508 Under the Omnibus Budget Reconciliation Act of 1990, a new tax credit was created for small businesses, to provide additional incentives and assistance to meet the access requirements under ADA. The credit amount allowed a tax year is 50 percent of expenditures, up to a maximum of $10,250. Acceptable expenses include removal of architectural, communication, or transportation barriers. Coverage does include the purchase or modification of adaptive equipment or assistive devices as part of an effort to improve access to persons with disabilities. To qualify, a business must have gross receipts of less than one million dollars, or fewer than 30 full-time employees. 12. Decoder Circuitry Act of 1990, P.L. 101-431 In yet another approach to expand public policy, new requirements are mandated for the manufacturers of television sets with screens 13 inches or larger, sold in the United States after July 1, 1993. Televisions will be required to have built-in decoder circuitry to be compatible with current closed captioning signals. This new mandate will assure that people with hearing impairments will be able to see captions on programs that provide them by merely flipping a switch on their television. Mass production of the built-in decoders will cost an estimated three to five dollars per television. The potential audience for closed-captioned programming for individuals with communication disabilities is estimated to be more than 24 million. 13. Policy Letter: Office of Special Education Programs On August 10, 1990, Office of Special Education Programs Director, Dr. Judy Schrag issued a policy letter that clarifies the rights of children with disabilities to access assistive technology. This policy letter states clearly and unequivocally that assistive technology services and devices may be considered special education, related services, or supplementary aids and services to enable a student with a disability to remain in the regular education classroom. In other words, as part of the requirements of a "free, appropriate public education," (FAPE), assistive technology needs must be considered when developing a child's individualized education program (IEP). Needed assistive technology devices and services must be appropriately included as part of the IEP. In response to the requirements of the least restrictive environment principle and as special education or related services, children with disabilities have a right to assistive technology. These requirements were further reinforced in the recent reauthorization of the Education of the Handicapped Act. On October 30th, 1990, President Bush signed into law the Individuals with Disabilities Education Act (IDEA), P.L. 101-476, which, for the first time, includes definitions of assistive technology devices and services identical to those included in the TECH Act, P.L. 100-407. In report language, there is further emphasis on the right to assistive technology as part of special education and related services. The reauthorization language and the policy letter should result in more consistent access to assistive technology by school-age children with disabilities nationwide. 14. Policy Memo: Rehabilitation Services Administration On November 16th, 1990, Commissioner Nell Carney issued a policy directive to all state vocational rehabilitation agencies that sets important new guidelines concerning implementation of the 1986 rehabilitation technology amendments. Each state must develop written policies to address the need for assistive technology during the entire rehabilitation process: as part of determination of eligibility, evaluation of rehabilitation potential, extended evaluation, services provided under the individual written rehabilitation plan (IWRP), annual reviews of ineligibility, and post-employment services. An assessment of an individual with disabilities should consider how assistive technology devices and services can: a. increase or supplement function; and b. modify environments to accommodate individual abilities in the home and workplace. This added policy direction to implement the intent of Congress should place new demands on a major public resource program to allocate funds to increase access to technology. Analysis of these public policy developments reflects numerous approaches which have been utilized to increase availability of and access to assistive technology. These approaches include a range of activities designed to influence all aspects of policy development and implementation, (see Table 2). While these policy approaches do not reflect all of the avenues available to direct the public policy arena towards increased access to assistive technology, they certainly provide excellent examples of approaches which have been successfully utilized to date to begin movement in that direction. In addition, they provide important information on approaches which should be considered when developing additional strategies for the acquisition and financing of assistive technology services and devices in the future. Table 1 RECENT PUBLIC POLICY DEVELOPMENTS 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. Year 1986 1986 1986 1986 1987 1987 1988 1988 1988 1990 1990 1990 1990 1990 1990 1991 1991 Action Amendments to Rehabilitation Act: add definition, expand program requirements Amendment to Rehabilitation Act, Section 508: new guidelines for federal procurement of computers Early Intervention: new entitlement, expand program benefits Social Security Amendments Amendments to Developmental Disabilities Act: expand program requirements Older Americans Act Amendments: adds provision of assistive technology to Act; defines assistive technology Medicaid Amendments: clarify funding options and mandates Tech Act: Create statewide systems of technology assistance New Telecommunications Access Law ADA: employment, transportation, public accommodations, telecommunications ADA Tax Credit for Small Businesses Decoder Circuitry Act: design standard for televisions Policy Memo Special Education Policy Memo Rehabilitation Amendment to IDEA adding definitions of assistive technology devices and services Amendments to Part H of IDEA adding definitions of assistive technology services and devices Policy Letter Special Education Approach Clarify and expand program benefit of major public program Change procurement practices, impact manufacturers expectation of accessible design standards at lower cost Establish new major public program Tax sheltering of income to purchase technology New priority within existing public program Expands program benefit Clarify and expand existing program benefit New funding, new public program New TDD access requirement within Federal agencies New access requirements of private sector, access technology by expanding concept of civil rights Tax incentives to expand access to assistive technology Require new manufacturer standard for access Clarify rights under existing major public program Clarify rights under existing major public program Clarify rights under existing public program Clarify rights under existing public program Clarity right to take technology home from school Table 2 POLICY APPROACHES 1. Redirect or increase resource allocation under existing public programs. 2. Modify entitlements under existing public programs. 3. Clarify existing policy to mandate and monitor more consistent practices. 4. Modify discretionary priorities under existing public programs. 5. Establish new public programs. 6. Establish new laws to expand definition of civil rights. 7. Alter procurement practices of government. 8. Alter existing or create new tax incentives. 9. Allow tax sheltering of income. 10. Require new design standards for manufacturers of equipment to displace need for specialized equipment purchases. III. Approach to the Literature Review In light of recent public policy developments, the purpose of the Literature Review was to review and analyze both published and unpublished literature related to issues and practices in the acquisition and financing of assistive technology services and devices. The following activities were undertaken to accomplish the literature review: . Documents which were reviewed have been compiled in "core area" annotated bibliographies, including: 1. Enders, A. & Hall, M. (1990). Assistive Technology Sourcebook. Washington, D.C.: RESNA Press. 2. Enders, A. (1989). Funding for Assistive Technology and Related Services: An Annotated Bibliography. Washington, D.C.: Electronics Industries Foundation. 3. Request Program (1990). An Annotated Bibliography on Funding for Technology. Washington, D.C.: Rehabilitation Engineering Center, National Rehabilitation Hospital. 4. Center for Special Education Technology. Selected Readings: Funding Technology Products and Services. Reston, VA: A Project of the Council of Exceptional Children. . Over 15 national organizations and federal agencies who have done exemplary work in the field of assistive technology were contacted for information and materials available on the financing of assistive technology. These included: American Speech-Language-Hearing Association Paralyzed Veterans of America National Easter Seals Society National Association of Rehabilitation Facilities American Association of Occupational Therapists American Physical Therapists Association National Association of Equipment Suppliers Office of Technology Assessment, U.S Congress National Mobility Equipment Dealers Association Mobility Equipment Manufacturers Organization Health Industry Manufacturers Association Health Industry Distributors Association Council for Exceptional Children UCPA's S.M.A.R.T. Exchange Association for Retarded Citizens of the United States American Foundation for the Blind Alliance for Public Technologies World Institute on Disability Rehabilitation Engineering Society of North America (RESNA) . A meeting was held with Karen Franklin (RESNA TA Project) to discuss the Literature Review and review materials available through RESNA. . A meeting was held with Ana Torres, Project Coordinator of the George Washington University Regional Rehabilitation Continuing Education Program. RRCEP, in collaboration with Electronic Industries Foundation, has initiated a national project to develop, conduct and evaluate a national training program related to the Financing of Assistive Technology. The meeting was held to discuss issues related to the Literature Review. . The National Rehabilitation Information Center (NARIC), a rehabilitation information center and research library, was contacted to conduct a literature search on the financing of assistive technology, for review and possible inclusion in the Literature Review. . Sixteen Rehabilitation Engineering Centers were contacted regarding both published and unpublished materials that are available or will soon be available on the financing of assistive technology, for review and possible inclusion in the Literature Review. . Key decisions specifically pertaining to lawsuits filed on the financing of assistive technology were reviewed by Lewis Golinker, Esq., of Legal Services of Central New York, Inc., and a recognized national expert on funding. . Numerous experts on the funding of assistive technology were consulted. These included: (1) Alexandria Enders, University of Montana Rural Institute on Disability, and author of The Assistive Technology Sourcebook; (2) Anna Hofmann, Phonic Ear Inc., Editor, "The Many Faces of Funding;" (3) Steve White, American Speech-Language and Hearing Association; (4) Jan Galvin, National Rehabilitation Hospital; and (5) David Capozzi, Project ACTION, to discuss issues related to the Literature Review. . Each document was read and summarized using the following framework: 1. Reference/Source 2. Topics Covered: . Acquisition of Assistive Technology . Payment of Assistive Technology . Finance of Assistive Technology . Barriers to Finance of Assistive Technology . Facilitating Mechanisms for Finance of Assistive Technology . Federal and State Laws . State Regulations . State Procedures, Practices and Programs . Policies and Practices of Private Entities . Alternative Strategies to Financing . Available Surveys, Studies and Commission Findings . Loan System . Cost Factors to Financing 3. Database on which the findings were based (for experimental and cost studies) 4. Methodology employed (for experimental, survey, and cost studies) 5. Key findings/solutions/results 6. Areas in need of further study (strengths and weaknesses) 7. Targeted Audience . All Title I funded states and recently awarded Title II funded projects were contacted, to secure "in progress," "in press" and locally circulated documents for review and inclusion in the literature review. . All material was organized into functional user categories both for purposes of general use and for use of the Literature Review by Project Staff in completing tasks. IV. Findings 1. With the passage of the Technology-Related Assistance Act in 1988, children and adults with disabilities and their families have an expanding set of expectations about assistive technology devices and services, that is more available, accessible, and responsive to consumer needs. 2. Most individuals with disabilities and families with children with disabilities cannot afford to purchase assistive technology devices and services they need. The potential user is dependent on third party support, both public and private. 3. The challenge interested parties share is to clearly identify the entry points for a particular funding source, bridges to other funding options, and ways to avoid detours and stop signs that delay or deny reimbursement for assistive technology. 4. The majority of literature reviewed supports the finding that the most significant barriers to the availability of assistive technology are the unpredictable and inadequate funding of such services and the uncoordinated and incomplete structure of the delivery systems. 5. Equally imposing to the barrier of poorly coordinated service delivery systems is the lack of awareness of parents and potential technology users of their entitlement to assistive technology devices and services across overlapping public program funding streams. 6. The literature on the financing of assistive technology points out that little recognition is given to the ongoing nature of a person with a disability's need for technological support. Equipment was and still is often viewed as a one-shot event, a viewpoint which is reflected in the policies of the sources for funding assistive technology. Assistive technology services do not fit well into service delivery systems geared towards cure, closure, aging out or some other fixed end point. The concept of continuity in service delivery of assistive technology is not evident in existing public policy about the role of government. 7. Access to assistive technology funded by public programs will depend on: a. the degree to which services and funding are coordinated between programs and are consistent from locality to locality and state to state; b. the degree of consistency in determining eligibility; c. the extent of gaps in eligibility for services under public and non-public programs; d. the degree to which maintenance and repair of devices is difficult or costly; e. the degree to which consumers are sufficiently informed about their funding options and aware of the latest technology innovations; f. the degree to which consumers are effectively involved in service delivery; and g. the extent of available adequately trained therapists, and rehabilitation providers. 8. The literature indicates that there is a significant shortage of trained personnel in key discipline knowledgeable about assistive technology. The literature suggests several reasons for this which are associated with financing which may contribute to the aversions to the field: ever changing reimbursement policies; wide variety of eligibility criteria; low fee schedule; licensing laws; large volume of paperwork necessary to establish medical necessity or secure coverage. 9. The literature on the financing and services delivery of assistive technology confirms that most efforts to date have given insufficient attention to the training and assistance needed by individuals with disabilities, parents, and professionals to maximize the utilization of assistive technology. 10. The serious unfamiliarity with available assistive technology and related services among clinical and payment decision makers is well documented. This unfamiliarity in many cases translates into either underutilized or inappropriate application of existing technology. 11. The literature reveals that there are few mechanisms in public and private programs for allowing individual users' desires to be taken into account. 12. The new emphasis in disability policy on recognizing potential and removing the obstacles to participation in all aspects of community life creates a growing demand for assistive technology to enable persons with disabilities to function as independently as possible. This has important implications for redefining the goals of health policy which have previously been primarily oriented to preventing death and sustaining life. 13. The literature on health care financing for assistive technology describes the medical process through which it is determined and whether different forms of assistive technology will be covered. This process depends on documentation of medical necessity, judgements about cost-effectiveness, certification of providers, and a resort to an appeals process. 14. The literature on health care coverage for assistive technology takes a consumer advocacy view which indicates what has to be done to increase the chance that a health insurer will cover assistive technology. The emphasis is on documenting medical necessity, indicating how the functional limitation is attributable to an injury or illness, describing the assistive technology as a form of prosthesis which replaces the function of a body part, and demonstrating the cost-effectiveness of the assistive technology from the insurer's point of view by reducing future health care costs. This literature shows how the reimbursement process should conform to the requirements of the funding source. 15. The literature on health care financing generally supports the view that the terms of the insurance contract dictate what is and is not covered. But this generalization though basically true, does not take into account conditions under which insurers are very willing to exercise extra-contractual agreements to pay for certain services including assistive technology under certain conditions in order to avoid more costly services which are covered by the insurance contract. Moreover, the literature on the health care financing of assistive technology does not specifically analyze the incentives which underlie different forms of insurance. 16. Health insurance has traditionally financed assistive devices that were medically necessary; but these criteria do not provide an adequate basis for determining the type of assistive technology that is appropriate. The literature suggests several reasons for this: (1) the criterion of medical necessity does not provide any guidance as to the appropriateness of assistive devices; (2) the need for assistive devices is not limited to technologies that sustain life; (3) the need for the assistive devices are all related to the existence of the health condition; (4) traditional criteria for measuring the effectiveness of medical treatment such as physiological change and ability to perform minimal activities of daily living do not take account of how persons function in their environments; and (5) physicians are often not knowledgeable about the types of assistive devices which are most appropriate. 17. In general, most private insurance plans do not explicitly include or exclude coverage of assistive technology in their benefits; therefore, consumers do not know what they are entitled to. 18. It is clear through the literature that payment decision-making criteria are not well defined at policy levels, making it more difficult for clinical and claims representatives at the case level to judge with confidence the appropriateness of given alternatives. In the absence of criteria for appropriate assistive technology, insurers have relied on arbitrarily excluding major categories of assistive technology (e.g. augmentative communications devices) in order to achieve cost-containment goals. 19. The literature on health insurance and assistive technology also describes the coordination problems among different funding sources when they compete to be payor-or-last-resort or when a health insurer will refuse to cover a health related need because it was identified in an Individualized Education Program or a Vocational Rehabilitation Plan. 20. Several sources on the financing of assistive technology indicated that many individuals with disabilities' access to assistive technology depends upon their ability to purchase it on their own without the benefit of third party payment reimbursement. Table 3 on the following page summarizes the findings and identifies eight major barriers to the acquisition of needed technology. The majority of literature reviewed identified several issues in need of further investigation: 1. The financing of assistive technology through the tax code (i.e. incentives, credits, medical deductions) has been raised in several sources. Further study is needed to determine the cost of providing tax credits, accelerated write-offs or other incentives for business and/or individuals who purchase or lease assistive technology for themselves or their employees. 2. There are no Federal research priorities in the area of assistive technology that consider cost-benefit and cost-effectiveness information that translates into decision-making factors for third party payors. 3. Assistive financing or loan guarantees, credit financing, revolving loan funds and/or subsidy programs are sound alternatives to financing assistive technology. No information is available on the cost of implementing a federal initiative of this nature. Analogous to this is the need for more information on federal and state incentives to attract the substantial resources of the credit market into the assistive technology product market. 4. The literature on funding sources for assistive technology attempts to identify different types of insurance that could pay for assistive technology, but does not provide any theoretical explanations for the types of coverage that are provided by different types of insurance. Nor does the literature provide any empirical evidence of the frequency of coverage for assistive technology. 5. For the first time in the TECH Act, (P.L. 100-407), public policy dictates a standard of consumer responsiveness in the delivery of technology-related assistance. A review of the literature reveals a lack of research to help define consumer responsive best practices as it relates to funding and service delivery options. 6. The nexus between civil rights coverage and access to assistive technology as an affirmative obligation on government contractors, business and industry, and the providers of public services has been a subject of limited inquiry. Further research is needed to define the outer boundaries of constitutional and statutory protections of freedom of speech and assembly, and their interpretation to include access to communication and mobility supports. Research is needed to define the economic arguments to shifting obligations from the public to the private sector, and sharing the costs of access across the general consumer public (access surcharge to fund equipment acquisition). Table 3 ACCESS BARRIERS TO TECHNOLOGY 1. Lack of awareness by persons with disabilities, their family members and professionals about available technologies and their appropriate use. 2. Lack of awareness of rights (public programs, civil rights, tax incentives). 3. Lack of experience in applying rights protections to secure individual benefits. 4. Inconsistent implementation of public mandates (interagency coordination, degree of enforcement, state, local, public, private). 5. Degree of discretion of public and private funders (inconsistent reimbursement policies). 6. Resource allocation decisions by public programs (state, local containment of costs, scope of benefits, competing interests). 7. Lack of direct consumer control of resources (consumer involvement and responsiveness). 8. Shortage of skilled professional experts (knowledge gap, inadequate higher education programs). 9. Lack of enforcement of Section 508, compounded by lack of information and misunderstanding of the requirements among federal and state agencies. REVIEW OF THE LITERATURE ON THE FINANCING OF ASSISTIVE TECHNOLOGY AND RELATED SERVICES Alliance for Public Technology. Public Telecommunications Technologies in the 1990s: Achieving Universal Services. Report of the Board of Directors. Washington: July 1990. Available from: Alliance for Public Technology, 901 15th Street, NW Washington, DC 20005-2301; 202-408-1403; 20 pages and appendix. Summary: This report describes a vision of the telecommunications infrastructure of the 1990s and beyond, premised on the goal of universal access to all information services. The report outlines the steps necessary to begin to foster access to, and availability of, useful and affordable services and communication for all people, with the public telephone network playing a central role as an efficient and equitable means to achieve universal access. With the public telephone network as an Information Services Platform, universal access to low-cost information would encourage development of a much wider range of electronic services to meet the myriad needs and interests of all individuals, including individuals with disabilities. Target Audience: All individuals concerned with fostering access to, and availability of, useful and affordable information services and communication technology for all people. Issues Raised/Conclusions: The report concludes that universal access to information services must be a telecommunication policy goal of the United States in the 1990s and recommends several public policies which will foster this goal. First, policies should promote continued progress in universal services for the 94% of households served today, moving toward a goal of 100% served. Second, local telephone rates should continue to be set at affordable levels. Third, fair competition within the telecommunications industry, specifically regarding information services, should be protected. An increased role of the public telephone network will require public policies that ensure that competition among information vendors and providers is enhanced by the expanded network functionality and the larger number of consumers and services. No information is available to indicate how much it would cost to implement universal access. Although most of the infrastructure is already in place, some upgrades will be needed to allow the public telephone to function as an Information Services Platform. The report urges policy makers to collect data to forecast the costs. This will require that providers and regulators in each state conduct needs and cost-assessments for their own constituents. Anderson, S., Stevens, J., and Trachtman, L. A Guide to Funding Resources for Assistive Technology in South Carolina. Columbia, SC: January 1990. Available from: Center for Rehabilitation Technology Services, South Carolina Vocational Rehabilitation Department, 1410-B Coston Avenue West, Columbia, SC 29171-0051; 45 pages and appendices. Summary: This guide is a product of the symposium, "Funding Resources for Assistive Technology in South Carolina," which was held July 11-13, 1989. Divided into six sections, the guide is an overview of funding options in the state. Section Three contains a discussion on developing a funding strategy: questions to ask, guidelines to follow and brief explanations. Section Four is devoted to getting systems to work together, and implementing a strategy. Included is a discussion of alternative funding sources and appeals when customary channels do not work. Section Five is specific to South Carolina, and includes important eligibility criteria and what services and assistive technology will/will not be covered by most agencies in the State. Section Six contains references and sample documents. Target Audience: Consumers, families, practitioners, advocates, policy makers, Title I state funding coordinators. Issues Raised/Conclusions: The guide is a clear and concise explanation of funding options within South Carolina, complete with addresses and phone numbers. It does not, however, contain all the programmatic detail that may be necessary for success in obtaining funding for assistive technology within specific programs. The guide is a model other regions could follow when preparing material about their own funding resources. American Council on Education, Higher Education and Adult Training for People with Handicaps. Financial Aid for Students with Disabilities. Available from: HEATH Research Center, One Dupont Circle, N.W., Suite 800, Washington, D.C. 20036-1193; 202-939-9320 or 800-544-3284 Voice/TDD; 11 pages. Summary: This guide describes the various types of financial aid available for students with disabilities. Particular attention is given to expenses that are considered disability related, and suggestions are made about ways in which some of those expenses may be met. There follows a brief discussion of Vocational Rehabilitation Agencies, the services that they may provide, and the interaction between the state VR agency and the Financial Aid Office of a post-secondary institution. Suggestions are offered about additional possibilities for financial assistance. Target Audience: Students, VR clients pursuing post-secondary education, Title I state funding coordinators. Issues Raised/Conclusions: An analysis of Federal and state policies affecting the financing of post-secondary education for students with disabilities is beyond the scope of this document. Barnart, S., Seelman, K., and Gracer, B. "Policy Issues in Communications Accessibility." Journal of Disability Policy Studies, Vol. 1, No. 2 (Summer 1990). Available from: Dr. Kay Shriner, Ed., University of Arkansas at Fayettville, Dept. of Rehabilitation and Education Research, 346 North West Avenue, Fayettville, AK 72701; (501) 575-3656. Summary: The paper considers communications accessibility for individuals with sensory disability as equivalent in importance to that of architectural accessibility for people with mobility impairments. Communications accessibility is a basic civil right of people who are deaf or hearing impaired to receive and understand information and signals presented directly or over public alerting, public address and public telecommunications systems. Some existing statutes and regulations do apply to communications accessibility, but many changes are still needed in laws and regulations at the federal, state, and local levels. The article defines and describes ideal communications accessibility in different situations, identifies factors which affect its viability, and examines economic and legal/regulatory issues. Target Audience: Policy makers, advocates. Issues Raised/Conclusions: Communications accessibility expands the conceptual, legal and economic issues raised by architectural accessibility. These issues need to be addressed as laws and economic policies relating to accessibility are developed. Batavia, A. The Payors of Medical Rehabilitation: Eligibility Coverage and Payment Policies. Washington: January 1989. Available from: National Association of Rehabilitation Facilities, P.O. Box 17675, Washington, D.C. 20041; 703-648-9300; 62 pages and bibliography. Summary: This five part monograph describes the major payors of medical rehabilitation services. These are: Medicare, Medicaid, Veterans Administration, Vocational Rehabilitation, health insurance, Preferred Provider Arrangements, HMOs, Disability Insurance Plans, and casualty insurance. Descriptions are provided of eligibility, coverage, and payment policies. This monograph is a good overview of what is known about payment decisions regarding medical rehabilitation services. Target Audience: Individuals with disabilities, policy makers, Title I funding coordinators. Issues Raised/Conclusions: By comparing the eligibility rules and coverage criteria among different public and private programs, this study suggests that more effective coordination is necessary to avoid over-coverage for some persons, under-coverage for others, and no coverage for a growing number of Americans. The author believes that a comprehensive National Health Insurance Program for the entire population will eventually be adopted. Batavia, A. and Hammer, G. Toward the Development of Consumer Based Criteria for the Evaluation of Assistive Devices. Washington: Fall 1990. Available from: Andrew Bativia 700 7th Street S.W., #813, Washington, D.C. 20024. 12 pages. Summary: This study identifies and prioritizes factors used by long term users of assistive technology in assessing their devices. In total the study identified and prioritized 17 factors for 11 types of technologies. The study constitutes an initial step toward the development of design engineering and selection criteria based on specific concerns of consumers. The factors in order of priority include: affordability, compatibility, consumer repairability, dependability, durability, ease of assembly, ease of maintenance, effectiveness, flexibility, learnability, operability, personal acceptability, physical comfort, physical security, securability, and supplier repairability. Under each factor the study provides key questions a user should ask when selecting his or her equipment. Target Audience: Individuals who use assistive technology and their families, manufacturers, product designers, agencies, providers, information referral services. Beckett, J. Health Care Financing: A Guide for Families. Iowa City, IA: 1989. Available from: National Maternal and Child Health Resource Center, College of Law Building, The University of Iowa, Iowa City, IA 52242; 319-335-9067; 74 pages and appendix. Summary: This is a practical guide to help families understand the existing system, both public and private, for delivery and financing of health care. Written by a mother of a child with severe disabilities, the guide combines practical solutions to funding, including a listing of resource agencies and organizations, with a history of advocacy in the financing of health care for families with children with disabilities and other chronic conditions. The author emphasizes the importance of advocacy in overcoming barriers to finding financing and changing policy surrounding financing, and the difficulties faced by families of children with special needs. This guide also contains a Private Insurance Checklist, an HMO and PPO checklist, a good description of the CHAMPUS program (Civilian Health and Medical Program of the Uniformed Services) including its shortfalls, and a description of state supplemental family support programs. Target Audience: Consumers, families, practitioners, advocates and policy makers. Issues Raised/Conclusions: The book contains some important recommendations in selecting health insurance: . Consult with your child's physician and other providers and assess current and future needs; . Prior to changing jobs, evaluate the insurance options in relation to your child, including the type of coverage and the amount, duration and scope of services allowed; . Obtain coverage details in writing; and . If your child has health insurance, get a copy of the policy, HMO/PPO contract. The author recommends careful record-keeping of claims filed and payments made. The appendix contains a completed Medical Insurance Summary Form, developed by Parent Education and Assistance for Kids (PEAK). Using this form will help parents keep track of insurance-covered expenses and out-of-pocket expenses. Behney C. Technology and Disability: Policy Issues in the Year 2000. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 33 pages and references. Summary Written by one of the authors of the 1982 OTA Report, Technology and Handicapped People, the paper presents a series of assumptions covering technological developments, federal policies, demographies and other determinants of the future for technology and people with disabilities. The paper describes three possible scenarios for the future: (1) Marginal technology improvements with relative lack of resolution of policy issues; (2) Technology turning point and relative lack of resolution of policy issues; (3) Technology turning point and successful resolution of many policy issues. Target Audience: Individuals concerned with fostering access to, and availability of, useful and affordable technology for all individuals with disabilities. Issues Raised/Conclusion: The author concludes that scenario (2) is most likely to occur but offers no definitive reason on the choice. Many possibilities are offered for the future of technology but nothing in the way of recommendations for advocates or policy makers. The paper declines to suggest that any progress has been made since the 1982 OTA report, Technology and Handicapped People. Burns A. Communications Technology for Disabled People: Third-Party Policies and Financial Aids and Barriers. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 47 pages and references. Summary: This paper presents information about payment policy for communication technology for people with disabilities. The points made emphasize communications technology, however, they apply to other assistive technology for individuals with disabilities. The paper provides an overview of the system of technology selection, use and funding with a focus on government's and society's roles. The premise is that the use of technologies by people with disabilities appears to depend primarily on the public and nonpublic programs and services for which the individuals users are eligible. Through their affiliation with these programs and services, users either receive technologies directly, have them financed, or learn about them. Much of the information and analysis in the paper is updated from the OTA report Technology and Handicapped People. Target Audience: Individuals concerned with fostering access to, and availability of, useful and affordable technology for all individuals with disabilities. Issues Raised/Conclusion: The author was the analyst on the OTA project responsible for the delivery, use and financing issues. By reexamining the 1982 report, the conclusion is that although capabilities have continued to grow, the problems of financing and use system largely remain the same. There have been only minor changes in the program. Bergman, A. "Active Treatment:" An Entitlement for Assistive Technology Services for Individuals with Physical, Cognitive and Multiple Disabilities Living in ICFs/MR. Washington: April 1989. Available from: United Cerebral Palsy Associations, Inc., Community Services Division, 1522 K Street, N.W., Suite 1112, Washington, D.C. 20005; 1-800-USA-5UCP Voice/TDD; 8 pages. Summary: On October 3, 1988, the Health Care Financing Administration's (HCFA) new regulations for certification of intermediate care facilities for persons with mental retardation and related conditions (cerebral palsy, epilepsy, autism, etc.) took effect. These regulations apply to approximately 140,000 children and adults residing in ICFs/MR throughout the nation. The regulations mandate an individual entitlement to a "continuous active treatment program," as defined in the regulations and as individually tailored for each resident through the development of an individualized habilitation plan (IHP). This 24 hour, 7 day a week plan must encompass all aspects of life to assure that the services are directed toward "the acquisition of the behaviors necessary for the client to function with as much self determination and independence as possible." Target Audience: Families, advocates, policy makers, ICF/MR providers, nursing homes, PT's, OT's, ST's and others who may be involved in the development of IHP's. Issues Raised/Conclusions: This exhaustive extraction of specific sections of the regulations provides the framework for justifying the inclusion of the full range of assistive technology services and devices within an individual's IHP, which then constitutes an entitlement to the assistive technology services, as well as the ongoing maintenance and repair of such equipment as eyeglasses, hearing aids, communication aids, braces, wheelchairs, etc. The author urges family, advocate and provider training regarding an awareness of the range of assistive technology and its application to persons residing in ICFs/MR, the mechanisms to include the assistive technology is the IHP and to assure compliance by the providers. Bergman also develops the linkage between the ICF/MR regulations and the impact they have on the estimated 40,000-60,000 people with mental retardation and related conditions residing in nursing homes, whose services fall under the nursing home reform provisions in the Omnibus Budget Reconciliation Act of 1987. Following these regulations should assure each individual residing in an ICF/MR or nursing home of the appropriate assistive technology for his/her needs. Bergman, A. "Parents Right to Say 'No'...to Education Request to Bill Health Insurers." Family Support Bulletin, (Summer 1990): 16-17. Available from: United Cerebral Palsy Associations, Inc., Community Services Division, 1522 K Street, N.W., Suite 1112, Washington, D.C. 20005; 800-USA-5UCP Voice/TDD. Summary: Public Law 99-457 established new Part H provisions to utilize all public and private sources to pay for Part H services for infants and toddlers ages birth to three years, and their families, including private insurance. An unintended result of this policy is that an increasing number of local school districts are now "asking" parents of children 5-21 years of age to "voluntarily agree" to allow the school district to bill their health insurance company for related services provided under P.L. 94-142. The new Part H provisions, however, do not apply to P.L. 94-142, The Education for All Handicapped Children's Act, which assures the right to a free appropriate public education for all children with disabilities. Accordingly, parents do not have to use their health insurance for education-related services when they will face a realistic threat of financial loss including but not limited to: a decrease in available lifetime coverage, an increase in premiums, or an out-of-pocket expense such as payment of a deductible. This article provides the statutory language and regulatory citation to clarify the issue for parents and states. Target Audience: Parents, special educators, policy makers, advocates, providers, funding specialists, practitioners, PTs, OTs and others who may be involved in developing a child's IEP. Issues Raised/Conclusions: The author urges parents to "just say no" to allowing the local school authority to bill private insurance for special education related services. Bergman also raises a number of implementation issues: . Are parents given all of the factual information in order to make an "informed" decision? . Are parents led to believe that without insurance payments, fewer services will be provided to their child? . Do parents feel intimidated into signing over their insurance? . Do parents feel "guilty" or believe that if they don't sign, then they will be hurting their child? Berkowitz, M. Measuring the Efficiency of Public Programs: Costs and Benefits in Vocational Rehabilitation. Available from: Temple University Press, Broad and Oxford Streets, Philadelphia, PA. 19122; 215/787-8787; 263 pages and index. Summary: This book examines the difficulties in assessing the efficiency of Vocational Rehabilitation programs. The book narrows the scope of its study exclusively to the cost/benefit method of assessing program efficiency and emphasizes the paucity of accurate cost/benefit data available for use in assessment. The inaccuracy results from an inability to find a truly representative group of individuals with disabilities, who use the Vocational Rehabilitation program, for use as a control group in data collection. As a result of the inaccurate data the policy makers lack the firm evidence they need to support increased public investment in Vocational Rehabilitation. Target Audience: Individuals with disabilities, advocates, anyone allied with Vocational Rehabilitation, policy makers. Issues Raised/Conclusions: The book concludes that a cost/benefit model is not the best method of assessing the value of Vocational Rehabilitation. The cost/benefit method of assessment measures how the program failed the individual; a better method of assessment would examine the individual's status if he or she had not had the benefit of the program. This type of assessment method would include models designed to evaluate the change in behavior of the individual clients and counselors. If however the cost/benefit approach continues to be utilized, Berkowitz recommends 1) monitoring the client's progress throughout the Vocational Rehabilitation program as well as his/her progress from other programs with similar benefits and 2) use of Functional Assessment Inventory (FAI) as the method of assessing a persons physical or mental functioning before and after the Vocational Rehabilitation. Bradley, V. Family Support Services in the United States: An End of Decade Status Report. Cambridge: February 1990. Available from: Human Services Research Institute, 2336 Massachusetts Avenue, Cambridge, MA 02140; 617-876-0426; 280 pages, $20.00. Summary: This report is one part of a larger effort to provide states with technical assistance related to the development of a systematic approach to family supports. State family support programs are a very important and frequently overlooked funding source for assistive technology. This report describes states' efforts, program detail, and eligibility criteria, and provides the addresses and phone numbers of contact persons. A review of the literature and discussions with policy makers, providers and parent groups around the country crystallized the need to develop an up-to-date base of information on the current status of state family support efforts, before launching into an intensive technical assistance effort. The report provides a historical context for family support, a synthesis of state family support efforts including funding of assistive technology, and a description of some of the key issues surrounding the development of family support. This section is followed by a description of the family support activities in each state. Target Audience: Consumers, information and referral sources, state and local program administrators, policy makers, Title I state funding coordinators. Issues Raised/Conclusions: The report found that 41 states have developed programs with a special focus on supporting families who are raising a child with a developmental disability. These programs provided some services to at least 127,777 families during the last fiscal year. States working to improve access to assistive technology through the coordination of existing systems and programs should recognize the tremendous value of the information contained in this report. The report encourages supports that are family centered, culturally sensitive, community-centered, and well coordinated, all of which are found to be central to the acquisition of assistive technology and related services. Brady, P. Guide to Transportation Funds. Washington: 1989. Available from: United Cerebral Palsy Associations, Inc., Community Services Division, 1522 K Street, N.W., Suite 1112, Washington, D.C. 20005; 800-USA-5UCP Voice/TDD; 23 pages. Summary: This guide provides a directory of federal, state and local resources which will help nonprofit organizations/agencies interested in pursuing federal assistance for community-based specialized transportation services. Each year, the federal government awards in excess of $35,000,000 to community-based nonprofit organizations to assist with the acquisition of vans, buses and other equipment to provide transportation services to individuals with disabilities. The program, known as the 16(b)(2) Capital Assistance Program for Nonprofit Organizations Transporting Elderly and Handicapped, provides funds for capital purchases and is directed to areas where existing services are either insufficient, unavailable or inappropriate. The guide includes a sample completed application form for the Section 16(b)(2) Capital Assistance Program that was funded in Oregon. The guide describes several other programs through the Urban Mass Transit Administration for specialized transportation systems and provides other information on a variety of community transportation related topics. Target Audience: Organizations/agencies interested in improving community-based transportation options for individuals with disabilities. Burgdorf, R. Communication Technology, People with Disabilities, and the Law. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 33 pages and references. Summary: This paper is a clear and detailed summary of the current legal discussion around communication technology for people with disabilities and explores the impact of various legal requirements. The paper offers a legal framework on the requirement of access to communication technologies for individuals with disabilities. A few proposals are offered that might provide more comprehensive direction to employers, program and service providers and communication industry as to what is legally required. The paper suggests that there is a need for additional federal statutory clarification of certain issues. Target Audience: Government agencies, the communications industry, employers, and persons with disabilities, advocates. Issues Raised/Conclusions: The most obvious need in the area of communications technology, disability and the law is for more clear and specific legal requirements and standards regarding the right to access to communication devices and systems including: a) Equal employment opportunity for individuals with disabilities should be protected in all businesses engaged in an industry affecting commerce. b) FCC licensees should be subject to a requirement that the assure equal access for people with disabilities to their facilities, services, and programming. c) The Architectural and Transportation Barriers Compliance Board (ATBCB) in consultation with other pertinent agencies, should be directed to develop minimum guidelines for TDDs, computer terminals and software, and their communication devices and systems used or regulated by Federal agencies. Based upon these minimum guidelines, the FCC, the GSA and other Federal agencies should develop regulations regarding such systems and devices for the programs and activities they conduct or regulate. California, State of. Department of Health Services. Durable Medical Equipment (DME): Guidelines for Recommendations for Purchase. Sacramento: December 1987. Available from: Dept. of Health Services, California Children Services, 714 P Street, Sacramento, CA 95814; 10 pages. Summary: This guide is used by California Children Services (CCS) state agency personnel when recommending a state purchase of durable medical equipment (DME). The guide lists those items which may be a CCS benefit for children with disabilities and outlines criteria which must be met before recommending equipment to the treatment team for consideration and prescription. The guide charts medical condition and criteria for the use of equipment for self-care, mobility, and positioning devices. The guidelines included in this document were developed by a committee of CCS therapists to assist staff in making timely and appropriate equipment decisions, and to assist counties and state regional offices in achieving uniformity in CCS purchases. Target Audience: State program directors, policy makers, consumers and families, providers and vendors. Issues Raised/Conclusions: This approach by California is noteworthy and deserves further exploration as a method to resolve state purchasing inconsistencies. Other states could benefit from a similar model. Families and persons with disabilities will learn from the terminology and explanations used to justify equipment purchases. Issues that need to be explored are how the committee evaluates new technology, the extent to which consumers are involved in the decision-making process, how quickly the committee reacts to changes in the law and in the technology, how maintenance and repair financing decisions are made, and quality assurance. Castagna, A.D., Ph.D. An Agenda for Change: Unshackling Old Ideas Towards the Disabled. California: May 1990. Available from: A.D. Castagna, Quest Technologies Corporation, Sunnyvale, CA. 10 pages. Summary: This report discusses the need for appropriate incentives to encourage the development and financing of assistive technology. The basic premise of the paper is that a "market-based" orientation is the only mechanism that will lead to better quality, cost effective outcomes for persons with disabilities. Target Group: Individuals with disabilities and their families, product developers, manufacturers, suppliers, agencies, advocates. Issues Raised/Conclusions: A market-based approach towards assistive technology will improve services only if the market for assistive technology can become more competitive. The report offers several reasons why the current market for assistive technology is not competitive: 1) current regulations are inadequate to force public demand for assistive technology; 2) when looking for information on assistive technology, persons with disabilities often have to rely on service providers who may have economic incentive not to disseminate information which may be costly to them; 3) stereotypes about persons with disabilities have led to an ill-informed public that fails to view persons with disabilities as a potential consumer market; and 4) persons with disabilities are often not seen as the actual financiers of the technology since the technology is often financed through third party reimbursement systems. The report offers several suggestions for change including: 1) establishing a financial intermediary that can target individuals with disabilities as costumers; 2) changing the current ineffective legislation concerning assistive technology; and 3) changing the stereotype about persons with disabilities from that of passive recipients to that of active consumers. Center for Rehabilitation Technology Services. "Special Issue on Funding." Spectrum (Fall 1989). Available from: The Center for Rehabilitation Technology Services, 1410-C Boston Avenue, P.O. Box 15, West Columbia, SC 29171-0015; 803-822-5362; 8 pages. Summary: This issue of Spectrum is devoted to funding. Six priority areas for improving access to funds are discussed. The priorities emerged from a 1989 funding symposium entitled, "Funding Resources for Assistive Technology in South Carolina." The priority areas are: access to information, use of advocacy and support groups, improved networking and communication, use of case management techniques, better systems integration, and the development of education and training materials on funding. More detail on the priorities can be found by obtaining a copy of the Symposium's proceedings. The newsletter also contains an article entitled, "Funding: the Private Practice Perspective," a interview with a medical equipment supplier, and a short but good list of available funding resources. Target Audience: Consumers, families, practitioners, advocates, policy makers, and funding specialists. Center for Special Education Technology. Assistive Technology Resource Directory. Reston, VA: January 1990. Available from: The Council for Exceptional Children, 1920 Association Drive, Reston, VA 22091; 703-620-3660 or 800-873-8255; 62 pages. Summary: The Center for Special Education Technology at the Council for Exceptional Children is a national information center funded by the U.S. Department of Education, Office of Special Education Programs. The Center has compiled an annotated directory of resources to assist in locating key organizations, agencies and projects at the national, state, and local level which are involved in the delivery of assistive technology services. The directory provides a general overview of each agency and its services, as well as information about current technology related activities. Also included are the first nine recipients of the state technology-related assistance grants and the national technical assistance project funded by NIDRR under the P.L. 100-407. Target Audience: Consumers, families, practitioners, advocates and policy makers. Cohen, R., Roth, P., and Morris, M. A New Way of Thinking--Getting to Work, Understanding SSI Benefits for People With Disabilities. Washington: 1990. Available from: United Cerebral Palsy Associations, Inc., Community Services Division, 1522 K Street, N.W., Suite 1112, Washington, D.C. 20005; 800-USA-5UCP Voice/TDD; 16 pages, $2.50. Summary: This brochure explains P.L. 99-643, The Employment Opportunities for Disabled Americans Act, Section 1619 (a) and (b), which allows people who receive SSI to work without losing all of their benefits. Section 1619 (a) allows people to earn money on a job and still keep all or part of their monthly SSI payments. Section 1619 (b) ensures that people can keep their Medicaid benefits as long as they need them to continue working. The brochure also explains the PASS program, Plans for Achieving Self Support, which allows people to save money beyond the asset limits for SSI for a special work-related reason. A PASS can be written for assistive technology needed for work, if the technology is part of a feasible goal for becoming self-supporting. Target Audience: Consumers with disabilities who receive SSI, SSDI benefits who want to work and/or are planning a career, or are working and are interested in purchasing assistive technology; parents and consumer advocates. Commerce Clearing House. Medicare and Medicaid Guide. Chicago: 1991. Available from: Commerce Clearing House, Inc. 4025 W. Peterson Avenue, Chicago, Illinois, 60646; 202-626-2200; $905.00 per year. Summary: Medicare and Medicaid Guide in five volumes with regular biweekly reports, is a resource which covers the questions of who is eligible for Medicare, what services are covered by Medicare, and how non-institutionalized services are paid. These explanations are based on the law, regulations, pertinent rulings, court decisions and explanatory bulletins. Volume 1 contains Medicare Part B coverage for Durable Medical Equipment (3144), Prosthetic Devices (3152) and Braces, Trusses, and Artificial Limbs and Eyes (3156), Comprehensive Outpatient Rehabilitation Facility Services (3130), Physical and Occupational Therapy Services (3128), Speech Pathology Services (3129), and Home Health Services (3118). There is also a section on Exclusions From Medicare Coverage (4000) dealing with Services Not Reasonable and Necessary (4030) and Personal Comfort Items (4075). Volume 5 contains a topical index to new developments, Medicare Coverage Issues Manual (27,201), which is republished and updated quarterly in the Federal Register. The index describes whether certain specific medical items, services, treatment procedures, or technologies can be paid for under Medicare. The volume also contains a Durable Medical Equipment Reference List (27,221) which lists the coverage status of certain pieces of DME, and provides a brief explanation for DME equipment which is not covered. The rest of Volume 5 and accompanying Transfer Binders provide updated references to new developments which affect both the Medicare and Medicaid programs. Target Audience: Regional, State and local providers, vendors of durable medical equipment and area carriers, program administrators. Community Transportation Association of America. "Community Transportation Resource Guide." Community Transportation Reporter. 1991 Annual Issue on Resources. Available from: Community Transportation Reporter, 725 15th St. N.W., Suite 900 Washington, D.C. 20005; $10. Summary: Community Transportation Reporter is a monthly technical assistance publication of the Community Transportation Association of America, devoted to improving transportation in rural areas, small cities and other areas where older Americans, people with disabilities or low-income people do not have access to conventional public transit. Divided into four sections, this issue contains information on national resources, federal funding resources, federal and regional contacts, state contacts and funding levels. The federal funding sources are explained in detail, including program overview, eligibility criteria, and funding levels. Names, addresses and phone numbers are provided for all the funding resources including state, regional and national sources. Target Audience: Organizations/agencies interested in improving community-based transportation options for individuals with disabilities, advocates. Issues Raised/Conclusions: Each year, the U.S. Department of Transportation provides over $250 million in funds for specialized transit. Costen, C. Planning and Implementing Augmentative Communications Services Delivery. Washington: 1988. Available from: RESNA Press, 1101 Connecticut Avenue, N.W., Suite 700, Washington, D.C. 20036; 204 pages, $25.00. Summary: This document contains the proceedings of the National Planners Conference on Assistive Device Service Delivery, Chicago, IL, April 1987. Divided into four sections: Planning, Funding, Service Delivery, Assessment/Evaluation, the book contains a good overview of the issues and problems that state education agencies and other involved agencies will need to address in providing assistive technology and services to individuals with communication and mobility impairments. The book provides examples of planning and service delivery models that illustrate coordination among several agencies; and an overview of issues and considerations relative to funding equipment and financing service delivery. Section Two: Funding For Assistive Device Programs and Equipment, explores available funding models used by various programs, acquisition of funding to assist clients with the cost of assessment and securing assistive technology, and a discussion of funding issues with a primary focus on Medicare, Medicaid and private insurance. Target Audience: Individuals affiliated with state or local education agencies interested in, or responsible for, the development of programs or delivery of equipment or services to individuals who require assistive technology. DeWitt, J.C. and Mendelsohn, S. Establishing Nonprofit Foundations to Pay for Assistive Technology. Washington: September 1990. Available from: Rehabilitation Engineering Society of North America - Technical Assistance Project, 1101 Connecticut Avenue, N.W., Suite 700, Washington, D.C. 20036, 202\857-1140; 12 pages, references and bibliography. Summary: This report examines the use of a foundation as an alternative funding source for assistive technology devices and services. The report emphasizes that there is a valuable role to be played by public-private partnerships in state program development. In addition to the foundation's benefit as a funding source, it provides the benefit of greater speed and flexibility in administering the program since foundations require much less administrative red tape than do government agencies. Foundations will also be able to broaden the assistive technology constituency within the community. The report does not attempt to provide "how to" guidelines, however, it does mention important considerations that must be addressed within the partnership. For example, considerations include whether the foundation will be pro-active and address long range goals or be reactive and address only emergency needs; whether it will be public or private, corporation or trust; who the foundation will serve; and what services it will provide. Target Audience: people with disabilities, Title I state funding coordinators, foundations and other non-profit, charitable organizations. Issues Raised\Conclusions: Key to establishing a foundation is deciding clearly who the organization will serve and what services will be provided. This can be done only by having full knowledge of the existing technology and establishing eligibility criteria. An important situation to guard against is using foundation funds to replace rather than augment public resources. When determining what the scope of the foundation should be, it is essential to have an active, consumer responsive governing board and involvement from the profit sector and service providers in the community. The report cautions against the use of a foundation as a donor for families, employers and others who wish to contribute funds which would be used to benefit a specific individual. Such programs however, can and continue to be useful. Eckstein, R. Handicapped Funding Directory. Margate, FL: Seventh Edition, 1990. Available from: Research Grant Guides, P.O. Box 4970, Margate, Florida 33063; 251 pages, $23.50. Summary: The directory, designed as a resource in the quest for grant funds, profiles over 700 foundations, corporations, associations, and government agencies which have funded programs and services in disability-related areas. The directory's orientation is on obtaining program funding rather than grants to individuals. The directory includes associations, foundations and corporations listed by state, plus an index of federal programs listed by agency. Target Audience: Practitioners, advocates, information referral sources, consumers, policy makers and funding specialists. Electronic Industries Foundation. Provision of Assistive Technology Planning and Implementation: Report of a Workshop. Washington: March 1989. Available from: Electronic Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 206 pages and appendices. Summary: This valuable volume of information describes key components that should be part of a comprehensive assistive technology delivery service program. The manual includes a description of processes which might be used to plan and implement such a program. Chapter VII, "Payment Issues and Options in the Utilization of Assistive Technology," reviews the basic principles of funding, major federal funding sources, credit-based funding systems, tax subsidization of assistive technology, and financing through cost sharing. This section places special emphasis on state discretion in these programs and highlights those funding streams that remain a large but as yet untapped resource for assistive technology (i.e., Section 508 of the Rehabilitation Act, SSI, SSDI program work incentives.) Target Audience: This document will help states, regional and local groups plan and implement a program that would make maximum use of every resource available. Issues Raised/Conclusions: All the papers presented have implications for policy, practice and research. On financing options, the author concludes: . The SSDI and SSI work incentive programs of the Social Security Act represent a largely untapped resource in the financing of work-related assistive technology; . State assistive technology funding coordinators and information sources need to know in detail the mechanics of these Social Security work incentive programs and opportunities; . In VR, as with other categorical state grant programs, it is imperative for professionals, students, clients, and advocates to familiarize themselves with their respective state plans as they pertain to the financing of assistive technology; . Excessive reliance on self-financing through credit will indirectly exclude the most disadvantaged individuals with disabilities; and . Section 508 of the Rehabilitation Act, Accessible Electronic Office Equipment, constitutes an important new direction in public policy. This directive has profound implications in incorporating disability access to technology for other (non-government) large scale purchasers of electronics and other equipment. Enders, A. Assistive Technology Sourcebook. Washington: 1990. Available from: RESNA Press, 1101 Connecticut Avenue, N.W., Washington, D.C. 20036; 202-857-1199; 576 pages, $60.00. Summary: This resource is an encyclopedia of assistive technology and related services, filled with information for everyone involved with providing or using assistive technology. The book is organized into 18 chapters covering all areas of service delivery including: identifying what is currently available; resources for matching technology to an individual's needs; resources for specific areas of technological support; and ensuring that technology reaches those who can benefit from it. The Sourcebook is most comprehensive in its coverage of topics related to assistive technology. Target Audience: Policy makers, state financing coordinators, information referral sources, consumers, manufacturers and suppliers. Issues Raised/Conclusions: The information in Chapter 16, "Systems and Policy Issues," raises many important public policy issues and should be required reading by all individuals involved in policy decisions related to assistive technology. The author concludes that although technology has advanced, it is not benefiting the people who need it most. She criticizes the fragmented financial support system and warns against continued movement toward a complex patchwork of financing support that is rapidly polarizing toward the largely outdated Medicare (Part B) durable medical equipment model. Among the compendium of program considerations in this section are the following public policy recommendations: . Public policy should avoid an overly restrictive view of who might benefit from creative applications of technology; . Federal, state, and private sector partnerships must be evolved that will ameliorate social and administrative deficiencies in our delivery system and its financial support structure; . Comprehensive planning between agencies is needed; . Multi-agency government and private sector participation is essential, especially at the statewide delivery level. Chapter 16 also provides an extensive annotated bibliography on the funding of assistive technology. Enders, A. Writing National Policy on Work Disability Paper No. 5: Assistive Technology. Washington: November 1990. Available from: University of Montana, Rural Institute on Disability, Missoula, Montana 59812; 406/243-5481; 10 pages and appendix. Summary: This work examines the problem of policy makers treating technology as a method of rehabilitation to be utilized strictly as a last resort, i.e., only for use if the equipment is medically necessary, and never solely for purposes of integrating persons with disabilities into the community regardless of medical necessity. Enders suggests areas where policy makers can undo the last resort tradition and place increased emphasis on the service delivery system for assistive technology. Target Audience: Individuals with disabilities, design manufacturers, service providers, policy makers, the general public. Issues Raised/Conclusions: Assistive technology has capital asset value because it pays for its public cost by creating sustainable employment for individuals with disabilities. Most importantly, the report emphasizes that policy makers should not keep attempting to tinker with an unworkable system which sees technology as useful only if it is medically necessary. Broadening the roles of assistive technology will increase market demand and private sector incentives to create and invest in assistive technology. Ensign, A. "Assistive Devices: Funding Resources in Michigan." PAM Repeater, 42 (September 1987). Available from: PAM Assistance Center, 601 Maple Street, Lansing, MI 48906; 517-371-5897 in Michigan, 800-426-7426 Voice/TDD; 24 pages, $2.00. Summary: The PAM Assistance Center provides information about assistive technology with descriptions of items, what they cost, and how they might be secured. This publication addresses the process of obtaining funding for assistive technology in Michigan. The publication takes the reader through a three-step process of: 1) gathering information; 2) identifying appropriate agencies; and 3) applying for funds. This edition contains a chart of State funding sources and the devices most likely to be covered, outside funding sources, private insurance information, and other sources of information for funding in Michigan. Target Audience: The publication is specifically directed toward individuals with disabilities and their families and may be a model for other regions preparing material relevant to their own funding resources. Fox, H., Wicks, L., Kelly, R., and Greaney, A. An Examination of HMO Policies Affecting Children With Special Needs. Washington: September 1990. Available from: Fox Health Policy Consultants, Inc. 1140 Connecticut Avenue, N.W., Suite 1205, Washington, D.C. 20036; 202-223-1500; 123 pages. Summary: This publication will acquaint readers with Health Maintenance Organizations (HMOs) and their advantages and disadvantages in relation to children with special needs. The report is based on a review of existing literature on HMOs, interviews with parents and professionals experienced in the care of children with special-needs, data collected from a nationally representative sample of HMOs, and interviews with several HMO directors for their perspective on HMOs strengths and weaknesses in caring for children with special needs. The report also investigates the experiences of states enrolling Medicaid recipients in HMOs through interviews with Medicaid directors and staff. Target Audience: Families, advocates, HMOs, state insurance industry regulators, state Medicaid agencies, and state programs for children with special health care needs. Issues Raised/Conclusions: According to the report, 8.5 million or 13% of individuals served by HMOs are children. This includes 400,000 children who have chronic health conditions. The report specifies the concerns raised by advocates for children regarding HMO care for children with special needs, including: restrictive interpretation of "medically necessary;" cumbersome authorization and control mechanisms; waiting lists for limited number of affiliated programs; impeded access to specialty providers; disruption of ongoing treatment; deficits in HMOs' grievance process; deficits in coordination with non-medical human services. The report documents many problems with HMOs, several of which may affect access to assistive technology as a covered service, including: limited access to particular specialty providers; restrictions on the receipt of covered services; policy barriers to timely and appropriate care, especially for children with special needs; denial of covered services because of failure to meet strict medical necessity criteria. The impact of obstacles to appropriate care under HMO plans is compounded for families of children with special needs by the widespread lack of information about benefits and general confusion about how HMOs operate. Fox, H., and Yoshpe, R. Technology-Dependent Children's Access to Medicaid Home Care Financing. Washington: June 1986. Available from: Fox Health Policy Consultants, 1140 Connecticut Avenue, N.W., Washington, D.C. 20036; 47 pages. Summary: The purpose of this report is to examine the opportunities that technology-dependent children have for obtaining home care coverage under the Medicaid program. Three of these options require the states to obtain a federally approved waiver of usual Medicaid rules. The report is divided into four sections that provide information on: the Medicaid options available for financing technology-dependent children's home care; the current level of state activity in each of the options; state policies and practices that limit the number of children able to participate in the Medicaid home care program options; and the Medicaid and Crippled Children's Services (CCS) financing opportunities that would be available in five states for three hypothetical technology-dependent children. The states are California, Georgia, Kansas, Maryland, and Missouri. Target Audience: Policy makers, advocates. Issues Raised/Conclusions: Although a significant number of home care waivers and state plan amendments are available, in many states not as many children with severe disabilities as might be expected are participating. Variations in participation rates are frequently a function of the way a program is structured with regard to income eligibility, categorical eligibility, cost-effectiveness determinations, and service coverage. Policies of this type are discussed in Section III of the report, "State Policies and Practices that Limit the Number of Severely Disabled Children Able to Receive Home Care Services Under the Four Options." Fuhrer, M.J. Rehabilitation Outcomes: Analysis and Measurement. Copyright 1987. Available from: Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, Maryland 21585-0624; 271 pages, references and index. Summary: The goal of this book is to provide information which will promote a more accurate assessment of rehabilitation services. The book reviews current outcome analysis in the areas of medical rehabilitation, the rehabilitation of persons with mental retardation, psychiatric rehabilitation, vocational rehabilitation, and independent living. The author examines each of these areas in terms of the nature of service interventions and target groups; kinds of outcomes and how they are placed into operation; time frames within which outcomes are assessed; and additional research that warrants priority. The specific target groups examined are: multiple sclerosis, arthritis, burns, visual impairments, head injuries and spinal cord injuries. The book highlights controversial issues and recommends solutions to the problem of measurement, including detailed suggestions on which criteria would help standardize outcome assessment and how current policy and financing changes are likely to effect future approaches to outcome analysis. Target group: Rehabilitation professionals and those familiar with rehabilitation policy, manufacturers, agencies, program developers. Issues raised/Conclusions: The most important change to be made in rehabilitation assessment is to improve the studies done from a cost/benefit approach. One way to improve the cost/benefit assessment is to develop a uniform data system which would include: uniform language, definitions and measurements; data that adapt to the level of the disability and cost of care; cost effectiveness of the rehabilitation care; better feedback to health care providers; establishment of criteria for admission, discharge and referral to other services; and a uniform method for evaluating research. Funding and Assistive Technology: A STAR Program Workshop. Minnesota: 1991. Available From: 300 Centennial Building, 658 Ceder Street, St. Paul, Minnesota 55155; 36 pages and references. Summary: A perfect source for those in the first stages of learning about assistive technology. It offers basic easy-to- understand definitions of assistive technology vocabulary as well as consumer friendly explanations of the various pieces of legislation that require the provision of federal funds for assistive technology. A reader is given basic information about each of the available assistive technology funding sources in Minnesota. Information which includes step by step guidelines on how to apply for funding through each source, starting with where to obtain the application and the name of the agency contact person and ending with how to appeal a denial of funding. Target Audience: Individuals with disabilities and their families, providers and foundations in Minnesota, policy makers and agencies in other states interested in designing a similar information resource. Griss, B. "Strategies for Adapting the Private and Public Health Insurance Systems to the Health Related Needs of Persons with Disabilities or Chronic Illness." Access to Health Care Vol. 1, Nos. 3 & 4 (March 1989). Available from: United Cerebral Palsy Associations, Inc., 1522 K Street, N.W., Suite 1112, Washington, D.C. 20005; 91 pages. Summary: This policy bulletin focuses on the capacity of private and public health insurance systems to respond to the health related needs of persons with disabilities and persons with chronic illness. Included are a brief history of health insurance, a description of the limitations of both public and private insurance plans, and a discussion of options for change at the federal and state levels. This publication concludes with suggestions for the role of the disability movement in health insurance reform. Target Audience: State and federal policy makers, consumer advocates and service providers Issues Raised/Conclusions: Health insurance reform is on the public agenda for many reasons, and the disability movement has a special contribution to make in this reform. By exposing the limitations of private and public health insurance, the disability community can help influence the way different groups access the various options for health insurance reform. Because people with disabilities or chronic illness are likely to have higher health care costs, they are sensitive to the principles of affordability and the equity of health care financing. Because persons with disabilities or chronic illness are likely to need a range of health related services that extend beyond acute care, they are in a critical position to help broaden the definition of health care to include both preventive services and long-term support. Furthermore, because persons with disabilities recognize how barriers to health care create obstacles to employment and to meaningful participation in the community, the disability movement can effectively advocate for health care as a right to which all citizens should be entitled. Heil Jr., J. B. Disabled People Can Be An Important Market Segment. Washington, D.C.: February 1986 Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 16 pages. Summary: This paper offers a large business approach to technology financing for persons with disabilities and calls attention to some of the issues that impede prompt and continuous flow of new products to the market place. By describing the product planning process, it calls attention to voids in communication and information which deter technology from reaching the consumer with disabilities. Target Audience: All individuals concerned with fostering access to, and availability of useful and affordable technology for all people with disabilities. Issues Raised/Conclusions: The author offers a full range of important suggestions for improving private sector financing of assistive technology including the areas of private insurance, telecommunications and marketing techniques. These issues are not new, however, they have been expressed time and time again. Hipp E. State Telecommunication Policy and Disabled Persons. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 27 pages. Summary: State utility commissions have at their disposal a significant amount of discretion to design programs and adopt regulations to serve the telecommunications needs of customers with disabilities. Although some states have adopted wide-ranging, innovative approaches to meet these needs, the author emphasizes a great deal can still be done. The paper presented by the Commissioner of the North Carolina Utilities Commission describes guidelines designed for future state regulatory action to aid the states in their work on what actions to take regarding the provision of telecommunication equipment and services to their constituents with disabilities. Target Audience: State utility commissions and other individuals concerned with fostering access to, and availability of useful and affordable technology for people with sensory impairments. Issues raised/Conclusions Key recommendations include: Special Services a. Businesses Offices Assistance - States should require all telephone companies to provide TDD access to their business offices. b. Operator Assistance - States should require all telephone companies offering intralata and/or interlata operator assistance to provide for TDD access to this service to insure that deaf and severely hearing-impaired subscribers can obtain assistance with credit card calls, collect calls, person-to-person calls, and calls billed to third numbers. c. Directory Assistance - States hold require all telephone companies offering directory assistance to provide for TDD access to this service. Rates States should require that all carriers offering intralata and/or interlata toll service reduce their rates for such service for TDD users by a commission-established amount. Equipment a. Specialized Customer Premises Equipment - One good alternative is to establish a program whereby customers of a local telephone company who have been certified by a physician, may obtain specialized equipment from their local telephone company at no charge. A state should finance such a program by some means other than a surcharge. b. Public Telephone Access - States should require local telephone companies to provide, install and maintain a reasonable number of TDD-equipped pay telephone in public places. Hofmann, A. The Many Faces of Funding. Petaluma, CA: 1981-present. Available from: A. Hofmann, Phonic Ear Inc., 3880 Cypress Drive, Petaluma, CA 94954-7600, 1-800-277-0735. Funding Book and Newsletter subscription $45.00; one-year subscription to the Monthly Funding Newsletter is $8.00. Summary: This booklet, produced by a manufacturer of communication devices, represents a commitment of the company to provide all persons in the augmentative and alternative communication field with the information necessary to evaluate, plan and obtain needed funding. The booklet provides the reader with the necessary guidelines to pursue various funding sources. The first section is an overview of major third-party funding programs including federal, state, educational, insurance, and private sources. The second section, "Methods of Procedure," explores three topics: knowing your patient, relating to technology, and individuals with disabilities. The final section of the booklet consists of The Many Faces of Funding newsletters and contains sections on case histories and legislation as well as important topics including: funding through vocational rehabilitation; loan banks on the rise; legal documentation to challenge Medicaid denial; the Medicare appeals process; Medicaid coverage process; and insurance coverage. Target Audience: The comprehensiveness of this book contributes to making it an invaluable resource for consumers and families. Issues Raised/Conclusions: Approvals of funding of communication devices are most often related to the completeness of information provided and the method of presentation. Humphreys, R. The Dissemination of Sensory and Communication Technology from the Perspective of the Small Producer. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 22 pages and appendix. Summary: This paper is a limited assessment of the problems of assistive devices dissemination and potential solution to these problems. With the number one problem being the paucity of the distribution of the assistive devices to the people who need them, the author establishes the root cause of this problem as the lack of money. Using the profile of a typical assistive devices producer, the author illustrates the barriers to production including marketing and cost factors. Target Audience: All individuals concerned with fostering access to, and availability of useful and affordable technology for all people with disabilities. Issues Raised/Conclusions: The author concludes that nothing short of a national policy change, and commitment to implementation of that policy will modify the vicious cycle that now inhibits dissemination of sensory and communication aids on a broad scale. Such a change would necessitate involvement of Congress and the Executive Branch. Conceding that a change in administration policy is less than imminent, the author suggests three options: first utilize state, local and private resources, much in the way devices currently are distributed; second wait for a change in philosophy of the current administration, or wait for a new one; and third, develop a policy that can be shown to be cost-neutral or cost-beneficial. On a national level, the author recommends 1) a tax credit for purchase of devices by consumers with disabilities and their families 2) reimbursement for devices under Medicare and Medicaid, and 3) a program of low interest loans and loan guarantees for individuals, nonprofit agencies and employers of persons with disabilities. In addition, consideration should be given to amending the Targeted Jobs Tax Credit law to include specifically the provision of sensory and communications aids. A final alternative is the creation of an "orphan devices" program similar to P.L. 97-414, the Orphan Drug Act. Jackson C., Sloan, C. Federal Communications Regulations Services to Handicapped People. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 39 pages including glossary. Summary: This paper reviews the role of the Federal Communications Commission and the authority of Communications Act of 1934 as they relate to services to individuals with disabilities. It also provides a overview of the legislative history of the existing communication system for individuals with sensory impairments including the Telecommunications Enhancement Act of 1983. Target Audience: All individuals concerned with fostering access to, and availability of useful and affordable technology for all people with sensory disabilities. Issues Raised/Conclusion: The authors conclude that the impact of federal regulation on communications for individuals with disabilities is mixed, and no simple conclusion can be drawn about the benefits of regulation or deregulation, For example, it is undeniable that the open, deregulated terminal equipment marketplace has allowed many valuable products to be offered. Conversely, the problems of hearing-aid compatibility with telephones illustrates well that, in some areas, regulation can benefit the individuals with disabilities at little cost to society. The authors notes that at the federal level, almost all regulatory attention on telecommunications for individuals with disabilities has focused on the deaf and hearing-impaired. For the future, advocates should work toward a more broad based approach to universal solutions to accessibility. Kaplan, S. and Webb, B. Wooten. "Assistive Technology: The Right of Every Child with Special Needs." S.M.A.R.T. Moves, 4 (Winter 1990). Available from: The S.M.A.R.T. Exchange, P.O. Box 724704, Atlanta, GA 30339; 1-800-SMARTIE; 4 pages. Summary: The S.M.A.R.T. Exchange is a federally funded project designed to improve the delivery of technology-related services to people with disabilities. S.M.A.R.T. Moves is an information service of the Exchange. This issue of their newsletter is devoted to the right of a child with a disability to assistive technology devices and services under P.L. 94-142. The issue reprints the August 10th, 1990, policy letter from the Office of Special Education Programs (OSEP), along with related information from United Cerebral Palsy Associations which describes action steps to be taken at the local and state levels to ensure a student's right to assistive technology. The S.M.A.R.T. Exchange believes that this letter and the related information are so valuable that its contents are being further disseminated as a S.M.A.R.T. Moves Fact Sheet available through the S.M.A.R.T. Exchange. Parents and advocates are encouraged to share the information with others. Target Audience: Consumers, families, advocates, practitioners, and policy makers. Kaplan, S. and Webb, B. Wooten. "The Power Within Us Increasing Access to Assistive Technology." S.M.A.R.T. Moves Number 3 (Fall 1990). Available from: The S.M.A.R.T. Exchange, P.O. Box 724704, Atlanta, GA 30339; 800-SMARTIE; 4 pages. Summary: This issue of S.M.A.R.T. Moves is devoted to strategies that individuals can use to access technology. The newsletter reviews advocacy techniques, grievance procedures, the importance of developing vendor-rapport, and work-incentives. The newsletter also contains a resource list of organizations. Target Audience: Consumers, families, practitioners, advocates, and policy makers. Issues Raised/Conclusions: The authors conclude that personal knowledge and perseverance will determine each person's success in gaining access to the tools that can make a difference. Kreider, J.R. and Wissel, E., Ph.D. The Privates: Principles of Insurance Rehabilitation. Washington: January 1985. Available from: National Association of Rehabilitation Facilities, P.O. 17675, Washington, D.C. 20041; 703/556-8848; 69 pages. Summary: This book examines the legal aspects of insurance rehabilitation as practiced by the private for-profit sector and addresses some of the areas of confusion and discomfort. Specifically, a chapter on law and testimony provides some of the ground rules of testimony on insurance rehabilitation for use in rehabilitation journals. Another section is devoted specifically to health care and medical insurance programs and provides clear reasons for the involvement of private insurance companies in rehabilitation. Target Audience: Rehabilitation professionals, agencies, consumers, health care insurers and providers. Issues Raised/Conclusions: The book concludes that a better understanding of the reasoning and goals behind private insurance companies' involvement in rehabilitation will mean greater involvement by these companies, and rehabilitation services which are more updated and accessible. LaPlante, M. "Disability in Basic Life Activities Across the Life Span." Disability Statistics Report 1, 1991. Washington, D.C.: April, 1991. Available from: National Institute on Disability and Rehabilitation Research; U.S. Department of Education Office of Special Education and Rehabilitation Services 20202-2648; 42 pages. Summary: This study examines how the population living outside of institutions and needing assistance in basic life activities is distributed across the life span and to what extent the characteristics of assistance needs vary by age. The study draws some important conclusion which may help policy makers predict assistive technology utilization needs by age. The data reported are estimates from the 1979 and 1980 Home Care Supplement (HCS) to the National Health Interview Survey (NHIS). The NHIS is a continuing survey of the health of the U.S. population, covering about 40,000 households and 120,000 persons annually. The sample with assistance needs in basic life activities consists of 5,215 persons. Estimates represent only the civilian institutionalized population. Target Audience: Policy makers/researchers in the area of long-term care. Issues Raised/Conclusions: Researchers are now beginning to questions the bases for age distinctions in long-term care and to identify similarities between nonelderly and elderly persons with long-term services needs (Zola, 1988). This report shows that the population with long-term services needs is more evenly distributed across the life span than is generally acknowledged. Furthermore, in terms of other indicators of disability and hospital utilization, the characteristics of community-resident nonelderly and elderly persons with long-term services needs are in fact the same. Therefore, the needs of the total long-term care population should be acknowledged more adequately in research and policy efforts. The high cost of caring for the elderly is often given as a reason for the focus of long-term care policy on the elderly. Based on this analysis, acute medical services costs, and possibly long-term services' costs, can be expected to be similar for community-resident nonelderly and elderly persons with assistance needs in basic life activities. Loew, R., Knoll, J., Freud, E., Wells, A., et al. Support for Families of People with Disabilities: Bibliography and Resource Guide. Cambridge: June 1990. Available from: Human Services Research Institute, 2336 Massachusetts Avenue, Cambridge, MA 02140; 617-876-0426; 81 pages plus appendices, $15.00. Summary: This bibliography is one piece of a larger effort to provide consumers, policy makers, service providers, and advocates with information related to the development of family supports. This document addresses pertinent issues relating to family support including those which have a direct relationship on the financing of assistive technology--information on state stipends or cash subsidy programs; estate planning; home care financing; health care financing; effective advocacy; dependent care tax provisions and policy; trusts and contributions, and much more. Three appendices provide additional information concerning family support. The first appendix contains a list of journals and newsletters that address family support. The second appendix presents a list and description of directories that publish nationwide information. The last appendix contains the names, addresses, and telephone numbers of organizations and agencies which provide information and/or services specific to children with chronic illness and disabilities and their families. Target Audience: Consumers, families, practitioners, advocates, and policy makers. Issues Raised/Conclusions: This bibliography and resource guide should be used in conjunction with the Family Support Services in the United States: An End of Decade Status Report (HSRI, 1990). McManus, M. Understanding Your Health Insurance Options. A Guide for Families Who Have Children With Special Health Care Needs. Bethesda, MD: 1989. Available from: Association for the Care of Childrens' Health, 7910 Woodmont Suite 300, Bethesda, MD, 20814; 301-654-6549; $3.95 Summary: This consumer guide is aimed at helping families assess their insurance needs and understand various types of insurance policies. Section One addresses factors affecting insurance choice, recommended pediatric benefits and making a final decision. Section Two describes private insurance the major distinctions among traditional health plans, health maintenance organizations and preferred provider organizations. Section Three presents public insurance options under state Medicaid and Title V Programs for Children with Special Health Care Needs. The Fourth Section includes a case study comparing enrollment requirements, costs and benefits in two traditional and two HMO plans offered to federal employees in 1987. This section also presents a hypothetical family profile comparing the four insurance plans. Blank insurance plan comparison and cost worksheets are included in the appendix. This publication is a good introduction for families trying to tackle the complex topic of health insurance. Target Audience: Individuals with disabilities and their families, Title I funding coordinators. Mendelsohn, S. Financing Adaptive Technology: A Guide to Sources and Strategies for Blind and Visually Impaired Users. Available from: Smiling Interfaces, P.O. Box 2792 Church Street Station, New York, NY 10008-2792; 212-222-0312; 207 pages, $23.00. Available in all types and audio, specify format. Summary: This guide focuses on the sensory aids and service systems that are of particular concern to individuals with visual impairments; however, everyone interested in the financing of assistive technology and related services will find this resource a good source of financing strategy suggestions, many of which are not commonly known to consumers and professionals. Mendelsohn reviews the opportunities for self-funding and third party financing which exist in vocational rehabilitation, social security, special education, veterans benefits, non-profit and governmental loan guarantee programs, tax deductions, credit, foundations, civic organizations and more. The book explains when and how each of these can play a role, and what must be known and done to incorporate each into a successful acquisition strategy. The book also analyzes issues and problems that may arise in various funding streams. Written by a consumer who is an attorney and rehabilitation practitioner, the material brings a unique perspective to the area of funding. The analysis of legislation is especially valuable, since it takes an advocate's approach. The guide is fully documented, with extensive legal, bibliographical, and other resource information. Target Audience: Public or private agencies serving individuals who are blind and visually impaired, advocates, practitioners, policy makers. Issues Raised/Conclusions: The author defers any real analysis of major payment streams in the health care reimbursement system (primarily Medicare). This is to be expected as sensory aids are not often reimbursed in medical systems. Therefore, the reader is cautioned not to overlook the importance of medical reimbursement options when purchasing other types of assistive technology. Mendelsohn, S. Payment Issues and Options in the Utilization of Assistive Technology. Washington: March 1989. Available from: Electronic Industries Foundation Rehabilitation Engineering Center, 1901 Pennsylvania Avenue, Suite 700, Washington, D.C. 20006; 18 pages. Summary: This is a complete and very detailed report on the financing structures that currently exist for individuals as end users to obtain assistive technology. Specifically it discusses how to develop state-and other technology service delivery models; methods for assessing available resources; criteria for determining an individual's need for technology; and standards for measuring professional training, product evaluation and the overall success of funding programs. Target Audience: Individuals with disabilities, program administrators, funding coordinators, advocates. Issues Raised/Conclusions: The extreme depth of discussion about the strengths and weaknesses of Vocational Rehabilitation means a reader will not need to look elsewhere to complete his or her research. Mendelsohn's conclusion is that, if you can cut through the bureaucracy, there are surprising opportunities for Vocational Rehabilitation funding. He suggests there is an advantage to funding through Vocational Rehabilitation over other public funding sources and this is that the eligibility criteria and decision makers are better known. The work also discusses, in a clear and complete manner, the advantages and disadvantages of loan and other credit models. The chapter is especially helpful because it provides listings of additional resources for the advanced reader to continue his or her research. Mendelsohn also suggests that tax deductibility of assistive technology may be the most universally applicable source of subsidization we have yet. Furthermore, tax deductions to charities would be extremely valuable. Another essential change suggested by the author is to assure that buildings, software, computers etc. are accessible from the very early stages of design. Metropolitan Center for Independent Living. Used Equipment Marketplace: A Strategy for Cutting Equipment Costs. St. Paul, MN: 1989. Available from: Metropolitan Center for Independent Living, 1619 Dayton Avenue, St. Paul, MN 55104; 612-646-8342, TDD: 612-646-6048; 15 pages, appendices, and bibliography, $9.00. Summary: This booklet describes a, "used equipment referral service," (UERS) or clearinghouse, which is operated by the center. The UERS matches people who want to donate or sell used equipment with people who need equipment. The service is a referral system only, and the center does not store any equipment in its own or other facilities. The booklet contains all of the components necessary to establish a UERS, including the various forms, sample needs assessment, recommendations for funding, and sample budget. Target Audience: Title I funding coordinators, program planners. Morris, M. and Golinker, L. Assistive Technology: A Funding Workbook. Washington: January 1991. Available from: RESNA Press, 1101 Connecticut Avenue, N.W., Suite 700, Washington D.C. 20036; 202-857-1140; 200 pages, appendices and references. Summary: This resource is a task-oriented workbook to assist states in creating a roadmap of federal-state government funding programs, private insurance and other sources while coordinating the involvement of all potential stakeholders. The book is divided into two parts. Part I, A Roadmap to Funding Sources, is devoted to understanding funding streams and creative ways to eliminate current funding barriers. Part II, An Outline of Federal Laws and Rules, identifies and interprets specific sections of the laws and rules that are resources for assistive technology funding. The knowledge gained from this outline should be used as a tool in a careful and comprehensive review of the Medicaid, Special Education and Vocational Rehabilitation programs operating in each state. This workbook will assist Title I States (P.L. 100-407) to identify funding barriers to assistive technology, by supplying a standard -- the scope of the federal laws and rules -- against which states and local laws and rules, interpretations and practices can be measured. A comparison will result in the identification of inconsistent state- or locally- created funding barriers. By providing information about the full scope of each program in relation to assistive technology funding, states can negotiate the formal elimination of the barriers with responsible state and local government agencies and/or the state legislature. Target Audience: All funded Title I States will receive two complimentary copies through the RESNA TA Project. The workbook is highly recommended for advocates, program administrators, consumers and families, practitioners, technology manufacturers and dealers and state agency officials. Issues Raised/Conclusions: In the past twenty-five years, Congress has established over thirty programs that affect Americans with disabilities. There are over a dozen agencies on the federal level charged with the responsibility of managing these programs, interpreting Congressional mandates, and monitoring state implementation. Federal support for individuals with disabilities continues to grow and become more complex. It is important to realize that the variety of funding options provides consumers with multiple opportunities for funding and reimbursement. Muscular Dystrophy Association. Funding of Non-Vocal Communication Aids: Current Issues and Strategies. Available from: Muscular Dystrophy Association, Patient and Community Services Department, 810 Seventh Avenue, New York, NY 10019; 212-586-0808; 30 pages. Summary: This paper outlines a four-step procedure to obtain funds for communication aids: self-evaluation; professional education; client evaluation; and exploration of funding sources and strategies. The paper includes an exhaustive list of funding options, combined with key procedures and suggestions recommended for specific sources. The paper also lists insurance companies that have funded augmentative communication devices. Target Audience: Parents, individuals with disabilities. National Information Center for Children and Youth with Handicaps. "Technology: Becoming an Informed Consumer." News Digest, (November 13, 1989). Available from: National Information Center for Children and Youth with Handicaps (NICHCY), P.O. Box 1492, Washington, D.C. 20013; 800-999-5599; 20 pages. Summary: This issue of News Digest targets parents of children with disabilities and addresses some of the most important issues related to the use and funding of assistive technology that are commonly overlooked in other resources. The digest contains six articles including "Becoming an Informed Consumer," "Integrating Technology into a Student's IEP," and "A Parent's Perspective," which are oriented to helping parents through the financing maze and guiding parents in understanding the implications of technology in the lives of children with disabilities. The article on financing, "Starting the Funding Process," serves as an overview of the options available but is not intended to be all inclusive. The newsletter contains a bibliography, and lists organizations, clearinghouses, magazines, newsletters, national information service providers, computerized databases, and product availability resources. Target Audience: Parents, teachers, state education agencies, consumer advocates. Issues Raised/Conclusions: Parents need to become informed consumers of assistive technology. This process begins with an understanding of the potential benefits of assistive technology in the lives of their children with disabilities. Ostrow, P., Spencer, F. and Johnson, M. The Cost-Effectiveness of Rehabilitation: A Guide to Research Relevant to Occupational Therapy. Rockville, MD: 1987. The American Occupational Therapy Association, Inc., 1383 Piccard Drive, Rockville, MD 20850; 170 pages, extensive references, appendices and charts, $25.00 (members) $32.50 (nonmembers). Summary: This is a guide to research related to rehabilitation, including occupational therapy. The material covers formal cost-effectiveness and cost-benefit studies involving multidisciplinary rehabilitation, including the provision of assistive technology and related services. Thirty abstracts display the state-of-the-art in research on cost-effectiveness and cost-benefits. Each abstract is accompanied by comments from a panel and a cost-effectiveness consultant's critique. Target Audience: Students, professionals, and policy makers will want to use this book to heighten their awareness of cost-effectiveness methods. Issues Raised/Conclusions: The authors support the finding that there is a significant lack of cost-effectiveness and cost-benefit information in rehabilitation and that most of the research emphasis is overwhelmingly toward effectiveness studies. Paralyzed Veterans of America. Tax Incentives for Cost of Providing Access to Individuals With Disabilities. Washington: December 1990. Available from: National Service Office, 801 Eighteenth Street, N.W., Washington, D.C. 20006; 202-USA-1300, 202-785-4452; brochure and fact sheets. Summary: This brochure explains recent changes in the tax code which will enable businesses to make accessibility improvements. Congress legislated an annual tax credit of $5,000 "for the purpose of enabling ... eligible small businesses to comply with applicable requirements under the Americans with Disabilities Act of 1990." The amount which may be taken as a credit is 50% of the amount exceeding $250 but less than $10,000 per tax year [Section 44 of the Internal Revenue Code]. Any qualified expenditures made after November 5, 1990, are eligible for the Section 44 credit. Additionally, Section 190 of the Internal Revenue Code allows $15,000 to be deducted annually for qualified architectural and transportation barrier removal expense [Previously, Section 190 provided a $35,000 tax deduction]. This provision is in effect beginning in the tax year 1991. These changes to the tax code are included in P.L. 101-508, the Omnibus Budget Reconciliation Act of 1990. Target Audience: Consumers, consumer advocates, employers, job placement personnel, including job coaches, and rehabilitation engineers. Issues Raised/Conclusions: This tax credit can be used to promote accessibility for both consumers and employees with disabilities. Peltz Strauss K. Telecommunication Issues for Disabled Person: The Role of Federal and State Regulation. Washington, D.C.: February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 26 pages. Summary: This paper is devoted to federal involvement in and reaction to the restructuring of the telecommunication industry. The paper reviews the Telecommunications for the Disabled Act of 1982 and its implementation and regulation and looks at state and local programs to distribute Specialized Customer Premises Equipment (SCPE) which were developed in response to the need for people with disabilities to access the telephone network, and deregulations resulting from the AT&T divestiture. Whether these programs have succeeded and how they can be improved is also examined. The paper reviews various approaches for reducing telephone charges to consumers for equal access. Finally the paper addresses closed and open television and movie captioning as a means of expanding communication to individuals who are hearing impaired and deaf. Target Audience: All individuals concerned with fostering access to, and availability of useful and affordable technology for individuals with sensory disabilities. Issues Raised/Conclusion: Most federal and states efforts have been focused on improving telecommunication access to individuals who are deaf and hearing impaired. Little has been done to ensure access for persons with mobility and visual impairments and other disabilities. Additionally, as many as thirty-six states have detariffed specialized equipment; yet programs to provide such equipment at reduced rates have sprung up in only seventeen states. The majority of persons with disabilities are not covered by the vast majority of those programs. Most of these programs provide no specific funding for the research and development of new technologies in specialized customer equipment. Until states take a more active role in ensuring telecommunications access, other types of legislation will be urgently needed to protect the interests of individuals with disabilities. Phillips, L. Consumer Needs Assessment: A Qualitative Study of the Needs of People With Disabilities; Results of the First Year of the Five-Year Study. Washington: 1990. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Avenue, N.W., Suite 700, Washington, D.C. 20006; 202-955-5810, TDD: 202-955-5836; 14 pages and appendix. Summary: This report contains the results of the first year of a five-year study to determine the adaptive equipment or technological needs of individuals with disabilities, using input from consumers as the major source of information. The study, when completed, will identify the needs and concerns of consumers with disabilities across the country from virtually all categories of functional limitations. Target Audience: Consumers, advocates, device manufacturers, rehabilitation professionals, policy makers, and the general public. Issues Raised/Conclusions: Although it is too early in the study to reach any conclusions, several patterns have emerged. First, the single issue identified most often is the need for a better understanding of the needs of people with disabilities. Second, group participants did not see new technology or new "gadgets" as the answer to their problems. Instead, consumers would simply like to have the means to afford technology that already exists. Third is the awareness of people with diverse disabilities of the importance of the computer. The computer can contribute to increased independence, employment, and convenience for all. Consequently, attention should be given to maintaining and increasing universal accessibility to computers. Prentke Romich Company. How to Obtain Funding for Augmentative Communication Devices. Available from: Prentke Romich Company (PRC), 1022 Heyl Road, Wooster, Ohio 44691; 800-262-1084; 22 pages, $5.00. Summary: The booklet is a step-by-step "how to" guide to successful funding of devices. Based on experiences and successes of PRC's Funding Department, the booklet covers the various elements related to funding including basic terms, funding options, components of a medically based request, outlines for letters of medical necessity, sample letters, and supportive letter request forms. Target Audience: Parents, individuals with disabilities, advocates, practitioners, equipment suppliers, Title I state funding coordinators. Issues Raised/Conclusions: This booklet emphasizes the kind of information which is necessary to document "medical necessity" for augmentative communication devices which pertains to other forms of assistive technology. Reeb, K. Assistive Financing for Assistive Devices: Loan Guarantees for Purchase of Products by Persons with Disabilities. Washington: January 1989. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 19 pages, references and appendices. Summary: This paper documents the loan guarantee concept, introduces some existing models, and discusses some program elements to replicate and others to avoid in financing assistive technology. The term "assistive financing" implies that the consumer will become eligible for market rate financing in the future, after demonstrating a responsible credit rating under a loan guarantee program. In credit financing, the lender provides money. The interest rate charged to the consumer reflects the lender's costs and profit, plus security against the loan not being repaid. Under the loan guarantee concept, a third party participates in the transaction and assumes some of the risk, thus allowing the lender to reduce the costs of providing credit financing. The savings can then be passed on to the consumer. This information is drawn from a sample of programs across the country currently offering loan guarantees to purchase assistive technology, including Canon USA, the General Electric Capital Corporation, and Telesensory Systems, Inc. Target Audience: Federal and state policy makers, private financial institutions. Issues Raised/Conclusions: Reeb concludes that private financial institutions are receptive to innovative assistive financing programs and that these programs encourage consumers to become more active participants in the purchase of assistive products. Although assistive financing holds promise, credit is not used extensively to pay for assistive technology. There is a need to further explore ways to attract the substantial resources of the credit industry into these product markets. Federal incentives to stimulate access to credit financing of assistive technology should be further explored. Reeb, K. Enhanced Consumerism Within Commercial Rehabilitation Product Markets: A Goal for Independent Living. Washington: January 1986. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Avenue, N.W., Suite 700, Washington, D.C. 20006; 202-955-5810, TDD: 202-955-5836; 36 pages, references and appendix. Summary: This paper focuses on encouraging more active participation by individuals with disabilities as consumers of commercial assistive technology aids and devices. The paper introduces a compilation of exemplary programs involved in providing such services to support individuals with disabilities as active consumers. A number of approaches were studied that assist individuals select, procure, and utilize commercial assistive technology. Target Audience: Program planners, administrators and managers of independent living services, device manufacturers, distributors, advocates, individuals with disabilities. Issues Raised/Conclusions: Reeb cites financing of assistive technology as the most important problem encountered by program planners and administrators. The paper profiles several exemplary financing programs that provide alternatives for individuals with disabilities (i.e. revolving loan funds, low interest loans, no interest loans). Each of the programs profiled is different, yet all have innovative and successful approaches to consumer financing for assistive technology. Most importantly, each loan program encourages a more active consumer role. The approaches used by these organizations to support consumerism merit close examination within commercial markets for rehabilitation technology service delivery. The paper also includes information on clearinghouses, training services, maintenance and repair services, used equipment clearinghouses, and group purchasing opportunities. The appendix includes a complete directory of all programs profiled. Reeb, K. Final Report of the National Task Force on Third-Party Payment for Rehabilitation Equipment. Washington: February 1987. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 49 pages, appendix which lists Task Force participants. Summary: This report discusses problems related to third party payment of assistive technology and related services, and outlines potential strategies for dealing with these problems. Target Audience: Policy makers, individuals involved with third-party payment systems, individuals with disabilities, and advocates. Issues Raised/Conclusions: The report offers valuable suggestions for resolving many of the concerns raised by the National Task Force on Third Party Payment for Rehabilitation Equipment, and presents ideas which warrant further investigation and/or implementation. Recommendations of the Task Force include: . Public policy decisions on third party payment systems should consider increasing integration of case management into third party payment systems and expand general familiarity with technology among case managers; . There is a need to generate more reliable information tailored to the quality assurance needs of clinical/payment decision-makers; . Public policy should encourage integration of assistive technology specialists into the service delivery system; and . Public policy decisions regarding third party payment systems should pursue strategies directed toward improved communication among all parties interdependently involved in selection/payment for rehabilitation equipment. Reeb, K. An Overview of Medicaid Reimbursement for Rehabilitation Equipment in the United States. Washington: April 1988. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 11 pages, references and appendices. Summary: This overview of the Medicaid program is a starting point for readers wishing to familiarize themselves with their respective state programs. The paper helps clarify the types of assistive technology for which Medicaid is a likely payment source and indicates situations where Medicaid is not a payment alternative. The paper combines information taken from review of the literature, including federal Medicaid regulations and state manuals, with information received through a survey of administrative representatives from each of the fifty state Medicaid agencies and the District of Columbia about their payment policies and procedures related to "rehabilitation equipment." Responses were received by 88% of the agencies contacted. Target audience: Consumers, family members, Title I state funding coordinators, practitioners, equipment suppliers and others who deal with or work within the Medicaid system. Issues Raised/Conclusions: There is tremendous variation among state Medicaid programs. The most important conclusion gained from the study is that it is essential for anyone dealing with Medicaid to develop lines of communication with state Medicaid personnel, particularly those who deal with prior authorization and policy decisions. Important amendments to Medicaid's Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program were enacted after this paper was published. Because these amendments directly affect the treatment of assistive technology in the Medicaid program, the reader is cautioned against using the information contained in this paper as a deciding factor about whether or not to seek Medicaid funding for assistive technology. Reeb, K. Private Insurance Reimbursement for Rehabilitation Equipment. Washington: July 1987. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 15 pages and bibliography. Summary: This paper provides a basic understanding of private insurance as an agreement between equal parties in a market transaction based on an assessment of risk. The paper outlines four types of private insurance: health insurance; disability insurance; workers compensation; and liability insurance. Target Audience: This overview of health insurance will be helpful to persons with disabilities who want to understand the insurance industry's perspective on insurance. Issues Raised/Conclusions: The paper suggests a two-prong approach to understanding how private insurance might pay for assistive technology: First, study the various insurance policies under which one is covered. Second, identify and develop rapport with key decision makers, particularly those who represent insurance companies. Policy recommendations for improving access to private insurance are beyond the scope of this paper. Reeb, K. Procurement of Durable Medical Equipment under the Medicare Part B Program. Washington: June 1985. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 15 pages and bibliography. Summary: This paper describes the Medicare Part B programs with particular emphasis on coverage for the rental or purchase of durable medical equipment which is "medically necessary." Assistive technology can be covered under Medicare Part B as durable medical equipment, prostheses, or orthotics. Target Audience: Policy makers, advocates. Issues Raised/Conclusions: Medicare excludes products such as sensory aids, environmental control and communication devices and convenience or comfort items. A fairly extensive set of guidelines have been generated by the Health Care Financing Administration to assist Medicare carriers when making reimbursement decisions about coverage and about how maintenance, repair, replacement and delivery costs are covered. Reeb, K. Revolving Loan Funds: Expanding Equipment Credit Financing Opportunities For Persons with Disabilities. Washington: June 1987. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 46 pages, references and appendices. Summary: This guide profiles in detail the revolving loan fund concept. Staff from several organizations with existing revolving funds share the strengths of their programs while commenting about areas in need of improvement. Revolving loan funds can be used either to provide equipment loans directly or to guarantee commercial loans. The central feature of the revolving fund model is that it relies upon perpetuation of at least the base fund used to supply financing which distinguishes it from grant programs where a pool of money is exhausted and replenished periodically from external sources. In addition to this central feature, there is a wide range of possibilities for designing the various parts of the loan (terms, title, interest, down payment, administrative costs, payment schedule, insurance, etc.). Target Audience: Consumers, private industry, program planners, policy makers. Issues Raised/Conclusions: The author concludes there are a significant number of persons with disabilities who could effectively handle the financial responsibilities associated with purchasing needed equipment. The revolving loan fund is a sound alternative to financing assistive technology. Reeb, K., and Stripling, T. Payment for Assistive Devices by the Veterans Administration. Washington: July 1987. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 16 pages and references. Summary: The Veterans Administration is one of the largest purchasers of assistive devices. It is also a highly centralized system for providing a large volume of equipment. This paper explains the VA structure and the decision-making responsibilities in detail in an effort to lead to better access to assistive technology with the ultimate goal of procuring appropriate equipment in a timely manner. Despite the volume of assistive technology transactions, the VA has a fairly decentralized decision-making system. The VA invests in support of its field personnel through development of product standards and technical specifications, product evaluation, on going training of prosthetics personnel, program evaluation, and other support. Target Audience: Veterans who require assistive technology, product developers, manufacturers, suppliers, and contractors. Issues Raised/Conclusions: A comparative analysis of the VA program to other financing programs serving other populations is beyond the scope of this resource. Further examination of the funding criteria under the VA program would be valuable especially mechanisms by which newly developed technology are provided by the VA system and whether such new technologies are being adequately incorporated into the lives of veterans with disabilities. Reed, P. Funding Assistive Technology Devices: A Resource Manual for Oregon. Roseburg, Oregon: April 1990. Available from: Oregon Technology Access Project, 1871 NE Stephens, Roseburg, Oregon 97470; 503/440-4791; 37 pages, bibliography and appendices. Summary: This is a manual meant to assist parents and professionals in Oregon to identify and pursue assistive technology funding sources. The information in the manual specifically addresses computers, augmentative communication devices and powered mobility. Additionally, it provides names, addresses, references to other sources, sample forms used to apply for funding sources in Oregon and sample letters used to prepare your case. Target Audience: Individuals with disabilities living in Oregon and their families, information and referral sources, providers of assistive technology, professionals from other states interested in designing a similar resource guide. Rehabilitation Engineering Society of North America. Rehabilitation Technology Service Delivery: A Practical Guide. Washington: 1987. Available from: RESNA Press, 1101 Connecticut Avenue, N.W., Suite 700, Washington, D.C. 20036; 202-857-1199; 175 pages. Summary: This guide, written by rehabilitation technology service delivery providers, was developed to document the state-of-the-art in rehabilitation technology services delivery,and to create a manual that would help in the development of new technology services delivery programs as well as increase the effectiveness of existing programs. Based on practical experience with more than 30 exemplary rehabilitation technology programs, effective models of services delivery are described. The guide emphasizes the necessary questions to be addressed in planning, developing and implementing a technology services delivery program including experience-based rules of thumb. Chapter Five, "Funding Sources and Strategies," deals with three central issues: funds to start a rehabilitation engineering program and sources that might initially be sought; identifying and pricing capabilities that will earn money; and identifying the needs for which payers will spend their funds. Target Audience: Current practitioners who want to make their operations more efficient as well as those entering the field. Issues Raised/Conclusions: The guide concludes with a review of the major payment sources, and notes one important common denominator--the thread common to any payment source is its reliance on individuals for decision making. No matter how steeped it may be in policies and procedures, no payment program can totally divorce the human element from its decision-making process. Rehabilitation Engineering Society of North America. Section 508: Its Effect on States Funded Under P.L. 100-407. Washington: November 1990. RESNA Technical Assistance Project, 1101 Connecticut Avenue, N.W., Suite 700, Washington, D.C. 20036; 202-857-1199; 6 pages. Summary: This publication contains questions and answers about Section 508 of the Rehabilitation Act, as amended by P.L. 99-506, and the effect 508 will have on States funded under P.L. 100-407, the Technology-Related Assistance Act for Individuals with Disabilities Act of 1988. Section 508 was adopted to promote equal access for people disabilities to federal jobs, including public information services and electronic tools. States funded under Title I will be required to demonstrate that they are in compliance with Section 508 in the third year of their projects in order to be eligible to apply for extension grants. Target Audience: Title I state funding coordinators. Issues Raised/Conclusions: The federal government is the single largest purchaser of computers and other high tech office equipment. This law should stimulate development, manufacturing and marketing of equipment which can be used--or adapted for use--by people with disabilities. Rehabilitation Engineering Society of North America. Workshop on Funding for Assistive Technology. Washington: March 1990. Available from: RESNA, Inc., 1101 Connecticut Avenue., N.W., Suite 700, Washington, D.C. 20036; 202-857-1199; six cassettes: $30.00, plus $5.00 for shipping and handling. Summary: These are tapes of the presentations at a workshop designed for the first nine states to receive funding under the Technology-Related Assistance Act, (P.L. 100-407). The sessions include: "Perspectives on Private Insurance: The Who and How of Decisions on Coverage;" "Medicaid: Federal Mandates/State Options;" "Medicare/Medicaid Combinations and other Public Sources;" "Programs That Fund Technology for Kids; Funding Technology for Adults;" and "Assistive Technology in Developmental Disabilities Programs." Target Audience: Title I funded states, policy makers; consumers; practitioners, advocates, third-party payors, state program administrators. Issues Raised/Conclusions: The presenters include professionals who have had a significant impact on the public policy surrounding the funding of assistive technology. They provide a basis for states in reviewing their own funding streams, identifying gaps in public and private sector in financing assistive technology, and providing recommendations on ways to better access funding. Common to all the presentations is the belief that many funding opportunities exist at both the federal and state level; however the opportunities are uncoordinated, lack continuity and continuum in service delivery, are not readily available to parents and consumers, and are fraught with funding barriers. Case examples are provided throughout. Rosenfeld, L., Worley, G., and Lipscomb, J. Saving Money and Getting Help: Advice for Families of Children with Spina Bifida and Other Health Problems. Newton, NC: 1987. Available from: Spina Bifida Association of North Carolina, 1427 Robin Lane, Newton, NC 28658; 100 pages, $8.50. Summary: This manual, the result of a project of the North Carolina Spina Bifida Association, contains practical advice for any family with a child with disabilities. The project's goal was to help families of children with disabilities reduce their medical bills while getting the medical care and services their children need. Sixty families were taught management and advocacy skills which enabled them to work more effectively with doctors, hospitals, health insurance companies, and social services agencies. The manual includes a summary of the costs of raising a child with spina bifida, which can serve as an example of the large costs of caring for a child with a chronic health problem; tips on reducing hospital and doctor bills; tips on improving access to private health insurance; guides to public programs and family support programs; income tax tips; advocacy tips; and guides for planning for long term security. Target Audience: The manual is dedicated to parents as advocates. Although the information is specific to North Carolina, many of the recommendations will be helpful to all families with children with disabilities. The comprehensive and well-organized nature of this book contributes to making it an invaluable resource for families. Issues Raised/Conclusions: Assistive technology is not specifically mentioned in the manual. Ruggles, V. Funding of Mobility Equipment: Current Issues and Strategies. New York: September 1981. Available from: Muscular Dystrophy Association, Patient and Community Services Department, 810 Seventh Avenue, New York, NY 10019; 212-586-0808; 13 pages, appendices and resources. Summary: This paper outlines a four-step procedure to obtain funds for mobility equipment. The steps are: self-evaluation; expanding information resources; advocacy; and exploring funding sources and strategies. The document provides a good overview of funding options, advocacy suggestions, and sample letters of support that parents and consumers may find useful. The resources listed, however, are outdated and are not considered the best funding resources. Target Audience: Parents, individuals with disabilities. Scadden, L.A. Communication Technology for Disabled People: Problems In the Marketplace. Washington, D.C. : February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 17 pages. Summary: This paper explores the causes of the gap between the potential and the reality in the use of technology by people with communication disabilities by describing some of the obstacles that currently limit the flow of communication technology and identifies some potentially useful tools for eradicating these obstacles. The paper begins with a good overview of the various types of sensory technology including technology for individuals with vocal disabilities. The author notes that the conclusions of the 1982 OTA study, Technology and Handicapped People associated with inadequate diffusion of rehabilitation technology to intended users still hold true for the current marketplace for technology. The causes can be roughly lumped into two categories, economic issues and policy issues. The author identifies several barriers to adequate diffusion of rehabilitation technology noting two primary causes: product price and uncertainty of payment. The paper then analyses the causes for the relatively high price of rehabilitation technology in an effort to directly address the concern and offer some solutions. A number of exemplary private sector programs that have been established for the purpose of acquiring assistive technology are described including price subsidies, low interest loans, and lease/rentals. Finally the papers considers the status of the recommendations from the 1982 OTA report. Target Audience: All individuals concerned with fostering access to, and availability of useful and affordable technology for all people. Issues Raised/Conclusions: The author concludes that efforts must be made to identify and to implement program policies that address the marketplace problems of communication technology. Using the example of the California State Public Utilities Commission requiring each telephone company operating in California to provide TDDs to telephone users who are deaf or severely hearing impaired, the paper concludes that a combination of public and private sector action will be needed to attain optimal diffusion of this technology. Scarborough, D. Plans for Achieving Self-Support (PASS); A Workshop Trainer's Guide. Arlington, TX: 1990. Available from: Association for Retarded Citizens of the United States, P.O. Box 6109, Arlington, TX 76005; 52 pages. Summary: A PASS (Plans for Achieving Self Support) is an option available to individuals with disabilities receiving Social Security who enter or return to work. PASS is an income and resource exclusion that allows a person to set aside income and/or resources for an occupational objective without losing their benefits. The Trainer's Guide provides an easily understood explanation of the PASS work incentive. The guide provides good explanations of other work incentives available through Social Security. The guide includes presenter support materials, handouts, and a publications list. Target Audience: Consumers, professionals working with individuals with disabilities who are recipients of Social Security, Title I state funding coordinators, advocates. Issues Raised/Conclusions: PASS can be used to purchase assistive technology that is necessary for employment. Schlachter, G. Financial Aid for the Disabled and Their Families. San Carlos, CA: 1990. Available from: Reference Service Press, 1100 Industrial Road, Suite 9, San Carlos, CA 94070; 415-594-0743; 270 pages, $32.50 + $3.00 shipping. Summary: This document contains an annotated resource list of scholarships, fellowships, loans, grants, awards, and internships designed primarily or exclusively for persons with disabilities and their families. Included are state sources of benefits and reference sources of financial aids. Target Audience: Consumers, families, students, advocates, and policy makers. Scott, S., and Dennis, D. Payment of Occupational Therapy Services. Rockville, MD: March 1988. Available from: American Occupational Therapy Association, 1385 Piccard Drive, Rockville, MD 20850; $50 members, $65 nonmembers. Summary: This resource describes various forms of payment for occupational therapy services within state, federal and private payment systems. The book includes information on documentation, billing, coverage of durable medical equipment, and information on processing denials. It also contains strategies and resources to assist professionals in expanding current coverage in their local area. As is the case with assistive technology, many patients who need and receive occupational therapy have insufficient insurance coverage or none at all and must pay for services out-of-pocket. The report emphasizes the importance of providers in understanding health care financing options that may be available to consumers. Target Audience: Consumers, families, practitioners, OT's, advocates and policy makers. Tanenbaum, S. Engineering Disability: Public Policy and Compensatory Technology. Philadelphia: 1986. Available from: Temple University Press, Broad and Oxford Streets, Philadelphia, PA, 19122; 215-787-8787; 171 pages, $32.95 + shipping. Summary: Tanenbaum looks at the array of compensatory options provided to persons with the same physical need, the loss of an arm due to an amputation above the elbow--through various compensatory systems including the Veterans Administration system, Workers Compensation, and Social Security Disability Insurance with its link to Medicare, Vocational Rehabilitation, Medicaid, private health insurance, liability insurance, and private disability insurance. Although primarily interested in whether each of these systems will fund a relatively sophisticated electronic prosthesis called the Boston Elbow, she also considers other compensatory options such as monetary compensation, retraining (physical and psychological), and environmental changes (social and physical), as well as other prostheses under the option of replacements for the loss of the arm. Target Audience: Policy makers Issues Raised/Conclusions: This comparison across many compensatory systems is sharpened by the focus on the likely response to the same physical need. This focus allows Tanenbaum to identify incentives and competing constituencies which exist in different compensatory systems and which ultimately determine what kind of assistive technology individuals with the same functional impairment will be able to access. Descriptions of each compensatory program are based on aggregate figures where available and are supplemented with anecdotal information from interviews with participants in the various programs, primarily in Massachusetts (where the study was conducted) and at the Federal level. By comparing the logic of different systems, Tanenbaum's analysis shifts the focus from obstacles to funding in specific programs to the larger context of what is appropriate public policy for access to assistive devices. Tanenbaum shows how each compensatory system has different mandates with different eligibility criteria and fiscal constraints which shape the kinds of compensation which are offered. Trachtman, L. Innovative and Alternative Programs for Funding Assistive Technology, Special Session on Service Delivery. RESNA 13th Annual Meeting, Washington, DC. Washington: June 1990. , Available from: RESNA Press, 1101 Connecticut Avenue, NW, Suite 700, Washington, D.C. 20036, 202/857-1199, 24 pages. Summary: The paper includes six unique models for providing funding to purchase assistive technology including programs which provide low interest loans, loan guarantees, and loan subsidies including California Department of Rehabilitation Loan Programs, Telesensory Corporation, Maine's Adaptive Equipment Loan Fund, Electronic Aids Program of Associated Services for the Blind, the AFB Loan Program For the Kurzwell Personal Reader, Equipment Loan Fund for the Disabled of New York State. Background papers are included which represent considerations and challenges related to developing funding options (Reeb 1989; Ward 1989 monographs). Target Audience: Advocates, private industry, program planners, policy makers, agencies/organizations serving individuals with disabilities. Issues Raised/Conclusions: Trachtman concludes that consumers must take proactive roles to create alternative financing systems by identifying plausible models while noting risks and failures and begin to provide payment options for families. United States. Senate. Assistive Technology for Persons with Disabilities; Hearings Before the Subcommittee on the Handicapped, of the Committee on Labor and Human Resources. (S. HRG. 100-761). Washington: May 1988. Available from: Superintendent of Documents, Congressional Sales Office, U.S. Government Printing Office, Washington, D.C. 20402; 388 pages. Summary: This Senate document is the culmination of two days of hearings chaired by Senator Tom Harkin (IA), about the role that assistive technology devices and services can play in enhancing opportunities for people with disabilities. Target Audience: Policy makers, advocates, consumers, families, and practitioners. Issues Raised/Conclusions: The report provides many recommendations from witnesses to improve access to funding assistive technology, many of which did not become part of P.L. 100-407, the Technology-Related Assistance Act for Individuals with Disabilities. Key recommendations include: . Federal loan fund for assistive technology; . Amend the Internal Revenue Code to provide tax credits, accelerated write-offs or other incentives for businesses which purchase or lease assistive technology for employees with disabilities; . Amend the Internal Revenue Code to provide tax credits for individuals with disabilities who purchase or lease assistive technology; . Expand the definition of "medical necessity" to include reduction of functional dependence; . Amend Medicare and Medicaid to expand the definition of "durable medical equipment." Many problems related to assistive technology service delivery discussed in the hearings remain unresolved, including: . Gaps in service continuum; . Financing maintenance and repair services; . Improved quality assurance to increase decision making confidence of third-party funding sources; . Improved quality assurance in personnel training and product development; . Improved quality assurance in information networks; . Public education and professional training; and . FDA clearance obstacles. United States. Executive Office of the President, Office of Management and Budget. Catalog of Federal Domestic Assistance 1990. Washington: 1990. Available through the Superintendent of Documents, U.S. Government Printing Office, Washington, D.C. 20402; $38.00. Summary: The Catalog contains a listing of 1,176 financial and nonfinancial assistance programs administered by 53 Federal agencies. Program information is cross referenced by functional classification, subject, applicant index, deadlines for program application submission, and authorization legislation. The Catalog is published annually, usually in June, with an update usually published in December reflecting completed Congressional action on the President's budget proposals and on substantive legislation as of the date of compilation. The Catalog is also available on tape and diskettes through Federal Domestic Assistance Staff (WKU), General Services Administration, Ground Floor, Reporters Building, 300 7th Street, S.W., Washington, D.C. 20407. 202-708-5126. Target Audience: Consumers, families, advocates, practitioners, and policy makers. United States Government. General Services Administration, Clearinghouse on Computer Accommodation. Managing End User Computing For Users With Disabilities. Available from: Clearinghouse on Computer Accommodation, Information Resources Management Services, General Services Administration, Room 2022, KGDO, 18th & F Streets, N.W., Washington, D.C. 20405; 202-523-1906 Voice/TDD; 16 pages and appendices. Summary: This handbook presents guidance to federal employees on the policy implementing Section 508 of P.L. 99-506, The Rehabilitation Amendments Act of 1986, regarding electronic office equipment accessibility in federal procurements. The handbook provides information and extensive resources on: accessing accommodation requirements; policy and regulatory information, and accommodation products and training. Target Audience: Federal employees, policy makers. United States Government. Internal Revenue Service Publications. Available from the IRS Forms Distribution Center for your area, or by calling 800-TAX-FORM. Summary: Information about tax credits and deductions can be found in the following publications: Publication #502 Medical and Dental Expenses Publication #503 Child Care and Disabled Dependent Care. Publication #907 Tax Information for Handicapped and Disabled Individuals These publications clarify allowable deductions and credits for medical, dental, and dependent care expenses. Medical and dental expense deductions only apply to individuals who itemize on Schedule A (Form 1040) and whose medical expenses exceed 7.5% of adjusted gross income. Medical expenses may include payments for diagnosis, treatment, or prevention of disease; prescription medicines; insurance premiums; transportation and lodging to receive medical care; capital expenses for medical equipment; home modifications; improvement for property rented by a person with disabilities, special schools, etc. Target Audience: Consumers, families, advocates, practitioners, and policy makers. United States Government. Office of Technology Assessment. The Implications of Cost-Effectiveness Analysis of Medical Technology. Springfield, VA: August 1980. Available from: U.S. Office of Technology Assessment, National Technical Information Services, Springfield, VA 22161; 187 pages, appendices and references, $31.00. Summary: This report outlines options to aid in decisions concerning the possible use of cost-effectiveness analysis/cost-benefit analysis in federal health programs. Congress asked OTA to explore the applicability of cost-effectiveness analysis, cost-benefit analysis (CEA/CBA) to medical technology. Target Audience: Researchers, policy makers, program planners. Issues Raised/Conclusions: The OTA stresses that decision-making cannot be made solely on the basis of CEA/CBA and that other issues must be factored in. Decision-making could be improved, however, by the process of identifying and considering all the relevant costs and benefits of a decision. The report concludes that it is unrealistic to expect that CEA/CBA, in itself, would be an effective tool for reducing or controlling overall expenditures for medical care. United States Government. Office of Technology Assessment. Market for Wheelchairs Innovations and Federal Policy. Springfield, VA: November 1984. Available from: U.S. Office of Technology Assessment, National Technical Information Services, Springfield, VA 22161; 54 pages and appendixes, $17.00. Summary: This case study focuses on how federal government policies affect innovations in wheelchair characteristics. Through Medicare, Medicaid and the Veterans Administration, the federal government is a major purchaser of wheelchairs. The report indicates that overemphasis on price over performance in these government reimbursement procedures for a general manual wheelchair has probably discouraged innovation. Since manufacturers have difficulty selling a higher priced, higher quality manual wheelchair, they probably have little reason to produce one. Target Audience: Policy makers. Issue Raised/Conclusion: The report suggests that the policies of these three reimbursement programs may hinder innovation. Medicaid pays in full, but only for the least costly chair needed. Medicare pays only part of the allowable charge, which may itself be less than the actual charge. A supplier who accepts Medicare payment on assignment must agree not to demand in total more than Medicare's allowable charge. This policy creates an incentive to encourage a consumer to buy the "least costly model" that satisfies a given prescription. On maintenance and repair, the report notes that Federal payers currently focus their payment decisions on purchase price without considering maintenance and repair costs. Therefore decisions made on basis of total annualized costs would appropriately reward more durable models. United States Government. Office of Technology Assessment, Technology and Aging in America. Washington: June 1985. Available from: National Technical Information Service, U.S. Department of Commerce, Springfield, VA. 22161; 703/487-4660; 368 Pages and appendices; $50.00 plus shipping and postage. Summary: This report examines five major areas where assistive technology can be beneficial for elderly individuals: dementia, incontinence, hearing impairment, osteoporosis, and osteoarthritis. The study addresses: 1) the efficiency of drug treatment technology as a major resource for elderly persons with disabilities; 2) how to better tap into information technology for the elderly; 3) the need for assistive technology as a long term care service; 4) the effectiveness of cost containment efforts; and 5) the untapped potential of "in the home" and workplace technologies for elderly individuals with disabilities. Target Audience: Elderly individuals with disabilities and their families, advocates, rehabilitation professionals, device manufacturers, service providers. Issues Raised/Conclusions: Despite the huge potential of assistive technology for elderly individuals with disabilities it largely remains largely untapped. In the area of drug technology, the problems exist because of poor education for patients and service providers as to current options. In the area of information technology for elderly individuals, problems exist, first, because of the continued stereotype that the elderly are not receptive to new technologies and second because there is inadequate training provided on the equipment. As a result of the stereotype, has been little study done on the use of information technology for elderly individuals with disabilities. Technology is rarely used for long term care because the federal and state programs which fund these services tend to de-emphasize assistive technology. Furthermore, much of the technology used in the home is low cost and can often be financed through new equity based financing instruments. United States Government. Office of Technology Assessment. Technology and Handicapped People. Washington: 1982. Study for U.S. Congress, Office of Technology Assessment, 600 Pennsylvania Avenue, S.E., Washington D.C. 20510. Available from: (PB 83-172 056) Springer Publishing Company, 536 Broadway, New York, NY 10012; 212-431-4370; 203 pages and references, $29.50 + 2.50 shipping and postage. Summary: At the request of the Senate Committee on Labor and Human Resources, the Office of Technology Assessment (OTA) conducted a comprehensive assessment on technology and individuals with disabilities. The purpose of the project was to examine policies and specific processes through which technologies are developed, evaluated, diffused, delivered, and used. The Committee asked OTA to take a comprehensive look at the role played by technology, identify problems and suggest policy options for Congressional consideration. Target Audience: Policy makers, advocates, practitioners. Issues Raised/Conclusions: The reports' major conclusion is that despite the existence of numerous problems related to developing technologies, the more serious questions are social ones--of financing, of conflicting and ill defined goals, of hesitancy over the demands of distributive justice, and of isolated and uncoordinated programs. In the area of funding, Chapter 9, "Delivery, Use, and Financing of Technologies," provides a good overview of funding programs and issues. The report indicates the following problems related to funding: . lack of coordination and consistency in funding sources; eligibility requirements and rules for payment for similar technologies; . gaps in services due to definitions in eligibility; . no access/funds for maintenance and repair services; . lack of consumer involvement in the provision of assistive technology; and . shortage of rehabilitation professionals. Although this study was conducted in 1982, readers will find the information to be very relevant. The report continues to be an excellent analysis of the entire field of assistive technology, and the issues raised are as pertinent today as they were ten years ago. Ward, C. Design for All Consumer Needs Assessment Project Year 2; Results of the Second Year of a Five Year Study. Washington: July 1990. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Avenue, N.W., Suite 700, Washington, D.C. 20006; 202-955-5810, TDD: 202-955-5836. Summary: This paper summarizes the results of Year Two of a five-year project created to learn directly from consumers about their experiences with products, what design features make a product work for them, and what features make a product inaccessible. A focus group research methodology was used to learn about the products. Time-limited meetings were held in which a trained moderator posed a broad range of questions to small groups of participants (product users). Throughout the five-year project, EIF/REC is collecting data on both general consumer products, such as computers, telephones, televisions and ovens, as well as equipment specially designed for persons with disabilities. Target Audience: The reports are distributed to device manufacturers, rehabilitation professionals, policy makers, and the general public. Issues Raised/Conclusions: Persons who were "newly" disabled were less likely to view assistive technology as an important element in their day-to-day existence. Those who have lived with disabilities over a period of time generally seem more comfortable and attuned to assistive technology. No one appears to view technology as a panacea. Rather, it is a tool -- one that many of the group members prefer using over other alternatives. Group members commented repeatedly on how much individuals with disabilities differ and that there is no easy way to characterize group members. Participants were able to identify specific product features that both positively and adversely influence their ability to operate equipment. They include cost, durability/strength, maneuverability, ease of assembly and disassembly, repair issues, height, location, size texture, color and brightness of controls, safety features, simple instructions, aesthetics, and the ability to keep devices anchored while in use. Consumer involvement is paramount to every level of assistive technology services delivery. Encouraging more active participation by individuals with disabilities as consumers of commercial assistive technology is an important and appropriate goal for public policy development in technology and related services. Ward, C. "Subsidies from Nonprofit Agencies," an excerpt from Subsidy Programs for Assistive Devices. Sensory Aids Foundation: February 1990. Available from: Electronic Industries Foundation Rehabilitation Engineering Center, 1901 Pennsylvania Avenue, Suite 700, Washington, D.C. 20006. 5 pages. Summary: Provides in-depth description of the assistive technology funding subsidies available from Associated Services for the Blind, Braille Institute of America, Opportunities for the Blind, Foundation for the Advancement of the Blind, Inc. and Blind San Franciscans, Inc. The excerpt is especially valuable because it lists all eligibility requirements mandated by the different funding sources. Target Audience: Individuals who are blind or visually impaired and their families, information and referral services, program administrators. Ward, C. Subsidy Programs for Assistive Devices. Washington: September 1989. Available from: Electronics Industries Foundation, Rehabilitation Engineering Center, 1901 Pennsylvania Ave., N.W., Suite 700, Washington, D.C. 20006; 29 pages and a listing of subsidy programs. Summary: This monograph examines subsidy programs as an alternative payment strategy for assistive devices. These programs lower the cost of technology, or in some cases, provide it for free. A subsidy may be a grant, a discount, or a rebate and may target a specific disability group or include other eligibility criteria. The report defines subsidies, identifies different models, and describes obstacles to program development, implementation, and evaluation. The document also covers the important philosophical issues which must be raised when considering the establishment of programs that provide subsidies to persons with disabilities. Through interviews and written materials, this study uncovered twenty-one subsidy programs for consumers. The subsidies are offered by community service organizations, charities, manufacturers, partnerships between device manufacturers or retailers and voluntary organizations, private non-profit corporations, and public utility regulating agencies. Target Audience: Community service organizations, charities, manufacturers, device manufacturers or retailers, voluntary organizations, private, non-profit corporations, and public utility regulating agencies. Issues Raised/Conclusions: Subsidy programs can respond to the problem of providing technology to persons with disabilities who may have difficulties financing such devices. However, they are not without their obstacles. For example, raising money for initial start up and support of an ongoing equipment program can be difficult. In addition, staffing, information dissemination, and program evaluation can present barriers to operating programs. Philosophically, one must consider whether providers are reinforcing negative stereotypes of people with disabilities by providing discounts based on physical attributes rather than on economic need. In the end, Ward suggests that subsidies represent a laudable goal but the newness of these initiatives makes it difficult to define their outcomes. Wilson, P. Tax Preferences for Specialized Communications Equipment for the Handicapped. February 1986. Available from: The Annenberg Washington Program and the Gallaudet Research Institute Joint Forum on "Marketplace Problems in Communication Technology for Disabled People, 1455 Pennsylvania Avenue N.W. Suite 200 Washington, D.C. 20004 (202) 393-7100; 31 pages and glossary. Summary: This paper examines both the advantages and disadvantages of using the tax system for the purpose of specialized communication equipment, paying particular attention to the problems encountered in designing such preferences. Part I introduces the perceived problem: Failure of the market to respond adequately to the need for specialized communications equipment for individuals with disabilities. Part II builds on that analysis to draw some tentative conclusion about appropriate tax incentives for the purchase or production of specialized communications equipment. Special attention is paid to the possible use of the existing Orphan Drug tax credit as a model. Target Audience: Policy makers. Persons interested in a review of existing tax options for financing assistive technology. Issues Raised/Conclusions: This paper raises several fundamental questions about the appropriateness of such a tax incentive. First, is the focus on specific products appropriate, or should the goal be a general increase in purchasing power among people with disabilities, to be spend as they wish. Second, is tax policy the best means to subsidize production of specialized equipment. Other options may well be preferable, depending on the goal. The author concludes that equal access prices are best pursued through regulation, and subsidies for low-income consumers are best provided by direct government expenditures. For those interested primarily in aiding low-income consumers, achieving more complete coverage for such equipment under Medicare and Medicaid is more important than obtaining a tax credit for its purchase. If society desires to subsidize specialized communication equipment, and chooses to do so through the tax system, a tax credit is the preferred form of tax preference. Whether the tax credit should be given to the consumers or producers depends partly on whether it is important to target the benefits toward lower-income consumers. If the goal is to encourage production of products that would not otherwise be marketed, than a subsidy for pre-marketing research costs (similar to the orphan drug credit) might be most desirable. Before advocating particular forms of tax incentives, additional information is needed in several areas. Policy makers need better demographic information on individuals with disabilities, their incomes, and the taxes they pay. In addition, studies of the demand for individuals types of products would be also be necessary. Wobschall, R. and Baranik, D., Directory of Funding Resources for Assistive Technology in Minnesota. Available from: The Minnesota Star Program, 300 Centennial Building, 658 Ceder Street, St. Paul, Minnesota 55155; 29 pages. Summary: This book is perfect for individuals in Minnesota who want to locate all of the available funding sources within the state for specific types of assistive technology devices and determine which funding source will be best for them. Each page in the directory represents a public or private funding resource, a program that loans equipment, or a program that offers financial loans for the purchase of equipment. Listings contain the name, address, contact person and telephone number for the agency, as well as brief descriptions of who is served, the eligibility and income criteria, and the appeals process. Target Audience: Individuals with disabilities and their families, foundations and agencies in Minnesota. Issues Raised\Conclusions: This book is designed to be used in conjunction with Funding and Assistive Technology: A STAR Program Workshop Wobschall, R. "Technology and People with Disabilities: Implementing a State Plan." Northridge, CA: November 1988. Available from: California State University, Office of Disabled Students, Northridge, CA; pp.494-504. Summary: This paper, presented at the Fourth Annual Conference on Contemporary Application of Computer Technology, reviews the efforts of the Minnesota Governor's Advisory Council on Technology for People with Disabilities in the implementation of key federal initiatives in Minnesota. The paper provides steps to be taken along with a list of "critical success factors" that will help ensure successful public-private initiative on technology service delivery at the state level. Target Audience: Based on Minnesota's exemplary work in advancing the availability of assistive technology and related services, this paper could be a valuable tool for any state looking for ways to improve assistive technology service delivery. Issues Raised/Conclusions: In the area of funding of assistive technology and related services, the assessment revealed that: 1) State agency definitions of key terms, particularly "medical necessity" and "prevailing community standard," are unnecessarily restrictive and are therefore preventing or delaying full, appropriate use of technology; 2) public funding policies do not recognize rehabilitation engineering as a reimbursable service, even though rehabilitation engineering skills are needed to conduct assessments in order to select appropriate equipment and to provide training to ensure the full, proper and safe use of equipment; and 3) the definitions of medical necessity used by private insurance carriers that cover the majority of families with children with disabilities and adults with disabilities are even narrower and even more restrictive that those used by public entities. The Advisory Council worked to improve funding on several fronts. The results were: 1) Medicaid Rule Revision: development of a new rule that will allow habilitative, as well as rehabilitative, technologies to be covered by Medicaid; 2) Policy Coordination: coordinate all policies relating to assistive technology services and devices for people with disabilities within different public programs; 3) Private sector funding: increase awareness of the private-sector funding among Minnesota organizations; and 4) Support other agency efforts. Zola, I.K. Ph.D Aging, Disability and the Home Care Revolution. 39th Annual John Stanley Coulter Lecture: November 1989. Available from: Dr. Zola, Department of Sociology, Brandeis University, P.O. Box 9110, Waltham, MA. 02254-9110; 4 pages. Summary: This report examines the recent increase in individuals with disabilities living longer and reaching old age and its importance to home health care. There is currently a push to improve home health care funding in order to avoid hospitalization of elderly individuals with disabilities. Technology has brought great improvement to home health care opportunities, however, the advances are often hindered by a lack of adequate financing of home health in the health care system. Target Audience: The general public, individuals with disabilities, elderly individuals, health care providers, policy makers. Issues Raised/Conclusions: A lack of choice as to the design of the technology and type of caregiver results from a health coverage system that inadequately funds home health care. Coalition building between individuals who are elderly and individuals with disabilities will help to change current stereotypes of these individuals from just individual patients in need, to a minority group attempting to augment their decision making power. An increase in size will mean a veto power that can bring about the needed change in financing of home health care. STUDIES/PROJECTS UNDERWAY Alpha One Center for Independent Living. "Credit Able." Will be available from: Alpha One Center for Independent Living, 85 E Street, Suite One, South Portland, ME 04106; 207-767-2189. Summary: Alpha One, a nationally recognized Independent Living Center, proposes Credit Able, a two-year project to demonstrate the viability of income-contingent loan programs for children, adults, and elderly people with disabilities, for the acquisition of assistive technology. As administrator of the Maine Adaptive Equipment Loan Program, Alpha One will demonstrate the viability of income-contingent loan programs for people with disabilities and to offer technical assistance to prospective loan programs. During the first year, Credit Able will conduct an extensive assessment of the availability of the Adaptive Equipment Loan Program. Over the two-year funding period, a Credit Able Technical Assistance Team, currently involved in management of the Adaptive Equipment Loan Program, will offer technical assistance to 12 to 14 prospective loan programs across the nation. Credit Able will target prospective loan programs across the nation. This project is funded under Title II of the Tech Act. Target Audience: Consumers, families, practitioners, advocates and policy makers. Connecticut Rehabilitation Engineering Center. Funding of Assistive Technology Devices for the Consumer with A Disability. Available in March 1991 from: Connecticut Rehabilitation Engineering Center, Institute for Human Resource Development, 78 Eastern Boulevard Glastonbury Ct. 06033; 203-659-1166; In Connecticut: 800-752-4988. Summary: According to the project design information, this resource will be a consumer's guide and curriculum materials which will assist in obtaining funding for assistive technology devices and related services. The manual will provide an overview of each type of funding source along with a comparison of the existing funding options. The format of the guide will be structured in a way that allows the consumer to quickly determine which funding program hold promise. Case examples will be used within and across various program to illustrate the effect of implementation policies on the funding process. Target Audience: Consumers, families, advocates, practitioners, funding specialists, and policy makers. Golinker, L. Principal Assistive Technology Caselaw. Washington: February 1991. Available from: United Cerebral Palsy Associations, Inc., 1522 K Street, N.W., Washington, D.C. 20005; 800-USA-5UCP; 37 pages. Summary: This paper is a summary of the most important caselaw decisions and administrative policy directives to date with regard to entitlement to assistive technology funding. The paper also includes key references to the statutes and regulation defining the scope of the programs. The decisions are found primarily in three federal programs: Medicaid including EPSDT, Special Education and Vocational Rehabilitation. Target Audience: State program administrators, professional advocates (P&As, CAPs, LSC), policy makers, consumers, providers. Issues Raised/Conclusions: There are few caselaw decisions related to assistive technology because of the general lack of awareness of the potential use and benefits of assistive technology, the lack of professional advocates who can pursue appeals, and the pressure for out-of-pocket settlements rather than court decisions that can set legal precedents for the program as a whole. Nevertheless, there are several important legal cases which provide a basis for getting Medicaid, Special Education and Vocational Rehabilitation to pay for assistive technology which increases the capacity for independence or self-care, makes a child's educational program more meaningful, or enhances functional capacity to expand employment and independent living opportunities. These determinations, however, must be made on a case-by-case basis. National Easter Seal Society. Computer Assisted Technology Services. Will be available from: National Easter Seal Society, 70 East Lake Street, Chicago IL 60601; 312-667-8400. Summary: The National Easter Seal Society will demonstrate the viability of loans made to families or employers of persons with disabilities to provide technology-related assistance to maintain and enhance the level of functioning in major life activities. The program will serve all individuals with disabilities. Loans will range from $1000 to $3200 during the first year, to increase the number of applicants/participants of the program. Easter Seals will take a lead in providing the technical support and access to resources under this Tech Act Title II demonstration grant. Target Audience: Consumers, families, practitioners, advocates, funding specialists and policy makers. VI. APPENDIX ù Definition of Assistive Technology Device and Assistive Technology Service in P.L. 100-407 The Technology-Related Assistance Act of 1988 ù Policy Letter: Office of Special Education ù Policy Letter: Rehabilitation Services Administration NATIONAL COUNCIL ON DISABILITY ACCESS TO THE FINANCING OF ASSISTIVE TECHNOLOGY ANALYSIS OF POLICY AND PRACTICE IN FEDERAL PROGRAMS January 23, 1992 Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street, N.W., Suite 1112 Washington, DC 20005 For Further Information Contact: Michael Morris (202) 842-1266 ACCESS TO THE FINANCING OF ASSISTIVE TECHNOLOGY ANALYSIS OF POLICY AND PRACTICE IN FEDERAL PROGRAMS TABLE OF CONTENTS Page Number SECTION I THE POLICY CONTEXT................................. 1 The Technology-Related Assistance for Individuals with Disabilities Act of 1988...................... 1 Federal Policy Goals for Individuals with Disabilities....................................... 3 Access To Financing................................ 4 SECTION II APPROACH TO THE ANALYSIS........................... 6 LOGIC MODEL........................................ 6 1. The Definition Of Assistive Technology........ 6 2. Selection Of Federal Programs................. 8 3. Development Of The Criteria For Program/Policy Effectiveness.................. 9 A. FACILITATORS............................. 10 B. BARRIERS................................. 10 4. Information Sources.......................... 11 5. Limitations.................................. 11 6. Products Of The Analysis..................... 12 SECTION III FEDERAL SUPPORT FOR THE FINANCING OF ASSISTIVE TECHNOLOGY.............................. 13 Federal Program Characteristics: Overview........ 13 1. Program Goals And Purposes..................... 14 2. Legislative History............................ 14 3. Program Magnitude.............................. 15 4. Target Populations And Eligibility Criteria.... 15 TABLE 1 State Flexibility........................ 16 5. Methods Used To Finance Assistive Technology... 17 6. State Flexibility.............................. 19 SECTION IV PROFILES OF INDIVIDUAL FEDERAL PROGRAMS .......... 21 I. Title XVIII of Social Security Act (Medicare) 21 II. Title XIX of Social Security Act (Medicaid).. 52 1. Medicaid Mandatory & Optional Services... 54 2. Early Periodic Screening, Diagnosis & Treatment Program (EPSDT).............. 62 Table of Contents (continued) Page Number SECTION IV (continued) Profiles.... 3. Intermediate Care Facilities For People with Mental Retardation & Related Conditions (ICFs/MR)..................... 64 4. Home & Community Based Services (HCBS or Section 2176 Waivers).................... 68 5. Community Supported Living Arrangements (CSLA)...................... 71 III. Title V of Social Security Act (Maternal & Child Health Services........................ 73 1. Maternal & Child Health Block Grant...... 74 2. Children With Special Health Care Needs . 77 3. Special Projects of Regional & National Significance............................. 80 IV. Individuals With Disabilities Education Act . 82 1. Part B. State & Local Grant Program for Special Education........................ 83 2. Part H. State Grants for Infants & Toddlers 90 V. Related Programs............................. 97 1. Education of Handicapped Children in State Operated or Supported Schools (P.L. 89-13) 97 2. Vocational Education (Carl D. Perkins Voc. Ed. & Applied Technology Education Act 101 VI. Rehabilitation Act of 1973 (as amended)..... 104 1. Title I, Basic State Grants............. 106 2. Title VI-C, Supported Employment........ 114 3. Title VII, Independent Living .......... 118 VII. Disability Programs of Social Security Act.. 123 1. Title II, Social Security Disability Insurance (SSDI)........................ 123 2. Title XVI, Supplemental Security Income 128 3. Impairment Related Work Expenses (IRWE) 133 VIII.Veterans' Benefit Programs ................. 136 Prosthetic Appliances & Sensory Aids........ 137 Related Programs............................ 138 IX. Older Americans Act of 1965 (as amended).... 143 Table of Contents (continued) Page Number X. United States Tax Code...................... 148 Medical Expenses............................ 148 Business Deductions ........................ 149 Employee Business Expenses ................. 149 Targeted Jobs Tax Credit.................... 150 Tax Credit for Architectural & Transportation Barrier Removal Expenses.................. 150 ADA Tax Credit for Small Business .......... 151 Charitable Contributions Deduction.......... 152 XI. Civil Rights Legislation.................... 154 1. The Americans With Disabilities Act (ADA) 154 2. Section 504 of the Rehabilitation Act... 163 3. Section 508 of the Rehabilitation Act... 166 XII. Technology Related Assistance For Individuals With Disabilities Act of 1988............... 170 XIII.Telecommunications Accessibility Enhancement Act of 1988 and The Telecommunications for the Disabled Act of 1982.................176 SECTION V Implications For Policy Reform & Federal Initiatives 184 TABLE 2: Financing of Assistive Technology: Barriers and Facilitators.................... 185 Nine Reform Strategies........................... 188 SECTION VI Seven Suggestions for Further Research........... 194 Appendix A Information Sources Appendix B Individuals Providing Information/ Perspectives on Programs Appendix C Copies of Policy Documents Appendix D Definitions of Assistive Technology Appendix E A Medicare Carriers Manual ACCESS TO THE FINANCING OF ASSISTIVE TECHNOLOGY SECTION I. THE POLICY CONTEXT "Gaps in the coverage provided by Medicaid, the lack of individuals with insurance, the lack of therapists in the state and the lack of assistive technology services available through the public schools or other service providers provide extreme problems for children seeking utilization and funding of assistive technologies. These problems, combined with a fragmented service delivery system of more than seventeen state and federal agencies serving people with disabilities, are confusing and frustrating for those seeking public funding and access to assistive technologies." -- Testimony at NCD Public Forum The significance of assistive technology to people with disabilities has been a public policy issue for over forty years. A 1982 report by the federal Office of Technology Assessment discussed the significance of providing supports that enable people with disabilities to work or attend schools with their neighbors, and making their lives easier, safer, and more fulfilling. The report recommended also the elimination or reduction of the effects of the causes of disability. [Office of Technology Assessment (OTA), 1982]. In its review of federal programs and policies OTA reported a major conclusion: (D)espite the existence of numerous important problems related to developing technologies, the more serious questions are social ones of financing, of conflicting and ill-defined goals, of hesitancy over the demands of distributive justice, and of isolated and uncoordinated programs; [OTA, 1982] A comprehensive review of testimony and comments from hundreds of people with disabilities, family members and other concerned citizens in 1986 by the National Council on Disability (NCD) produced the observation that "whatever the limitations associated with particular disabilities, people with disabilities have been saying for years that their major obstacles are not inherent in their disabilities, but arise from barriers that have been imposed externally and unnecessarily" (NCD, 1986). Although the Council's subsequent review of their recommendations to reduce barriers noted considerable progress, clearly many barriers remain. ["On The Threshold of Independence," January 1988.] The Technology-Related Assistance for Individuals with Disabilities Act of 1988 P.L. 100-407, the Technology-Related Assistance for Individuals with Disabilities Act of 1988, received overwhelming support in both the U.S. House and Senate. The testimony of dozens of witnesses, including many individuals with disabilities who use technology, provided firsthand information on the importance of assistive technology in people's lives as well as the difficulties often encountered in gaining access to technology. The findings of the Congress are summarized in the legislation which includes the following statement: For some individuals with disabilities, assistive technology is a necessity that enables them to engage in or perform many tasks. The provision of assistive technology devices and assistive technology services enables some individuals with disabilities to - (A) have greater control over their own lives; (B) participate in and contribute more fully to activities in their home, school, and work environments, and in their communities; (C) interact to a greater extent with nondisabled individuals; and (D) otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities. [29 USC 2201] Congress found that resources are lacking that would help people with disabilities obtain and use assistive technology (i.e., including both devices and related services). For example there is a lack of: . Sources of payment for assistive devices and services; . Trained personnel to provide assistive devices and services and to help individuals with disabilities use assistive technology effectively; . Information about assistive technology, for individuals, family members, and professionals working with individuals with disabilities; . Coordination among public programs and between public and private sector programs; and . Capacity of both public and private sector programs to provide necessary technology-related assistance. [(29 USC 2201]. The objectives or purposes of the Technology-Related Assistance Act were designed to respond to these findings. They include the provision of federal assistance to the states for the development of a consumer-responsive statewide program that includes increased access to funding for assistive technology; and enhancing the ability of the federal government to provide technical assistance, information, training, public awareness programs and funding for demonstration/innovation projects on assistive technology to the states. Other purposes of the Act were promotion and identification of federal policies that facilitate payment for assistive technology, identification of policies or practices that impede or act as barriers to assistive technology financing, and discovery of ways to eliminate barriers to financing. Federal Policy Goals for Individuals with Disabilities Because people with disabilities are people first, every federal program that affects people without disabilities affects those who do have disabilities. People with disabilities are therefore affected by all federal policies that help shape our society, from federal budget reform, tax and employment policies to foreign policies dealing with the new world order. At the same time there are dozens of programs -- some targeted specifically to people with disabilities, such as the Individuals with Disabilities Education Act (IDEA), and some with multiple eligible populations, such as the Medicaid and Supplemental Security Income (SSI) programs -- that are based on federal policy goals and that have special importance to people with disabilities. Over the past twenty-five years, Congress has established over thirty programs that affect Americans with disabilities (NCD, 1991a). Some of the policy goals in the authorizing legislation for these programs state they will: . Assure that all children with disabilities have available ... a free appropriate public education (Individuals with Disabilities Education Act); . Develop and implement ... comprehensive and coordinated programs of vocational rehabilitation and independent living for individuals with handicaps in order to maximize their employability, independence, and integration into the workplace and the community (The Rehabilitation Act); . (Have) national objectives that include the best possible physical and mental health for older persons and efficient community services with emphasis on maintaining a continuum of care for the vulnerable elderly (Older Americans Act); . Provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities (The Americans With Disabilities Act). Additional information on federal policy goals is included in Section IV, Profiles Of Individual Programs. Access To Financing "What is missing from this patchwork of funding streams is a clear concept of entitlement to assistive technology in order to increase independence and improve the quality of life for individuals with disabilities. The problem is we are not recognizing disability as a functional issue -- rather we are leaving coverage to the awkward and incomplete rationales afforded by the current educational, vocational and medical categories." -- Testimony at NCD Public Forum Despite policy statements that appear to support access to the financing of assistive technology devices and services, many questions exist about federal and state program effectiveness in meeting the technology needs of individuals with disabilities. The legislation mandates that a study on the financing of assistive technology be conducted by the National Council on Disability that will produce recommendations to the Congress and to the President concerning: . Federal laws, regulations, procedures, and practices that facilitate or impede the ability of the States to develop and implement consumer-responsive statewide programs of technology-related assistance for individuals with disabilities; . Federal and State laws, regulations, procedures, and practices that facilitate or impede the acquisition of, financing of, or payment for assistive technology devices and assistive technology services for individuals with disabilities; . Policies, practices, and procedures of private entities (including insurers) that facilitate or impede the acquisition of financing of, or payment for assistive technology devices and assistive technology services for individuals with disabilities; and . Alternative strategies for acquiring or paying for assistive technology devices and assistive technology services. [29 USC 2231] This report responds to the mandate for the National Council on Disability and focuses, in particular, on analysis of three areas: (1) Features of federal programs and policies that are facilitators and promote access to the financing of assistive technology; (2) Features that act as barriers or impediments to financing; and (3) Implications for federal strategies and reforms that would reduce inappropriate barriers to financing and enhance individual access to consumer-responsive assistive technology. The approach to this analysis of the effectiveness of federal programs and policies in financing assistive technology is described in the following section. SECTION II. APPROACH TO THE ANALYSIS The approach used in analyzing federal programs was grounded in the requirements of the Technology-Related Assistance Act. This meant a review of facilitators and barriers, identification of implications for reform, and discovery of related findings and purposes. Federal policy goals and perspectives of people with disabilities were reviewed also. An analytical framework or logic model was developed that describes the relationship between individuals with disabilities and those federal programs and policies including assistive technology. The model follows: LOGIC MODEL IF people with disabilities are knowledgeable about and have access to technology, and IF professionals are knowledgeable about the benefits and types of technology available, and IF financing is available to make technology affordable to individuals with disabilities and their families, and IF financing is adequately funded, consistent, predictable, available as needed over time, and IF such financing provides access to technology that is of high quality, designed to meet individual needs and preferences, and supported by qualified personnel, and IF financing promotes coordinated access to technology and the availability of technology across the full range of activities of living, THEN people with disabilities will enjoy increased independence and self-sufficiency, full community participation, and greater quality of life. 1. The Definition Of Assistive Technology Assistive technology has been defined throughout the analysis to include both assistive technology devices and services, based on the following definitions found in the Technology Related Assistance Act: Assistive technology device: Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. Assistive technology service: Any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device. Such term includes -- (A) the evaluation of the needs of an individual with a disability, including a functional evaluation of the individual in the individual's customary environment; (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by individuals with disabilities; (C) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices; (D) coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; (E) training or technical assistance for an individual with disabilities, or, where appropriate, the family of an individual with disabilities; and (F) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of individuals with disabilities. [P.L. 100-407] This definition of assistive technology encompasses a wide range of supports in the use of assistive technology as well as the devices themselves. The definition of devices, because it includes any item, equipment or product that can maintain or enhance functional capabilities of an individual with a disability, encompasses the full range of technology: from prosthetics and durable medical equipment such as wheelchairs to home modifications, and from low tech applications such as especially shaped eating utensils to the most complex computer communications systems. 2. Selection Of Federal Programs A quick review of the array of federal programs which finance or which potentially could finance assistive technology, conducted with the literature review of information sources on financing (NCD, 1991a), identified some forty or more programs. The list was narrowed to twenty-six programs, using the following criteria: . Major or potentially major source of assistive technology financing; . Range of age groups as target populations (e.g., children, elderly, veterans); . Financing with various emphases (e.g., health care, education, employment); and . Variation in financing mechanisms. On this basis, the following programs were reviewed and are included in this analysis: MEDICARE MEDICAID (1) Required and Optional Services (2) Early Periodic Screening, Diagnosis and Treatment (EPSDT) (3) Intermediate Care Facilities for people with Mental Retardation and Related Conditions (ICF/MR) (4) Section 2176 Waivers (Home and Community Based Services Waivers, Model Waivers) (5) Community Supported Living Arrangements MATERNAL AND CHILD HEALTH (MCH) (1) MCH Block Grant (2) Children with Special Health Care Needs (3) Special Projects of Regional and National Significance (SPRANS) EDUCATION (1) Individuals with Disabilities Education Act (IDEA) Part B (2) IDEA Part H (Infants and Toddlers) (3) State Operated Programs (89-313) (4) Vocational Education VOCATIONAL REHABILITATION (1) Title I: State Grants (2) Title VI-C: Supported Employment (3) Title VII: Independent Living SOCIAL SECURITY (1) Title II: Social Security Disability Insurance (SSDI) (2) Title XVI: Supplemental Security Income (SSI) (3) Impairment Related Work Expenses DEPARTMENT OF VETERANS AFFAIRS (VA) Prosthetics and Sensory Appliances Program OLDER AMERICANS ACT U.S. TAX CODE CIVIL RIGHTS (1) The Americans with Disabilities Act (ADA) (2) Section 504 of the Rehabilitation Act (3) Section 508 of the Rehabilitation Act THE TECHNOLOGY-RELATED ASSISTANCE ACT TELECOMMUNICATIONS ENHANCEMENT ACT OF 1988 THE TELECOMMUNICATIONS FOR THE DISABLED ACT OF 1982 Federal policies with major impact on the financing of assistive technology through private insurance, in particular the Employee Retirement and Income Security Act (ERISA), are included in a separate report. 3. Development Of Criteria For Program/Policy Effectiveness The Logic Model illustrated above provides the basis for the review of federal programs and policies and their effectiveness, i.e., what are the facilitators and barriers. The list was refined during the review process to reflect input from three regional Public Forums on "Financing Assistive Technology". The forums were convened by NCD to support the analysis. The first public forum was held in Los Angeles, California, March 21-22, 1991, another in Portland, Maine, on July 11 and 12th, and the most recent was in Minneapolis, Minnesota, October 17 and 18, 1991. Characteristics addressed in the review of the federal programs were: A. FACILITATORS ÀÀ Clear policy statement on assistive technology ÀÀ Broad or mandatory coverage of individuals ÀÀ Outreach requirements ÀÀ Coverage of a wide range of assistive technology ÀÀ Mandatory coverage of assistive technology support services ÀÀ Requirements for an individualized program plan ÀÀ Appeals process ÀÀ Coordination of funding sources ÀÀ Adequate and Reliable Funding ÀÀ Primary payer ÀÀ Training requirements ÀÀ Consumer responsive ÀÀ Mandated lead expert on assistive technology ÀÀ State plan requirements on assistive technology ÀÀ Appropriate level of state flexibility B. BARRIERS ÀÀ Restrictive eligibility provisions ÀÀ Limited or no outreach requirements ÀÀ Restrictive use of medical necessity criteria ÀÀ Prior authorization process ÀÀ Limits on the use of assistive technology being financed (location, purpose) ÀÀ Limits on the type of assistive technology covered ÀÀ No coverage of support services ÀÀ Lack of informed professionals ÀÀ No training requirements ÀÀ Incentives for lowest cost assistive technology ÀÀ Caps on the amount of coverage ÀÀ Caps on the duration/scope of coverage ÀÀ Last payer requirement ÀÀ Cumbersome application process (individual, vendor) ÀÀ Cumbersome reimbursement process ÀÀ Limited program funding ÀÀ Other administrative barriers. 4. Information Sources The examination of federal programs and policies used a variety of information sources, including the statutes, Congressional hearings and reports, federal regulations, policy statements issued by federal administering agencies, the "Catalogue of Federal Domestic Assistance," and various source books on federal programs. Perspectives on facilitators, barriers, and implications for federal actions that could reduce barriers to financing, were obtained from the following sources: . Interviews with knowledgeable individuals at the respective federal agencies; . Testimony at the NCD public forums on the financing of assistive technology; . Discussions with researchers and advocates for effective financing; and . The annotated bibliography on the financing of assistive technology prepared following the NCD literature review (NCD, 1991a). Collectively, these sources provided a rich array of suggestions for federal initiatives and reforms as well as information and perspectives on the effectiveness of current federal policies and programs. A list of the information sources used is included as Appendix A. 5. Limitations Two limitations were apparent early in the review process: (1) The significant lack of data on the extent to which individual federal programs are currently financing assistive technology; and (2) The disparities between program intent, as defined in authorizing legislation and other official policy statements, and program implementation. One aspect of federal program review was intended to determine the numbers of individuals with disabilities receiving assistive technology through each of the public programs, the number of dollars being used to finance assistive technology, and, if possible, the quantities of the various assistive devices and services being financed. This information was not available for any of the programs reviewed, with the exception of the Prosthetics and Sensory Aids Program of the Department of Veterans' Affairs (VA). Incorporating an understanding of the disparities between official policy and federal program implementation presented a different challenge. It is beyond the scope of this analysis to obtain comprehensive information on how each of the States uses the twenty-six federal programs and the reaction of their individual citizens to their State's implementation. Therefore the analysis has made particular use of a questionnaire to identify the disparities within selected individual states. Additionally, the NCD consumer forums identified the gaps between federal policy and implementation at the state and local level. The primary description of federal programs and their particular facilitators and barriers to financing assistive technology is based on information on federal policy goals and purposes as defined in legislation and regulations. Differences between these stated goals and purposes and state/local implementation are highlighted as appropriate. Discussions of state flexibility in program implementation are used to identify areas of state discretion, such as definitions of specific eligibility criteria, funding levels, and authorized services. They are used primarily to highlight the scope of discretion authorized by federal statute or regulation. 6. Products Of The Analysis This report summarizes three major components of the analysis of federal programs: (1) An overview of the ways federal programs finance assistive technology, the flexibility states have in implementing programs, features that act as facilitators in the financing of assistive technology, and those that act as barriers; (2) A descriptive profile of each covered program; and (3) A discussion of the implications for federal action to eliminate inappropriate barriers and to enhance access to the financing of assistive technology for individuals with disabilities. SECTION III. FEDERAL SUPPORT FOR THE FINANCING OF ASSISTIVE TECHNOLOGY Federal Program Characteristics: Overview The twenty-six programs included in the review reflect a broad spectrum of public policy goals, legislative history, program magnitude, target populations and eligibility requirements, mechanisms for financing assistive technology, and degree and scope of state flexibility. An overview across the programs is helpful in understanding the context for the analysis of facilitators and barriers. 1. Program Goals And Purposes Most federal programs include a statement of their goals or purposes, found most frequently in the authorizing legislation as passed by the Congress and signed into law by the President. For example, the description of the goals and purposes of the Technology-Related Assistance for Individuals with Disabilities Act of 1988 is found in P.L. 100-407, now 29 USC 2201-2271. Additional information on Congressional intent is found in the report accompanying the legislation. The report on the Rehabilitation Act Amendments of 1986 (Senate Report 99-388), for example, includes the following amplification of the Act's purposes: The Committee views the Rehabilitation Act as a comprehensive set of programs designed to meet the broad range of needs of individuals with handicaps in becoming integrated into the competitive workplace and the community and in reaching their highest level of achievement ... . The Committee definition [of supported employment] clarifies that, for the purpose of the Rehabilitation Act, supported employment may be considered an acceptable outcome for employability. (Senate Committee on Labor and Human Resources). Statements of this kind are used in the interpretation of policy goals in such activities as development of program regulations by federal agencies and the resolution of appeals on eligibility and service coverage by the courts. Most of the programs include statements of goals or purposes that relate specifically to people with disabilities. These include such goals as the promotion of independence and self-sufficiency (e.g., the Vocational Rehabilitation and Social Security work incentive programs); access to health care (e.g., Medicare, Medicaid, Maternal and Child Health, VA health service programs); rehabilitation (e.g., Vocational Rehabilitation, Medicaid); and equal access and opportunity (e.g., IDEA, the Americans with Disabilities Act, and Section 504). Such policies provide general support for the financing of assistive technology because of technology's significance to individuals with disabilities in reducing dependence and promoting self-sufficiency, maintaining or enhancing health status, rehabilitation, and as a major support to full participation as students, workers, and members of the community. Other policy goals or purposes providing general support to effective financing of assistive technology include coordination (e.g., IDEA Part H - State Grants for Infants and Toddlers with Disabilities); and improvements in the quality of services being provided (e.g., Carl D. Perkins Vocational and Applied Technology Act programs). Statements of policy goals specific to assistive technology are found in a few federal programs, including statements as part of the authorizing legislation (e.g., the Technology-Related Assistance Act); and in regulation (e.g., regulations governing the Intermediate Care Facilities for people with Mental Retardation and related conditions (ICF/MR) program, an optional service under the Medicaid program. Some programs -- including some without reference to the financing of assistive technology as a specific purpose or goal -- are covered by other policy statements specific to assistive technology. For example, there is the Policy Directive on Rehabilitation Engineering from Nell Carney, Commissioner of the Rehabilitation Services Administration (RSA), U.S. Department of Education, November 16, 1990, that reinforced the implementation of the Rehabilitation Act Amendments of 1986 and gave new emphasis to assistive technology in Rehabilitation Act programs. Or other program guidance, such as within the Medicaid Home and Community Based Waiver program, an application format that includes assistive technology in its definition of appropriate services (i.e., environmental modifications and specialized medical equipment and supplies). States are typically the target audience for these statements, as well as the recipients of the federal funds Congress appropriates to implement the policies in most of the programs reviewed. 2. Legislative History The federal programs reviewed in this analysis range from old programs that have traditionally been used to finance assistive technology, such as the VA Prosthetics and Sensory Aids program, medical deductions in the federal tax code, and the durable medical equipment benefit under the Medicare program. Recently enacted programs are the Technology-Related Assistance Act (1988) and the Americans With Disabilities Act (1990). Still other programs that have been in place for several years but amended recently to include references to assistive technology are the Individuals with Disabilities Education Act of 1990, which added definitions of assistive technology services and devices to clarify its role in education and related services for children with disabilities, and the Carl D. Perkins Vocational and Applied Technology Act of 1990, which added requirements that states assure provision of assistive technology to students with disabilities. 3. Program Magnitude The federal programs that finance assistive technology vary greatly in their total magnitude -- both expenditures and numbers of individuals -- and in the expenditures specifically directed to assistive technology. Table 1, Program Magnitude and State Flexibility (on next page) summarizes the magnitude of the federal programs reviewed. The greater the funding level for an individual federal program, the greater the potential exists for funding of assistive technology devices and services. With the exception of the Technology Related Assistance Act (P.L. 100-407), assistive technology funded devices and services are but one option for resource allocation from a menu of diverse programs' covered services. 4. Target Populations and Eligibility Criteria A few of the programs included in the review are targeted to a very broad population, including people who do not have disabilities, such as the federal tax code and the Medicaid program. Others include specific components targeted to people with disabilities, such as the SSI program for individuals with disabilities and the Children with Special Health Care Needs component of the Maternal and Child Health (MCH) Block Grant. Some programs include people with disabilities as one of their defined target populations (e.g., Medicare and the Vocational Education program). Another program requires that states address the needs of people with disabilities through state plan requirements (e.g., the Older Americans Act). Not surprisingly, many of the federal programs that are significant to the financing of assistive technology are targeted directly to individuals with disabilities, including programs authorized by the Individuals with Disabilities TABLE 1 education Act, the Rehabilitation Act and the civil rights protections of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. The two focuses of target population and eligibility criteria used most frequently in these programs are age and level of income and resources. Examples of age related targeting and eligibility include Part H of IDEA (infants and toddlers with disabilities from birth through age two), Part B of IDEA (children with disabilities ages three to twenty-one) and the Older Americans Act (individuals age sixty and over, regardless of disability status). Programs targeted to low income individuals include Medicaid, SSI, and the MCH block grant program. A few programs include also policy language that suggests that special efforts should be made to reach low income members of the broader target population. For example, the Older Americans Act requires that area agencies on aging assure that preference will be given to providing services to older persons with the greatest economic or social needs, with particular attention to low income minority older persons. 5. Methods Used To Finance Assistive Technology The federal programs reviewed for this analysis use a variety of methods to finance assistive technology. These include direct provision or payment, usually to the provider, vendor or distributor; financial assistance to the individual with the disability or family; and indirect or general support. The typical direct financing method begins with determination of the individual's eligibility for the program, followed by a further determination that assistive technology -- either assistive device or assistive technology related service or both -- is needed by the individual and can be paid for by the program. There is no consistent standard of need across federal programs that guarantees an individual with a disability access to appropriate assistive technology services and devices. For instance, several programs, including Medicare, Medicaid, and the VA, specify that the assistive technology must be medically necessary. In the Rehabilitation Act, access to technology must relate to achieving employment potential. Children covered by IDEA Part B have access to financing based on the educational necessity for the technology. For example, children whose Individualized Education Plan indicates the need for assistive technology are entitled to receive the assistive technology from their local school district at no cost, as part of their free appropriate public education. The definition of assistive technology services and devices in the IDEA legislation and the related policy letter from the director of the federal Office of Special Education Programs make it clear that assistive technology can (and must) be paid for through IDEA funded programs, even though federal IDEA funding covers only a small percentage of the cost. A third step in the process in some programs is that the assistive technology be provided by a certified vendor or provider. For example, Medicaid rules specify that assistive devices and services paid for by the program can be obtained only from entities certified by the state Medicaid program. Other examples of financial assistance include allowances for assistive technology expenditures in the federal tax code and some of the work incentive provisions for people with disabilities who receive Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits. For example, the Impairment Related Work Expense (IRWE) program allows both SSI and SSDI recipients who work to deduct half of the cost of assistive technology and their other expenses that permit them to maintain employment and that are associated with their disability. This is offset from the amount of their earnings for it would otherwise reduce their federal monthly payment. Indirect support of financing includes linkages with programs that finance assistive technology directly, promotion of access to services and programs, and incentives to potential financiers of assistive technology. The primary examples of such linkages are the relationships between SSI and Medicaid eligibility, and between SSDI and Medicare eligibility. Promotion of access is exemplified by the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. Both of these civil rights laws emphasize in their regulations that assistive technology must be provided as necessary to make reasonable accommodation in providing full access to people with disabilities, to employment, transportation, government funded services, and public accommodations. Furthermore, Title IV of ADA requires that telephone services offered to the public in every state must include inter- and intrastate relay services that provide full telecommunications access to people with speech and hearing impairments. Likewise, Section 508 of the Rehabilitation Act, added in 1986, requires federal agencies to provide workers equivalent access to electronic office equipment. Large purchases of access-related equipment, especially computers, by the federal government will serve as a catalyst for the accelerated development, manufacturing and marketing of accessible and adaptable office automation systems in the private sector. Incentives to potential financiers are found in the federal tax code, including the Targeted Job Tax Credit program, which employers can use to finance job related assistive technology. The charitable contributions provision in the Tax Code is also an incentive for donations to charitable organizations that finance assistive technology for individuals. 6. State Flexibility For some federal programs, such as those administered by the Department of Veterans Affairs, Medicare, and SSDI benefits, analysis of state flexibility is not a critical variable. Although some regional differences may be observed, these are federal programs that finance assistive technology directly to individuals rather than provide funding to the states for such purposes. Other federal programs are considered to be federal-state partnerships or, from the state perspective, state-federal. Programs such as Medicaid, vocational rehabilitation (VR) programs authorized under Title I of the Rehabilitation Act, and Children with Special Health Care Needs, have considerable state flexibility. For instance, although a core set of eleven Medicaid services is mandated, states have flexibility in the amount, scope and duration of coverage (e.g., number of days in the hospital). States can also determine the specifics of eligibility requirements, optional services to be covered, including durable medical equipment, occupational, physical and speech/language therapy provision and provider qualifications. States have great flexibility in many programs regarding their level of contribution. Even in some programs with state match requirements, such as the Vocational Rehabilitation and Maternal Child Health Care (MCH) block grant programs, there is no federal mandate that the entire federal share allocated to the state be matched and therefore available to the residents in that state. Some programs illustrate a mix of federal mandates and state flexibility; e.g., the IDEA Part H program for infants and toddlers with disabilities includes stringent timelines, requirements for program components, and eligibility requirements in relation to age (i.e., birth through age two), as a condition of acceptance of federal Part H funds. Also, infants and toddlers in states that accept a fifth year of funding become entitled to services defined in the individualized family services plan. At the same time, states have great flexibility in the scope and organization of services, their inclusion of infants and toddlers at risk of developing disabilities, and the use of fee schedules based on ability to pay. Table 1 summarized the various kinds of state flexibility in program implementation found in the federal programs reviewed. There is also some indication that Congress has moved to limit state flexibility to some extent over the past few years. Examples include the expansion of mandatory coverage of low income women and children in the Medicaid program in OBRA 1989 and OBRA 1990; expansion of entitlement to services for children participating in the Medicaid Early Periodic Screening, Diagnosis and Treatment program to include the full range of Medicaid optional services, regardless of the state's individual Medicaid plan in OBRA 1990; and reduction in flexibility in the expenditure of federal MCH block grant funds, coupled with new planning and reporting requirements in OBRA 1989. Such actions would reverse the trend of the early 1980s toward the new federalism, exemplified in particular by the consolidation of dozens of individual federal health and human service programs into seven block grants with maximum flexibility for the states in program expenditures, allocations among services and populations, and planning, and minimum federal requirements for block grant applications and reports on the use of federal funds. At the present time it is too early to know if the 1990s will bring a resurgence of federal mandates on how states may expend federal funds. A recently announced position of the National Governors' Association (NGA) indicates that states are strongly opposed to new mandates, especially in the Medicaid program, and would prefer some recent enactments be rolled back. For example, a news release describes requests to Congress "to delay the mandatory implementation of the 1990 package of Medicaid mandates for two years" (Feb., 1991). In this broad overview of federal program characteristics, the analysis of coverage of assistive technology services and devices cuts across factors of targeted age and population groups, traditional notions of federal-state partnerships, all environments (home, school, work and community), and diverse approaches and definitions to document need. The greater the understanding of individual federal programs and the relationships between programs, the easier it is to chart an approach to assistive technology access that responds to individual and system needs. SECTION IV. PROFILES OF INDIVIDUAL FEDERAL PROGRAMS The program profiles include a brief description of federal policy goals, target population and eligibility criteria, program magnitude, procedures for the financing of assistive technology, and the degree and scope of state flexibility in program implementation. Additional information is provided as appropriate on such areas as case law that has refined program implementation and current federal initiatives, followed by perspectives on facilitators and barriers. The descriptive information is based primarily on written sources on federal legislation and has been verified whenever possible with the respective federal agency. The information on facilitators and barriers reflects multiple perspectives on program features and policies, including the perspectives of people with disabilities as well as advocates, researchers, state officials, and federal agency representatives. Where found, lack of consensus is indicated. I. TITLE XVIII OF THE SOCIAL SECURITY ACT: MEDICARE A. Background The Medicare program was established by Congress in 1965 with the enactment of title XVIII of the Social Security Act. Medicare is a federal entitlement program which provides payment for certain medical services for three groups: (1) Social Security beneficiaries who have reached age 65, (2) working-age persons who are eligible for Social Security Disability Insurance (SSDI), and (3) persons with end-stage renal disease, the only disease-specific entitlement. In 1990, Medicare covered 30.9 million persons 65 years and over, and 3.3 million working-age persons with disabilities. Medicare consists of two separate but complementary insurance programs, a Hospital Insurance program, known as Part A, and a Supplementary Medical Insurance program, known as Part B. Part A covers hospitalization as well as services provided by skilled nursing facilities, home health agencies and hospices. Part B covers a wide range of medical services and supplies including physician services, outpatient hospital services, comprehensive outpatient rehabilitation facilities, outpatient physical therapy and occupational therapy services, certain home health services, certain drugs and biologicals that cannot be self-administered, diagnostic x-ray and laboratory tests, ambulance services, and purchase or rental of durable medical equipment, prosthetic devices, orthotic devices, and certain medical supplies. The original intent of Congress was that Medicare would provide health insurance to protect the elderly from the substantial costs of acute health care services, which principally came from hospital care. At that time, the majority of Americans who had any private health insurance were covered for hospitalization only. The Medicare statute adopted a very restrictive definition of health care which emphasizes acute care hospitalization and physician services, even though a majority of Medicare beneficiaries have chronic health care conditions. Medicare continues to exclude coverage for items or services which are not considered "reasonable and necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member." Medicare is the single largest health insurance program in the country. It accounted for $108.9 billion out of $585.3 billion in total personal health care expenditures in 1990 according to HCFA's Office of National Health Statistics. (Health Care Financing Administration, Office of National Health Statistics, 1991). Meanwhile, all of private health insurance contributed only $186.1 billion or less than one-third of total personal health care expenditures in 1990, among all self-insured employers and 1500 private health insurance companies. Because of the size of Medicare, and the fact that it is administered through private health insurance companies, the Medicare program has a major influence on the policies and practices of private health insurance. Because government is the largest third party payer for health care services, and Medicare represents almost two-thirds of Federal government expenditures for personal health care, there is tremendous pressure on Medicare to contain health care costs. According to the Congressional Budget Office (CBO) baseline projections, Medicare payments go primarily to hospitals and physicians. In 1990, 51.8 percent of total Medicare payments went to inpatient hospital care ($56.8 billion), 24.1 percent went to physicians ($26.4 billion) and 7.6 percent went to outpatient hospital services ($8.3 billion). Meanwhile, DME suppliers received only $1.5 billion or 3.5 percent of Medicare Part B payments in 1990. CBO estimates that Medicare expenditures for DME under Part B will expand to $2.7 billion by 1996, accounting for only 3.2 percent of projected Part B outlays. (U.S. House of Representatives, Committee on Ways and Means, 1991). Responsibility for administration of the Medicare program rests with the Health Care Financing Administration (HCFA) within the Department of Health and Human Services (DHHS). HCFA contracts with private health insurers to administer Medicare. Part A contractors are called fiscal intermediaries and Part B contractors are called Medicare carriers. Blue Cross-Blue Shield companies serve as 41 out of 48 fiscal intermediaries for Medicare, and 26 out of 34 Medicare carriers throughout the country. Medicare contractors have jurisdictions which correspond to regional, state-wide, or sub-state boundaries. The fiscal intermediaries and carriers are responsible for: (1) determining the eligibility status of a Medicare beneficiary; (2) determining whether the services on submitted claims or bills are covered under Medicare; (3) determining the allowable charges based on the services provided; and (4) making correct payment to the beneficiary, physician, provider, or supplier of services. Eligibility for Medicare depends on age and on disability status. Persons 65 and over are entitled to Part A of Medicare as a result of their Social Security contributions through a payroll tax on their earnings when they were employed. Persons eligible for Part A are also eligible for Part B of Medicare if they pay a monthly premium of $29.90 in 1991 and are subject to a $100 annual deductible, and a 20 percent coinsurance rate. The Hospital Insurance (HI) Trust Fund (Part A) is financed primarily through the Social Security payroll (FICA) tax on Social Security-covered earnings which currently represents 1.45 percent of earnings each contributed by employee and employer. The Supplemental Medical Insurance (SMI) Trust Fund (Part B) is voluntary and is financed partly from premiums paid by Part B enrollees and partly from general revenues. Congress sets premium levels to generate approximately 25 percent of total Part B Trust Fund outlays with the rest financed by general revenues. Although Medicare originally covered only persons aged 65 and over, the 1972 amendments to the Social Security Act (P.L. 92-603) extended coverage to persons entitled to Social Security benefits because of their disability and to certain individuals with end-stage renal disease. Persons over 18 years old with disabilities who are unable to work and are totally financially dependent on their parents may become eligible for SSDI if their parents are Social Security beneficiaries who have retired, died, or become disabled. However, Medicare eligibility for persons under age 65 with disabilities requires a two-year waiting period between becoming eligible for Social Security Disability Insurance (SSDI) and becoming entitled to receive Medicare benefits. The waiting period was imposed for cost-containment purposes and to avoid duplication of private coverage, although it appears that as many as one-third of new SSDI beneficiaries are uninsured at some time during their 24 month waiting period for Medicare. B. Financing Assistive Technology Medicare makes a larger contribution towards DME than private health insurance but considerably less than out-of-pocket payments. According to HCFA's Office of the Actuary, Medicare accounted for 17.8 percent of expenditures for DME in 1990 compared to only 10.4 percent for private health insurance, while out-of-pocket payments accounted for 67.3 percent of expenditures for DME. (Health Care Financing Administration, Office of National Health Statistics, 1991) Reflecting the acute care bias in Medicare's coverage criteria, most of the DME which Medicare pays for includes equipment which is required for breathing, ingestion, elimination, and ambulation. A recent DHHS Fact Sheet provided the following break-down of Medicare expenditures for DME in 1990: Expenditures (in millions of dollars) DME & Supplies Inexpensive DME 136 (6.9%) Frequently Maintained DME 74 (3.7%) Oxygen 680 (34.4%) Rental DME 346 (17.5%) ESRD Supplies 3 (0.2%) ESRD Equipment 25 (1.3%) Prosthetics and Orthotics 371 (18.8%) Parenteral and Enteral Feeding 340 (17.2%) TOTAL 1,975 (100%) Based on these Medicare expenditures, oxygen and tube feeding account for over 50 percent of DME expenditures with prostheses and orthotics bringing the total up to 70.4 percent. Rental DME (which is likely to be used disproportionately by persons without permanent disabilities), brings the total up to 87.9 percent. Only 3.7 percent goes for expensive equipment (over $150) which requires frequent maintenance, 6.9 percent goes for inexpensive DME (under $150) or equipment which is generally purchased by the Medicare beneficiary, and 1.5 percent goes for the life-supports of End-Stage Renal Disease. Medicare Coverage Criteria: Medicare will pay for assistive technology if it meets certain Medicare coverage guidelines. The primary statutory basis for Medicare coverage decisions appears in section 1862(a) of the Social Security Act, which prohibits payment under the Medicare program for any expenses incurred for services "which are not reasonable and necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member." Assistive technology which is to be covered by Medicare would have to meet three criteria: (1) impairment must be based on illness, injury, or a malformed body member; (2) the purpose of the device must be diagnosis, treatment, or improvement in functioning; and (3) the treatment must be "reasonable and necessary". The first criterion would eliminate persons from seeking treatment for conditions which were not caused by illness, injury, or a malformed body member. Since all disabilities can be attributable to one of these causes, this requirement does not restrict coverage for DME. The second criterion clarifies that the device can fulfill one or more specific purposes including diagnosis, treatment, or improvement in functioning. The third criterion indicates that the device must be "reasonable and necessary". Equipment is considered "necessary" when it can be expected to make a meaningful contribution to the treatment of the patient's illness or injury or the improvement of one's malformed body member. Equipment is considered "reasonable" if the expense of the item is proportionate to the expected therapeutic benefit. In the Medicare Coverage Issues Manual, HCFA describes whether certain specific medical items, services, treatment procedures, or technologies can be paid for under Medicare. This is followed by a DME Reference List which is designed to be used by Medicare carriers and intermediaries as a quick reference tool for determining the coverage status of certain pieces of DME (see Appendix A for DME Reference List from Medicare and Medicaid Guide, Section 27,221, pp. 9301-9308). The DME reference list includes a brief explanation of why specific types of equipment are not covered. Many items are listed as "deny" because they are viewed as "comfort or convenience items" or "not primarily medical in nature". HCFA cites the statutory authority of Section 1861(n) of the Social Security Act for this determination of "not primarily medical in nature". However, this short section of the Social Security Act provides no definition of durable medical equipment. Instead the Medicare statute describes "Durable Medical Equipment" by providing a list of only four types of DME. The first two types of DME which are listed in the Medicare statute are iron lungs and oxygen tents which are practically never used any more. The other two types of DME are hospital beds and wheelchairs. While this outdated and incomplete list of DME reflects the types of DME that were common when the Medicare statute was passed in 1965, it does not provide a reasonable basis for determining which types of DME should be covered by Medicare in the 1990s. In addition to rapid changes in medical technology, there has been a significant shift in the concept of health from an acute care model to a chronic care model. In the acute care model, health is defined as the absence of disease or impairment, while in the chronic care model health is defined as managing chronic health conditions to maximize the capacity to participate as fully and independently as possible. This evolution in the concept of health also reflects a shift in the disability paradigm from segregation and dependence to community integration and independent living. HCFA Regulations for DME: Although DME is not defined in the Medicare statute, HCFA has defined it in regulations (Medicare Part B Coverage, Section 3144, Medicare and Medicaid Guide). There are four characteristics which must all be met before assistive technology can be defined as "durable medical equipment" according to HCFA. One criterion is that the equipment "can withstand repeated use". A second criterion is that the device must be "primarily and customarily used to serve a medical purpose". A third criterion is that the device is "generally not useful to a person in the absence of an illness or injury". The fourth criterion is that the equipment is appropriate for use in the home. On the basis of these four criteria for DME which HCFA has determined in regulations, many claims for assistive technology are denied by Medicare carriers. These requirements arbitrarily exclude many types of assistive technology that meet the basic Medicare statutory requirements for Medicare coverage. Secondly, it appears that current Medicare coverage policy is highly inconsistent in what types of equipment Medicare will and will not pay for. And thirdly, it appears that HCFA has created specific criteria which exclude many types of DME that meet the statutory requirements for Medicare coverage. Problems with HCFA's Arbitrary Definition of DME: A. Can withstand repeated use: The requirement that DME can withstand repeated use was originally made because of its bearing on the rentability of equipment. When Medicare began in 1965, all DME was arranged for on a rental basis. For many types of DME which are normally purchased now, this characteristic is less important. Moreover, the distinction between DME and disposable medical supplies is not problematic because Medicare covers many types of disposable medical supplies (such as catheters, ostomy supplies, and bandages anyway. B. Is primarily and customarily used to serve a medical purpose: The second requirement that the device must be "primarily and customarily used to serve a medical purpose" is much more problematic for two reasons. Instead of recognizing the three medical purposes of diagnosis, treatment, or improvement in function which are contained in the Medicare statute, the definition of DME which HCFA has adopted introduces a false dichotomy between medical purpose and functional purpose. HCFA has chosen to define what is a "medical purpose" and whether equipment is primarily used for that medical purpose. Reflecting an historic acute care bias in the health care system, HCFA has narrowly defined medical purpose to mean the life sustaining functions of breathing, eating, elimination, and ambulation and the services which are performed by physicians. This narrow interpretation of the meaning of "medical purpose" assumes that most people with disabilities are sick and require the expertise and supervision of a physician to be appropriately treated. One consequence of this arbitrary interpretation of "medical purpose" is that many types of assistive technology are not covered by Medicare even though they could enhance an individual's functioning by substituting for a malfunctioning body part. HCFA contends that section 1861(n) of the Social Security Act does not permit coverage of every item that could be useful to a person with a medical problem, even if the item is prescribed by a physician. A classic example of DME which HCFA has decided not to cover is an augmentative communication device which could enable a person with a speech disability to speak, but which HCFA views as a convenience item. Medicare will pay for an artificial larynx which replaces a surgically removed voice box, but will not pay for an augmentative communication device which substitutes for the function of malfunctioning vocal cords because speech is not a body part (see below). In contrast to augmentative communication devices, wheelchairs have always been covered as DME by Medicare because they enable a person who would otherwise be confined to a bed or chair to get around. There appears to be some recognition that there are negative health consequences to being confined to a bed or chair. HCFA apparently does not think that there are negative health consequences to not being able to speak, given HCFA's acute care definition of health. HCFA has also denied coverage for assistive technology, like safety aids, which could prevent acute care needs, if it does not require the involvement of medical personnel and is not part of an active medical treatment plan. This is illustrated below in the case of an extendable hand-rail system which would enable a person with a disability to climb stairs without falling. C. Generally is not useful to a person in the absence of illness or injury: Another requirement for durable medical equipment is that it "generally is not useful to a person in the absence of illness or injury". As a result, HCFA has excluded environmental control units from Medicare coverage on the grounds that they are a "convenience item". Instead of recognizing how environmental control units can assist a person with a disability to control their environment, HCFA has held that they do not meet the requirement that they are useful only to a person with an illness or injury even if they have "some remote medically related use" for a person with an illness or injury. In a frequently cited example of "Equipment Presumptively Nonmedical" from HCFA's Medicare Carriers Manual (Section 2100.1(B)(2), HCFA explains that Medicare would not pay for an air conditioner for a cardiac patient who needs an air conditioner to lower room temperature because an air conditioner could also be used by a person without a medical condition. "(I)n the case of a cardiac patient, an air conditioner might possibly be used to lower room temperature to reduce fluid loss in the patient and to restore an environment conducive to maintenance of the proper fluid balance. Nevertheless, because the primary and customary use of an air conditioner is a nonmedical one, the air conditioner cannot be deemed to be medical equipment for which payment can be made." This rationale, perhaps more than any other, belies the unwillingness of Medicare to actually consider whether a specific service or device would have a beneficial therapeutic effect on an individual Medicare beneficiary. By denying that thermo-regulation is a medical need, HCFA invites specialized equipment to be marketed for this purpose to replace the easy adaptation of a lower cost air conditioner. This section of the Medical Carriers Manual which is cited routinely to deny coverage for DME today was last revised in 1978. Medicare ignores the difference between a convenience item for a person without a disability and what is a functional necessity for fulfilling a medical purpose for a person with a disability. For example, one type of assistive technology is a voice-activated switch (called "Butler in the Box") which could enable a person who is quadriplegic due to a spinal cord injury to meet his or her ADL needs independently in his or her own home. Medicare would tend to treat this voice-activated switch as a convenience item for the person with a spinal cord injury because it would be a convenience item for a person without functional limitations. D. Is appropriate for use in the home: This criterion has been interpreted by HCFA as a way of limiting coverage for assistive technology that Medicare beneficiaries may require to function both in and outside their home. HCFA regulations require that Medicare will only cover equipment which is needed within the home. While Medicare will pay for a manual wheelchair for a person who would otherwise be confined to a bed or chair, Medicare will only pay for a power wheelchair for a person who cannot operate a manual chair in his or her own home. Many persons who require power-wheel chairs to move about in the community are denied coverage for power wheel chairs unless they also need them in their homes. This regulation fails to recognize that many people who cannot walk are not home-bound and that they have mobility needs in the community as independent participating members of society. If the person is not home-bound, there is no reason for health related assistive technology to be home-bound. Another example of arbitrary barriers being imposed by HCFA regulations involves eligibility for portable oxygen equipment. While no one would suggest that dependence on a respirator or ventilator is not medically necessary, HCFA has recently implemented a regulation since December 1, 1991, that requires a physician to document the need for portable oxygen in the home. This is designed to ensure that Medicare does not pay for portable oxygen unless the physician can explain the medical therapeutic purpose to be served which cannot be met by a stationary system, e.g. a patient's need to ambulate beyond 50 feet of tubing of the stationary equipment. Problems with Medicare's definition of prosthetic devices and orthotics The Medicare statute provides an arbitrary definition of prosthetic devices as "devices which replace all or part of an internal body organ" (Sec. 1861(s)(8). This definition also reflects the acute care bias in the health care system in 1965 when Medicare was passed. HCFA has used this definition of prosthetic devices to deny coverage for certain devices which enhance the functioning of a malfunctioning body part if it has not been removed from the body. This latter distinction may be relevant to the role that a physician must play in removing a malformed or malfunctioning body part, but it is irrelevant to the use of many types of prostheses which can improve functioning without physically replacing the malformed or malfunctioning body part. The National Council on Disability (NCD) was pleased that the Director of Medicare's Office of Coverage and Eligibility Policy, Robert E. Wren, indicated in a letter to George H. Oberle, Chairman of NCD's Committee on Technology, received on March 3, 1992, that HCFA would pursue the possibility of implementing one of NCD's initial recommendations to re-interpret the meaning of replacement of a body organ in the Medicare definition of covered prosthetic device. NCD had recommended that HCFA interpret the Medicare statute to cover prosthetic devices that reflect 1990's best practice and state of the art by including "improvement in the function of a malfunctioning body organ or substitute for a neurological dysfunction." As with DME, the Medicare statute does not provide a definition of orthotic devices but offers instead a representative list including leg, arm, back, and neck braces, and artificial legs, arms, and eyes (section 1861(s)(9) under the description of "medical and other health services". In a separate section on "Exclusions from Coverage", the Medicare statute lists the following examples: "personal comfort items", eyeglasses, hearing aids, and orthopedic shoes (section 1862(a). Special Exception Items HCFA includes a section in the Medicare Carriers Manual called "Special Exception Items" which explains that "specified items of equipment may be covered under certain conditions even though they do not meet the definition of DME" because they are not primarily and customarily used to serve a medical purpose and/or are generally useful in the absence of illness or injury. According to the Medicare Carriers Manual, "These items would be covered when it is clearly established that they serve a therapeutic purpose in an individual case..." However, HCFA has interpreted these exceptions as applying only to gel pads and heat lamps. In a qualifying note, HCFA insists that "(T)he above items represent special exceptions and no extension of coverage to other items should be inferred." The last time this section was revised was in 1975! Medicare Carriers determine what is "reasonable and necessary": It is the responsibility of Medicare carriers to decide whether specific claims are "reasonable and necessary" according to Medicare guidelines. These determinations are supposedly based on the medical documentation supplied by a physician and by rehabilitation professionals which contain information on: (1) medical diagnosis, (2) reason the equipment is needed, (3) patient's prognosis, and the (4) estimate of the duration of need. Where national policies exist, the Medicare carriers are obligated to enforce those policies. In the absence of national policy, however, individual Medicare carriers have some discretion in determining what is "reasonable and necessary" in consultation with its medical staff, and with HCFA, when appropriate, based on the law, regulations, rulings, and general program instructions. DME claims are more complex to process than other types of claims for physician or laboratory services because of the labor intensive nature of reviewing the documentation of medical necessity. Moreover, claims for DME and prosthetics, orthotics, and medical supplies (referred to as DMEPOS) represent only about 5 percent of most Medicare carriers' workload (cited in HCFA Proposed Rule for Carrier Jurisdiction for Claims for DME, Prosthetics, Orthotics and Supplies, and Other Issues Involving Suppliers, August 23, 1991, p. A15). According to HCFA, "Only a few large carriers have the claims volume to justify establishing special processing units or undertaking the extensive training needed to develop expertise in pricing claims and establishing comprehensive medical review guidelines. Most carriers find it inefficient to devote significant resources to the relatively few claims they process." As a result, Medicare carriers typically use the Medicare guidelines as an excuse for not considering whether equipment serves a "therapeutic purpose in an individual case". Even though physicians are asked to provide medical documentation of medical necessity, the Medicare carrier may dismiss a claim on the basis of certain types of equipment being "presumptively non-medical". These may include equipment which basically serves comfort and convenience functions such as elevators, stairway elevators, physical fitness equipment, self-help devices (e.g. safety grab bars) and training equipment (e.g. speech teaching machines). Case Study: Extendable Handrail as DME To examine the limitations of the Medicare program, researchers focused on a case in Minnesota which came to our attention during one of the NCD regional forums. This case revealed many of the obstacles to coverage based on an acute care oriented definition of medical necessity. (See Appendix B for record of the case concerning an extendable handrail system manufactured by the St. Croix Railing Company). The St. Croix Railing Company in Minnesota developed an extendable handrail device to provide support and balance to a person who has difficulty walking up a stairway. The extendable handrail device pivots out from the wall to within 22 inches of a fixed hand rail on the opposite side creating a "walker like" dual hand rail system that enables persons with diminished physical capacity to use stairs more frequently and without fear of falling. The total cost of the device for purchase and installation is approximately $1400 for which Medicare would be expected to pay 80% ($1120). The extendable hand rail can be very useful to frail elderly persons as well as to persons with early multiple sclerosis, muscular dystrophy, arthritis, stroke, trauma, and other physical disabilities. This system was developed with the assistance of two grants from the Department of Health and Human Services and has been approved for use by the Veterans Administration and has been used by Workers Compensation. [Insert Photo] As the distributor for the extendable handrail system, Becklund Health Care Supplies, Inc. has tried to get Medicare to pay for the purchase and installation of the extendable hand-rail device in the home of a Medicare beneficiary who has had difficulty climbing stairs. The Medicare beneficiary has osteoarthritis, and has a steel rod in her leg to the hip that makes it impossible to bend the knee without a support. She lives alone in the two-story home which she has lived in for 22 years with the only bathroom and bedroom on the second floor. The Medicare beneficiary needs the extendable handrail device to transfer between floors which is necessary to carry on activities of daily living. In addition, her treating physicians say she needs the handrail system to strengthen her legs, and the physical therapist explained that the extendable handrail was needed to enable the Medicare beneficiary to get exercise which she needs to reduce hypertension and to build cardiac vascular strength. The Medicare carrier has continued to ignore the medical and rehabilitation potential of the extendable handrail system for this specific Medicare beneficiary because HCFA's general guidelines for DME suggest that an extendable hand rail is a comfort or convenience item and therefore does not serve a medical purpose. (cite Robert Wren's letter received November 1989 in Appendix). Interestingly, Medicare covers such assistive technology as canes, crutches, walkers, and wheelchairs if a Medicare beneficiary has a condition which impairs ambulation, but is denying coverage for an Extendable Handrail which promotes mobility and independence at home. Instead of assessing the claim based on the extensive medical documentation provided by the Medicare beneficiary's physicians and physical therapist, the Medicare carrier has persisted in its view that an extendable handrail is more like safety grab bars or a stairway elevator which is presumptively non-medical equipment than it is like a walker which is covered by Medicare. After over a year of rejections and appeals, the Medicare carrier finally admitted that they had misplaced the medical records but they continue to reject the claim which is now scheduled for an Administrative Law Judge review. The Medicare carrier claims that their hands are tied because of the HCFA guidelines, while HCFA claims that the decision is up to the Medicare carrier.(include letter in Appendix). This case reveals several substantive policy issues: One is that the Medicare carrier did not complete an individual analysis of medical necessity to determine the therapeutic purpose of a piece of equipment because it was judged to be disqualified by HCFA's regulatory guidelines for non-medical equipment. Second, Medicare is unwilling to recognize that the extendable handrail has both practical and therapeutic purposes that are useful for both comfort and safety and for a medical and rehabilitation needs. Third, Medicare is non-responsive to the needs of this Medicare beneficiary for assistance with changing elevation levels which permit her to maintain independence and continue to reside in her home and carry on with activities of daily living. Medicare appears oblivious to the fact that keeping people autonomous in their own homes is less expensive than keeping them in nursing homes. Fourth, instead of assessing the medical purposes for a person's need, the function of the Medicare carrier seems to be to find a precedent that can be cited to justify denial of equipment as non-medical in nature. Fifth, the appeal process can be dragged out by the Medicare carrier over a very long period of time without being publicly accountable for misplacing records or for contracting with a lawyer who the Medicare carrier uses for all of their so-called Fair Hearings. Sixth, the Medicare regional office provides no oversight to inappropriate claims processing or other questionable hurdles at the Medicare carrier level. HCFA coverage criteria are inconsistently applied: HCFA continues to maintain a false dichotomy between medical purpose and functional purpose which allows it to limit coverage for certain types of DME that do affect health. Some types of DME which are viewed as medically necessary do not in fact cure a condition but are considered necessary only because they improve function. For example, a wheelchair is considered "presumptively medical" by HCFA because it improves the "function" of nonworking body parts even though it will not affect the course of a person's cerebral palsy, stroke or ALS. The Medicare standard is supposed to be that equipment is necessary when it can be expected to make a meaningful contribution to the treatment of the patient's illness or injury or to the improvement of his malformed body member. However, this standard is often applied arbitrarily. If gangrene requires amputation of a limb, Medicare would pay for a prosthesis even though the prosthesis would have no relation to the illness or disease, and the body part was not malformed. In addition, Medicare covers other services such as pain medication, palliative care, and occupational therapy which also do not cure conditions but promote function. However, Medicare will not pay for many types of assistive technology which can improve function without replacing a malformed body part. Medicare refuses to cover augmentative communication devices even though they meet all four of HCFA's criteria for DME. Clearly, they can withstand repeated use. Secondly, they are used exclusively to serve a medical purpose: to improve the functional abilities of a person with a significant communication disability. HCFA may argue that the content of the speech determines whether it should be regarded as "medical", but this excuse has been thoroughly exhausted under Medicaid. Thirdly, augmentative communication devices serve no purpose for people who do not have a significant communication disability. There is no reason why a person without a speech disability would consider using an augmentative communication device. And fourthly, they are appropriate for use in the home. The reason that HCFA offers to deny coverage for augmentative communication devices is that speech is a "convenience" rather than a medical necessity. This can be challenged on the grounds that speech can facilitate communication with one's physician. One can also suggest that enabling a person to speak can increase a sense of well-being, reduce frustration, and increase self-sufficiency all of which are likely to have a positive impact on one's health. One can also go back to the Medicare statute and see that an augmentative communication device is designed to improve the functional abilities of a person with a severe communication disability resulting from an illness, injury, or malfunctioning of a body member. Although the augmentative communication device does not replace the body member, it certainly substitutes for the function of a body organ which is what a prosthesis is. Many types of durable medical equipment which Medicare has always covered do not in fact treat conditions but only increase function. This is true of limb prostheses as well as of wheelchairs. Some mobility aids, like scooters, that Medicare covers as DME, could be regarded as convenience items for people without disabilities, but Medicare recognizes that they are more than convenience items for persons who cannot walk. A wheelchair does not replace legs, but it replaces the function of legs by enabling a person without control of his or her legs to move. If Medicare was consistent in holding that the ability to speak is a convenience, why would it pay for an artificial larynx even if it met the definition of a prosthesis? Sound public policy cannot allow HCFA to continue to treat speech as a medical necessity when the vocal cords have been removed while treating speech as a convenience when the vocal cords do not work due to neurological reasons. HCFA Initiatives Although DME costs are less than 2 percent of total Medicare expenditures, HCFA has focused on cost containment strategies in the DME area. These initiatives have been undertaken in response to complaints that DME suppliers have developed marketing and billing strategies to maximize profits and have not always provided beneficiaries with quality items and service. Many of these complaints involve taking advantage of the "point of sale" system which HCFA created through which DME vendors have incentives to structure their business so that they operate within the area of a carrier with the most favorable interpretation rules, utilization screens, local medical review policy, or pricing for their products. OBRA 1990 has authorized HCFA to based reimbursement on the rates established where the Medicare beneficiary resides. Supplier standards Most of the 48,000 suppliers of durable medical equipment who Medicare beneficiaries depend on for life-saving and functional enhancing equipment are not subject to state licensure laws, quality assurance standards, or other similar criteria typically required of health organizations and professionals. Medicare carriers have issued provider numbers to regulate who would be eligible to bill Medicare, but these provider numbers have not been allocated on the basis of any uniform national criteria to ensure appropriate business practices or quality standards for the DME. According to HCFA, many DME suppliers actually perform no supplier functions but contract with other suppliers to perform their marketing, order taking, and servicing, in effect "buying" Medicare claims at face value and inflating the amounts they bill to Medicare in order to make a profit. On the other hand, some centralized providers of specialized equipment have been unable to bill Medicare when they could not obtain a provider number because they did not have a local office in a specific Medicare carrier's jurisdiction. On November 6, 1991, HCFA issued a proposed rule (Federal Register, Vol. 56, No. 215m po. 55612) regarding DME claims payments to initiate a national system based on minimum standards for suppliers that is supposed to reduce fraud and abuse. Before a billing number could be issued, DME suppliers would have to disclose the identity of any person who has an ownership or control interest in the DME supplier and in any health care provider receiving Medicare reimbursement. This is designed to identify conflicts of interest between DME suppliers and providers of services and among DME suppliers that may affect how they operate. In addition, DME suppliers would be required to maintain a complaint log describing all complaints regarding delivery of Medicare covered items to Medicare beneficiaries, and keep a record of any warranties honored, repairs to rented equipment, and acceptance of returns of substandard and unsuitable items from Medicare beneficiaries. These records would be reviewed periodically by Medicare carriers to determine whether the DME vendors should be allowed to re-enroll every 2 or 3 years. The DME trade associations, including the National Association of Medical Equipment Suppliers (NAMES), the Home Care Coalition of the Health Industry Distributors Association (HIDA), and the Health Industry Manufacturers Association (HIMA) have taken a strong public stand against potentially fraudulent and abusive practices in the home medical equipment (HME) industry which can tarnish the reputation of their industry. HIDA held a consensus conference in May 1991 to develop recommendations for DME supplier standards for participation in the Medicare program. Certificates of medical necessity To reduce unnecessary payments for DME, Congress authorized HCFA in OBRA' 90 to prohibit DME suppliers from distributing to physicians completed or partially completed certificates of medical necessity forms (CMNs) that document a patient's medical need for specific items of equipment. Previously, physicians were allowed to sign the CMN after DME suppliers, who are more familiar with the intricacies of Medicare carrier billing requirements, had filled out the form. Medicare carriers are supposed to review CMNs to determine whether a covered item is reasonable and necessary for the diagnosis or treatment of illness or injury or to improve functioning. DME suppliers are concerned that requiring physicians to complete the new certificate of medical necessity will increase unnecessarily the physician paperwork burden and potentially disrupt Medicare beneficiaries' access to quality home medical equipment products and services. DME suppliers want to be allowed to continue writing the appropriate Health Care Products Coding System (HCPCS) code directly on the CMN for those items of equipment ordered and to include the names of the items of equipment that correlate with the HCPCS code. HCFA has begun requiring physicians to complete the CMNs for types of equipment that HCFA has identified as "abused or overutilized" including: TENS units, power operated vehicles, seat lift chairs, air fluidized beds, paraffin baths, and decubitus care pads/mattresses. Previous investigations by the Office of Inspector General (OIG) have undercovered various forms of "fraud and abuse" by DME suppliers who had succeeded in marketing various types of DME to Medicare beneficiaries. One type of fraud is advertising that Medicare beneficiaries can get Medicare to pay for certain types of DME at no cost to the Medicare beneficiary. Physicians reported being pressured to sign the CMN in order to avoid losing the patient. In its 1989 study of "Medicare Coverage of Power-Operated Vehicles, the Office of Inspector General (OIG) was concerned that more than half of its random sample of Medicare beneficiaries who used power-operated vehicles (POVs) that Medicare paid for in 1986 reported that they learned about POVs through television and other advertising, while thirty-seven percent learned about POVs from family, friends, and neighbors. Only 6 percent said they learned about POVs from a doctor or other medical personnel. Moreover, three quarters of these Medicare beneficiaries said it was their own or their family's ideas, not that of a health care professional, to obtain a POV. (Office of Inspector General, Medicare Coverage of Power-Operated Vehicles, July 1989). This finding was interpreted by the OIG as an indication that the POVs were not medically necessary, rather than that physicians are not generally familiar with the most useful types of DME to overcome functional limitations. The OIG reinforced its interpretation that the demand for POVs was illegitimately generated by aggressive supplier marketing by reporting that one-third of the beneficiaries claim they were told they would not have to pay anything for the POV. This, of course, is a direct violation of Medicare payment rules where Medicare is suppose to pay 80 percent of allowable charges, and suggests that the reimbursement rate which Medicare paid in 1986 may have been inflated to cover the 20 percent coinsurance which the supplier is legally obligated to collect from the Medicare beneficiary. Despite this claim, the OIG report actually provided no evidence that the POV beneficiaries did not pay the 20 percent coinsurance. Nevertheless, physicians confirmed that they generally played a passive role in prescribing POVs often signing the authorization after the POVs were delivered in one-third of the cases, and having little knowledge of Medicare coverage guidelines. On the basis of its random sample, OIG estimated that Medicare should not have paid for a majority of the POVs it paid for in 1986. This was primarily because sixty-two percent of the POV beneficiaries reported that they could operate a wheelchair manually when they obtained their POV, or they were using their POV exclusively outside their home in violation of the Medicare coverage requirements. To reduce inappropriate payments for POVs, the OIG recommended that Medicare carriers use medical staff to review each submitted POV claim for medical necessity, allow only certain specialists to authorize these claims, prohibit payment for DME unless suppliers receive a written order from a physician before the delivery of the item to the patient, and ensure that payments are made only for beneficiaries whose medical and/or physical conditions render them unable to use a wheelchair manually and who need a POV for indoor use in accordance with Medicare guidelines. HCFA questioned the OIG's estimate of the actual amount of inappropriate expenditures for power-operated vehicles, but shifted the blame from the Medicare carriers to the physicians who had certified that the equipment was medically necessary. This reinforces the acute care medical model. The General Accounting Office (GAO) has recently recommended that physicians be required to provide a narrative justification for the DME. In the few Medicare carriers who they studied, GAO researchers found a sharp drop in payments for three types of DME when the Medicare carrier required a narrative justification from the physician. (General Accounting Office, Durable Medical Equipment:Specific HCFA Criteria and Standard Forms Could Reduce Medicare Payments, June 1992). The study focused on TENS devices, power-operated vehicles (POVs), and seat-lift chairs. HCFA is concerned that narrative justifications from physicians may be difficult to process in a system that is moving to electronic billing. Meanwhile, DME vendors are concerned that requiring physicians to fill out narrative justifications would delay the process of claims submission and discourage physicians from prescribing medically necessary DME. The National Council on Disability (NCD) is concerned that many physicians know very little about DME. GAO focused entirely on whether the criteria for medical necessity and the documentation requirements for medical necessity reduced Medicare payments for DME. While payments dropped precipitously, it was not clear from this study whether this occurred chiefly because of a greater rate of denials or because of a smaller number of submissions. More importantly, GAO did not look at whether the criteria of medical necessity prevented Medicare beneficiaries from receiving the DME that they needed. Finding that Medicare carriers differed in the way they decided what DME is medically necessary, GAO estimated that a substantial amount of Medicare payments could have been avoided. What GAO did not ask but is the major focus of this Report is whether the Medicare criteria for medical necessity are in fact appropriate in relation to the Medicare beneficiaries' health care needs. Consolidation of DME claims processing into four regional DME Medicare carriers HCFA is planning to consolidate all DME claims processing into four regional DME Medicare carriers. On the basis of a Request for Proposal which is due in mid-July 1992, the four regional DME carriers will be announced in the fall of 1992 and become operational in the summer of 1993. Consolidation is expected to permit the development of a more specialized capacity to process DME claims, and it is also expected to create greater uniformity than exists now among the 34 private insurers who act as Medicare Part B carriers. However, this HCFA initiative appears to be developed primarily as a strategy to reduce perceived "fraud and abuse" in the Medicare DME program. There has been very little recognition of the problems which HCFA's arbitrary definitions of medical necessity cause for Medicare beneficiaries. In the development of standardized medical review policy, pricing, and utilization screens, it is imperative that HCFA encourage input from Medicare beneficiaries as well as DME vendors on the appropriateness of medical necessity criteria which will be used by the regional DME carriers. It would be a huge mistake to limit input on utilization screens, medical review guidelines, and medical policy to Medicare carrier medical directors and medical review staff. C. State Flexibility State government has no role in the administration of Medicare. As a federal entitlement to health care, HCFA provides uniform standards for administration. Medicare fiscal intermediaries and carriers are charged with the responsibility to assure that payments are made only for services that are covered under Medicare Part A or Part B. However, since medical practice patterns and prices vary throughout the country, the Medicare program relies on decentralized decision-making by Medicare fiscal intermediaries and carriers to decide when a health care technology or service is covered under Medicare. The decentralized administration of Medicare through fiscal intermediaries and carriers, is sensitive to local variations in price and practice patterns. It also provides some significant discretion to Medicare carriers in interpreting standards of medical necessity. While the statutory definition excludes coverage for comfort items, the Medicare statute does not make the judgment whether a specific device is a convenience or medical necessity for a specific person. Many items are denied routinely because either they are not primarily medical in nature (e.g. they are deemed to be educational, environmental control, hygienic, self-help, or convenience/comfort items), or they are non-reusable supplies, or they are inappropriate for home use. Sensory and communication aids are notable because of their absence from the inventory of commonly covered products as are environmental control units, and environmental modifications. The list is only a set of guidelines for Medicare carriers and is not legally enforceable. In fact, there is room for interpretation of coverage by each carrier. Where a national coverage decision does not exist, Medicare contractors have the authority to decide whether the service in question appears to be reasonable and necessary for a specific individual. Even when a claim for a new, or otherwise questionable service is received, the contractor is authorized to make reasonable and necessary decisions with respect to the service, in the absence of applicable national policy. These decisions are usually made in consultation with the contractor's own medical staff and local medical specialty groups. In fact, coverage decisions made by the same contractor may appear to vary from claim to claim reflecting relevant differences in the circumstances in which the service is furnished or the need of the particular beneficiary for that service. National Coverage Decisions: If a contractor cannot resolve a coverage question satisfactorily, or believes a national coverage decision may be necessary, the issue is referred to HCFA central office through a HCFA regional office. Another source of contractor referrals is the Coverage/Payment Technical Advisory Group (TAG) which is made up of medical directors and other officers of the carriers and intermediaries, which meets every six to eight weeks with HCFA staff to discuss its experience with various coverage and payment issues. The Bureau of Eligibility, Reimbursement and Coverage (BERC) within HCFA may decide to initiate the process for a national coverage decision if one or more of the following factors is present: (1) The service is likely to be used in more than one region of the country. (2) The service is likely to represent a significant expense to the Medicare program. (3) The service has the potential for rapid diffusion and application. (4) There is substantial disagreement among experts regarding the safety, effectiveness, or appropriateness involved in the use of a service. (5) The service represents a significant advance in medical science. (6) The service represents a new product, that is, a device, drug, or procedure for which there is no similar technology already covered under Medicare. (7) The service has been subject to inconsistent coverage decisions by contractors or regional offices and a conflict can only be resolved by a national decision. (8) The service that was commonly accepted by the medical profession has become outmoded or otherwise not in the public's interest. Approximately two hundred national Medicare coverage decisions have been made on individual health care technologies since the Medicare program was established in 1965. When confronted with inconsistent coverage decisions, HCFA representatives have on occasion warned that a national decision on certain types of assistive technology, such as augmentative communication devices, would eliminate the discretion that some Medicare contractors have shown toward this assistive technology. National coverage decisions would be binding on Medicare carriers. To the extent that various types of assistive technology are already viewed as excluded by Medicare statute, a national coverage decision by HCFA would not be able to override these statutory constraints. On the other hand, HCFA has imposed its own interpretations on the definitions of DME and prosthetic devices. There are various steps involved in making a national coverage decision. HCFA has an internal advisory organization composed of physicians and other health professionals in HCFA's Central Office and counterparts from the Public Health Service called the HCFA Physicians' Panel. This organization meets periodically in closed session to consider whether specific coverage decisions should be referred to the Public Health Service for an Inquiry or a full Assessment. Inquiries provide information to HCFA while Assessments provide recommendations to HCFA for a coverage decision. On the basis of this information, recommendations, and any other material that HCFA deems appropriate, HCFA decides whether to issue a national coverage decision which is then included in the Issuances in the Coverage Issues Manual and published in the Federal Register. Health Care Technology: HCFA has developed a complex process for approving health care technology for Medicare coverage. Since medical technology is the leading contributor to the rise of health care costs throughout the health care system, there are some important links between HCFA and the Office of Health Technology Assessment (OHTA), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), and the Centers for Disease Control (CDC) in the Public Health Service which have an important role in evaluating: (1) safety and effectiveness of medical services, (2) experimental or investigational nature of new services, and (3) appropriateness of specific services. While many types of medical technology should be subject to this review process, it appears that many types of assistive technology do not raise issues of safety or effectiveness. Rather, these types of assistive technology raise questions about whether they fall within a reasonable interpretation of the meaning medical purpose. Interestingly, HCFA reports that as many as 65.8 percent of Medicare carrier decisions in 1990 which were appealed to conclusion are eventually reversed (see Table 48 in 1991 HCFA Statistics, p. 41.) In FY 1991, 63.6% of appeals at the review stage, 58.8% of appeals at the fair hearing stage, and 67.0% of appeals at the Administrative Law Judge stage, reverse the decisions of the Medicare carrier and result in decisions favorable to the consumer (Carrier Appeals Report, Fiscal Year 1991). However, the number of appeals is a tiny fraction of the total number of denials. The problem is that most people whose claims are denied do not have the knowledge or resources to make an appeal and therefore do not receive a favorable judgment. Payment Policy: HCFA has developed payment policies for different types of DME which attempt to control costs, provide access to appropriate equipment, and address the maintenance, repair, and replacement needs associated with using DME. Medicare payment policy for different types of health care services is specified in the Medicare statute (section 1834(a). Prior to 1987, DME and prosthetics and orthotics were reimbursed on a reasonable charge basis reflecting the average charges in a geographical area. OBRA 1987 eliminated reasonable charge reimbursement and replaced it with a fee schedule for all suppliers, effective January 1, 1989. DME is divided into six categories (referred to as the six point plan) which stipulate the method by which equipment may be acquired (rental, purchase or either) and specified how fee schedule payments are to be calculated for each category. Under the fee schedule, payment for all affected items is in the amount of a single fee, calculated for each item for each carrier area. Subsequent fee increases are limited to annual adjustments based on the Consumer Price Index-Urban. This was revised by OBRA '90 so that increases are now based on a factor called a covered item update. (See Chart 1: Medicare Reimbursement for Durable Medical Equipment, pp. 166-167 in 1992 Green Book). In addition, HCFA is proposing to centralize the processing of claims for DMEPOS to four designated Medicare carriers throughout the country and to require fees to be based on the location of the Medicare beneficiary rather than the point of sale. Although centralization is being introduced to reduce fraudulent and abusive marketing practices, it remains to be seen whether these changes will reinforce a narrow interpretation of the necessary and reasonable standards or allow for a broader interpretation based on a more knowledgeable review of DME claims. Centralization will provide economies of scale in processing DMEPOS claims that will permit greater expertise in establishing comprehensive medical review guidelines and expertise in processing claims. In its proposed regulations, HCFA indicates that its contracts with regional carriers for processing DMEPOS claims will have utilization screens, medical review guidelines and medical policy for the most frequently used codes in order to enhance consistent claims processing among regional carriers. Medicare providers and suppliers can accept assignment and bill Medicare directly or collect the entire bill from the Medicare beneficiary. If assignment is accepted, the provider or supplier is obligated to accept the allowable charges that Medicare will reimburse for and only bill the Medicare beneficiary for a 20 percent copayment based on the allowable charge. HCFA reports that 81.1 percent of Part B claims were assigned in 1990. Historically, DME suppliers have been geared more for long term rental of equipment rather than sales. In the original Medicare legislation of 1965, Medicare Part B only covered rental of equipment. The provisions including purchase of equipment as an option, whether through a lump-sum or a lease-purchase arrangement, were added with the Social Security Amendments of 1967. DME suppliers have preferred rental arrangements because their repair and maintenance costs could be built into the rental costs which simplified their administrative paperwork. Long term rental of DME has also been more profitable to a supplier because, over the course of the rental period, the supplier could receive more than the total value of the equipment. To counter this tendency, HCFA has revised its rental/purchase guidelines. Since 1989, Medicare is using a six-point reimbursement policy for durable medical equipment which was established by the Omnibus Budget Reconciliation Act (OBRA) of 1987 (P.L. 100-203). This Medicare Part B reimbursement policy applies different payment policies to different classifications of DME, prosthetics, and orthotics. The six classifications of medical equipment are: . Inexpensive or other routinely purchased DME: This category includes items such as canes, walkers, commodes, crutches or other equipment which do not cost more than $150. In addition, this category includes equipment which is acquired by purchase at least 75 percent of the time. Items in this category can be rented or purchased. . Equipment requiring frequent and substantial servicing. Items in this category include intermittent positive pressure breathing equipment, volume ventilators, suction pumps, and CPAP machines. Items in this category can only be rented with maintenance and servicing included in the rental payment. . Customized equipment. These are items which are constructed or substantially modified to meet the unique needs of an individual person. The items can be covered on a purchase basis only, and there are no guidelines which Medicare carriers must use in determining prices for customized equipment. Medicare will also pay for maintenance and servicing not covered by the manufacturer's warranty. . Prosthetic and orthotic devices. Such items include urinary and colostomy equipment, transcutaneous electrical nerve simulators (TENS Units), braces, prosthetic limbs, and artificial eyes.] Items in this category are covered on a purchase basis only with the exception of TENS Units. A trial rental period of two months is required on a TENS Unit before converting to a purchase. . Capped rental items. Items in this category include hospital beds, pressure pads, and wheelchairs, including electric wheelchairs effective with dates of service May 1, 1991 and after. Prior to May 1, 1991, these items could only be considered as rental items. Medicare would pay for up to 15 months of continuous rentals for medically necessary items. After 15 months of continuous rentals, suppliers retained title to the equipment but were required to provide the item to the patient without charge until medical need ended. Since May 1, 1991, the patient must be offered the option of purchasing the item in the 10th rental month or, in the case of electric wheelchairs, the patient must be offered the option to purchase in the initial month as well as in the 10th month of rental. If purchased, title to the equipment transfers to the patient. If rented, title remains with the supplier but the supplier must continue to furnish the equipment without charge until medical need ends. The Medicare patient, not the supplier or the Medicare carrier makes the decision to rent or purchase the item. . Oxygen and oxygen equipment. Rental for equipment is included in the monthly purchase of oxygen. Replacement of equipment which the beneficiary owns or which is a capped rental item is covered in cases of loss or irreparable damage or wear and when required because of a change in the beneficiary's condition. Medicare does not cover replacement of rented equipment except capped rental items. Maintenance and servicing of purchased equipment is covered in the following classes: inexpensive or routinely purchased, customized items, other prosthetic and orthotic devices, and capped rental items. Maintenance and servicing of purchased items that require frequent and substantial servicing, or oxygen equipment is not covered. Payment may not be made for maintenance and servicing of rented equipment other than the maintenance and servicing fee established for capped rental items. Payment for replacement of rental cap items and items requiring frequent and substantial servicing is based on a reasonable lifetime of five years. With OBRA 1990, Medicare will phase in national limits on fees for all DME except customized equipment. In addition, prosthetics and orthotics will be subject to regional limits rather than national fee limits. D. Current Policy Issues HCFA has focused on fraud and abuse in the DME industry as a way to contain health care costs. There has been no recognition that HCFA's regulations for DME have severely limited access to assistive technology that could improve the health, safety, and ADL needs of persons with disabilities. Among the public policy issues which need to be reexamined is whether Medicare should continue denying coverage for health related assistive technology which promotes functional improvement. Many of these devices are currently excluded as so-called "comfort" or "convenience" items by HCFA regulations because of an acute care definition of medical purpose, and requirements that equipment must be primarily and customarily used by persons who ill or injured, and that the equipment must be needed in the home to be covered by Medicare. HCFA has developed strategies to reduce fraud and abuse through national standards for supplier numbers and regionalization of DME carriers. While this may lead to greater uniformity in standards, it is not clear how it will lead to the development of more appropriate standards. So far, the regionalization process is being handled through HCFA staff and Medicare Medical Directors with no opportunity for input by Medicare beneficiaries and the organizations which represent them or DME vendors. HCFA is trying to continue using physicians as gatekeepers to the Medicare system by requiring them to completely fill out the Certificate of Medical Necessity, etc. This strategy which may be reasonable for medical services which physicians have expertise in, does not make sense for most forms of assistive technology. HCFA should consider to what extent physicians are appropriate gatekeepers for most forms of assistive technology based on their expertise in assessing needs and their knowledge about best practices in assistive technology. HCFA should learn how other countries such as Canada (and Sweden) finance technical aids for persons with disabilities through their health care system where rehabilitation professionals play a critical role as authorizers of many forms of assistive technology. HCFA is trying to contain health care costs but has not looked at the impact of assistive technology on the health consequences for persons with disabilities. For example, is it really cost-effective to not pay for safety bars in the bathroom when Medicare pays for the preventable health care that occurs when falls occur at home? Requiring DME to be "not useful to a person in the absence of an illness or injury" ensures that the equipment is likely to be highly stigmatized and the price is unnecessarily costly. This may conflict with HCFA's emphasis on cost containment. E. Facilitators All Medicare beneficiaries are eligible for Medicare covered services which are found to be necessary and reasonable. Many types of assistive technology can be covered by Medicare if they are integrated within a larger treatment plan that is supervised by a physician. Medicare will pay for the maintenance, repair, replacement, and training for use of assistive technology which is covered by Medicare. Medicare requires a trial period for two months for certain types of assistive technology, like Transcutaneous electrical nerve stimulation (TENS) Units so that the Medicare beneficiary can experience the functional advantages of this device over other alternatives before deciding to purchase the equipment. Although the primary consideration in determining coverage under Medicare is the medical need in the home, equipment may be used outside the home. Medicare generally accords greater weight to the medical opinion of an attending physician (called the treating doctor rule) than the medical judgment of an employee of the Medicare carrier who does not actually see the Medicare beneficiary. F. Barriers HCFA has historically resisted broadening its interpretation of Medicare's definition of DME and prosthetic devices to include many forms of assistive technology which could promote functional capacity and independence. Medicare was created with a very restrictive view of medical purpose for DME which focuses primarily on ambulation, respiration, ingestion and elimination. As a result, most of the DME which is covered by Medicare relates to one of these four functions. Medicare does not generally pay for DME that is not directly related to reducing acute health care needs. Physicians and other Medicare providers are often not sufficiently knowledgeable about Medicare's documentation requirements to demonstrate how assistive technology is medically necessary. The ultimate determination of whether Medicare will pay for assistive technology often depends on whether the prescription for the device is integrated into a larger medical treatment plan. This reflects the acute care legacy of Medicare which existed when Medicare was created in 1965. Persons who are eligible for both Medicare and Medicaid often have less access to assistive technology than persons who are eligible for only Medicaid. This occurs when Medicaid refuses to conduct a prior approval review before sending the claim to Medicare for a determination of the Medicare contribution to the cost of the device; instead Medicaid decides to pay only 20 percent of the allowable charge rate that Medicare uses, leaving the individual to pay the difference between Medicare's allowable charge rate and the actual price of the equipment. In the absence of Medicare, Medicaid would likely cover the full cost of the equipment if it was determined that the individual was eligible for it. The solution to this penalty for "dually eligible persons" which is often referred to as the "cross-over" problem has already been found for the Medicaid programs in California and Maine pursuant to court orders in Charpentier v. Kizer (US Dist Court ED Cal) and Vigue v. Ives (US Dist Court Me). This solution should be required of all Medicaid programs without additional lawsuits. The solution is for Medicaid to proceed with prior approval for dual enrollees and to pay the full cost of the equipment which an individual is eligible for minus the contribution which Medicare makes as the primary payer. Medicare does not cover SSDI beneficiaries during the two year waiting period when they are most likely to need appropriate rehabilitation and assistive technology. G. Suggestions for Reform FEDERAL LEVEL: Definition of medical necessity Medicare should expand the definition of medical necessity from what is needed for acute care to all services which promote "health, safety, and Activities of Daily Living (ADL) needs". This approach is more consistent with the statutory purposes that Congress intended for Medicare than the restrictive regulations that HCFA has developed for DME. This proposed definition would not cover all assistive technology that increases function caused by a medical condition. But it would appropriately extend Medicare coverage to environmental control devices, safety equipment, self-help equipment for ADL needs, and communication devices. The latter would be covered to the extent that communication devices affect communication with medical personnel, would increase an individual's response to an emergency situation, and could reduce or prevent depression resulting from a frustration to communicate with others. The definition of medical necessity should also eliminate the home-based definition of need although locus would be taken into account as one determinant of purpose. If a device is used exclusively in the workplace, it would be regarded as having a vocational purpose rather than a medical purpose, even if it involves life-supports (e.g. oxygen mask for coal miners) and would not be covered by health insurance. On the other hand, if the device is used in both the workplace and home (like a wheelchair is likely to be) it would be regarded as having a medical purpose in both places and would be eligible for health insurance coverage. Finally, if a device is used exclusively in the home but does not affect health, safety, or ADL needs (even though it can increase function which has been limited by a medical condition) it would not be regarded as having a medical purpose and would not be eligible for health insurance coverage (e.g. closed caption TV). EXECUTIVE . Revise HCFA regulations and policy guidelines regarding DME to broaden "medical purpose" to include services which promote "health, safety, and ADL needs"; . Eliminate the Medicare requirement that equipment or devices which are regarded as medically necessary must be useful only to a person with an illness or injury; . Eliminate requirement that need for DME must be based exclusively on need within one's home; . Interpret the Medicare statutory definition of prostheses to mean devices which improve the function of a malfunctioning body organ or substitute for a neurological dysfunction regardless of whether the device replaces or substitutes for a missing or malfunctioning body part. . Expand the Special Exception section to include all devices which serve a therapeutic purpose in an individual case. Eliminate the requirement that the device is part of a patient's active plan of care under the supervision of a physician. . Seek input from Medicaid beneficiaries with disabilities and DME vendors in the development of medical review guidelines, utilization screens, and medical policy for regionalized DME carriers. . Examine different models in other countries for financing assistive technology through the health care system in order to identify better ways to authorize service, etc. . Develop a systematic process for publicizing the conditions under which various types of assistive technology are considered to be medically necessary for specific individuals by certain Medicare carriers. This dissemination process will create precedents which build an expanded "institutional memory" among Medicare carriers which currently classify most types of assistive technology as "convenience" items; . Develop the capacity of Medicare Part B claims reviewers to make better decisions about the medical necessity of assistive technology; . Provide outreach and technical assistance to physicians and other specialty Medicare providers to increase their awareness of the documentation requirements of medical necessity for assistive technology; . Develop appropriate quality assurance mechanisms to contain abuse without denying access to basic health related services; . Study the cost-effectiveness of expanding Medicare coverage for assistive technology as prevention services to reduce the secondary disabilities of Medicare beneficiaries with disabilities. In addition, assistive technology can reduce the incidence of primary disabilities among family members (many of whom are also Medicare beneficiaries) who often provide necessary personal assistance. LEGISLATIVE . Amend the Medicare statute to cover assistive technology which promotes "the health, safety, and ability of the individual to meet ADL needs as independently as possible". . Require Medicare to create a separate track for authorizing assistive technology. . Hold Medicare responsible for the cost of nursing home care which could have been avoided if Medicare covered assistive technology which enabled Medicare beneficiaries to function more independently in their own home. STATE LEVEL: . There are no recommendations for State level changes in the Federally-administered Medicare program. However, states should adjust their Medicaid policies to avoid penalizing persons who are dually eligible for Medicare and Medicaid. Medicaid should make a prior approval determination before sending the claim to Medicare for partial reimbursement. II. TITLE XIX OF THE SOCIAL SECURITY ACT: MEDICAL ASSISTANCE (MEDICAID) . Mandatory And Optional Services . Early Periodic Screening, Diagnosis And Treatment (EPSDT) . Intermediate Care Facilities For Persons With Mental Retardation And Related Conditions (ICF/MR) . Section 2176 Waivers (Home and Community Based Services; Model 200) . Community Supported Living Arrangements Program. [42 USC Section 1396 et seq.; 42 CFR 430-456] Background Title XIX of the Social Security Act contains the statutory authority for Medicaid, the federal-state Medical Assistance program, initially authorized under the Social Security Act Amendments of 1965 (P.L. 89-97). The statutory purposes of the Medicaid program, as enacted in 1965, are to enable each state, "as far as practicable under the conditions in such State, to furnish (1) medical assistance on behalf of families with dependent children and of aged, blind, or disabled individuals, whose income and resources are insufficient to meet the costs of necessary medical services, and (2) rehabilitation and other services to help such families and individuals attain or retain capability for independence or self care" [42 USC Section 1396]. Medicaid funding is shared between the federal government and the states, with federal shares ranging from 50 to 83 percent, depending on federally established annual average per capita income. The average federal share is 57 percent. Total federal Medicaid expenditures in FY 1990 were $41.1 billion, covering services to an estimated 25,529,000 individuals. This number is projected to increase to 27,333,000 in FY 1991 and the federal expenditures are projected to exceed $54 billion. Medicaid also is an entitlement program, i.e., services meeting state and federal requirements (other than demonstration and waiver programs) must be provided to eligible individuals without regard to state or federal appropriation levels. States must choose to participate in the Medicaid program. They do so by submitting a state medical assistance plan to the Health Care Financing Administration, U.S. Department of Health and Human Services, that meets criteria established by the federal government [42 USC Section 1396a(a)]. At this time, all states participate in the Medicaid program. The state plan must identify the services, both mandatory and optional, that will be part of the state's Medicaid program (see below); assure that the Medicaid program is administered on a statewide basis, must specify the amount, duration and scope of each service it provides in order to reasonably achieve the purpose of the program; that services available to any categorically needy beneficiary in the State must be equal in amount, duration and scope to any other categorically needy beneficiary in the state; that persons eligible for services have freedom of choice in the selection of service provider, and that it provide an opportunity for individuals to challenge the denial of eligibility or coverage or the failure to make a decision in a timely manner; and designate a single state agency which will be responsible for administration of the program. The state plan also must provide assurances regarding the state's financial contribution to the program. Eligibility for the Medicaid program is based on means tests as defined by the individual states. There are three basic types of eligibility: (1) mandatory eligibility for the categorically needy, i.e., those whose eligibility is linked to their eligibility for programs such as Supplemental Security Income (SSI) or Aid to Families with Dependent Children (AFDC), which is required; (2) optional eligibility for certain other groups who do not receive cash assistance but who would otherwise be eligible; and (3) optional eligibility for the medically needy, those who, except for income and resources, fall into one of the categories covered by the state (i.e., aged, blind, disabled, families with dependent children, pregnant women and children); and whose income and/or resource are in excess of the standards for categorically needy coverage, and who become eligible by a spend down process. To ensure broader coverage of low income pregnant women and children, Congress began decoupling Medicaid eligibility from welfare in 1987. OBRA 1990 required states, effective July 1, 1991, to provide prenatal care and child health care for pregnant women and children up to 6 years of age at 133 percent of federal poverty level. OBRA 1990 also allows states to expand this coverage up to 185 percent of the federal poverty level. Although states must make payments on behalf of the categorically needy, they have considerable flexibility in the specific means criteria (income and resources levels) that they use, especially for AFDC recipients. Coverage of the medically needy is based on limits of income and resources to qualify as medically needy, the so-called spend down requirements, as defined by the states within federal guidelines. Coverage of children under age 18, who require the level of care provided in a Medicaid-certified institution and whose parents' income and resources exceed SSI eligibility standards, is also a state option under TEFRA 134 (see third paragraph of Section C, State Flexibility, for more on TEFRA 134). P.L. 101-239 also mandated expansion of the EPSDT program, as described below. OBRA 1990 (P.L. 101-508) also added phased-in mandatory coverage of children up to 100 percent of the federal poverty level; states must cover children up to age 19 by the year 2003, beginning at age 7 as of July 1, 1991. The mandatory and optional services of the Medicaid program as they relate to the financing of assistive technology are described in the following section. 1. MEDICAID MANDATORY AND OPTIONAL SERVICES A. Background Federal statute and regulation define eleven services that states are required to provide to categorically needy individuals as a condition of participation in the Medicaid program. The following services must be made available to the categorically needy, and if included in the state plan, optional groups of the categorically needy: . inpatient hospital care; . outpatient hospital care . laboratory & x-ray services; skilled nursing facility services for persons age 21 and over; . family planning services and supplies to women of childbearing age; . physicians' services; . nurse midwife services; . home health services, including medical supplies and equipment for persons age 21 and over; . early, periodic screening, diagnosis and treatment for individuals under age 21; . rural health clinic services; . services to pregnant women; . certified pediatric and certified family nurse practitioners; . federally qualified health centers. The last two mandatory services were added by the Omnibus Budget and Reconciliation Act of 1989 (P.L. 101-239). There are also over thirty optional services that states may choose to provide through their Medicaid program, including rehabilitation services; prosthetic devices; durable medical equipment; occupational, physical, and speech-language therapies; personal care services; targeted case management; and intermediate care facility services, including services in an institution for people with mental retardation and related conditions (ICF/MR). States exercise great flexibility, however, in the amount, scope and duration of both mandatory and optional services that are covered by their state Medicaid plan; for example, a state may choose to cover only a limited number of visits by a therapist, or place a dollar cap on the service provided. B. Financing Assistive Technology Medicaid rules provide states with many options in financing assistive technology. Among the mandatory services, for example, states can finance durable medical equipment as part of the mandatory home health services benefit. As described below, the EPSDT program can be used extensively to finance technology for children up to 21 years of age. A provision added in 1988 (P.L. 100-360) clarified that Medicaid can be used for the cost of related services in a school aged child's individualized educational program (IEP) under Part B of IDEA and in an infant or toddler's individualized family services plan (IFSP) under Part H of IDEA. Assistive technology is a covered expense under the following optional Medicaid services: prosthetic devices, physical therapy, occupational therapy, speech, hearing and language therapy, rehabilitation services, eyeglasses, preventive services, ICF/MR and CSLA (for profiles of these last two Medicaid options, see 3. ICF/MR and 5. CSLA below). Assistive technology provided to Medicaid eligible individuals typically requires prior medical approval, must be medically necessary as defined by the individual state, and can be obtained only from vendors and providers licensed by the state Medicaid agency, within federally specified guidelines. C. State Flexibility States have great flexibility in the design of their Medicaid programs, especially in five areas: (1) eligibility, (2) optional services, (3) amount, scope and duration of covered services, (4) use of Medicaid waivers, and (5) reimbursement methodologies. Because of this flexibility, no two states have the same program. As mentioned above, states can choose to limit Medicaid eligibility only to the categorically needy. Within that option states can influence eligibility by setting very low income and resource criteria for eligibility into the AFDC program which, in turn, determines eligibility for Medicaid for this portion of the categorically needy population. In general, SSI recipients on the basis of age, blindness or other permanent disability are categorically eligible for Medicaid; however, federal law permits states to use more restrictive criteria in relation to income and resources in determining their Medicaid eligibility. This so-called 209(b) provision is used by fourteen states (Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, Nebraska, New Hampshire, North Carolina, North Dakota, Ohio, Oklahoma, Utah and Virginia). A major eligibility option affecting children with disabilities is the so-called Katie Beckett or TEFRA 134 option, because of its origin in the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982 (P.L. 97-248). Under this provision, states may choose to make non-institutionalized children with disabilities eligible for Medicaid who would be eligible if they were institutionalized for more than thirty days. This provision allows the waiver of deeming parental income and resources so that children with severe disabilities in middle income families can receive Medicaid services. The most recent information from the National Governor's Association is that only nineteen states have chosen this option. Medicaid allows states the further option of expanding their Medicaid programs to include groups of persons who may meet the family characteristics criteria of the categorically needy programs, but who cannot meet the strict financial limits on income and resources imposed by those programs (i.e., SSI or AFDC). Because these people are viewed as having excess income, federal law allows states to impose a spend down. I.e., the medically needy may be required to incur some medical costs prior to becoming eligible for Medicaid. In addition, states have the option of offering different optional Medicaid services and different amount, scope and duration of the same services to the medically needy than they do to the categorically needy. States have almost unlimited options in the selection and definition of their Medicaid services. Although federal legislation and regulations require that coverage of services as to amount, duration and scope must be sufficient to reasonably achieve its purpose, in practice state are permitted considerable discretion in setting these limits. Waivers of comparability, state wideness and freedom of choice are also used by states to shape their individual Medicaid programs. Although some federal waiver requirements place limits on eligible populations, states generally have considerable latitude in their waiver designs, and in their choice of waivers to apply for. States also have considerable freedom to develop their own methods and standards for reimbursement of Medicaid services, including the specific rates of payment for different types of service. Under Medicaid law, providers must accept the Medicaid reimbursement as payment in full. D. Current Policy Issues Recent legislation, in particular the Omnibus Budget and Reconciliation Act of 1989 (OBRA 1989 - P.L. 101-239) and OBRA 1990 (P.L. 101-508), has reduced state flexibility to some extent. In addition to stronger mandates on Medicaid eligibility of low income women and children, OBRA 1990 included provisions to clarify that Medicaid home health services can be financed in settings other than the individual's home (e.g., at school) beginning in 1994; codifying the regulatory definition of optional rehabilitation services, including services in facilities, homes or other settings for maximum reduction of physical disability and restoration to the best possible function level; and authorization of the Community Supported Living Arrangements program (see below). Regarding limits on coverage of private duty nursing services, the Health Care Financing Administration (HCFA) issued a policy clarification directing state Medicaid directors to apply a court decision (Detsel v. Sullivan, 895 F.2d 58, 2d Cir. 1990) on the issue. This decision clarified that the state could not use an at home only limitation on private duty nursing services. A class action has been filed (Skubel v. Sullivan) to extend the decision in Detsel to Medicaid home health care nurses. As described in the overview of findings, states have raised concerns about mandates that will increase their Medicaid costs. For example, the National Governors' Association has offered proposals to reduce or delay mandates in expanded eligibility for low income women and children, expansion of the EPSDT program, and state responsibility for some low income people's Medicare co-payments. On September 12, 1991, HCFA promulgated an interim final rule which has potentially devastating effects on state Medicaid services, including those to children and adults with disability and their families (Federal Register, Sept. 12, 1991, pp. 46380 et seq.). The rule defines the conditions under which state expenditures for Medicaid services would qualify for federal matching funds (federal financial participation, FFP). The rule prohibits the use of provider voluntary contributions and severely restricts the use of certain state-imposed, provider specific taxes as allowable expenditures for the purpose of claiming federal Medicaid matching funds. The rule also implies that certain intergovernmental transfers may be illegal, such as those used in state home and community based services and early intervention programs. The rule is effective January 1, 1992. There is concern that the rule also would prohibit the use of local government tax dollars or funds from other state agencies as state match, which will significantly increase fiscal pressures in most state Medicaid programs. As a result of the outcry over the proposed rule by numerous parties, the House Subcommittee on Health and the Environment conducted two hearings on the issue. Subsequently, the House passed legislation to rescind the rule. While debating the House Bill (H.R. 3595) the Senate substituted legislation reflecting a final hour compromise reached between the National Governors' Association and the White House to cap the state provider tax share of state Medicaid matching funds at 25 percent. E. Facilitators There are several policy statements in Medicaid law and regulation that strongly support access to financing. Broad support is contained in the definition of rehabilitation as one of the two central purposes of the program. States also must provide assurances in their state Medicaid plan that each service is "sufficient in amount, duration and scope to reasonably achieve its purpose" (42 CFR 440.230(b)) and that they will "provide such safeguards as may be necessary to assure that eligibility for care and services under the plan will be determined, and such care and services will be provided in a manner consistent with simplicity of administration and the best interests of the recipients" [42 USC Section 1396a(a)(19)]. States also are not permitted to "arbitrarily deny or reduce the amount, duration, and scope of a required service ... to an otherwise eligible recipient solely because of the diagnosis, type of illness or condition" [42 CFR 440.230(c)]. Although this requirement states that it is applicable only to required services, it has been applied to optional services as well. In combination, these provisions lay a foundation for access to assistive technology that will meet the medical needs of Medicaid eligible individuals with disabilities, including promotion of greater independence or self care. Another facilitator is the potentially broad scope of assistive technology coverage that is possible under the Medicaid program, including supportive services and therapies as well as assistive devices. Medicaid is also a federal entitlement program, i.e., not subject to a closed-end federal appropriation. Medicaid is also targeted to needy individuals because of their low income and lack of resources, and can be targeted to those who are needy specifically because of their expenditures for health care, under the optional medically needy category or use of the TEFRA option. F. Barriers The primary barriers are found in state implementation of the program. Such barriers include: use of medical necessity and related prior approval or authorization requirements; limits placed on cost, amount, scope and duration of assistive technology, and State decisions not to include coverage of those optional services that provide coverage for assistive technology. Overall, there has been little emphasis in most states on rehabilitation as one of the two primary purposes of the Medicaid program. This is compounded by (1) a lack of knowledge of assistive technology and its significance in improving health status among professionals preparing and reviewing documentation of medical necessity, and (2) pressures for Medicaid cost containment. Assistive technology often is seen as a convenience rather than medically necessary. Another barrier at the state level is state limits on eligibility. At the present time, thirteen states do not cover the medically needy population. Thirteen states (not necessarily the same thirteen) exercise the 209(b) option to limit Medicaid eligibility to some SSI recipients with disabilities and only nineteen states are known to have opted to expand eligibility permitted by TEFRA. Nationally, there is evidence that more than 37 million Americans are without Medicaid or other health care coverage, many because their low earnings are marginally over state and federal limits for Medicaid eligibility. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Reinforce rehabilitation as one of the two policy goals by adding a definition of medical necessity that includes rehabilitation, independence, self-care and long-range benefits; . Issue specific policy guidance on assistive technology, including definitions (preferably those found in the Technology-Related Assistance Act, as part of the move to establish a uniform definition across federal programs); . Clarify the various ways that assistive technology can and should be financed through Medicaid; . Collect/analyze data on the effects of amount, scope and duration limits, including access to assistive technology; . Enforce prohibitions on diagnosis-based service eligibility criteria and inappropriate amount, scope and duration limits; . Support research and technical assistance on using Medicaid for assistive technology. LEGISLATIVE . Shift at least one major assistive technology related service from optional to mandatory -- either physical therapy/occupational therapy/speech and hearing therapy or prosthetics and orthotics; . Add a definition of medical necessity that includes rehabilitation and long-range benefits; . Eliminate the 209(b) option; . Clarify (with a technical amendment, if necessary) that private duty nursing, home health and personal care assistance can be in multiple locations; . Add a prevention component; recognize the importance of secondary disability and prevention of illness through assistive technology. . Mandate the TEFRA 134 option. STATE LEVEL: . Review use of medical necessity, prior authorization, and amount/scope/duration limits in relation to rehabilitation, long-range benefits, assistive technology effectiveness; . Provide information/technical assistance to reviewers on assistive technology; . Include knowledge of assistive technology in standards for providers, especially therapists, case managers, rehabilitation services, personal care attendants, and home health vendors. 2. THE EARLY PERIODIC SCREENING, DIAGNOSIS AND TREATMENT PROGRAM (EPSDT) A. Background EPSDT was added to the Medicaid program as a mandatory service in the Medicaid amendments of 1967 (P.L. 90-248). The purpose of the program is to identify health problems facing young low-income children from birth to 21 years of age so that early intervention can prevent illness or more serious difficulties; to provide treatment and other measures to correct or ameliorate any physical or mental "defects" or chronic conditions discovered; and to promote utilization of EPSDT services through outreach and assistance in using available programs (e.g., through arranging transportation). All states must include EPSDT as a covered service. EPSDT screening, as a result of OBRA '89, must include a health and developmental history, a comprehensive unclothed physical exam, vision, hearing, and dental screening services. States must establish periodicity schedules that set out the frequency of screening and that meet reasonable standards of medical and dental practice. OBRA 1989 (P.L. 101-239) significantly expanded the EPSDT benefit by requiring that any Medicaid service listed in Section 1905(a) of the Act for which federal reimbursement is available (most Medicaid mandated and optional services) -- and that is medically necessary to treat or ameliorate a condition, physical or mental illness, or a condition identified through the screening process -- must be provided to EPSDT participants regardless of whether or not such services are covered under the state plan. Such services must be provided without regard to the limits on amount, duration and scope in the state plan. Previously, states were required to provide only diagnostic and treatment services for defects in vision and hearing, including eyeglasses and hearing aids; dental care needed for relief of pain and infection, restoration of teeth and maintenance of dental health; and immunizations. The number of low income children eligible for Medicaid will increase due to Medicaid amendments in OBRA 1990 (P.L. 101-508) which require states not already doing so to phase in coverage of children age 7 - 19 years up to 100 percent of the federal poverty level by the year 2003. More children are expected on the SSI rolls as a result of the U.S. Supreme Court decision in Zebley v. Sullivan which expanded the definition of disability for low-income children with disabilities. In addition, OBRA '89 requires states to phase-in up to 80 percent enrollment of all Medicaid eligible children in EPSDT by 1995. B. Financing Assistive Technology Although there are no specific references to assistive technology in the regulations governing EPSDT, eligible children in need of assistive technology are now entitled to whatever Medicaid financed services are medically necessary (e.g., medical equipment, rehabilitation, physical therapy, etc.) regardless of their state's individual Medicaid plan and state limits on amount, scope and duration. Items covered include but are not limited to eyeglasses, hearing aids, wheelchairs, braces, augmentative communication devices, environmental controls, etc. C. State Flexibility States continue to have flexibility in some aspects of the EPSDT program, in particular the inclusion of the medically needy. The amendments described above, however, have placed significant limits on state flexibility in EPSDT services, in the interest of improved health care for low income children, regardless of their state of residence. Federal EPSDT guidelines do, however, permit states to place appropriate limits on EPSDT services based on medical necessity. D. Current Policy Issues States are currently awaiting further guidance from HCFA regarding limits they can impose in their definition of medical necessity, i.e, in the definition of settings where services may be covered. Proposed regulations are not expected before spring 1992. E. Facilitators The primary facilitator is the provision that requires states to provide services based on individual need and state-defined medical necessity without regard to their individual state plan Medicaid program limitations. Access to financing also will be improved for low income children in states which must now phase in coverage to 100 percent of poverty level. F. Barriers The primary barriers are the lack of knowledge of assistive technology among the professionals participating in the EPSDT program compounded by families' lack of awareness of the program. A significant potential barrier are state limits imposed in the name of medical necessity, such as a requirement that services are covered only when provided in a clinic! Access is also limited in states which do not cover the medically needy population. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Enforce the new provisions; resist pressures to back down on implementation; . Clarify the medical necessity definition as described above for the basic Medicaid program. STATE LEVEL: . Promote knowledge development/dissemination on assistive technology . Monitor follow-up on individual care plans, including access to assistive technology; . Promote collaboration with Part H and Part B of IDEA (Individuals With Disabilities Education Act) and the Children with Special Health Care Needs/MCH Block Grant programs and Head Start. 3. INTERMEDIATE CARE FACILITIES FOR PEOPLE WITH MENTAL RETARDATION AND RELATED CONDITIONS (ICF/MR) A. Background The ICF/MR program is an optional Medicaid service enacted by Congress in 1971. All states currently provide ICF/MR services. Medicaid certified ICF/MR facilities must serve a minimum of four individuals, must provide active treatment and meet over 200 federal standards for certification, and must provide services only to people with mental retardation or related conditions who are in need of active treatment and who require 24-hour supervision. Related conditions includes developmental disabilities which is defined to mean an individual within the term "mental retardation and related conditions" as set forth in regulations in effect on July 1, 1990, and is as follows: "The term "developmental disability" means a severe, chronic disability of a person which -- (A) is attributable to a mental or physical impairment or combination of mental and physical impairments; (B) is manifested before the person attains age twenty-two; (C) is likely to continue indefinitely; (D) results in substantial functional limitations in three or more of the following areas of major life activity: (i) self-care, (ii) receptive and expressive language, (iii) learning, (iv) mobility, (v) self-direction, (vi) capacity for independent living, and (vii) economic self-sufficiency; and (E) reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated. Program expenditures (both federal and state) in FY 1990 were $7.6 billion, providing for approximately 143,000 residents in 5,700 facilities. States are required to review each ICF/MR resident's continuing eligibility and appropriateness for ICF/MR care at least twice a year. In addition, states must assure and monitor each person's receipt of continuous active treatment, in line with an Individual Program Plan (IPP) that has been developed by each person's interdisciplinary team. Active treatment is defined as "aggressive, consistent implementation of a program of generic training, treatment, health services, and related services." Each resident within an ICF/MR facility must receive a continuous active treatment program consisting of needed interventions and services in sufficient number and frequency to support achievement of the objectives identified in the IPP. [42 CFR 283.440(d)(1)]. B. Financing Assistive Technology Assistive technology can and must be financed through the ICF/MR program when it is determined to be part of the individual's active treatment program. The federal regulations and standards for ICF/MR certification include several requirements that support access to assistive technology. IPP development must begin with individualized assessments, including sensorimotor development that looks at the extent to which corrective, orthotic, prosthetic, or support devices are needed; and communication development that includes identification of augmentative or assistive devices that may be needed to improve communication and functional status. The IPP must describe specific objectives based on the comprehensive assessment, with single "behavioral outcomes" that are measurable and that have defined dates for implementation. It must identify also mechanical supports as needed to achieve proper body position, balance or alignment and the availability of any needed mobility devices [42 CFR 483.440(c)]. ICF/MR facilities are further required to furnish, maintain in good repair, and teach residents to use and make informed choices about the use of the assistive devices identified as needed by the interdisciplinary team and provide sufficient space and equipment to enable staff to provide needed services [42 CFR 483.470(g)]. ICF/MR surveyors are expected to check on the furnishing of assistive technology to residents and to ensure that items are in good repair, repaired on a timely basis, properly fitted to the individual, and that loaners are made available during repairs. C. State Flexibility States have great flexibility in the ways they use the ICF/MR program to finance facilities for the eligible population, with some states using the program primarily or exclusively for large state institutions, some using ICF/MR to finance many small private facilities in the community, and others with various mixes of facility size and public-private auspices. States also may have sub-categories of ICF/MR facilities with varying eligibility and level of care criteria. Because ICF/MR is an optional Medicaid service, states with medically needy programs can choose to limit the ICF/MR benefit to only the categorically needy Medicaid eligible. D. Current Policy Issues Like EPSDT, there are no unique services that are listed under the ICF/MR services definitions; rather, they are a vehicle for securing health, nursing, rehabilitative, social, physician and other services, as defined in the general Medicaid program, and as appropriate, assistive technology. E. Facilitators The primary facilitator that promotes access to financing is the requirement for active treatment. Standards and guidelines governing the monitoring of active treatment, including the related requirements on individual assessments, the IPP, and physical condition of the equipment, include several references to assistive technology. These policies support full access to assistive technology when found appropriate to meet individual needs. F. Barriers The two barriers associated with the ICF/MR program are lack of knowledge of assistive technology options and its significance among the professionals who determine the individual program plan. Also retrospective determination of reimbursement levels leaves providers short of resources to meet current needs. A related barrier is a lack of coordination in many states between the state survey-quality assurance program and the reimbursement system. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Require all Qualified Mental Retardation Professionals (QMRPs) to receive training in assistive technology; . Continue/expand training to states on quality assurance, including access to assistive technology; . Examine disparities between quality assurance and state Medicaid plan requirements (e.g., assistive technology services per individual program plan vs. state limits on amount or duration). LEGISLATIVE . Include knowledge/competency in assistive technology in professional qualifications; . Include definition of assistive technology in standards, using definition found in the Technology-Related Assistance Act. STATE LEVEL: . Provide technical assistance/disseminate information on assistive technology to ICF/MR directors and state directors of Medicaid agencies; . Emphasize the full range of assistive technology in ICF/MR monitoring; . Help providers negotiate state Medicaid limits. 4. HOME AND COMMUNITY BASED SERVICES (HCBS OR SECTION 2176) WAIVERS A. Background HCBS waivers, including Model waivers, are Medicaid program options enacted in OBRA 1981 (P.L. 97-35) that can be used by states to provide a wide range of home and community-based services (other than room and board) for individuals who in the absence of such services would require Medicaid funded institutional services (e.g., in an ICF/MR, nursing home or hospital). States may request waivers of statewideness and comparability of services under HCBS. States also may also expand eligibility up to 300 percent of the SSI standard including supported employment for persons leaving institutions. Services may include case management, habilitation, homemaker/home health care, personal care, adult day health services, medical supplies, physical, occupational and speech therapy, nursing care, respite, and other services requested by the state and approved by the Secretary of the Department of Health and Human Services. For regular HCBS waivers (i.e., not including Model waivers), the number of HCBS participants approved for each state waiver is limited by the federal requirement that total Medicaid waiver costs cannot exceed the amount that would have been expended for the participants' institutional care. Thus only those individuals may be served through the waiver who otherwise would have been served in a Medicaid funded institution; states have been required to document that sufficient beds exist (or would be certified or built) to serve all individuals who would be institutionalized in the absence of a waiver ("cold bed" provision). HCBS waivers can be targeted to people with mental retardation and related conditions eligible for ICF/MR services, people with mental illness, those with physical disabilities who do not meet the definition for related conditions, individuals with AIDS/HIV infection, and the elderly. Total federal expenditure for FY 1991 was $1,186,970,300 for 55,626 participants with forty-one states participating for FY 1990 or 1991. This is an average per capita expenditure of $21,338. Model waivers are limited to a maximum of 200 individuals and there are currently 160 active waivers. Although frequently considered to be a program for children with disabilities and associated with the Katie Beckett waiver, there is no federal restriction on age. States also may target their model waiver to any subgroup of the population with disabilities who would otherwise be institutionalized. B. Financing Assistive Technology Federal financial participation is available for assistive technology covered in the state's approved waiver program. Waiver applications include specific references to environmental modifications, specialized medical equipment and supplies, and Personal Emergency Response Systems (PERS) as allowable services. Specialized medical equipment and supplies are limited to items not furnished under the state's Medicaid plan or are furnished in greater quantity or scope. States also can define other types of assistive technology. C. State Flexibility States have great flexibility in determining which services they will provide through their waiver programs and the amounts of service to be covered, subject only to a cost-neutrality test. Although the maximum number of waiver participants is capped for the HCB waiver (total number of people who would otherwise be institutionalized and a maximum of 200 for the model waiver), states may use the waiver for fewer than the number that the Health Care Financing Administration would approve. In addition, waiver participation is a state option, and states may choose not to request any waivers. States also have the option of refusing waiver services to individuals whose waiver costs would exceed average institutional care costs. As indicated above, states also have complete flexibility regarding the specific disability related eligibility criteria for waivers, and in addition may offer waiver services only to residents of certain geographic areas. D. Current Policy Issues HCFA has developed a streamlined waiver application format, including pre- defined services that states can use to submit their waiver application just by checking them off; it is these definitions that include environmental modifications, specialized medical equipment and supplies, and PERS. States also are free to continue to develop their own definitions. E. Facilitators The primary advantage of the waiver program is that access to Medicaid financing is not dependent on institutional placement, but is available in home and community settings to individuals who would require an institutional level of care. In addition, states can provide waiver services that are not available as optional services in the states's Medicaid plan, or can authorize broader amount, scope and duration, all within a fiscally controlled environment. F. Barriers The primary barrier for many HCBS waiver participants is that their state waiver does not necessarily include assistive technology. Lack of knowledge among professionals is a related barrier. Residents of some states who could benefit from assistive technology in home and community based settings are unable to use the waiver program because their state has chosen not to participate or to limit participation. In addition the federal caps on HCBS waiver programs act as a barrier to financing for an unknown number of individuals. States which choose not to provide waiver services to individuals whose care would be less costly if they were institutionalized may limit to access to financing by forcing them to choose between access to assistive technology and life in their home and community. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Continue/expand efforts to help states use these waivers effectively; . Review cap provisions and "cold bed" provisions; . Conduct an evaluation of the program, including an examination of assistive technology as a significant support to home and community-based living; . Improve program monitoring to include outcomes for individuals and consumer satisfaction. LEGISLATIVE . Expand/modify definition of assistive technology in waiver application to conform to one used in the Technology-Related Assistance Act. STATE LEVEL: . Include assistive technology as a waiver service; . Conduct state-level evaluation that includes outcome measures, consumer satisfaction. 5. COMMUNITY SUPPORTED LIVING ARRANGEMENTS (CSLA) PROGRAM A. Background OBRA 1990 (P.L. 101-508) established the CSLA program as an optional Medicaid state plan service for recipients with developmental disabilities who would otherwise be eligible for Medicaid and are living in their own or in their family's home, apartment, or other rental unit with no more than three other service recipients. Unlike the HCBS waiver program, eligibility does not require that people be at risk of institutionalization to be eligible for CSLA services. A maximum of eight states were authorized to participate during the first five years of the program, with a total federal authorization of $100 million. The Health Care Financing Administration selected eight states through a competitive review of twenty-seven state applications during September 1991. These were awarded to California, Colorado, Florida, Illinois, Maryland, Michigan, Rhode Island and Wisconsin. The CSLA program authorizes participating states to provide one or more services to assist in activities of daily living necessary to permit them to live in the community. Services may include adaptive equipment, assistive technology, personal assistance, training, and "habilitation services necessary to assist the individual in achieving increased integration, independence, and productivity." Services are to be defined in an individual support plan (ISP). Room and board, pre-vocational, vocational and supported employment services may not be financed. CSLA includes several requirements for checks and balances in program planning and monitoring. State CSLA plans must be reviewed by the state's Developmental Disabilities Planning Council and Protection and Advocacy System. Public hearings must be held on the CSLA quality assurance plan prior to its adoption and implementation. Additionally, monitoring boards must be established that include consumers and family members as well as providers and neighbors; and information on monitoring findings must be available to the public. B. Financing Assistive Technology Adaptive equipment and assistive technology are mentioned specifically as examples of services that states can provide in their CSLA program. In addition, the law mandates supports such as personal assistance, and training and habilitation services, 24-hour emergency assistance, services necessary to aid an individual to participate in community activities, among others, to permit such individuals to live in the individual's own home, family home or rental unit. C. State Flexibility States are not required to submit applications for the CSLA program, however, twenty-seven states applied in competition for the eight available approvals. States have considerable flexibility in the design of their individual CSLA programs, within federal guidelines and the checks and balances outlined above. D. Current Policy Issues National disability organizations continue to press Congress to expand CSLA and to make it a regular Medicaid state plan option available to all fifty states as a state decision rather than as a competitive national contest. Advocates feel also that there should be continued research and evaluation in the area of supported living. E. Facilitators Assistive technology is specified as an eligible service, along with adaptive equipment. In addition, the program's focus on individualized supports for community participation, independence, productivity and integrated living, are directly related to the rationale for optimal access to assistive technology. Financing also should be facilitated by the various opportunities for consumer input on CSLA program design and monitoring. F. Barriers The primary barrier is the limited funding available for CSLA, and its availability in only eight states as presently authorized. Additional barriers may be identified as the program is implemented in the states. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Conduct an evaluation of CSLA, including the use of assistive technology, beginning as soon as possible to permit accurate collection of baseline data; . Include at least minimum requirements for state level evaluation and agreement to participate in a national evaluation in future CSLA applications; . Support research and technical assistance on supported living, including the use of assistive technology. LEGISLATIVE . Amend statute to make CSLA an optional Medicaid state plan service for all states choosing to use it; . Use common definition of assistive technology, as described in Appendix D. STATE LEVEL: . Include assistive technology in supports being provided; . Include knowledge/competency in assistive technology in training and qualifications for supported living providers; . Collect data/conduct an evaluation focused on the cost effectiveness of supported living; . Include access and appropriate use of assistive technology in monitoring supported living services. III. TITLE V OF THE SOCIAL SECURITY ACT: MATERNAL AND CHILD HEALTH SERVICES ÀÀ The Maternal and Child Health Services Block Grant ÀÀ Children with Special Health Care Needs ÀÀ Special Projects of Regional and National Significance [42 USC 701] Background Title V of the Social Security Act has authorized the Maternal and Child Health Services programs since 1935. Significant amendments to the program were made in 1981 when seven categorical programs, including Maternal and Child Health Services and the Crippled Children's Services Program, were consolidated into a single Maternal and Child Health Services (MCH) Block Grant. Title V also authorizes the smaller Special Projects of Regional and National Significance (SPRANS) program. The block grant mechanism gives states considerable flexibility in using federal funds to achieve the purposes of the legislation, consistent with documented state needs. At the same time, however, the consolidation reduced federal funding for the combined programs by 25 percent in the first year. Program amendments in the Omnibus Budget Reconciliation Act of 1989 (OBRA 1989 - P.L. 101-239) linked the purpose of the Title V programs to national health goals. The redefined purpose is "to improve the health of all mothers and children consistent with applicable health status goals and national health objectives established by the Secretary under the Public Health Services Act for the Year 2000." 1. THE MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT OBRA 1989 made major changes to the MCH block grant. These changes included refinement of the basic program purposes such as reduced state flexibility in expenditures of federal block grant funds and new reporting and application requirements. A stronger focus on family-centered and community-based systems development and required coordination with the Medicaid program was mandated. A. Background The purposes of the MCH block grant are to: (1) enable each state to provide as well as to assure access to quality MCH services, especially to those with low income or limited access to health services; (2) prevent and reduce death, disease, and disability/health promotion, in particular for low income women and children; (3) provide rehabilitation services not otherwise covered by Medicaid for low income children under the age of 16 with blindness or other disability who are receiving SSI payments; and (4) to promote family-centered, community-based, coordinated care for children with special health care needs. The authorized federal funding level for the MCH block grant was increased by $125 million by OBRA 1989 to $686 million, including a 15 percent set-aside. This 15 percent set-aside, to be determined by the Secretary of HHS, was for demonstrations, research and training. An additional 12.75 percent set-aside of any appropriations exceeding $600 million was also mandated for six specific types of projects. Actual appropriations however were $587.3 million in FY 1991, with $499.2 million only going to the states. The Maternal & Child Health Block Grant appropriation for FY 1992 is $000.00 million. State block grant amounts are determined by such factors as the state's population of low income children. Grants ranged in FY 1991 from $990,000 to $37.6 million. States are required to match every $4 in federal funds with $3 in state funds. OBRA 1989 also added new requirements on state use of MCH funds, including maintenance of state effort at FY 1989 levels; a 10 percent limit on expenditures for program administration; a 30 percent earmark for preventive and primary care for children; and a 30 percent earmark on services for children with special health care needs (see below). OBRA 1989 also added several requirements to the block grant application process. Under the original block grant legislation (OBRA 1981 - P.L. 97-35), states submitted a "description of intended expenditures" to DHHS. The new provisions require an application following a specific format, including the results of statewide needs assessments and plans consistent with national health objectives in three areas: (1) preventive and primary care for pregnant women, mothers and infants; (2) preventive and primary care for children; and (3) community-based services for children with special health care needs. In addition the applications must be available for public comment prior to their submission to DHHS. Extensive annual reporting requirements also were added. A fourth emphasis of OBRA 1989 was on more effective coordination between services funded by the MCH block grant and by Medicaid. Provisions include linkages between MCH and Medicaid on the implementation of the Early Periodic Screening, Diagnosis and Treatment (EPSDT) program; requirements for each state to have a toll-free telephone service to provide information on Title V, Medicaid, and other relevant health and health-related providers and practitioners; outreach and assistance for pregnant women and infants in obtaining Medicaid coverage; and detailed reporting requirements on use of the Medicaid program for MCH services. B. Funding of Assistive Technology The major MCH block grant funding mechanism for assistive technology is the Children with Special Health Care Needs program, described below. The basic MCH program can be used to finance assistive technology, primarily in coordination with the Medicaid program, in particular the EPSDT component. C. State Flexibility State flexibility was reduced to some extent by the OBRA 1989 amendments, including the earmarking of funds for preventive and primary care, for children with special health care needs, and the 10 percent limit on administrative expenditures. These restrictions apply only to the federal funds, not to the state funds provided as match. Beginning with their FY 1992 applications and annual reports, states also are required to provide much more detailed information than previously regarding their needs assessments, plans for expenditures, and coordination activities, using a standardized format developed by DHHS that reflects the purposes contained in the legislation. What effects this may have on state flexibility in program design are unclear. According to the Association of Maternal & Child Health Programs, states responded well to the new requirements in their FY 1991 applications. D. Current Policy Issues Implementation of the Title V amendments in OBRA 1989 is still in process, and federal guidance on state block grant applications and annual reports is being refined for the FY 1992 applications. Based on a review of the draft application guidelines, these will refine and expand guidance on needs assessment and coordination between the MCH and Medicaid programs, especially the expansion of the EPSDT program. The first applications to come in under OBRA 1989 based guidelines were those for the FY 1991 grants. E. Facilitators The increased emphasis on coordination with the Medicaid program (EPSDT in particular), coupled with Medicaid outreach and application assistance, as well as the program's overall focus on the needs of low income mothers and children and on family-centered, community-based care, should be significant in promoting access to financing. The toll-free telephone service is a potential facilitator in helping families identify assistive technology providers. Another strength of the program is the requirement that MCH services be based on a statewide needs assessment, and that there be opportunities for public review and comment on the state MCH block grant application. Other features of the Children with Special Health Care Needs and SPRANS programs are also relevant to access to assistive technology and are described below. F. Barriers There are no inherent barriers. Funding constraints and the federal appropriation levels well below authorized amounts may make it difficult for states to expand or to develop an assistive technology initiative. Adjusted for inflation, current funding is approximately one-half of pre-1981 funding levels for the consolidated programs. 2. CHILDREN WITH SPECIAL HEALTH CARE NEEDS A. Background The Crippled Children's Services program was renamed the Children with Special Health Care Needs (CSHCN) program in 1986. The purpose of the CSHCN program is "to provide and to promote family-centered, community-based, coordinated care (including care coordination services) ... for children with special health care needs and to facilitate the development of community-based systems of services for such children and their families" (OBRA 1989 - P.L. 101-239). Care coordination services are defined as "services to promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for children with special health care needs and their families." OBRA 1989 deleted references to specific services that could be provided (e.g., medical, surgical and corrective services) to focus the CSHCN program on family, community, coordination, access to a comprehensive array of services, and the development of appropriate systems of care. States must include a specific description of needs and plans for CSHCN expenditures in a separate section of their MCH block grant application. For example, preliminary guidance from DHHS on the assessment requires documentation that the CSHCN agency conducted an inventory of the public programs which are actual or potential sources of services or funding for children with special health care needs and their families, as well as relevant collaborative mechanisms. States must indicate how they will conduct needs assessments at the local level on the development of community-based systems of services. The application also must provide information regarding the basic purposes of the CSHCN program, including a description of the activities that will be conducted to assure that services provided or funded by the state CSHCN agency are coordinated, family-centered, and culturally competent. Information also must be provided on the ways services to children with special health care needs and their families are coordinated with basic MCH program services. B. Financing Assistive Technology Although there is no mention of assistive technology in the legislation or policy guidance, it can be financed through the CSHCN program as a community based service. State CSHCN agencies may provide assistive technology directly or through the provision of assistance. Technology also may be financed through rehabilitation services provided to children and adolescents receiving SSI. OBRA 1989 amendments added a requirement, however, that MCH funds only be used to the extent that assistance is not provided through the Medicaid program. In addition, MCH/CSHCN programs in several states are responsible for reviewing complex or expensive assistive technology Medicaid claims. Traditionally, Crippled Children's Services programs in most states included various types of assistive technology, provided primarily to children with orthopedic disabilities. Title V funding restrictions prohibit the use of funds for inpatient services, other than inpatient services provided to children with special health care needs or to high-risk pregnant women and infants; cash payments to intended recipients of health services; facility construction or major improvement; and the purchase of major medical equipment (e.g., hospital CAT scans). C. State Flexibility States continue to have broad flexibility in the design of their CSHCN programs, including target populations, eligibility requirements, and services. The extent of provisions of OBRA 1989 that will be implemented to require certain kinds of service priorities or eligibility standards is not clear. Based on the proposed application guidance for the FY 1992 block grant, it appears that states will continue to have great flexibility so long as they document that their approach is based on their own needs assessment. OBRA 1989 also requires documentation of public participation in the applications process. As noted above, states also are not required to use a minimum of 30 percent of state MCH funds on CSHCN, as they must with their federal MCH allocation. D. Current Policy Issues As with the overall implementation of the OBRA 1989 amendments, it is too early to tell what the effects will be of new federal application and reporting guidance. Observers are particularly interested in the extent to which state CSHCN programs shift emphasis from direct services to service development and coordination. The federal MCH division is currently developing a technical assistance plan to help states meet the new requirements. E. Facilitators The primary features of the CSHCN program that can facilitate access to the financing of assistive technology are the emphasis on family-centered and community-based services are the focus on the development of coordinated community- based systems of care and the overall emphasis on coordination. Access also may be helped by the new requirements for the application process, including the opportunity for public review. F. Barriers There are no inherent barriers in the CSHCN program. It is unclear to what extent barriers exist in implementation at the state level. Implementation of the application and reporting requirements of OBRA 1989 is just underway, and there is therefore little information on the impact of these provisions. However, there is no reference to assistive technology in the legislation or in the proposed application and reporting requirements and the program receives limited federal funding. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Add specific policy to clarify that promoting access to assistive technology is an appropriate use of MCH funds, including the definition of assistive technology and the recognition of its significance in optimal development; . Designate assistive technology as a priority in research and technical assistance activities; . Promote coordination with EPSDT, IDEA Parts B and H, Head Start and Technology-Related Assistance grant programs on assistive technology financing; . Collect/analyze information on access to assistive technology. LEGISLATIVE . Include the need for assistive technology in the guidelines/requirements on the needs assessment and state plan for children with special health care needs. STATE LEVEL: . Provide technical assistance on assistive technology at the local level, including coordination on funding strategies and reduction of duplication/gaps. 3. SPECIAL PROJECTS OF REGIONAL AND NATIONAL SIGNIFICANCE A. Background The MCH Block Grant provides for a 15 percent set-aside used by the Department of Health and Human Services to carry out special projects of regional and national significance (SPRANS). The federal set-aside funds grants for research, training, hemophilia diagnosis and treatment; genetic diseases screening, counseling, and referral; MCH improvement projects to demonstrate and test a variety of approaches intended to improve the health of and services delivered to mothers, infants, children, adolescents, and children with special health care needs; pediatric AIDS health care demonstration projects; and projects to improve emergency medical services for children. Approximately 500 grants receive funding during a fiscal year. Specific grant eligibility criteria vary depending on the focus of the grant (e.g., research, training, etc.) B. Financing Assistive Technology Two types of SPRANS grants are especially relevant to the financing of assistive technology: MCH improvement project grants focused on children with special health care needs, and training grants in relation to this population. Some research grants also may involve the use of assistive technology. Many training grants help support diagnostic and multi-disciplinary services at public clinics, such as those operated by the University Affiliated Programs (UAPs) co-funded by the Administration on Developmental Disabilities. C. State Flexibility Some SPRANS grants are directly targeted to state MCH programs, and others require their review and coordination. States also frequently provide support to the individual grantees in their application and implementation of SPRANS resources. D. Current Policy Issues Policymakers are awaiting reports on the implementation of the OBRA '89 requirements. E. Facilitators SPRANS grants can support a wide range of training, research and demonstrations that include assistive technology. The program is potentially significant through its direct support (e.g., through the UAPs' clinics) and indirectly through the training of personnel to become knowledgeable about assistive technology and the research on specific devices and interventions. Federal funding is consistent through the 15 percent set-aside mechanism. F. Barriers Assistive technology, other than ventilators and respirators, has very low visibility in the SPRANS program, and has not been listed as a priority in federal grant announcements. Information on the use of funds for assistive technology is not available. Although the set-aside provision assures federal support for the grant program, the federal MCH block grant appropriation is consistently well below the authorization level, affecting resources available at the state level and the 15 percent SPRANS funding accordingly. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Designate assistive technology as a priority for research and dissemination activities; . Synthesize/disseminate information on previously funded projects that have included assistive technology. STATE LEVEL: . Use the review and coordination process to ensure that assistive technology is included in SPRANS activities. IV. INDIVIDUALS WITH DISABILITIES EDUCATION ACT (IDEA) ÀÀ Part B: State And Local Grant Program For Special Education ÀÀ Part H: State Grants For Infants And Toddlers [20 USC Section 1400-1485] ÀÀ Related programs: . Special Education in State Operated Programs; and . Vocational Education Background The Education of the Handicapped Act (EHA) in 1975 (P.L. 94-142) established as a federal mandate the right to education for children with disabilities. The law was expanded to include pre-school, infants and toddlers with disabilities (P.L. 99-457). The purpose of the Individuals with Disabilities Education Act is to "assure that all children with disabilities have available to them ... a free appropriate public education which emphasizes special education and related services designed to meet their unique needs, to assure that the rights of children with disabilities and their parents or guardians are protected, to assist States and localities to provide for the education of all children with disabilities, and to assess the effectiveness of efforts to educate children with disabilities." The amendments of 1990, the Individuals with Disabilities Education Act (IDEA - P.L. 101-476) included rewording of "the handicapped" and "handicapped children" to "individuals" and "children with disabilities." Definitions of both assistive technology devices and assistive technology services were added to Part A of IDEA through P.L. 102-119, The Individuals With Disabilities Education Amendments of 1991. These definitions therefore apply to all programs authorized by IDEA. 1. PART B: STATE AND LOCAL GRANT PROGRAMS FOR SPECIAL EDUCATION A. Background Part B of IDEA provides two types of grants to state education agencies: pre-school grants for children ages three to five and grants for children ages six to twenty-one, commonly known as Part B grants. Federal funding to the states in FY 1990 was estimated at $1,524,610,000; the FY 1991 estimate is $1,615,125,000, of which approximately 13.6 percent is for pre-school programs. Basic grants to the states are determined by a formula based on the total number of children with disabilities ages 3 - 21 receiving special education in each state and the national average per pupil expenditure by state. In FY 1990 federal Part B grants to states ranged from $644,295 to $152,398,865; the national average was $26,596,724. States are required to channel at least 75 percent of the federal Part B grant funds to local and intermediate educational agencies. Over 4.5 million children with disabilities nationwide, ages 3 - 21, are receiving special education and related services under this program. In order to receive their Part B funds, each State Education Agency must submit a plan outlining how it will assure the implementation of federal requirements. Children with disabilities include those who are "mentally retarded, hard of hearing, deaf, speech or language impaired, persons with visual impairments, seriously emotionally disturbed, orthopedically impaired, other health impaired, or children with specific learning disabilities who by reason thereof require special education and related services." Federal regulations include two additional categories of disability: deaf-blind and multiple disabilities. An individualized educational program (IEP) must be developed for each eligible child. Federal legislation and regulation include requirements for IEP development and review, as well as the composition of the interdisciplinary committee charged with IEP preparation. The IEP must include a statement of the child's current educational performance; annual goals and short-term instructional objectives; a description of the services to be provided and the extent to which the child will be able to participate in regular educational programs; the projected initiation date and the anticipated duration of services; and the methods to be used in determining the accomplishment of the educational objectives. States are required to provide a free appropriate public education (FAPE) to eligible children in accordance with each child's IEP, provide "full educational opportunity," and to use the "least restrictive environment" in providing these opportunities. Federal regulations clarify that children with disabilities must be allowed to participate in and to benefit from all programs and services, including non-academic and extra-curricular activities, that are available to children without disabilities [34 CFR 300.304-307]. The IEP also must specify what related services, if any, are required to help the child benefit from special education. Although federal regulations provide a list of services that may be covered as related services. Related services are an essential part of a children's appropriate education. As stated in IDEA, these include, but are not limited to the following: transportation, speech pathology, occupational therapy, audiology, psychological services, physical therapy, early identification and assessment of disabilities, medical services for diagnostic and evaluation purposes, school health services, social work services, parent counseling and training, counseling services. [34 CFR 300.13]. B. Financing Assistive Technology On August 15, 1990, the federal Office of Special Education Programs (OSEP) of the U.S. Department of Education, issued a policy letter which clarifies that assistive technology must be considered in the process of developing a child's IEP. The letter noted that "if the participants on the IEP team determine that a child with handicaps requires assistive technology in order to receive [a] FAPE, and designate such assistive technology as either special education or a related service, the child's IEP must include a specific statement of such services, including the nature and amount of such services." Further, OSEP clarified that the Part B provisions for education in the least restrictive environment are linked to the use of assistive technology as "a form of supplementary aid or service utilized to facilitate a child's education in a regular educational environment." The policy statement was contained in a letter from Judy Schrag, Director of the Office of Special Education Programs, to Susan Goodman (August 10, 1990). A full copy of the letter may be found in Appendix C. Access to assistive technology under Part B was significantly reinforced by new language in IDEA (1990) to define assistive technology devices and services and include references to them throughout the legislation. Assistive technology device is defined as any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. Assistive technology services is defined as any services that directly assists an individual with a disability in the selection, acquisition or use of an assistive technology services. Such term includes: (a) the evaluation of needs...including a functional evaluation ... in the individual's customary environment; (b) purchasing, leasing or otherwise providing for the acquisition of assistive technology devices ... ; (c) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices; (d) coordinating with other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; (e) training or technical assistance for an individual with disabilities, or, where, appropriate, [his/her] family ... ; (f) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other(s) who provide services to, employ, or are otherwise. substantially involve in the major life functions of individuals with disabilities. [(20 USC Sections 1401 (a) (25); and (a) (26)]. C. State Flexibility Participation in Part B is at state option, however, all states participate. IDEA does not state precisely what educational program must be provided to eligible children. IDEA lists only general goals as to its expectations (i.e., FAPE and "least restrictive environment") and defines in statute and regulations terms that are key to the provision of special education and related services, including assistive technology. States vary widely in their special education funding levels; there is no federal match requirement. There is also considerable state flexibility in the organization of special education services, for example, the use of intermediate school districts. States also have the option of extending the entitlement beyond age 21. D. Current Policy Issues A 1989 federal court decision reaffirmed a basic principle of entitlement for children with severe disabilities, overturning a previous ruling that a local school district could exclude a child on the basis that he or she was "too severely handicapped to benefit from education." The U.S. First District Circuit Court of Appeals in the "Timmy W" case ruled as follows: "The language of the Act makes it clear that a 'zero reject' policy is at the core of [P.L. 94-142] and that no child ... is to ever again be subjected to the deplorable state of affairs which existed at the time of the Act's passage, in which millions of handicapped children received inadequate education or none at all." [875 F.2nd, 954, 1st Circuit, 1989] This ruling may positively affect access to special education for many children with severe disabilities who may require assistive technology. Individual planning requirements in the 1990 IDEA amendments for the transition from school to employment and other adult activities may enhance access to assistive technology financing for high school age students. Provisions were added to require inclusion of a statement of needed transition services within the IEP beginning at age 16 and as early as age 14 when appropriate to the individual student. The federal Office of Special Education Programs (OSEP) is beginning funding of new discretionary grants focused on assistive technology, and has funded five year extensions of grants for two technology centers. OSEP also encourages coordination between state special education programs and assistive technology grantees of the National Institute on Disability and Rehabilitation Research (NIDRR), some of which are state education agencies or have special components on assistive technology in education. Recent changes in legislation governing the Medicaid program also affect access to the funding of special education related services, including assistive technology. The Medicare Catastrophic Coverage Act of 1988 (P.L. 100-360) expressly made Medicaid responsible for financing all related services stated on a Medicaid eligible child's IEP which also are covered services under the state's Medicaid Plan. Although Congress later repealed most of the Medicare provisions of this law, the Medicaid provision remained unchanged. The Omnibus Budget Reconciliation Act (OBRA) of 1989 (P.L. 101-239) amended the terms of the mandatory Medicaid Early Periodic Screening, Diagnosis and Treatment (EPSDT) services, to entitle children under age 21 to Medicaid reimbursement for any needed services eligible for Medicaid coverage under federal regulation, regardless of inclusion in the state Medicaid plan. Such services are, however, subject to state definitions of medically necessary. Finally, it should be noted that despite increased authorization levels in the 1990 amendments to IDEA, the federal contribution toward special education consistently has been significantly less than the 40 percent level envisioned in P.L. 94-142. In FY 1991 the federal share for special education programs was approximately 7.5 percent of the excess cost of educating students with disabilities. It is possible that this may rise to eight percent in FY 1992. E. Facilitators IDEA has clear policy to support the financing of assistive technology, including (1) the definitions of assistive technology devices and services included in the legislation, and (2) the OSEP policy letter clarifying access to assistive technology as special education, related service, or supplementary aids and services for children in regular classrooms, and (3) proposed regulations to implement IDEA. IDEA provides an entitlement to a free appropriate public education for children with disabilities, and therefore for assistive technology necessary for a student with a disability to benefit from education. Families may not be required to share in the cost of this technology or to use their private insurance for assistive technology that is included on the child's IEP. There are clearly defined rights of appeal regarding eligibility and IEP decisions, including inclusion of assistive technology services and/or devices as part of a student's IEP. Finally, the law requires each States to have a comprehensive system of personnel development. These requirements have the potential to include standards regarding expertise in assistive technology. Some potential help in access to financing and related knowledge dissemination may come from the federally funded Parent Training Centers in each state, authorized under Part G of IDEA, and the six regional resource centers that provide technical assistance to State Education Agencies in their implementation of the requirements of Part B of IDEA. F. Barriers Numerous barriers have been identified to the financing of assistive technology through the Individuals With Disabilities Act. These include (1) lack of knowledge, (2) eligibility, (3) federal funding and (4) lack of implementation of federal requirements. Despite the requirements for personnel development, lack of knowledge of assistive technology among special and regular education professionals (including those providing related services) is reported as a barrier. Many parents also lack information in this area, and are therefore less able to participate knowledgeably in IEP discussions regarding their child's need for assistive technology. Some children with disabilities may not be eligible for Part B services because eligibility is limited to the diagnostic categories listed in the legislation and accompanying regulations. In addition, despite the Timmy W. (875 F.2nd, 954, 1st Circuit, 1989) ruling, local school districts may still question the ability to "benefit" from education for some children with particularly severe or challenging disabilities. Children with disabilities in segregated settings can be helped by assistive technology to participate in integrated educational settings. Historical patterns of special and segregated placement make it more difficult to consider how access to technology would facilitate movement of a child to a less restrictive setting. The chronic federal underfunding of special education also serves as a barrier. Assistive technology is widely perceived by the education system as expensive. Resource concerns may also be a factor in the reluctance of school district's reluctance to purchase customized technology that will not be usable by other students. In some districts the policy that technology must remain on school property may also result from resource concerns. All too often IEP decisions about inclusion of assistive technology devices and services are made based upon available resources rather than individual needs. A lack of knowledge about assistive technology by parents and children with disabilities diminishes their ability to challenge these decisions. A further barrier is the problem of implementation of federal assistive technology policy throughout the state and local educational systems. Federal enforcement and monitoring of policy implementation by State Education Agencies is insufficient. Although there is a federal requirement that each state is intended to receive a comprehensive review every three years, there is currently a federal monitoring visit only every five to seven years. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Increase knowledge of assistive technology throughout the education system, through training, technical assistance, and encouragement to states to provide training/technical assistance to local education agencies (LEA); . Focus personnel development priorities on assistive technology for regular and special educators and related services personnel; . Strengthen federal monitoring to include an emphasis on assistive technology inclusion in the Individualized Education Plan (IEP) and state agency leadership on assistive technology personnel development, adhering to the minimum every three year schedule, and on-site monitoring at the LEA level; . Expand/improve inter-agency collaboration at the federal level, including possible pooling of resources with the Maternal and Child Health Division (U.S. Public Health Service) and the Administration on Developmental Disabilities (Administration on Children and Families) to finance research and technical assistance activities. . Expand data collection requirements at state and local level. LEGISLATIVE . Increase federal funding to meet the statutory promise of 40 percent of excess cost of educating children with disabilities. STATE LEVEL: . Provide training/technical assistance on assistive technology; . Require knowledge/competency in assistive technology in personnel standards; . Promote coordination/knowledge dissemination with NIDRR grantees and other assistive technology resources; . Monitor access to assistive technology at the LEA/intermediate school district level. 2. PART H: STATE GRANTS FOR INFANTS AND TODDLERS [USC Sections 1471-1485] A. Background In 1986, Congress amended the law to add Part H, the Handicapped Infants and Toddlers Program (P.L. 99-457). The program provides financial assistance to states "(1) to develop and implement a statewide, comprehensive coordinated, multidisciplinary, interagency program of early intervention services to infants and toddlers with disabilities and their families, (2) to facilitate the coordination of payment for early intervention services from Federal, State, Local, and private sources (including public and private insurance coverage), and (3) to enhance its capacity to provide quality early intervention services and expand and improve existing early intervention services being provided to infants and toddlers with disabilities, and their families" (P.L. 99-457). Infants and toddlers with disabilities are defined to include individuals from birth through age two who need early intervention services because they are experiencing delays in one or more specific developmental areas (e.g., physical development) or have a diagnosed condition which has a high probability of resulting in developmental delay. P.L. 99-457 established a five year grant program to fund state early intervention systems planning and development. As originally conceived, states would have their systems in place by the time of their acceptance of fifth year (FY 1991) funding; acceptance of the year five grant triggers entitlement to early intervention services for eligible children. Amendments that add up to two one-year waivers for states having difficulty meeting the Part H requirements were included in P.L. 102-52 (June 1991), the one year extension of the Rehabilitation Act. The waiver was coupled with a differential funding provision that will provide additional funds for implementation to states that are "on schedule." Total federal funding authorized in FY 1991 is $189 million; individual state grants are expected to range from $31,010 to $10,061,348, with an average state grant of $1,395,088. An estimated 250,000 infants and toddlers with disabilities are projected to receive early intervention services in some way associated with Part H, however, the primary focus of federal funding is to help states in systems development and coordination, rather than to help finance the services themselves. Part H funds can only be used as a last resort. The legislation includes a definition of early intervention services that must be part of participating states' early intervention systems. P.L. 102-119 added assistive technology services and devices to this list of required early intervention services. Each eligible child is to receive services that are provided in conformity with an individualized family services plan (IFSP). Each state must have an Interagency Coordinating Council to advise the designated lead agency; applications for federal funds must be made available for public comment prior to submission. B. Financing Assistive Technology P.L. 99-457 lists the services that are likely to comprise a state's early intervention system. Many of these are assistive technology funding resources. (1) Case Management Services: Case management services means assistance and services provided by a case manager to a child eligible under this part and the child's family. (2) Nursing Services: Nursing services includes -- (i) The assessment of health status for the purpose of providing nursing care, including the identification of patterns of human response to actual or potential health problems; (ii) Provision of nursing care to prevent health problems, restore or improve functioning, and promote optimal health and development; and (iii) Administration of medications, treatment, and regimens prescribed by a licensed physician. (3) Nutritional Services includes -- (i) conducting individual assessments, (ii) developing and monitoring appropriate plans to address the nutritional needs of children eligible; (iii) making referrals to appropriate community resources to carry out nutritional goals. (4) Occupational Therapy: The Part H regulations for occupational therapy expressly state that assistive technology is included within its scope. The regulations define this services as follows: (S)ervices to address the functional needs of a child related to the performance of self help skills, adaptive behavior and play, and sensory, motor and postoral development. These services are designed to improve the child's functional ability to perform tasks in home, school, and community settings, and include: (i) identification, assessment and intervention; (ii) adaptation of the environment, and selection, design and fabrication of assistive and orthotic devices to facilitation development and promote the acquisition of functional skills; and (iii) prevention or minimization of the impact of initial or future impairment, delay in development, or loss of functional ability. (5) Physical Therapy: The Part H regulations define physical therapy to include: (i) screening of infants and toddlers to identify movement dysfunction; (ii) obtaining, interpreting, and integrating information appropriate to program planning, to prevent or alleviate movement dysfunction and related functional problems, and (iii) providing services to prevent or alleviate movement dysfunction and related functional problems. [34 CFR Section 303.12(d)(9)]. (6) Special Instruction: The Part H regulations define special instructions as (i) the design of learning environments and activities that promote the child's acquisition of skills in a variety of developmental areas, including cognitive processes and social interaction; (ii) curriculum planning, including the planned interaction of personnel, materials, and time and space, that lead to achieving the outcomes in the child's IFSP; (iii) providing families with the information, skills, and support related to enhancing the skill development of the child, and (iv) working with the child to enhance the child's development. [34 CFR Section 303.12(d)(12)]. (7) Speech Pathology and Audiology: The Part H regulations define audiology and include a reference to assistive technology: ... (iii) referral for medical and other services necessary for the habilitation or rehabilitation of children with auditory impairment; (iv) provision of auditory training, aural rehabilitation, speech reading and listening device orientation and training, and other services; (v) provision of services for prevention of hearing loss; (vi) determination of the child's need for individual amplification, including selecting, fitting, and dispensing appropriate listening and vibrotectile devices, and evaluating the effectiveness of those devices. (8) Speech-language pathology: Speech pathology is defined by Part H regulations to include: (i) identification of children with communicative or oral pharyngeal disorders and delays in development of communication skills, including the diagnosis and appraisal of specific disorders and delays in those skills; (ii) referral for medical or other professional services necessary for the habilitation or rehabilitation of children with communicative or oral pharyngeal disorders, and delays in development of communication skills, including the diagnosis and appraisal of specific disorders and delays in those skills; (iii) provision of services for the habilitation, rehabilitation, or prevention of communicative or oral pharyngeal disorders and delays in development of communication skills. [34 CFR Section 303.12(d)(1)]. C. Current Policy Issues On October 7th, President George Bush signed the reauthorization legislation for Part H of the Individuals with Disabilities Education Act, the program for Infants and Toddlers with Disabilities and their Families, originally enacted in 1986 as P.L. 99-457. These amendments now become P.L. 102-119, the Individuals with Disabilities Education Amendments of 1991. P.L. 102-119 makes no changes to the eligible population, remaining quiet in the Part H program on the issue of infants and toddlers who are "at-risk". Additional amendments are included to streamline the transition process between the Part H program and the preschool program, and to ensure inclusion of infants and toddlers with disabilities in natural environments. Of great interest to families of children with cerebral palsy and other severe and multiple disabilities is report language elaborating on the inclusion of assistive technology services and devices as a specifically authorized early intervention service. This report language states: "The Committee recognizes the critical importance of assistive technology in liberating many infants and toddlers with disabilities and their families from barriers encountered in all aspects of daily living, and in significantly enhancing learning and development. The Committee has been made aware of many instances in which the provision of assistive technology has dramatically altered prospects for a child's future -- where access to technology has resulted in labels being dropped, in the provision of opportunities in integrated environments, in increased confidence and ability of the child, and in changed perceptions of the child by the family and others. ... The Committee has added assistive technology services and devices to the definition of early intervention services under Section 672(2) in order to clarify that these important supports are included as part of early intervention services for those infants and toddlers and their families who can benefit, and thus ensure their provision when appropriate." Although the final legislation is quiet on the issue of sliding fee scales, report language urges states to "undertake an in-depth analysis, including studying the experiences of other states, before adopting policies regarding sliding fees." The final legislation also requires a study of the funding formula to determine policy implications of various potential changes. D. State Flexibility The legislation established strict timelines over the five years for states to develop and implement comprehensive coordinated interagency programs statewide. The essential state flexibility is in the option of participation in the Part H program. At the present time all states continue to participate. States have the option of covering children "at risk of developmental delay;" if covered, these children are also entitled to the full array of early intervention services. However, at this time, only a few states have chosen this option. There is no federal definition of "developmental delay" and "at risk;" states are required to develop their own definitions and eligibility criteria. Similarly, states have flexibility in the designation of the lead early intervention agency and their coordination mechanisms. The tremendous variety in state early intervention systems is mirrored in the great variety in Part H implementation, including the services being made available to children and their families. States also have the option to charge fees on a sliding scale for most early intervention services, however, very few states have done so to date. E. Facilitators The primary facilitators in Part H are coordination and case management. Part H is premised on the assumption that there are some services currently in existence to aid infants, toddlers and their families. Part H assumes that the greatest need is the coordination of all the existing programs that provide services to infants and toddlers with disabilities and their families, and to fill the gaps with new, Part H funds. Congress intended that the state early intervention system would be comprised of a interlocked network of Federal, state, local and private service providers. Formal interagency agreements would create the network. Case management is an integral part within the early intervention services system. The case manager has much potential to aid children and families in the design of a comprehensive and effective program of services including the provision of assistive technology and related services. Also important to financing is the provision is the provision of Special Instruction in Part H. Special Instruction can offer the same assistive technology opportunities as special education in the IDEA program for children age 3-21. Computers and other learning aids are appropriate means of providing instruction to children with disabilities, and both the hardware and programs can be provided as part of the child's special education. Part H regulations defines special instruction as (i) the design of learning environments and activities that promote the child's acquisition of skills in a variety of developmental areas, including cognitive processes and social interaction; (ii) curriculum planning, including the planned interaction of personnel, materials, and time and space, that lead to achieving the outcomes in the child's (IFSP); (iii) providing families with the information, skills, and support related to enhancing the skill development of the child, and (iv) working with the child to enhance the child's development. [34 CFR Section 303.12(d)(12)]. Finally, Part H requires the states to undertake a comprehensive system of staff development with the purpose of ensuring that infants and toddlers with disabilities, and their families, have access to skilled personnel who can provide the necessary early intervention services. The Part H regulations permit states to incorporate staff development procedures used in other IDEA programs, or to devise a separate program for early intervention. Pre-service and in-service training on assistive technology can be an important staff development effort. F. Barriers The primary barrier is lack of resources for services. Although some early intervention resources are available from other sources, there are many gaps in most state systems that are well beyond Part H funding levels. There is concern that the current entitlement for year five states may be to a waiting list rather than to assistive technology and other needed services. Lack of knowledge of assistive technology, in particular its significance for children in the 0 - 2 age range, has been widely reported to be a barrier. Cumbersome application and reimbursement systems have also been noted in some states. Part H funds are available only to supplement existing resources, not supplant them. In addition, Part H mandates that in relation to the funds available from every other program, its funds are to be used only as a last resort. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Promote knowledge development/dissemination on assistive technology; . Support implementation and oversight in Medicaid legislation to clarify and ensure that Medicaid is responsible for appropriate Individualized Family Support Plan (IFSP) services. . Expand data collection requirements at state and local level. LEGISLATIVE . Increase federal funding levels; . Change the funding formula to one based on numbers served. STATE LEVEL: . Emphasize focus on assistive technology in IFSP development; . Provide training/technical assistance on assistive technology, including information/training to parents; . Include access to assistive technology as priority in coordination initiatives. V. RELATED PROGRAMS 1. EDUCATION OF HANDICAPPED CHILDREN IN STATE OPERATED OR SUPPORTED SCHOOLS [20 USC Section 2791] A. Background In 1965 P.L. 89-313 established a program to help states finance the education of children with disabilities in state operated programs, primarily residential schools for children with specific disabilities (e.g., schools for the deaf). Provisions in the Hawkins-Stafford Elementary and Secondary School Improvements Amendments of 1988 (P.L. 100-297) added "training in the use and provision of assistive devices and other specialized equipment" to the list of authorized services. Commonly referred to as 89-313 funds, these federal state operated programs were appropriated $148.8 million in FY 1991. States receive varying amounts of 89-313 funding based on their enrollment of children with disabilities (including infants and toddlers) in programs or schools operated or supported by a state agency which is directly responsible for the education or early intervention of such children. In FY 1991 89-313 grants ranged from $22,967 to $24,727,529. The total number of 89-313 children in FY 1991 is estimated to be 268,000. The definition of eligible children under P.L. 89-313 is the same as that for IDEA Parts B and H in relation to their disability. In addition, 89-313 children must be those for whom the state is directly responsible for providing special education or early intervention services and either participating in state-operated or state-supported schools or programs for children with disabilities, or have previously participated in such a program and are now receiving special education or early intervention services from local education agencies. B. Financing Assistive Technology 89-313 can be used to finance assistive technology for children with disabilities, including infants, toddlers and pre-schoolers, who meet the 89- 313 criteria. Programs and projects may include, but are not limited -- 1) services provided in early intervention, preschool, elementary, secondary, and transition programs; 2) acquisition of equipment and instructional materials; 3) employment of special personal; 4) training and employment of education aids; 5) training in the use and provision of assistive devices and other specialized equipment; 6) training of teachers and other personnel; 7) training for parents of children with disabilities; 8) training of nondisabled children to facilitate participation with children with disabilities in joint activities; 9) training of employers and independent living persons involved in the transition of children with disabilities from school to the world of work and independent living; 10) outreach activities to identify and involve children with disabilities and their families more fully in a wide range of educational and recreational activities in their communities; and 11) planning for, evaluation of, and dissemination information regarding such programs and projects funded. C. State Flexibility States have great flexibility in their use of program funds. In particular, they have latitude in their definition of what constitutes a state operated program. Some states identify proportionately large numbers of 89-313 students; four states receive nearly half of all federal 89-313 funds. D. Current Policy Issues Congress has raised several questions regarding the continuing viability of the 89-313 program in light of the implementation of IDEA Parts B and H. The conference report on the FY 1991 appropriations legislation included a statement in support of the future transfer of 89-313 to IDEA. One issue related to this debate is the incentive states have had to classify children as 89-313 rather than IDEA, due to the higher federal funding per child. Although the gap between 89-313 and IDEA funding was narrowed by the IDEA amendments of 1990, some effects of the incentive remain. The question of merging or transferring 89-313 to IDEA also was raised by the General Accounting Office (GAO) in a report requested by the Congress as part of P.L. 100-297. The GAO reported that although the program was generally considered to be targeted to children with more severe disabilities, some states were using the program for children with milder disabilities - presumably in order to collect the higher federal rate. The Department of Education is generally supportive of such a merger, providing that it is phased in and that states are "held harmless" in the amount of funding received. There is considerable variation among states regarding the use of 89-313 grants to finance assistive technology. A recent questionnaire found that 17 percent of the states responding indicated that they never use 89-313 funding for assistive devices and equipment. Advocates for integrated early intervention and education have not been successful in efforts to require states to use a designated portion of their 89-313 funds for students transferring to local schools, and there is continuing support among other advocates for 89-313 funding of the traditional state schools. E. Facilitators 89-313 funds can be used for assistive technology, which is specifically included in the list of services that can be provided. In addition to providing more federal funding per pupil than IDEA, 89-313 funding is considered to be more flexible. For example, assistive technology equipment purchased with 89-313 funds can be used to benefit other children in the same school or classroom. Advocates for integrated education also applaud the transfer provision, which can improve access to assistive technology for students moving from a state operated to local school or early intervention program. 89-313 funds for training and personnel are important to the promotion and access to appropriate assistive technology and related services. F. Barriers There is a lack of knowledge of assistive technology among 89-313 program personnel paralleling the lack of knowledge throughout the education system. Resources are generally seen as inadequate, despite the fact that federal funding rates have been higher than those for special education students. Advocates for the use of 89-313 to finance assistive technology and other supports to students transferring to their local education/early intervention programs have been frustrated by the reluctance of state 89-313 administrators in several states to use the transfer provision. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Promote assistive technology knowledge development/dissemination in coordination with IDEA; . Do more to encourage use of the transfer provision, with enhanced use of assistive technology as a component. LEGISLATIVE . If folded into IDEA, ensure that current 89-313 funding levels per student are maintained. STATE LEVEL: . Emphasize use of assistive technology; include in standards for 89-313 programs; . Explore ways assistive technology can expand use of the transfer provision. 2. VOCATIONAL EDUCATION (CARL D. PERKINS VOCATIONAL AND APPLIED TECHNOLOGY EDUCATION ACT) [20 USC 2331-2342] A. Background The Vocational Education Act of 1963 (P.L. 88-210) as amended by the Carl D. Perkins Vocational and Applied Technology Act of 1990 (P.L. 101-392), authorizes a program of federal grants to the states to assist them in developing vocational education programs through the public school system. The purpose of the Act is to make the U.S. more competitive in the world economy by developing more fully the academic and occupational skills of all segments of the population, principally through concentrating resources on improving educational programs leading to academic and occupational skill competencies needed to work in a technologically advanced society (the Carl D. Perkins Vocational and Applied Technology Act Amendments of 1990 - P.L. 101-392). State boards of vocational education receive federal grants according to a formula that is based on state population in various age groups and per capita income. The formula is weighted to state populations of youth age 15 - 19 and to states with lower per capita incomes. The range of state grants in FY 1991 was from $190,000 to $76,918,280, with an average of $14,794,000; total federal appropriations for FY 1991 were $957.9 million, including $849,4 mullion for the state grants, an additional funds for technology p[reparation, state councils, and other purposes. The amendments of 1968 (P.L. 90-576) added a requirement that 10 percent of the state vocational education grant be set aside for vocational education of students with disabilities. This provision was deleted in the amendments of 1990. Instead, students with disabilities are one of several categories of "special populations." The amendments stipulate that individuals who are members of special populations must be provided with equal access to recruitment, enrollment, and placement activities, as well as equal access to the full range of vocational education programs available to individuals who are not members of special populations. In addition to the general assurances for special populations, the law requires that individuals with disabilities be served in conformity with IDEA and Section 504 of the Rehabilitation Act and in the least restrictive environment. If the student has an IEP, service must be provided in accordance with it. If the student does not have an IEP, services must be provided under Section 504 guarantees. Such rights and protections are to include making vocational education programs readily accessible to eligible individuals with disabilities through the timely provision of information and coordination. P.L. 101-392 also added requirements for public participation in the state vocational education planning process, including representatives of people with disabilities and other special populations. States also must conduct assessments of their current vocational education systems, and use 75 percent of the grant for program improvement/grants to LEAs, with funding priority to sites or programs that serve the highest concentrations of special populations. Allocations to LEAs are restricted to those receiving Chapter I Education funds; eligible LEAs also must receive vocational education funding in proportion to their percentage of students with IEPs under IDEA. The law further requires that local applications contain a report on the number of special population individuals being served, an assessment of the needs of special populations, and the planned use of funds to meet those needs. This application must also show that parents and special population students have been involved in developing programs and that there has been coordination with community-based organizations. B. Financing Assistive Technology Each state must provide assurances that it will: (1) assist students who are members of special populations to enter vocational education programs and, with respect to students with disabilities, assist in fulfilling the transitional service requirements of Section 626 of IDEA; (2) assess the special needs of students participating in programs receiving assistance with respect to their successful completion of the vocational education program in the most integrated setting possible; and (3) provide supplementary services to students who are members of special populations. The state must also assure modifications of curriculum, equipment, and classrooms, supportive personnel, and instructional aids and devices. Counseling and career guidance is required also for people with disabilities. In addition, students with disabilities are covered by IDEA and Section 504 requirements regarding education and related services, access to services, and rights of appeal. C. State Flexibility There is considerable state flexibility in the design of vocational education programs, priorities based on identified needs, supplementary state funding levels, and oversight of implementation at the local level. States have limited flexibility in the allocation of funds to LEAs, and must follow funding allocation formulas specified in the legislation. There is more flexibility at the local level, including decisions at individual schools regarding which programs to fund. D. Current Policy Issues Proposed regulations to implement the new provisions of P.L. 101-392 were published on October 11, 1991. Concerns have been raised by several advocates for students with disabilities and other special populations on the initial implementation of P.L. 101-392, including weaknesses in the new public hearing process and reports in some states that the dropping of the 10 percent requirement for students with disabilities is being interpreted as no longer having to provide vocational education to these students. Questions also have been raised about the quality of needs assessments being conducted. Discretionary funding for research and technical assistance also is authorized under the Act, including $5 million per year to the National Center for Research on Vocational Education, currently at the University of California at Berkeley. These activities can include assistive technology, although a focus on assistive technology is not mandated. E. Facilitators Assistive technology is specifically identified as a supplementary service to be provided to students with disabilities. The link to IDEA and Section 504 provides additional policy in support of access. The inclusion of students with disabilities as one of the special populations further supports full access to vocational education programs. Participation and, potentially, increased access to assistive technology, can be enhanced through knowledgeable public participation in the development and review of state vocational education plans. F. Barriers The primary barrier being reported at this time is on the implementation of the new provisions of P.L. 101-392, in particular the misunderstanding in several states that elimination of the set-aside for students with disabilities relieves them from responsibility for services to this population. However, implementation is still just getting started. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Clarify and enforce full access to federally funded vocational education programs for students with disabilities; . Clarify that a full range of assistive technology can be provided through the vocational education program, based on the definitions found in IDEA and the Technology-Related Assistance Act; . Develop/disseminate policy clarifying that assistive technology is to be considered in the vocational education process, similar to that previously issued by the Office of Special Education Programs; . Promote assistive technology knowledge development/dissemination; . Reinforce/monitor full access, public participation, and effective needs assessment, including assistive technology. VI. THE REHABILITATION ACT OF 1973, AS AMENDED ÀÀ Title I, Basic State Grants ÀÀ Title VI-C, Supported Employment ÀÀ Title VII, Independent Living [29 USC 720 et seq.] Background As described in the 1986 amendments to the Rehabilitation Act (P.L. 99-506), the purpose of this Act is "to develop and implement through research, training, services, and the guarantee of equal opportunity, comprehensive and coordinated programs of vocational rehabilitation and independent living, for individuals with handicaps in order to maximize their employability, independence, and integration into the workplace and the community." [P.L. 99-506] Individuals with handicaps are defined in law and regulation as "any individual who (i) has a physical or mental disability which for such individual constitutes or results in a substantial handicap to employment and (ii) can reasonably be expected to benefit in terms of employability from vocational rehabilitation services." [34 CFR Section 361.1] Three titles are significant in terms of their impact on financing of assistive technology. These include Title I (the Basic State Grant Program), Title VI-C (State Supported Employment Services Program), and Title VII (Independent Living Services). Prior to 1986, there was little statutory emphasis in these Titles on assistive technology. However, the 1986 amendments placed a new emphasis on access to assistive technology and by adding requirements for an assessment of the need for rehabilitation engineering (i.e., assistive technology) for people applying for federally funded rehabilitation services, by exempting rehabilitation engineering from the requirement for consideration of similar benefits (see below). The amendments also required states to indicate in their state vocational rehabilitation plan how rehabilitation engineering will be provided to assist an increasing number of individuals with disabilities. The law defines rehabilitation engineering as follows: The systematic application of technologies, engineering methodologies, or scientific principles to meet the needs of and address the barriers confronted by individuals with handicaps in areas which include education, rehabilitation, employment, transportation, independent living, and recreation. (P.L. 99-506) The requirement to provide assistive technology was reinforced by a policy directive issued by the Commissioner of the federal Rehabilitation Services Administration to state vocational rehabilitation agencies on November 16, 1990. The directive noted that "It is the policy of the Rehabilitation Services Administration (RSA) to promote, encourage and support the application of rehabilitation engineering technology in the provision of services to people with disabilities ... ." A copy of this directive is included in Appendix C. The amendments on rehabilitation engineering primarily affect the Title I Basic State Grant program; however, these provisions also can influence activities provided under other sections of the Act. 1. Title I: Basic State Grants A. Background Title I of the Rehabilitation Act authorizes formula grants to designated state vocational rehabilitation agencies; the estimated total federal funding in FY 1991 is $1,593,287,000. Federal funds are distributed to the states based on population weighted by per capita income. States are required to match their federal funds they receive; the 1986 amendments raised the requirement for state matching funds one percent per year beginning in FY 1988, from 20 percent to 25 percent by FY 1993. A total of 216,109 persons received services from state vocational rehabilitation agencies in FY 1990, which represents two percent less than the number of individuals served in FY 1989 (220,408). The purpose of the VR Basic State Grant program is "to assist states to meet the current and future needs of handicapped individuals so they may prepare for and engage in gainful employment to the extent of their capabilities" (P.L. 93- 112). The scope of authorized activities include assessment, counseling, training, and rehabilitation engineering/assistive technology. States have wide latitude and significant discretion in providing a wide array of additional services. As noted above, state vocational rehabilitation agencies are required to assess each applicant's need for rehabilitation engineering. The 1973 amendments to the Rehabilitation Act (P.L. 93-112) required that priority for service be given to individuals with severe handicaps. The law and regulation define such individuals as a person: "(i) who has a severe physical or mental disability which seriously limits one or more functional capacities (such as mobility, communication, self-care, self direction, interpersonal skills, work tolerance, or work skills) in terms of employability; (ii) whose vocational rehabilitation can be expected to require multiple vocational rehabilitation services over an extended period of time; (iii) whose has one or more physical or mental disabilities resulting from amputation, arthritis, autism, blindness, burn injury, cancer, cerebral palsy, cystic fibrosis, deafness, head injury, heart disease, hemiplegia, hemophilia, respiratory or pulmonary dysfunction, mental retardation, ental illness, multiple sclerosis, muscular dystrophy, musculoskeletal disorders, neurological disorders (including stroke and epilepsy), paraplegia, quadriplegia and other spinal cord conditions, sickle cell anemia, specific learning disability, end-state renal disease, or another disability or combination of disabilities determined on the basis of an evaluation of rehabilitation potential or cause comparable substantial functional limitation." [34 CFR Section 361.1] State eligibility for the Title I Basic State Grant requires submission of a comprehensive rehabilitation services plan every three years. The plan must include a description of and justification of the state's order of selection, the policies and procedures to be employed if vocational rehabilitation services must be rationed because of insufficient funds. As noted above, states also must include information on how they plan to increase the number of individuals with disabilities who will be assisted by rehabilitation engineering. Other key state plan requirements include an assurance that each person will receive rehabilitation services consistent with an individualized written rehabilitation plan (IWRP), a description of methods to be used in expanding services to individuals with the most severe disabilities, and assurances that the state has an acceptable plan for providing supported employment services through Title VI- C of the Act (see below). Individual eligibility for vocational rehabilitation (VR) services funded through Title I is determined by state VR agencies within federal guidelines. Eligible individuals are those with a physical and/or mental disability which "constitutes or results in a substantial disability to employment" and for whom vocational rehabilitation service may "reasonably be expected to be beneficial in terms of employability" (34 CFR 361.1). As previously described, priority for services must first be given to individuals with severe handicaps. The eligibility determination process must include consideration of the person's need for assistive technology (i.e., rehabilitation engineering.) An extended evaluation (up to 18 months) may be used to determine rehabilitation potential. Individuals not accepted as Title I VR services clients may appeal their rejection through the VR Client Assistance Program. In addition, the regulations state that before a person can be declared ineligible for Title I VR services, there must be clear evidence that the person is ineligible for services (34 CFR 361.35). Although there is no federal requirement to limit access based on financial need, the Act permits states to impose such criteria if they are in writing, included in the state plan, and specify which services will be exempt from financial need consideration. No financial needs tests are permitted, however, for the evaluation of rehabilitation potential, counseling or placement services; for all other VR services the state VR agency may examine whether the person has the resources to pay for some or all of the cost of the services being covered. B. Financing Assistive Technology The Individualized Written Rehabilitation Program (IWRP) is the basic document outlining the vocational objectives toward which the individuals will work. The IWRP must list all services to be provided under the plan, and specify the expected date when each service will commence. If rehabilitation engineering services are to be provided, they too must be stated on the IWRP. Rehabilitation engineering services provides opportunity for assistive technology devices to be provided to persons with disabilities through the Title I VR program. The key is to tie the rehabilitation engineering services to the person's vocational objective, i.e., one of the activities that comprise the definition of employability. Regulations implementing the Act define employability as a determination that "with the provision of vocational rehabilitation services, the individual is likely to enter or retain, as a primary objective ... employment". The definition provides that employment can be any of the following: full time or part time competitive work the practice of a profession self employment homemaking farm or family work sheltered employment home based employment supported employment other gainful work [34 CFR Section 361.1.] Title I VR program is considered the payer of last resort and thus requires consideration of similar benefits, i.e., whether the person is eligible for any other federal or state program that may fund some of the necessary services. The statute requires consideration of similar benefits for most VR services. Regulations specify that the following services are exempt from this requirement: (i) evaluation of rehabilitation potential; (ii) counseling and guidance; (iii)vocational training; (iv) placement; (v) rehabilitation engineering; (vi) post-employment services. [29 U.S.C Section 721(a)(8); 34 CFR Section 361.47(b)] The November 1990 RSA policy directive informs states that this does not mean that "if such services are readily available to the individual from other sources they should not be utilized by VR agencies." (see Appendix C) C. State Flexibility There are four areas of state discretion which may affect access to the financing of assistive technology: (1) flexibility in the way basic and priority (i.e., individuals with severe handicaps) eligibility is determined; (2) state definition of order of selection; (3) state options in the use of financial need determination; and (4) the amount of state funds appropriated, with some states providing considerable funds above the required state match. States also may choose not to provide the full state match, and therefore may lose a portion of their federal Title I grant amount. D. Current Policy Issues Those with severe multiple or very challenging disabilities are still denied entry into vocational rehabilitation under the assumption that the severity of their disability would prevent their ability to enter and maintain employment. Of critical importance in such denials are the concepts of feasibility for employment/ employability, which are embedded in the eligibility process for the current system. Individuals who have been determined eligible for other federal or state disability-related programs and services should be presumed eligible for rehabilitation services. Under such a system, the rehabilitation agency would be required to reach out to agencies which conduct disability-related programs, and should include education agencies. For many individuals, this process would shorten substantially the time between application and initiation of services, streamlining entry and eliminating costly and time-consuming duplicative evaluations. In addition, provisions could be added to the Rehabilitation Act, probably in a new section of Title 1, to deal specifically with transition from school to work. The provisions would build on the new transition provisions added to the Individuals With Disabilities Education Act (IDEA) last year, and are based on data showing that fewer than half of youth with disabilities find competitive, paid employment. Furthermore, the current definition of severe disability needs to be maintained and strengthened to tie it to functional limitations. The current requirement that state agencies specify an Order of Selection when they anticipate that they will be unable to serve every individual with disabilities who meets eligibility requirements is also a necessary safeguard to focus on the needs of individuals with the most severe disabilities. Last but not least, assistive technology has unlocked access to and ability to control environments for individuals with disabilities enabling improved independence and productivity in the home and workplace. Without a doubt, the explosion of technology will ultimately remove most of the biggest barriers to integrated, competitive employment for people with the most severe disabilities. The focus of rehabilitation must shift from counseling to enabling access. Assistive technology is a means to unlock ability and provide workplace skills. E. Facilitators The Title I program has several features that facilitate -- or have the potential to facilitate -- access to the financing of assistive technology. These include clear policy statements in support of access, broad eligibility, an appeals process, requirements for outreach, broad coverage of assistive technology, promotion of funding coordination, and mechanisms to enhance staff qualifications. Opinion is divided regarding the adequacy of federal Title I funding levels and the appropriateness of the level of state flexibility. The specific references to rehabilitation engineering (i.e., assistive technology) in the legislation, coupled with RSA policy statements on implementation, are considered particularly significant. As described above, these include the requirement that rehabilitation engineering be considered in the individual's initial assessment and in development of the person's IWRP and the state plan requirements that the state spell out how it will increase people's access to rehabilitation engineering and funding on a case by case basis of appropriate technology devices and services. The exemption of rehabilitation engineering from the similar benefits provision is generally seen as a facilitator, as access to financing is not delayed for long periods during back and forth negotiations with other potential payment sources. (Related therapies, however, are subject to the similar benefits requirement.) The legislation contains a state plan requirement for assurances of staff development programs. Resources to enhance personnel quality (e.g., counselors and therapists) are authorized in other parts of the Rehabilitation Act. Access to financing also is enhanced by the priority given to people with severe disabilities through a mandated Order of Selection process that goes into effect whenever the state feels it is incapable of meeting all the needs of its applicants for services. The Order of Selection is required to ensure that persons with the most severe disabilities are served first. Finally, access to financing is also facilitated by a prohibition on discrimination on the basis of age or type of disability. The expectation of outreach in the state plan requires strategies to increase the use of rehabilitation engineering and facilitates access. F. Barriers The primary barrier identified is variable and weak state implementation of the federal policies and requirements that promote access to assistive technology, in particular the rehabilitation engineering amendments of 1986. This has been recognized by RSA in its policy directives of fall 1990 and in its provision of additional resources for monitoring and technical assistance. Other barriers include concerns about the basic eligibility concepts, gaps in coverage because of limits imposed by individual states, incentives for the lowest cost assistive technology, and cumbersome funding approval procedures. Many advocates view the Title I eligibility criteria as a barrier, in particular the way concepts of feasibility for rehabilitation and employability are applied to exclude many people with severe disabilities. There is also a concern that the broadness of the Act's definition of severe handicap makes it possible for state agencies to meet their priority requirement without necessarily serving significant numbers of people with the level of functional disability defined in such legislation as the Developmental Disabilities Assistance and Bill of Rights Act. This concern is magnified when assistive technology is not adequately considered during the evaluation (individual assessment) process. Two barriers widely associated with this issue are a lack of knowledge among rehabilitation personnel and the slow pace of implementation of the 1986 amendments. Resources also may be a factor in limiting access to financing. States frequently place limits on the scope of assistive technology that can be covered or caps on the amount that can be expended. Some states also require that assistive technology be purchased through the state's procurement program, which may limit access to specially designed items as well as being a generally cumbersome process. Opinion is divided regarding the adequacy of federal Title I funding levels for purchase of assistive technology devices and services to respond to individuals needs. Although funding has not kept up with inflation, some advocates feel that the issue is more one of how funds have been used (e.g., for state program administration and eligibility determination) rather than inadequate levels. Additional barriers identified include a lack of attention by RSA to monitoring state implementation of the 1986 assistive technology amendments and no funding of national or regional technical assistance efforts to identify and replicate effective approaches to eligibility determinations utilizing rehabilitation technologies. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Enforce policies on the use of assistive technology in the assessment/evaluation process and inclusion in Individualized Written Rehabilitation Plans (IWRP); . Conduct a major training and technical assistance initiative on assistive technology service delivery, including information/technical assistance for individuals with disabilities and employers; . Continue/enhance the promotion of effective transition from school to work, including the importance of continuity in access to assistive technology. LEGISLATIVE . Redefine the goal of the statute as provision of support to all people with disabilities who want to work; . Eliminate outmoded concepts of employability and feasibility as a basis for eligibility to the program which continues to be used to discriminate against people with severe and multiple disabilities; . Change the focus/program incentives from closure to employment outcomes, i.e., jobs, and place more emphasis on the individual's preferences in employment, career goals, and supports; . Modify definition of rehabilitation engineering to assistive technology and use the same definitions as in IDEA and the Technology-Related Assistance Act; . Encourage or mandate states to require knowledge/training in assistive technology for VR counselors and IWRP reviewers; . Put more resources into training/technical assistance. STATE LEVEL: . Develop/expand assistive technology knowledge and competency among counselors and those who review evaluations and IWRPs; . Provide technical assistance as needed; . Assure that assistive technology is considered in the evaluation and IWRP process, especially for those with severe and multiple disabilities, and including those with severe disabilities other than spinal cord injury. 2. Title VI-C: Supported Employment Services For Individuals With Severe Disabilities A. Background Title VI, Part C of the Rehabilitation Act authorizes supplementary federal grants to assist states in developing collaborative programs with appropriate public agencies and private nonprofit organizations for training and traditionally time-limited post-employment services leading to supported employment for individuals with severe handicaps (P.L. 99-506). Supported employment is defined as "competitive work in integrated settings - (1) for individuals with severe handicaps for whom competitive employment has not traditionally occurred; or (2) for individuals for whom competitive employment has been interrupted or intermittent as a result of a severe disability, and who because of their handicap, need ongoing support services to perform such work" (P.L. 99-506). Regulations implementing the supported employment program define competitive work as "work that is performed on a full-time basis or on a part-time basis, averaging at least 20 hours per week for each pay period, and for which an individual is compensated in accordance with the Fair Labor Standards Act" [34 CFR 363.7]. The FY 1991 federal appropriation for the Supported Employment program was $29.15 million. Grants to states ranged from approximately $250,000 to $3,048,825, averaging a little over $500,000 per state. Unlike the Title I State Grant Program, there is no state match requirement for Title VI-C Supported Employment funds. Since this program is intended to assist people with the most severe disabilities become employed, assistive technology plays an important role in its implementation. Additional funding for supported employment services is provided in virtually all states through the Title I program. Other resources for supported employment have been available in the twenty-seven states which have received federal supported employment Systems Change grants; an additional seventeen began October 1, 1991. In total, approximately 73,000 individuals were estimated to have participated in supported employment programs during FY 1990. A little over 52,000 individuals with severe disabilities participated in supported employment during FY 1989, the last year for which this information is available. To be eligible for Title VI-C supported employment grant funds a state must submit a supplement to its basic state rehabilitation plan, showing how the state will provide services leading to supported employment for persons with severe handicaps. A key requirement is that the state indicate the resources for extended supported employment services; these must be provided by sources other than the state VR agency (i.e., other public agencies and private organizations.) B. Financing Assistive Technology Because supported employment is required to be a collaborative effort among many agencies and programs, it should be viewed as offering the most complete array of funding possibilities for assistive technology. Individuals become eligible for supported employment under Title VI-C by going through the eligibility determination and assessment process for Title I services; they are referred to supported employment based on the assessment that supported employment is their appropriate employment goal. Services to be provided are specified in their IWRP. A non-exclusive list of allowable Title VI-C services includes such items as an evaluation of rehabilitation potential which is provided supplementary to the evaluation provided under Title I. Evaluation of rehabilitation potential includes: the provision of rehabilitation engineering services to any individual with a handicap (disability) to assess and develop the individual's capacities to perform adequately in a work environment. [P.L. 99-506] Assistive technology could be considered for financing as other services needed to support employment; anything that can be funded under Title VI-C can be funded under Title I. VR funding for supported employment, however, under either Title I or Title VI-C, is limited to a maximum of 18 months duration. If assistive technology is needed beyond that period, funding has to come from other (non- VR) sources. C. State Flexibility This is a formula grant program available to all states meeting application requirements. While all states participate, variation in priority/target populations may occur from state to state. D. Current Policy Issues RSA hopes to increase participation in supported employment by people with severe disabilities over the next few years through a discretionary grant program. One aspect would be to promote the use of assistive technology for this population. E. Facilitators As described above in relation to Title I, the Basic State Grant program, generally apply to the Title VI-C program. Thus, while there is no clear policy statement in Title VI-C regarding access to assistive technology (rehabilitation engineering), the requirement that assistive technology be addressed in the IWRP if found appropriate would extend to the supported employment program. In addition, the Title VI-C program defines people with severe disabilities (handicaps) as the target population, although this is still evolving in its implementation. Before individuals are rejected for Title I services, they are to be assessed for supported employment as well. Agencies to be involved in both short term and long term (extended services, i.e., beyond the eighteen months of VR support) are required to be identified in the supported employment IWRP, and state plans are to indicate the non-VR resources to be used. Indirectly, the requirements that long term funding sources be identified for extended services can promote coordination among funding sources; as described below, however, these requirements also act as a major barrier. F. Barriers The ban on VR funding of supported employment beyond 18 months and the requirement that funding for supported employment after the 18 months be identified as a condition of eligibility acts as a major barrier to the financing of assistive technology through this program. Those particularly affected are individuals for whom there is no designated state agency of responsibility, e.g., people with physical disabilities who do not come under the responsibility of their respective state mental retardation/developmental disability or mental health agency. The second major barrier is the overall slow pace of change in serving those with the more severe disabilities, and the outdated concepts in the system regarding feasibility and employability, affecting many who could benefit from access to assistive technology. In addition the requirement that people must average 20 hours per week per pay period also functions as a barrier for some individuals. Lack of knowledge of assistive technology among supported employment professionals contributes to these barriers. Individuals may find dollar caps on the assistive technology that can be financed through the program in some states. Another barrier is the requirement for multiple evaluations (i.e., for Title I eligibility, for the initial IWRP, and for supported employment), which can be a cumbersome process for the individual. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE & LEGISLATIVE . Consider elimination of the 20 hour per week requirement; . Eliminate the requirement for identification of the long-term funding before providing services; . Eliminate the requirement for mandatory job skills training twice a week on-site; use only as appropriate on an individual basis. STATE LEVEL: . Eliminate redundant assessments by including identification for assistive technology and other supports in the initial evaluation/IWRP; . Promote the use of assistive technology as needed on an individual basis; . Integrate Title I/Title VI-C and other supported employment program procedures; . Provide training/technical assistance on assistive technology in coordination with the Title I program. . Examine options in long-term funding in collaboration with other federal agencies, state officials (both disability services and vocational rehabilitation agencies), consumers and advocates. 3. Title VII: Comprehensive Services For Independent Living A. Background The 1978 amendments to the Rehabilitation Act (P.L. 95-602) added Title VII, including Part A, authorizing formula grants to the states for comprehensive services; Part B for discretionary federal grants to support centers for independent living. Part C is to assist states in providing services to older individuals with blindness. The target population of these programs is people for whom other VR services have not been considered appropriate because of the severity of their disabilities. The FY 1991 appropriations for these programs are -- Part A: $13,619,000 Part B: $27,579,000 Part C: $5,900,000. Grants to states range from $16,173 to $948,651 in Part A, $175,000 to $225,000 in Part B, and $193,000 to $250,000 in Part C. The state match requirement is 10 percent. The estimated number served in FY 1991 was 18,500 in Part A, 76,500 in Part B, and 8,000 in Part C. Services funded under Title VII must be designed "to meet the current and future needs of individuals whose disabilities are so severe that they do not presently have the potential for employment but may benefit from vocational rehabilitation services which will enable them to live and function independently" (P.L. 95- 602). Priority is to be given to people with disabilities who are not already served by other programs under the Rehabilitation Act. All states with federally approved independent living state plans are eligible to receive Part A grants, and all states participate. Grants are made to state VR agencies, with a minimum of 20 percent required to be passed through to non-state providers of independent living services unless waived by the RSA commissioner. In order to be eligible to participate in programs under Title VII, states must submit a three year state plan based on a needs assessment conducted by the state that identifies the types of services that are needed as part of the independent living program. The state plan must demonstrate that the state has studied and considered methods for providing services that will to the maximum extent feasible provide meaningful alternatives to institutionalization. [29 USC 796d(a)(3)(A)]. In addition the state plan must describe its inter-agency coordination of independent living services, its order of selection in prioritizing services when funds are not sufficient, the ways in which it assures that independent living services will be provided to those with the most severe disabilities, and ways it is providing technical assistance to poverty areas. States also must have an Independent Living Council which is responsible for development of the five year state plan. Grants under Part B are awarded on a competitive basis to establish and operate centers for independent living. Each center must have a governing board comprised of a majority of individuals with disabilities who are substantially involved in the policy development and management of the centers. Grants under Part C also are awarded on a competitive basis, to provide independent living services for people over age 55 whose visual impairment is severe enough to make gainful employment very difficult (older blind individuals). Persons eligible for services under Title VII are defined as "any individual whose ability to engage in or continue in employment, or whose ability to function independently in the family or community, is so limited by the severity of the disability that vocational or comprehensive rehabilitation services are appreciably more costly and are of appreciably greater duration than those vocational and comprehensive rehabilitation services for the rehabilitation of an individual with handicaps are required to improve significantly either the ability to engage in employment or the ability to function independently in the family or community" (P.L. 95-602). Federal regulations further specify that there must be "a reasonable expectation that [independent living] services will significantly assist the individual to improve his ability to function independently in a family or a community or to engage in or continue in employment," and that such improved ability should be measurable in areas such as self care, communication, driving, and activities of daily living." [34 CFR 365.31]. B. Financing Assistive Technology All three components of the Independent Living program may be used to finance assistive technology. Under Part A, services are to be provided to eligible persons based on an individual plan for independent living, including assistive technology, which is referenced in examples of an allowable service (e.g., needed prostheses and other appliances and devices). Federal regulations also added telecommunications, sensory and other technological aids and devices to the list. Unlike Titles I and VI-C, Title VII also can include assistive technology and related services to young children. Provisions in Part A specifically note that funds can be used to provide services to children of pre-school age, including physical therapy, development of language and communication skills, and child development services. Part B applications must provide assurances that the independent living center will offer individuals with disabilities an array of services as appropriate, including evaluation of client needs, advocacy, information and referral, and skills training. There are no references to assistive technology in the descriptions of these services other than "independent living skills, counseling, and training, including such programs as training in the maintenance of necessary equipment" (P.L. 95-602). Part C services also can include assistive technology for older individuals with severe visual impairment. C. State Flexibility The Rehabilitation Act and regulations for the Part A program do not set forth a list of services that are mandatory components of the independent living program, and therefore states have wide discretion in the services that are funded. Each state is to have conducted its own independent living needs assessment as the basis for the design of its independent living program. Regulations do require, however, that the state plan assure that no group of individuals is excluded from services solely on the basis of the type of disability or on the basis of age [34 CFR 365.31]. D. Current Policy Issues Each round of competition for Part B grants to centers for independent living can include specific federal priorities in its requirements. No new competition for Part B grants was held during FY1991, and it now appears likely that there will be no competition for new Part B grants in FY 1992; all existing centers, however, are to receive continuation funding. Had a new competition been scheduled, RSA might have included provisions to address access to assistive technology (e.g., priority for inclusion of a staff person with expertise in this area). RSA also hopes to encourage promotion of assistive technology in the Part A program. Amendments to Title VII in 1992 may include further references to assistive technology in the independent living assessment process and in resources for staff training. E. Facilitators The various components of the Title VII program potentially improve access to assistive technology through their focus on individuals with very severe disabilities and their broad purpose - i.e., services are not tied to a short term goal of employability. Although references to assistive technology are limited, there are no prohibitions against financing, and technology is specifically referenced as an allowable service in Parts A and C. Specific service coverage, however, is decided by the individual states, and there are no mandatory services. Individual choice is especially supported through Parts B and C, which emphasize individual empowerment and maximum independence; centers for independent living financed through Part B are required to have majority consumer involvement in their administration. Although limited data are available, it is likely that most independent living centers help people access assistive technology through their information, referral, coordination, and advocacy services. RSA hopes to encourage more emphasis on assistive technology through program policy guidance. F. Barriers The primary barrier to financing in the Title VII programs is the limited funding, especially for state-of-the-art technology. For example, the FY 1991 Part B federal funding of $27 million is spread across 144 grantees and 202 centers for independent living, providing an average of only around $200,000 per center. There is also a lack of emphasis on assistive technology despite expressions of interest at many individual centers. Some observers also feel that the eligibility concept for Title VII programs (i.e., that it is only for people who are not eligible for other VR programs) is outmoded. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Promote knowledge/technical assistance on assistive technology as part of independent living center services with targeted special project and demonstration grants; LEGISLATIVE . Expand funding and availability of Independent Living Centers; . Include policy language on assistive technology in the legislation, including the definition of assistive technology in IDEA and the Technology-Related Assistance Act, and clarification of promoting access to assistive technology as one of the goals of Title VII independent living programs. . Require as a mandated service in Parts A, B and C the provision of technology-related assistance including awareness and education, training in the use of devices, financing and advocacy. . Require under Part B that each center employ an individual with appropriate competencies to direct their mandated assistive technology service and advocacy program. Suggestions For All Rehabilitation Act Programs . Collect/analyze data on the use of assistive technology in promoting employment, independence and productivity; . Expand training and technical assistance on assistive technology assessment, service delivery options and financing alternatives to states, centers on independent living and nonprofit providers. VII. DISABILITY PROGRAMS OF THE SOCIAL SECURITY ACT ÀÀ Title II: Social Security Disability Insurance (SSDI) ÀÀ Title XVI: Supplemental Security Income (SSI) ÀÀ Impairment Related Work Expenses (IRWE) 1. TITLE II: THE SOCIAL SECURITY DISABILITY INSURANCE PROGRAM (SSDI) [42 USC 420-425] A. Background Title II of the Social Security Act of 1935 (P.L. 84-880, as amended) authorizes a program of federal disability insurance benefits for workers who have contributed to the Social Security Trust Funds and become disabled or blind before retirement age. Spouses and dependent children of fully insured workers, including adult children with disabilities whose disability began prior to age 22, also are eligible for benefits upon the retirement, disability or death of a primary beneficiary. The purpose of the SSDI program is to replace part of the earnings lost when a physical or mental disability is severe enough to prevent a person from working. SSDI is financed primarily by a portion of the Federal Insurance Contribution Act (FICA) payroll tax on wages which is allocated to the Disability Insurance (DI) Trust Fund; the DI Trust Fund is the source of payment for monthly DI benefits and for administrative expenses. Total outlays from the DI trust fund are projected to increase at an annual compounded rate of 6.6 percent between 1988 and 1994, rising to $32.8 billion. FY 1991 expenditures are projected to be $26.7 billion. Cash benefits for a worker disabled in 1991 range up to a maximum of $1,218 per month, based on the level of the worker's prior earnings and the age at which the worker became disabled. The corresponding maximum for each worker with a family is $1,828.30. As of December 31, 1990, the average monthly benefit paid to a disabled worker alone was $571 and the average amount payable to a disabled worker with dependents was $1,026. An average of 4,166,000 workers with disabilities and their dependents received monthly cash benefits during FY 1990. Disability benefits are provided to a person who is unable to engage in any substantial gainful activity (or SGA, which is defined as earnings of $500 or more per month from employment) by reason of medically determinable physical or mental impairment that has lasted or is expected to last at least 12 months, or to result in death. Applicants must furnish medical and other evidence as specified by the Social Security Administration (SSA) to prove the existence of a disability. A worker also must have achieved insured status through work in employment covered under Social Security. There is a five month waiting period between the time the claimant is determined entitled to SSDI benefits and the time in which the payments begin. People with disabilities on the basis of visual impairment or blindness are eligible for SSDI under less stringent criteria, including higher levels of SGA ($810 in 1991, compared to $500 for people with other disabilities). Workers with disabilities receiving SSDI benefits are eligible for coverage under the Hospital Insurance (HI) component of Medicare, also referred to as Medicare Part A. However, there is a 24-month waiting period between the month in which the worker becomes entitled to SSDI benefits and the month in which the worker becomes eligible for Medicare. Since there is a 5-month waiting period for SSDI benefits, an individual may have to wait 29 months from the determination of disability until Medicare coverage begins. Once disabled beneficiaries become eligible for Medicare Part A, they are also eligible for the Supplementary Medical Insurance (SMI) program (Medicare Part B), which covers physician and ancillary services. As for other Medicare beneficiaries, participation in Part B is voluntary, and requires the payment of a Part B premium. If a worker with disabilities loses entitlement to SSDI benefits because his or her impairment ceases, Medicare eligibility is generally terminated at the end of the month following the month in which SSDI benefits are terminated. Work Incentives: One work incentive provision for SSDI recipients is the trial work period. Under a provision enacted in December 1987, a 45-month period of extended eligibility for Social Security benefits is provided to beneficiaries with disabilities who attempt to work. This period includes a nine month trial work period during which benefits are not suspended because of work and a 36-month extended period of eligibility, during the last 33 months of which SSDI benefits are suspended for any month in which the individual is engaged in SGA. However, during the extended period of eligibility, entitlement to benefits is not terminated. If an individual medically recovers to the extent that s/he no longer meets the definition of disability, benefits are terminated regardless of the trial work provision. Only one trial work period is permitted in any five year period. A trial work month is defined as any month in which earnings exceed $200. Provisions in the law extend Medicare benefits to workers with disabilities who attempt to return to work under a trial work program or whose SSDI benefits cease due to earnings which exceed the SGA level. For these beneficiaries, Medicare coverage is extended for not less than 39 months after the end of the trial work period, and possibly longer. Additional Medicare retention privileges were included in OBRA 1989 (P.L. 101-239), allowing SSDI recipients with disabilities who return to work to purchase Medicare insurance coverage after they have exhausted their trial work period and extended regular Medicare coverage. The law also requires the states to pay all or part of the premium for Medicaid for SSDI recipients earning less than 200 percent of the federal poverty level. For beneficiaries who have completed the two-year waiting period and who come back onto the SSDI rolls after a period of work, there is no additional two- year waiting period for Medicare coverage. Another work incentive provision is the waiving of the five month waiting period for former SSDI beneficiaries who become re-entitled within five years of a prior period of disability. Deductions for impairment related work expenses (IRWE), applying to both the SSDI and SSI programs, are discussed below. Another trust fund program reimburses states for vocational rehabilitation (VR) services to SSDI beneficiaries if the rehabilitation services result in federal savings and are successful, defined by law as the completion of a continuous 9-month period of employment at the SGA level. State disability determination staff refer persons awarded disability benefits to state vocational rehabilitation agencies. Under federal guidelines, only those beneficiaries who are considered good candidates for rehabilitation and could potentially benefit from state VR services are referred. If referred, a DI beneficiary may lose his or her benefits for refusing rehabilitation services without good cause. OBRA 1990 (P.L. 101-508) extended the same benefit continuation rights as those for individuals who medically recover while participating in a state VR program (Section 301) to SSDI and SSI beneficiaries who medically recover while participating in an approved non-state VR program. B. Financing Assistive Technology Some assistive technology is financed through the IRWE program, as discussed below. Indirectly, the SSDI program's link to Medicare eligibility can be a source of financing. C. State Flexibility There is no state flexibility per se. Disability determination units operated by the states are governed by federal laws, regulations and procedures. States do vary significantly in the use of referrals to the state vocational rehabilitation program. D. Current Policy Issues The Social Security Administration is conducting an initiative to expand the use of work incentives for both SSDI and SSI recipients. Called Project NetWork, the initiative centers on the use of case managers who are well versed in all relevant work incentives, including the financing of assistive technology. Four case management models will be tested, including two using SSA employees, one with case management provided by state VR agency staff, and one using private sector case managers. The first model, using specially trained SSA personnel as case managers, is being implemented in selected locations during the fall of 1991. The training includes some information on the financing of assistive technology. E. Facilitators The primary feature that facilitates access is the link to Medicare eligibility and the related work incentive provisions that protect access to the Medicare program. Some features of the IRWE program also are relevant, as discussed below. SSDI monthly benefit amounts are greater than those in the SSI program or an average of $571 vs. $260 for an individual with disabilities as of December 31, 1990. SSDI is also a family benefit, i.e., payment amounts increase if there are dependents. SSA is optimistic that the new case management initiative will increase the use of work incentives, including access to assistive technology, among SSDI beneficiaries. F. Barriers There are no inherent barriers to the financing of assistive technology in the SSDI program, other than the 24 month waiting period for Medicare coverage following the five month initial waiting period. Provisions under COBRA (the Consolidated Omnibus Budget and Reconciliation Act of 1985 - P.L. 99-272, as amended) offer access to continued employment-based health insurance coverage for the 29 months, but only at the expense of the individual. However, the Medicare program contains many barriers to the financing of assistive technology (see Part II of this Section IV on Page XX). Fear of loss of Medicare coverage has been associated with some individuals' reluctance to use SSDI work incentives. It is not clear to what extent the provisions of OBRA 1989 on retention of Medicare eligibility help people who fear loss of coverage of assistive technology and other medical care financed through the Medicare program; these provisions went into effect in April 1990. It should be noted, however, that the cost to individuals for the Medicare buy-in is $203 per month during 1991, and will increase in 1992; buy-in costs for those who are below 200 percent of the federal poverty level, however, will be made by state Medicaid programs. Many advocates for people with disabilities have indicated that the lack of SSDI work incentive provisions similar to the 1619 program that protects Medicaid eligibility for SSI recipients (see below) can be a barrier to employment. In addition, there is no gradual phase-out of benefits similar to the 1619 program's gradually declining SSI payment amounts. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Establish the SGA level for all persons with disabilities and blindness at $810 per month with annual Cost of Living Adjustments. LEGISLATIVE . Establish a work incentive program more like the 1619 program that is available to SSI recipients; . Explore the impact of the Medicare two year waiting period on those unable to take advantage of COBRA continuation of private insurance coverage, including access to needed assistive technology; . Examine the affordability of new Medicare buy-in provisions for people returning to work, including access to assistive technology; . Allow an SSDI recipient to borrow from the Trust Fund to purchase needed assistive technology. 2. TITLE XVI SUPPLEMENTAL SECURITY INCOME (SSI) [42 USC 1382] A. Background Title XVI of the Social Security Act was added in the Social Security Amendments of 1972 (P.L. 92-603). The purpose of the Supplemental Security Income (SSI) program is to assure a minimum level of income to persons who have attained age 65 or are blind or disabled whose income and resources are below certain levels. To qualify for SSI payments, persons must satisfy both the program criteria for age, blindness or disability and income and resources limitations. The aged are people who are age 65 years or older. Individuals who are blind are individuals with 20/200 vision or less with the use of a correcting lens in the person's better eye, or those who have tunnel vision of 20 degrees or less. Individuals with disabilities are those who are unable to engage in any substantial gainful activity by reason of a medically determined physical or mental impairment expected to result in death or that has lasted or can be expected to last, for a continuous period of at least 12 months. The criteria and determination process for individuals with disabilities or with blindness/visual impairment are the same in the SSI and SSDI programs. In addition, SSI eligibility is based on a review of income and resources (e.g., a bank account or life insurance policy). Although some income and resources are not fully counted in determining eligibility, the basic limit is less than $386 per month in income and $2,000 in assets for an individual and $579 and $3,000, respectively, for a couple. Within federal limits and guidelines, values of household goods, personal effects, an automobile, and property needed for self support are excluded in determining the value of resources; the cost of disability related expenses needed for work also can be deducted in meeting income criteria (see below). Children's eligibility for SSI is defined as disability of the basis of any medically determinable physical or mental impairment of comparable severity to that which would define disability in an adult. As defined in SSA's interim final regulations, in response to the Zebley v. Sullivan Supreme Court decision, comparable severity is linked to limitations in the child's ability to function independently, appropriately, and effectively in an age-appropriate manner. The income of the parents of an eligible child under the age of 18 is considered in determining the eligibility and payment for the child. In determining the amount of the income of the ineligible parent to be deemed to the SSI applicant or recipient, the needs of the parent and other children in the household are taken into account. Similar provisions apply to ineligible spouses in the same household. As of March 1991 a total of 3,385,307 individuals with disabilities were participating in the SSI program, including 220,302 (6.5 percent) who were working. The estimated average federal payment during FY 1991 is $260 per month, ranging from $1 to $407 for individuals without an eligible spouse. Total federal SSI payment costs, including administration, are estimated at $16.881 billion in FY 1991. B. Financing Assistive Technology The primary access to the financing of assistive technology is through the SSI program's link to the Medicaid program. States have three options as to how they treat SSI recipients in relation to Medicaid eligibility: (1) they can enter into an agreement with SSA to automatically cover all SSI recipients with Medicaid eligibility, eliminating separate applications for Medicaid (31 states and the District of Columbia); (2) states provide Medicaid eligibility for all SSI recipients only if the recipient completes a separate application with the state Medicaid agency (six states); and (3) the so-called 209(b) option, under which states may impose Medicaid criteria which are more restrictive than SSI criteria (either on disability or income and resources), so long as the criteria chosen were part of the state's approved state Medicaid plan in January 1972 (thirteen states). Work Incentives: The major work incentive program for SSI recipients with disabilities is the 1619 program, initiated as a pilot program in the Social Security Amendments of 1980 (P.L. 96- 265) and made permanent by the Employment Opportunities for Disabled Americans Act of 1986 (P.L. 99-643). Section 1619(a) of the Social Security Act provides for continuation of cash benefits for those SSI recipients who are receiving benefits on the basis of disability even if they are working at the SGA level and as long as there is not a medical improvement. The amount of their cash benefits is gradually reduced as their earnings increase until their countable earnings reach the SSI benefit standard or breakeven point. After an individual is no longer eligible for Section 1619(a) benefits due to excess earning, s/he may qualify for Section 1619(b) retention of Medicaid coverage. This special eligibility status applies as long as the individual: (1) continues to have a disabling impairment; (2) except for earnings, continues to meet all the other requirements for SSI eligibility; (3) would be seriously inhibited in continuing to work by the termination of eligibility for Medicaid services; and (4) has earnings that are not sufficient to provide a reasonable equivalent of the Medicaid benefits that would have been available if s/he did not have those earnings. Individuals with disabilities in the 1619 program have the ongoing protection of being able to reinstate their eligibility to cash assistance benefits under regular SSI or 1619 (a), or Medicaid only eligibility under 1619(b) if their work attempt fails or their physical or mental disability makes their ability to work erratic. However, if the individual recovers medically, a new application and new disability determination is required. As of March 1991, there were 13,330 participants nationwide in the 1619(a) program, and 22,221 in the 1619(b) program. This reflected a decrease of 4.7 and 5.5 percent respectively from December 1990 due to the rise in the SGA level to $500, which gave some people renewed eligibility for the regular SSI program. The average monthly earnings of 1619(a) recipients is $711, however, over half of the participants earn less than $200 per month. Another work incentive is the Plan for Achieving Self-Support (PASS) program, added in the Social Security amendments of P.L. 92-603. This program permits individuals to set aside income from sources other than SSI (e.g., SSDI benefits or earnings from employment) and resources (e.g., a bank account) to purchase assistive technology and other items that are needed to pursue their vocational goals. Income/resources set aside in a PASS are not counted in determining SSI eligibility or in calculating the amount of the SSI benefit. A PASS is flexible in what it can finance, so long as it approved by the SSA under minimal federal guidelines (e.g., that it relate to vocational goals that are obtainable). The first PASS is written for an 18 month period; extensions are available up to a maximum of 48 months. The PASS program is available to people who are already receiving SSI and to people whose income and resources are too high to qualify for SSI without taking the PASS into account. In addition to helping finance assistive technology directly, the PASS program also supports access to financing through increased SSI payments for those who are already receiving benefits, and through both payments and access to Medicaid for those who would otherwise not be eligible for SSI. As of March 1991, approximately 2,500 individuals were participating in the PASS program. A third work incentive that can be used in financing assistive technology is the Property Essential to Self Support (PESS) program, which permits individuals to exclude the value of property used in a trade or business or for work as an employee, such as specially adapted tools or equipment, in the determination of SSI benefits. Eligibility is available to both current and potential SSI beneficiaries, as with the PASS program. For SSI recipients on the basis of blindness, the Blind Work Expenses program permits deduction of all work expenses from earned income in determining SSI eligibility and payment amounts. Although the program helps finance assistive technology and other expenses related to a visual disability, it is not limited to work expenses that are related; for example, it can be used to cover income tax payments. In contrast, the Impairment Related Work Expenses (IRWE) program, a work incentive available to both SSDI and SSI recipients (see below), can be used only for work expenses that are directly related to the person's disability. Approximately 4,000 individuals were participating as of March 1991. C. State Flexibility States may elect to supplement the basic federal SSI payment. Approximately 42 percent of the SSI recipients receive a State Supplementary Payment (SSP); SSP amounts range from $2 to $366 a month for individuals. Although nearly all states provide SSP, they have considerable flexibility in the SSP amount and the eligibility criteria. States also have flexibility in the way they link SSI and Medicaid eligibility, as described above. Approximately 75 percent of SSI recipients are in states that have chosen the automatic eligibility option; 22 percent are in 209(b) states; and the rest are in the six states that require separate Medicaid applications. Under the 1619 program, each state determines a threshold level which is the point at which it is assumed that individuals have sufficient income to be responsible for the purchase of their own health insurance rather than continue on Medicaid. States also vary in their support to promotion of the 1619 program, and participation rates vary considerably among the states. D. Current Policy Issues The criteria and procedures for determining SSI eligibility for children with disabilities have recently been changed, following litigation that challenged SSA's use of eligibility determination methods that were not comparable to those used with adults (Sullivan v. Zebley, U.S. No. 88-1377). As part of the Court Order implementing the Zebley decision, SSA is undertaking a major public information and outreach initiative to contact the approximately 425,000 children whose SSI eligibility was either denied or terminated from January 1, 1980 and February 11, 1991. Public comments on new childhood disability standards are under review currently by SSA. In a separate action, SSA has revised standards for determining mental disability in children under age 18. Going forward, the full implementation of the Zebley decision is expected to increase the number of SSI children with disabilities significantly, and consequently will increase the number of children eligible for Medicaid on the basis of their SSI status. SSA has undertaken the Supplemental Security Income Modernization Project, beginning with an examination of SSI program effectiveness in meeting the needs of the target population, including people with disabilities. Recommendations will be made to the Commissioner of SSA in January 1992, in such areas as benefit amounts, income and resource limits, definition of SGA, appeals procedures, work incentives, and linkage between the SSI and Medicaid programs. E. Facilitators The primary feature is the link to the Medicaid program, including the work incentive provisions of the 1619(b) program which allow individuals to retain their Medicaid eligibility. F. Barriers There are no inherent barriers in the SSI program with the possible exception of the 209(b) provisions allowing some states to restrict access to the Medicaid program for some SSI recipients. G. Suggestions for Reform FEDERAL LEVEL: LEGISLATIVE . Raise the Substantial Gainful Activity (SGA) limits further and provide for automatic annual changes in relation to the cost of living index; . Raise monthly payment levels at least to federal poverty levels; . Clarify that assistive technology is an appropriate use of funds in the PASS and PESS programs, using the definitions found in the Technology-Related Assistance Act. EXECUTIVE . Phase out eligibility and payment differences between people with blindness and those with other disabilities; . Continue/expand the 1619 program; . Conduct an evaluation of the implementation of the Zebley decision and the new criteria for children's mental disabilities. 3. IMPAIRMENT RELATED WORK EXPENSES (IRWE) A. Background The IRWE program applies to both SSDI and SSI recipients. It was authorized in the Social Security Act amendments of 1980 (P.L. 96-265), which also authorized the 1619 work incentive program. With IRWE, costs of allowable disability related items and services can be deducted from earnings and income from other sources, even if these items and services are also needed for non-work activities, so long as the cost is borne by the individual with the disability. IRWE deductions can be used to reduce the amount of earnings from employment used to calculate substantial gainful activity (SGA) in determining SSI and SSDI eligibility (currently $500 per month for people with disabilities other than blindness) and in determining the amount of an SSI beneficiary's monthly payment. IRWE is available for individuals who are self-employed as well as those who are employed by others. Unlike the PASS program, there is no time limit to IRWE deductions and they can be used for ongoing expenses. B. Financing Assistive Technology IRWE expenses are approved at the SSA field office level, based on such criteria as the necessity of the item or service to job performance, the need in relation to the person's disability, and the reasonableness of the expense. Many examples of assistive technology that would be considered for IRWE deductions are included in materials published by SSA on work incentives, such as vehicle modifications, wheelchairs, prosthetics, adaptive equipment used in the workplace, and communications systems used in employment. C. State Flexibility State flexibility is not relevant to the IRWE program. D. Current Policy Issues Work incentives are believed to be helpful in increasing the proportion of individuals working. For example, the percentage of working SSI eligible recipients has increased from 3.4 percent in December 1976 to 6.5 percent from June 1990 through the present. SSA has been trying to promote increased use of IRWE and other work incentives by designating a work incentive specialist at each SSA field office. In addition, SSA hopes to increase the use of work incentives through the Project NetWork case management initiative described above. It should be noted that the percentage of SSI program participants who are working varies greatly among the states, ranging from 2.3 to 20.3 percent. Another work incentive that applies to both SSI and SSDI beneficiaries is the Section 301 program, which protects access to work incentives for people who are found to be medically improved (i.e., no longer disabled) and are participating in a vocational rehabilitation program. E. Facilitators Although assistive technology is not mentioned in the legislation, it is clearly covered under guidance and public information published by SSA. IRWE deductions can cover a broad range of assistive technology, so long as it is work related; items can be included even if they are used to some extent for non-work activities, if the primary purpose is for employment. IRWE is relatively easy to apply for and to use, and can be used indefinitely while people are employed and eligible for either SSI or SSDI. F. Barriers The only significant barrier is that only half of the amount expended under IRWE is actually available as a deduction of earnings, because of the way deductions and SGA, income, and payment amounts are calculated. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Continue Project NetWork and other work incentive initiatives; . Clarify that assistive technology is a significant part of all work incentives, including use of the same definition as found in the Technology-Related Assistance Act; . Ensure that assistive technology is included in the training of work incentive specialists in each district and of the case managers in Project NetWork; . Expand training of Social Security Administration workers on all work incentive programs and expand outreach to people with disabilities and local service providers; . Conduct research on alternative decisionmaking models that minimize time delays and which responds to consumer needs to access appropriate technology solutions; . Conduct research on the significance of assistive technology in obtaining and maintaining employment for SSI and SSDI beneficiaries. VIII VETERANS' BENEFIT PROGRAMS ÀÀ Prosthetics and Sensory Aids [38 USC 1162, 1701, 1710, 1717, 1719, 1723-1724, 3104, 8123] ÀÀ Related Programs . Automobiles And Adaptive Equipment For Certain Disabled Veterans And Members Of The Armed Forces [38 USC 3901-3903] . Specially Adapted Housing [38 USC 2101-2106] . Compensation [38 USC 1101 et seq.] . Veterans' Outpatient Care [38 USC 1712] . Vocational Rehabilitation [38 USC 1524, 3102] A. Background Federal legislation authorizes a wide range of benefits to veterans of the U.S. armed services, including disability compensation, life insurance, education, vocational training for veterans with disabilities, and medical care, including assistive technology. Some benefits are available to dependents and survivors. These programs are authorized as a form of additional compensation to individuals who served their country, especially those who did so during periods of armed conflict. Several programs are targeted to those with disabilities. Regional offices of the Department of Veterans Affairs (VA) administer most benefits other than medical care. Medical care is generally administered through the network of VA medical centers and includes inpatient and outpatient health care, prosthetics appliances/adaptive devices, nursing home services, domiciliary care, adult day health care, home care, hospice services, respite, mental health and substance abuse treatment, and special programs for veterans who are homeless. Eligibility for most VA benefits is based on an "other than dishonorable" discharge from active military status following minimum periods of service as specified by law. Eligibility requirements vary for individual benefits; programs directed to veterans with disabilities frequently refer to a service connected disability or condition as an eligibility criterion. A service connected disability is one caused by an incident or illness that occurred while the veteran was a member of the armed services and not necessarily as a result of combat activity, e.g., a spinal cord injury from an automobile accident that occurs while an individual is home on leave is considered a service-connected disability. In FY 1990 the VA handled 1,388,217 benefit cases. Medical care was provided to 1,653,798 veterans during FY 1990, at a cost of $12.7 billion. There are several avenues of access for the funding of assistive technology for veterans with disabilities. The most significant is the Prosthetic and Sensory Aids program but five other related programs are also limited sources of assistive technology and devices for veterans with disabilities. These programs are summarized below. PROSTHETICS AND SENSORY AIDS: This program provides prostheses and related appliances, equipment and services to veterans with disabilities through purchase and/or fabrication, so that they may live and work as productive citizens. Veterans may be provided prosthetic appliances necessary for treatment of any condition when receiving hospital, domiciliary, or nursing home care in a facility under the direct jurisdiction of VA. Veterans who meet the basic requirements for outpatient medical treatment may be provided needed prosthetic services if the appliance is required for a service-connected disability or adjunct condition; for a disability for which a veteran was discharged or released from active service; for a veteran participating in a VA rehabilitation program; as part of outpatient care to complete treatment of a disability for which hospital, nursing home, or domiciliary care was provided; for any medical condition for a veteran with a service-connected disability rated at 50 percent or more; for a veteran receiving increased pension or allowance based on needing aid and attendance or being permanently housebound; or specific conditions of service (e.g., having been a prisoner of war). Veterans whose disability is not service-connected may be eligible for services in some cases, e.g., to prevent or reduce the need for hospitalization. During FY 1990, the Prosthetic Appliances program provided approximately 1,300,000 prosthetic items/services to nearly one million veterans. These included prostheses, sensory aids, medical equipment, medical supplies, therapeutic devices and repair services. Expenditures were $111 million for devices and repairs ($152 million if surgical implants are included), expected to rise to $121 million in FY 1991. The range for individual devices is approximately $10 to $25,000, with an average expenditure of $68.00. RELATED PROGRAMS: Automobiles And Adaptive Equipment For Certain Disabled Veterans And Members Of The Armed Forces: This program provides financial assistance to active duty service persons and veterans with disabilities, based on their level of disability, toward the purchase price of an automobile or similar vehicle (e.g., a van) and an additional amount for adaptive equipment considered necessary to insure that eligible persons will be able to operate or make use of the vehicle. Another component pays for adaptive equipment, including its repair, replacement, or re-installation required because of disability for the safe operation of a vehicle purchased with VA assistance or for a previously or subsequently acquired vehicle. Eligibility for the adaptive equipment only program requires a less severe level of disability. Estimated federal funding in FY 1991 is $18.8 million, including purchase of 830 vehicles. There is no statutory maximum for adaptive equipment; the maximum for a vehicle is $5,500. Assistance toward purchase of a vehicle is a one-time payment only. Adaptive equipment is provided for no more than two conveyances during any four-year period unless one of those two vehicles becomes unavailable to the veteran. Specially Adapted Housing: This program assists veterans with severe disabilities (based on definitions of specific types of disabilities) to acquire suitable housing that is equipped with special fixtures and facilities necessitated by the disability. VA may approve a grant of not more than 50 percent of the cost of building, buying or remodeling adapted homes or paying indebtedness on those homes already acquired, up to a maximum of $38,000. Grants also may be approved for the actual cost, up to a maximum of $6,500, for adaptations to a veteran's residence determined to be reasonably necessary. Alternatively, the grant may be used to assist eligible veterans in acquiring a residence which has already been adapted with special features. Eligible veterans must be entitled to compensation for permanent and total service-connected disability. Eligibility for the larger grant amount is based on greater severity of the disability, such as "the loss or loss of use of both lower extremities, such as to preclude locomotion without the aid of braces, crutches, canes, or a wheelchair." The estimated federal cost of veterans' Specially Adapted Housing is $14.4 million, for a total of 422 grants in FY 1991. Compensation: The compensation program pays monetary benefits to veterans with disabilities from injury or disease incurred or aggravated during active military service in the line of duty and which is not a secondary effect of willful misconduct or substance abuse. The amount of the monthly payment increases by the percentage level of disability. The current range is from $80 for a service-connected disability at 10 percent to $1,620 for 100 percent disability. The entitlement for a few severe disabilities at special benefit rates, can be up to $4,628 per month. Veterans whose service-connected disabilities are rated at 30 percent or more are entitled to additional allowances for dependents, ranging from $28 to $563 per month, depending on the number of dependents and the degree of disability of the veteran; spouses of these veterans are entitled to receive a special allowance for a spouse who is in need of the aid and attendance of another person. Federal expenditures for the veterans' disability compensation program are projected at $11.5 million in FY 1991, representing payments to 2,493 veterans and their dependents. Veterans' Outpatient Care: The outpatient care program provides medical and dental services to eligible veterans on an outpatient basis, including medical examinations and related services such as drugs and medicines, rehabilitation, consultation, professional counseling, training, and mental health services in conjunction with treatment of physical and mental disabilities. As part of outpatient medical treatment, some veterans may be eligible for home health services necessary or appropriate for the effective and economical treatment of their disabilities, including home improvements and structural alterations that are determined necessary to assure the continuation of treatment or to provide access to the home or to essential lavatory and sanitary facilities, within certain cost limitations. In general, the VA must furnish outpatient care without limitation for service-connected disabilities, with eligibility criteria partly tied to the level of the disability (e.g., 50 percent vs. 30-40 percent service-connected disability). The VA also must provide outpatient care for veterans in VA-approved vocational rehabilitation programs and may be furnished on an optional basis to other veterans, including some who may be required to make copayments of $26 per visit. Federal funding in FY 1991 is estimated at $3.2 billion. Costs in FY 1990 were approximately $2.9 billion, covering nearly 23.4 million outpatient visits. Vocational Rehabilitation: The VA vocational rehabilitation programs provides services and assistance necessary to promote maximum independence in daily living and employability, to the maximum extent feasible. Eligibility is for veterans of World War II and later who have a compensable service-connected disability as well as certain hospitalized service persons pending discharge or release from service whom VA determines need vocational rehabilitation. The Veterans' Benefits Improvement Act of 1988 (P.L. 100-687) added provisions for vocational rehabilitation for service-disabled veterans receiving VA unemployment compensation and for vocational training for veterans who are awarded a VA pension February 1, 1985 - January 31 1992, for whom the achievement of a vocational goal is determined to be reasonably feasible. This rehabilitation program finances vocational training expenses, and may pay for special supportive services, including prosthetic devices, lipreading training and signing for individuals with deafness. It may pay for counseling and transportation expenses related to the veteran's disabilities. Veterans receive a monthly subsistence allowance in addition to their disability pension benefit, and are eligible for advances of up to $666 to meet unexpected financial difficulties. Total federal funding is estimated at $162.6 million in FY 1991, plus an additional $1.5 million in no-interest loans. 37,300 veterans are expected to participate. Training provided through P.L. 100-687 usually may not exceed 24 months, and may not be started after August 1, 1992. B. Financing Assistive Technology Each VA program provides different medically necessary prosthetics and other assistive devices to eligible veterans. Applicants may request services by reporting in person at any VA Medical Center as well as by correspondence, telephone, or community physician prescription. Medical necessity for assistive technology is interpreted to include technology that will help the veteran to be more independent and to meet basic needs. The Prosthetic Appliances program, for instance, covers a wide scope of technology, including training, maintenance, repair and replacement; and technology/assistive devices from hearing aids and wheelchairs to highly sophisticated augmentative communication devices. Most technology is provided without special approval processes but more expensive items are reviewed by the local VA medical center's major medical equipment committee. C. State Flexibility There is no state flexibility. However some states contribute support to local veteran outreach centers and veteran information and referral services. Local VA medical center prosthetics programs may vary in some ways, e.g., on the interpretation of federal guidelines on the reviews of some items by the major medical equipment committee. D. Current Policy Issues The VA has its own standards and specifications for wheelchairs. For other assistive technology, the VA relies on the approval process of the Food and Drug Administration (FDA). VA also has a research and development center which has been involved previously in the testing and design of some assistive devices. The center's mission and activities are currently under review. E. Facilitators As most of these programs are entitlements, access to financing of assistive technology is facilitated for eligible veterans. The technology devices and services are provided at no cost to the individual. Another significant facilitator is the VA's broad coverage of assistive technology, including use of a liberal definition of medical necessity. For example, veterans may have sports wheelchairs prescribed. The position of the Department of Veterans Affairs also is that anything on the market for civilians should be available to veterans. A new centralized financing system has improved the ability of the regional VA center prosthetic programs to respond to the need for assistive technology throughout the fiscal year; phase two will include a central computer system which is expected to improve program efficiency further. The program currently uses on-line computer communication to inform VA personnel of available technology, supplemented by in-service training programs. F. Barriers Lack of knowledge of assistive technology remains a barrier despite the efforts to improve communication and in-service training among VA personnel. Another barrier is lengthy delays on some items and services financed by the prosthetics program or related to obtaining devices, such as the typical 120 day wait for a hearing test. Some items also are still being supplied through national contracts, contributing to delays and other problems of distribution. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Continue personnel training initiatives to improve the efficiency of the system; . Collaborate with the broader assistive technology field in the review of efforts to develop national standards and to encourage the development/distribution of assistive technology needed by veterans and others with disabilities; . Extend coverage of assistive technology devices and services to children with disabilities who have a parent who is a veteran; . Promote research on assistive technology as a priority at the research and development center; . Decentralize purchasing to regional offices or medical centers where national contracts contribute to delays and distribution problems; . Initiate review of decisions by local Veterans' Administration (VA) medical centers major medical equipment review boards where purchases of more expensive assistive technology items are decided; implement changes in policy and practice to more accurately reflect the choices of veterans' with disabilities and their families; . Establish new priorities to reflect the goals of integrating veterans with disabilities more fully into the community; . Review the Food & Drug Administration approval process and make changes appropriately to reflect state-of-the-art knowledge about assistive technology and establish and implement policies that are consumer-driven; . Develop further the VA's national database on assistive technology. STATE LEVEL: . Encourage state support and interagency collaboration at VA centers at regional, state and local levels; . Disseminate information about assistive technology devices and services via the veterans' outreach centers. IX. OLDER AMERICANS ACT OF 1965, AS AMENDED [42 USC 3022-3030] A. Background The Older Americans Act of 1965 (P.L. 89-73) created a federal grant program to state agencies on aging for social service programs serving the elderly. As amended, the Act's definitions of national objectives include the best possible physical and mental health, suitable housing designed and located to meet special needs, full restorative services for those who require institutional care including a comprehensive array of community-based long term care services, and efficient community services with emphasis on maintaining a continuum of care for the vulnerable elderly. Although the Act prohibits means tests that would limit participation only to older people with low incomes, amendments have emphasized that nutrition and supportive services should be targeted to low income individuals, those whose racial or ethnic status may heighten the need for services, and those with social need for services who are not economically deprived. The primary mechanism is the Title III grants to the states, which in turn provide funding to local area agencies on aging (AAAs). Grants to state agencies on aging totaled $750 million in FY 1991, ranging from $3.7 million to $69.7 million; the grant amount is based on each state's percentage of the national population of individuals aged 60 or over. Approximately seven million older individuals received Title III supportive services in FY 1991; about 2.7 million received congregate meals and an additional 800,000 received home-delivered meals. Requirements for AAAs were added by the 1973 amendments P.L. 93-29. P.L. 92-258 in 1972 had added the national nutrition program for the elderly. Subsequent amendments consolidated social services, nutrition services, and multi-purpose senior center programs under Title III of the Older Americans Act; authorized in-home services for frail older individuals and assistance to older persons with special needs; and designated information and referral, in-home services, transportation, outreach, and legal services as priority supportive services. The Act requires that AAAs designate a community focal point for the delivery of services to promote coordination, assure that preference will be given to providing services to older persons with the greatest economic and social needs, and establish and maintain information and referral services, with special emphasis on people with severe disabilities and other special populations. State units on aging and AAAs also are required to consider the needs of older persons with disabilities in developing their service plans and to develop collaborative programs as appropriate to meet their needs, giving particular attention to individuals with severe disabilities. Disability is defined as substantial functional limitation in one or more life activity (e.g., mobility). Severe disability is defined as "a severe, chronic disability attributable to mental or physical impairment, or a combination of mental and physical impairments, that (A) is likely to continue indefinitely; and (B) results in substantial functional limitation in 3 or more ... major life activities... ." [42 USC 3002]. B. Financing Assistive Technology Through Title III grants to the states, local agencies on aging provide support services to assist older individuals in avoiding institutionalization and assist individuals in long-term care institutions who are able to return to their communities, including client assessment through case management and integration and coordination of community services. The term client assessment through case management includes providing assistive technology. In addition, home modifications, which are subject to a cap of $150 are provided as part of Title III services. The term assistive technology is defined as engineering methodologies, or scientific principles appropriate to meet the needs of, and address the barriers confronted by, older individuals with functional limitations. Formula grants are awarded to states to develop and strengthen service systems on aging. A state plan covering two, three or four years, with annual revision as necessary must be submitted for approval to the Commissioner on Aging. State plans must have several assurances including access to information on assistive technology: . Assurances associated with access to community-based services (i.e., transportation, outreach, and information and referral); . Provide for the establishment and maintenance of information and referral services in sufficient numbers to assure that all older individuals within the planning and services area covered by the plan will have reasonably convenient access to such services; . Assure the use of outreach efforts that will identify individuals eligible for assistance under the Act; with special emphasis on ... older individuals with severe disabilities. The phrase information and referral includes information relating to assistive technology. C. State Flexibility Although the priorities and requirements defined in the Older Americans Act provide numerous guidelines, states and communities have considerable flexibility in the design of their aging service systems. Each state defines its application of the definition of greatest economic or social need and its system of allocating funds to the AAAs. Supplementary funding levels from state and local government sources also vary widely. D. Current Policy Issues Amendments of 1987 (P.L. 100-175) stimulated several initiatives to improve services to older persons with developmental disabilities and/or mental health needs, including planning linkages between the Administration on Aging, Administration on Developmental Disabilities, and the Alcohol, Drug Abuse and Mental Health Administration; consultation between the Commissioner of Aging and the Commissioner of the Rehabilitation Services Administration in planning Older Americans Act programs; and consultation with developmental disabilities organizations in evaluating Older Americans Act programs whenever possible. Authorization for additional programs and services in the 1987 amendments, including assistance to older persons with special needs, was linked to a provision prohibiting funding for the new programs unless total appropriations for programs increased by at least 5 percent over the previous year. As a result, funding for some of the authorized services (e.g., outreach to people who may be eligible for benefits under the SSI, Medicaid and food stamp programs) has not been available. Amendments to the Older Americans Act for 1992 are currently being considered by Congress. E. Facilitators The primary feature supporting access to the financing of assistive technology is the requirement that AAAs provide information and referral services which includes information relating to assistive technology. In addition, the Act requires that states and AAAs consider the need for people with disabilities in planning services, with priority to those with severe disabilities. Local and state service plans must be made available for public comment. The home modifications program can be used to finance assistive technology directly, however, no more than $150 can be expended per individual. The Title III program does include a priority to people with low incomes and to members of racial and ethnic minority groups when there is increased need for services. F. Barriers The primary barrier is the overall demand on resources, in particular at the AAA level. Most of the AAA funding is used for the personnel who provide chore services, meals, and related supportive services. Overall, it is not clear to what extent states and AAAs are focusing on people with disabilities; there is limited information other than aggregate data on services to frail older individuals. In addition, many of the services targeted to the frail elderly population are focused on people with Alzheimer's and related disorders and their families. There is a strong perception that more could be done, e.g., through training and technical assistance, to increase AAA capabilities in serving people with disabilities, including help with access to assistive technology. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Collect and analyze information on assistive technology, including unmet needs as well as current expenditures; . Collaborate with other federal agencies, including HCFA, the Office of the Assistant Secretary for Planning and Evaluation, the National Council on Disability, and NIDRR (Department of Education), and the aging network in research on assistive technology - its significance in older people's lives, the cost effectiveness of assistive technology in relation to other services, and current access to assistive technology; . Develop research/technical assistance capabilities on assistive technology; . Designate assistive technology as a priority in discretionary grant programs. LEGISLATIVE . Add clear policy goal of expanding access to assistive technology that recognizes its importance in the lives of older individuals; . Add the definition of assistive technology devices and services as stated in the Technology-Related Assistance Act; . Mandate the provision of assistive technology services as an activity under the Title III program; . Require as a state plan and area agency planning requirement assessment of need for assistive technology services; . Expand federal funding to levels required for implementation of the outreach initiatives. STATE LEVEL: . Include assistive technology in state and area needs assessments and service plans; . Develop training/technical assistance in assistive technology; . Collaborate with Technology-Related Assistance grant programs; . Collect/analyze data on local programs that have been successful in promoting access to assistive technology. XI THE UNITED STATES TAX CODE A. Background The U.S. Tax Code contains thousands of provisions that affect the rate of taxation paid by individuals, businesses, and other organizations. In addition, the tax code provides for a myriad of deductions, adjustments to income and tax credits that can reduce the amount of tax owed to the federal government. The establishment of these provisions in tax legislation reflects federal policy goals, such as the promotion of home ownership, by allowing the deduction of real estate interest paid on a primary residence. One important tax credit is the Targeted Jobs Tax Credit that promotes employment of people with disabilities and others facing employment barriers. B. Financing Assistive Technology There are three ways in which the tax code addresses the cost of technology as a tax deduction for individuals with disabilities. First and most common is the deduction of technology purchases as a health care expense either for the individual with the disability or as a dependent of a taxpayer. Second, a deduction can be claimed when the technology expense is incurred in the production of income whether through the conduct of business or as an employee business expense. Third, a deduction can be claimed when there is a gift of technology devices to a nonprofit entity as a charitable contribution. The applicability of one or more deductions depends upon the circumstances, purpose, and documentation for the purchase. When more than one category is applicable, the desirability of which provision to use will vary because of differences in the length of time over which the deduction can be claimed or the proportion of total cost that can be deducted. The following summarizes six different tax code related methods of paying for assistive technology that can be used by individuals with disabilities. Medical Expenses: [IRS Sec. 213 as amended by the Tax Reform Act Sec. 133] Assistive technology can be financed through tax deductions for medical care expenses, on the basis of their role in overcoming or mitigating the effects of disabilities or "defects" (26 CFR 1.213). For example, expenditures for text telephones (TTs) (previously known as telecommunication devices for the deaf or TDDs), equipment to make driving feasible for persons with physical disabilities, and powerful lamps and print enlargement equipment purchased by a taxpayer for use in school by a visually impaired dependent child have been held tax deductible as health care costs. Individuals who itemize deductions may deduct amounts paid during the taxable year, if not reimbursed by insurance or otherwise, for medical care of the taxpayer and of the taxpayer's spouse and dependents, to the extent that the total of such expenses exceeds 7.5 percent of adjusted gross income (AGI). Medical care expenses eligible for the deduction include amounts paid by the taxpayer for health insurance (including after-tax employee contributions to employer health plans); diagnosis, treatment, or prevention of disease or malfunction of the body; and essential health care related transportation and lodging. The cost of prescription drugs and insulin are eligible also for the medical care expense deduction. All medical expenses insured within a given year are deductible in that year. Business Deductions: [IRS Secs. 67 and 162, Tax Reform Act of 1986 Sec. 132] Deducting the cost of assistive technology as a business expense depends on its usage in the production of income. Except in those cases where the item is inherently personal in nature, the use of adaptive technology for business purposes qualifies it for tax deductibility as an ordinary and necessary business expense. Unlike medical care, there is no threshold of AGI; the entire cost is deductible. Costs may, however, have to be depreciated, i.e., spread over several years. Assistive technology costs for individuals who are self-employed also fall under this provision. Employee Business Expenses: [IRS Sec. 67(b) Tax Reform Act of 1986 Sec. 132] Employee business expenses are a subcategory of business deductions. Assistive technology is deductible as an employee business expense when it is used in, and is necessary for, employment by an individual with a disability, and is not reimbursable. Other miscellaneous business expenses include non-reimbursed business travel expense and dues paid to a union or professional trade association by the employee with a disability. Employee business expenses are deductible under the miscellaneous deductions category, but only to the extent that total miscellaneous deductions exceed 2 percent of Adjusted Gross Income (AGI). This deduction is not available to taxpayers who do not itemize deductions. Targeted Jobs Tax Credit (TJTC): [IRS Sec. 51 as amended by Tax Reform Act of 1986 Sec. 1701] The Targeted Jobs Tax Credit program was established in 1977 under P.L. 97-300 to provide an incentive to employers to hire people with disabilities. These individuals are referred by state and Veterans' Administration vocational rehabilitation programs and include eight other categories of disadvantaged individuals facing barriers to employment, such as youths and young adults from economically disadvantaged families. The program provides a tax credit for one year for employment of individuals certified by the state Employment Service for a minimum of ninety days or 120 work hours. The maximum tax credit is 40 percent of the first year's wage up to $6,000 per employee, or a maximum credit of $2,400 per employee. A maximum credit of $1,200 per employee is available for summer youth employment for a minimum of fourteen days or twenty hours. Approximately $4.5 billion in tax credits was claimed during the first ten years of the program. In FY 1988 a total of 497,312 TJTC employees were claimed; about seven percent (36,619 individuals) were vocational rehabilitation referrals. Although there is no specific reference to assistive technology in the legislation, the tax credit can be used by the employer to finance job adaptations. The TJTC is provided in recognition of the potential for additional expense to the employer in the recruitment, hiring, and training of people in the target groups. Tax Credit For Architectural And Transportation Barrier Removal Expenses: [IRS Sec. 190] Section 190 of the Internal Revenue Code provides up to a $15,000 tax incentive to businesses to make their facilities and vehicles accessible to people with disabilities (handicapped) and elderly persons. Handicapped is defined as a physical or mental disability including blindness and deafness, which constitutes or results in a functional limitation to employment; or which substantially limits one or more of such individual's major life activities such as walking, speaking, learning or working. Taxpayers (individual proprietorships, partnerships, and affiliated corporations filing a consolidated return) can take a credit of up to $15,000 for qualified expenses for architectural and transportation barrier removal per year. Qualified expenses must meet specific Section 190 standards, such as the slope, handrail height, and section lengths for ramps; public telephones if they are equipped for persons with a hearing impairment; and the installation of warning signals that include both audible and visual signals. Prior to enactment of OBRA 1990, the maximum Section 190 deduction was $35,000; this was reduced to $15,000 in coordination with the enactment of the ADA Tax Credit for Small Business described in the following section. ADA Tax Credit For Small Business In OBRA 1990: (OBRA 1990, P.L. 101-508) The Omnibus Budget Reconciliation Act of 1990 includes a tax credit for small business for expenses associated with the costs of providing reasonable accommodation for individuals with disabilities while complying with Title I, Employment, and Title III, Public Accommodations of the Americans with Disabilities Act (see next section, Section XI, Civil Rights, below). The credit is available for taxable years beginning after the date of enactment of OBRA 1990 to small businesses, defined as having gross receipts of $1,000,000 or less or employing thirty or fewer full-time individuals the previous tax year. The available ADA tax credit is fifty percent of eligible access expenditures in excess of $250, to a maximum of $10,250. The purpose of the eligible access expenditures must be to comply with the ADA. Allowable expenditures include the acquisition or modification of equipment or devices for individuals with disabilities; removing architectural, communication, physical, or transportation barriers which prevent a business from being accessible to, or usable by, individuals with disabilities; providing qualified interpreters or other effective methods of making aurally delivered materials available to individuals with hearing impairments; providing qualified readers, taped texts, and other effective methods of making visually delivered materials available to individuals with visual impairments; or providing other similar services, modifications, materials or equipment. The eligible access expenditures must concur with the standards of the Architectural and Transportation Barriers Compliance Board and regulations set forth by the Attorney General. At the same time, OBRA 1990 reduced the current tax credit for the removal of architectural and transportation barriers to individuals with disabilities and elderly individuals from $35,000 to $15,000. Charitable Contributions Deduction: [IRS Secs. 170 and 501] The deduction available to individual taxpayers and businesses for charitable contributions, i.e., those made to tax exempt nonprofit organizations with applicable charitable, educational or other public purposes, can be used to finance assistive technology. For example, donations of cash or equipment can be made to assistive technology users who are not their dependents, with tax advantages for the donor through the charitable contributions deduction, if the donation is made to a tax-exempt organization willing to serve as conduit and if there is what is called an arms-length transaction. Tax exempt agencies with programs for accepting equipment and for recycling it to clients can help donors gain tax advantages greater than they would by donating cash. C. State Flexibility There is no state flexibility as taxation is federal. It remains to be seen whether states or cities that collect income tax also will create new incentives. D. Current Policy Issues To the degree that an individual's own resources remain a major source for the financing of assistive technology purchases then tax deductions and credits are a major benefit. To the degree that tax policy is utilized to capture resources of business and industry and direct or encourage expenditures on assistive technology for employees or others, alternative funding options of significant magnitude emerge. Increased understanding and knowledge by the business community of the role assistive technology plays in meeting the legal standard of reasonable accommodation or readily achievable accommodation can result in increased expenditures. E. Facilitators The passage of ADA may increase the interest of business and industry in utilizing the targeted jobs tax credit, the barrier removal deduction, and the tax credit for small business. New responsibilities under ADA have focused the attention of the private sector on the cost of reasonable accommodation. Assistive technology provides a means to reduce barriers to employment and access to transportation, communication, and public accommodations and tax policy has provided a means of reducing the costs of the private sector and benefitting individuals with disabilities at the same time. F. Barriers The current use of the medical expense deduction and business deductions and credits remains underutilized. The medical expense deduction is not widely understood by persons with disabilities and their families as a tax benefit that will cover a wide array of assistive technology devices and services. This deduction is limited also to only those individuals who itemize deductions on their tax return and ignores the extra costs associated with disabilities for millions of Americans who file simplified returns. G. Suggestions for Reform FEDERAL LEVEL: LEGISLATIVE . Clarify the extent of coverage of assistive technology purchases under the current medical expenses deduction; . Establish a tax deduction for non-itemizers that covers assistive technology purchases for individuals with disabilities and their families; . Establish an individual assistive technology account that is deductible (similar to the existing individual retirement account) to allow for the sheltering and saving of income for future purchase of assistive technology devices. XI. CIVIL RIGHTS LEGISLATION ÀÀ The Americans With Disabilities Act ÀÀ Section 504 Of The Rehabilitation Act ÀÀ Section 508 Of The Rehabilitation Act 1. THE AMERICANS WITH DISABILITIES ACT A. Background The Americans With Disabilities Act (ADA) was enacted in 1990 (P.L. 101-336). This historic legislation forbids discrimination against individualize with disabilities and extends, for the first time, federal civil rights protection to people with disabilities in the areas of employment, transportation, public accommodations, state and local government services, and telecommunications. The law broadens civil rights protections for more than 43 million Americans by requiring all affected entities to provide reasonable accommodation to persons with disabilities. Religious organizations and private clubs are exempt from the ADA provisions. Private individuals, the Equal Employment Opportunity Commission (EEOC), and the Department of Justice (DOJ) have authority to bring actions in court to enforce compliance with the mandates of ADA. The following summarizes ADA's Titles: Title I, Employment: Employers, employment agencies, labor organizations and joint labor management committees with 15 or more employees will be prohibited from discrimination against any qualified individual with a disability with regard to job application and interview procedures: hiring, advancement or discharge; employee compensation; job training; and other terms, conditions or privileges of employment. Effective date is July 26, 1991, for employers with 25 or more employees; July 26, 1994 by employers with 15 or more employees. Title II, Public Service: Discrimination on the basis of disabilities is prohibited in all programs, activities and services provided or made available by state and local governments and any instrumentalities thereof regardless of whether those entities receive federal financial assistance. This title includes buses, light and rapid rail, including fixed route systems, paratransit, demand response systems and transportation facilities) and public transportation by intercity Amtrak and commuter rail. Effective date is January 26, 1992. Title III, Public Accommodations Operated by Private Entities: Businesses that provide services to the general public, as well as public and private entities that provide public transportation services, are prohibited from discriminating on the basis of disability and must provide full and equal enjoyment of goods, services, facilities, privileges, advantages and accommodations to individuals with disabilities. Commercial facilities and places of public accommodations, included are places of lodging, restaurants, theaters and concert halls, banks, barber shops, museums and libraries, day care centers, nursery schools and offices of accountants, lawyers, and health care providers, are required to be made accessible for people with disabilities. Effective date is January 26, 1992. Title IV, Telecommunications: Telephone services offered to the general public must include 24 hour daily interstate and intrastate telecommunications relay services for Text Telephone (TT) users so that individuals with disabilities have equal access to communications equivalent to those provided to individuals able to use voice telephone systems. Effective date is July 26, 1993. Disability is broadly defined in the Act. Across the Titles, it is "an individual who has a physical or mental impairment that substantially limits one or more major life activities, or has a record of such an impairment, or who is regarded as having such an impairment." Examples of physical or mental impairments include contagious and noncontagious diseases and conditions as orthopedic, visual, speech and hearing impairments; cerebral palsy, epilepsy, muscular dystrophy, emotional illness, specific learning disabilities, HIV disease (whether symptomatic or asymptomatic), tuberculosis, drug addition and alcoholism. Major life activities includes functions such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. Auxiliary Aids & Services: The statutory definition for such items, i.e., certain assistive technology, is as follows: "the term "auxiliary aids and services includes (A) qualified interpreters or other effective methods of making aurally delivered materials available to individuals with hearing impairments; (B) qualified readers, taped texts or other effective methods of making visually delivered materials available to individuals with visual impairments; (C) acquisition or modification of equipment or devices; and (D) other similar services and actions." However, in the final regulations for Titles II and III, as promulgated by the Department of Justice, such assistive technology is more broadly defined and described: "Auxiliary aids and services include a wide range of services and devices for ensuring equally effective communication" (and includes) (1) Qualified interpreters, notetakers, transcription services, written materials, telephone handset amplifiers, assistive listening devices, assistive listening systems, telephones compatible with hearing aids, closed caption decoders, open and closed captioning, telecommunications devices for deaf persons (TTDs), videotext displays, or other effective methods of making aurally delivered materials available to individuals with hearing impairments; (2) Qualified readers, taped texts, audio recordings, Brailled materials, large print materials, or other effective methods of making visually delivered materials available to individuals with visual impairments; (3) Acquisition or modification of equipment or devices; and (4) Other similar services and actions." This list is meant to be illustrative rather than all inclusive of what is possible. While the definition is meant to include state-of-the-art devices and emerging technology, State and local public services are not required to use the newest or most advanced technologies as long as the auxiliary aid or service that is selected affords effective communication. The definition also indicates that auxiliary aids and services can include the acquisition or modification of equipment or devices or other similar services and actions which might be required in order to afford someone with a hearing, speech or vision disability with an equally effective opportunity to communicate with others. In determining what kind of auxiliary aid and service is needed, the entity must "give primary consideration to the requests of the individual with disabilities." Therefore, the provisions of ADA create a wide range of opportunities for the expansion of access to assistive technology by persons with disabilities in the workplace and the marketplace. B. Financing Assistive Technology The ADA does set parameters on the costs employers, government and business must allow for reasonable accommodation including assistive technology, on a case-by-case basis. Title III, Public Accommodations: ADA says that extra charges may not be imposed on individuals with disabilities to cover the costs of public accommodation. For example, a restaurant may not charge a wheelchair user extra for home delivery when it is provided as the alternative to barrier removal. The entity making accommodation and providing services is expected to pay for accommodation for persons with disabilities as they now accommodate to persons without disabilities. The threshold for costs by an entity is the level of "undue burden" it is required to reach to make accommodation. Undue burden is defined as a significant difficulty or expense and serves as a limitation on the obligation to provide auxiliary aids and services and will be defined on a case-by-case basis. Title I, Employment: Factors to be considered in determining if an accommodation would pose an undue hardship include: l. the nature and net cost of the needed accommodation, minus any available tax credits, deductions and outside funding; 2. the overall size and financial resources of the employer's entire business; 3. the overall size and financial resources of the actual work facility that the person with a disability would be working; and, 4. the impact that the accommodation would have on the operations of the business and its other employees. However, if a business can show that providing an accommodation would pose an undue hardship for it to do in its entirety, the business must be open to sharing the costs of doing so with the person with a disability and/or an outside funding agency. Thus, if a person needs a series of job accommodations costing $5,000 and a firm could only afford to pay $2,500 without incurring an undue burden, it has to pay at least this much of the costs if the individual or others can cover the remaining expenses. Cost-sharing strategies can prove immensely important in opening up new job opportunities for individuals with significant disabilities who have extensive job accommodation needs. While a business, as a public accommodation, is not required to provide personal devices such as wheelchairs, individually prescribed devices such as prescription eyeglasses or hearing aids or services, or services of a personal nature including assistance in eating, toileting, or dressing, there is nothing in the rule to say that a business cannot provide these if they wish to do so. Title IV of ADA is specific to telecommunications, providing that telephone service offered to the general public must include interstate and intrastate telecommunications relay service (TRS) for TT (text telephone) users. Under ADA the terms TDD or Telephone Device for the Deaf has been replaced with the more generic term, Text Telephone or TT device. Services must provide access to TT users equivalent to that provided for individuals able to use voice telephone systems. ADA specifically states the cost parameters for the telephone relay system: it states that TRS users shall pay rates no greater than the rates paid for functionally equivalent services with respect to such factors as the duration of the call, time of day and geographic distance of the call. C. State Flexibility States have no role in the implementation of Titles I, III and IV. However, state governments are responsible for implementation of the ADA in relation to Title II, the section on public services. The ADA requires that all state and local government services be accessible to people with disabilities as defined in Section 504 (of the Rehabilitation Act), regardless of the funding source and including those provided by private entities with state or local government funds. Although all public services will have to comply with federal law and regulations, states are expected to vary considerably in the speed and comprehensiveness of their ADA implementation. State governments also may vary in the speed and comprehensiveness of their compliance as employers. Moreover, since much of the implementation of ADA is on a case-by-case basis, states will have considerable flexibility in creating means of reasonable accommodation. States vary widely in their use of state anti-discrimination statutes on the basis of disability, as well as in the enforcement of such laws where they exist. D. Current Policy Issues Insurance: Within Title 1, Employment, ADA's Final Rule stated that an employer's health insurance plan must be open to people with disabilities of all ages, i.e., for employees and their dependents, on a nondiscriminatory basis. However, the ADA and these rules do permit insurance companies and others to set up and administer "the terms of a bona fide plans that are based on underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law, including pre-existing condition requirements." The disability community is concerned about this issue as many States' health insurance laws discriminate against those with disabilities and their families. Language in the House and Senate committee reports indicates that Congress intended to reach insurance practices by prohibiting differential treatment of individuals with disabilities in insurance offered by public accommodations unless the differences are justified: "Under the ADA, a person with a disability cannot be denied insurance or be subject to different terms or conditions of insurance based on disability alone, if the disability does not pose increased risks" and "insurers may continue to sell to and underwrite individuals applying for life, health or other insurance on an individually underwritten basis, or to service such insurance products, so long as the standards used are based on sound actuarial data and not on speculation ... " Since private health insurance can be a major source of financing of assistive technology, implementation of these provisions will be essential to thousands of persons with disabilities. Compliance/Enforcement: It is too early to determine what role the EEOC and DOJ will take in responding to complaints, monitoring for compliance and assuring full enforcement of the law. Until such data become available the ADA can only be described as a potential major financing stimulus for assistive technology for individuals with disabilities in the workplace and to a lesser extent in public accommodation. E. Facilitators The Department of Justice and the Equal Employment Opportunity Commission are the lead federal agencies with enforcement responsibility. The DOJ is funding several technical assistance projects on cost effective implementation of the ADA. Many of these projects are expected to include consultation to entities affected by the ADA on how they can and must use assistive technology in complying with the ADA. EEOC's definition of Reasonable Accommodation states that it can include but is not limited to: "Making existing facilities readily accessible to and usable by employees with disabilities; job restructuring, part-time or modified work schedules; reassignment to a vacant position; the acquisition or modification of equipment or devices; appropriate adjustment or modifications of examinations, training materials or policies; the provision of qualified readers or interpreters; and other reasonable accommodations for individuals with disabilities." EEOC's section on supported employment indicates that this may be seen as a legitimate means of affording a reasonable accommodation to someone with a disability in a limited number of instances. Also " ... an employer, under certain circumstances, may be required to provide modified training materials or a temporary 'job coach' to assist in the training of a qualified individual with a disability as a reasonable accommodation." F. Barriers In the interpretive guidance to ADA by the EEOC there are no examples or illustrations of how different types of assistive technology can be used to provide reasonable accommodation to a job applicant or an employee with a disability in a wide variety of cost-effective ways. Also, ownership and possession of assistive technology devices in the workplace and in places of public accommodation will be worked out on a case-by-case basis. ADA does not require the employer to allow the assistive technology devices and/or services to be taken off-site. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Ensure that assistive technology is a major focus of technical assistance on implementation of the ADA; . Fund comprehensive monitoring and data collection on implementation, including access through assistive technology and access to assistive technology; . Examine the effects of the ADA on people's lives, as well as more traditional analyses of complaints filed and responses made. LEGISLATIVE . Amend ADA to include a right to and definition of communications accessibility to read as follows: (A) COMMUNICATIONS ACCESSIBILITY - means making all expressive and receptive communications accessible to persons with disabilities, and recognizes that every individual is (1) capable of communicating, and (2) knows best how to convey his or her thoughts to others; and (3) extends the same basic common courtesies of interacting with people with disabilities that are extended to others in receiving the goods, services, facilities, privileges, advantages, or accommodations offered by an entity providing such services by; -- Affording such individuals with the necessary opportunity, auxiliary aids and supports to effectively communicate with others. In determining what type of auxiliary aid is necessary, an entity shall give primary consideration to the requests of the individual with disabilities.[*] -- Providing a communications environment which allows and encourages persons with motor, cognitive, hearing, speech or vision disabilities to effectively express themselves, understand others, and/or receive or send information and signals over public alert, public address and telecommunications systems and networks; -- Providing individuals with disabilities the assistive technology, interpretive services and personal assistance each needs to communicate effectively with others. . Amend ADA to recognize communications access as an issue that impacts individuals with a variety of disabilities other than hearing impairment and therefore to expand any definition of access with an added reference to "augmentative communication devices, computer modem access via the telephone lines, or other effective methods of making communication available to individuals with hearing or speech impairments" whenever TTDs/TTs are listed as a device. . Amend ADA to include an explanation of communications accommodation as follows: (B) Accommodation by an entity means taking the time to communicate to a person with limited speech or who is using a manual communication board or assistive device; speaking and responding directly to such an individual rather than any third party unless directed otherwise (to the extent practical, this should apply to children and adults); not hanging up on or refusing telephone inquiries from such individuals or not forcing someone to write everything out on a note pad if he or she does not want to communicate in this fashion; or not inferring or implying that just because an individual has limited natural speech that he or she also has limited or impaired intelligence, hearing or judgment. . Amend ADA to include examples of assistive devices that could be a reasonable accommodation to someone with cerebral palsy or other severe physical disabilities as follows; (C) The following lists examples of assistive technology devices that could be a reasonable accommodation to someone with cerebral palsy or other severe physical disability and includes but is not limited to: Remote control switches for use of computers and other office equipment; adaptive switches to turn on/off lights; telephone adaptations such as speaker phones, headsets, modems, TDDs or TTs; reachers; simple adaptions/fixtures for using office machines; magnifiers; adjustable furniture; adaptive computer software; page turners; lever door handles; access to a regular computer or typewriter to fill out forms; communication boards; telephones with audio and data transmission capability; telephones with wireless audio and data communication capabilities; augmentative communication devices; automated interpreters; computer and computer modem access in commonly used access forms such as ASCII; voice recognition systems; voice activated telephones; pointing and typing aids such as headpointers and mouthsticks; alternative switches to control lights and elevator doors and other access devices; electronic equipment which can be activated by sipping, puffing, movement of the eye, head, wrist, finger, or by remote or wireless means; alternative keyboards; keyguards; large button telephones; automatic dialing, and other effective and efficient methods of assuring reasonable accommodation and access to telecommunication networks, switching services and similar services that allow an individual with a disability to enjoy the same benefits and privileges of services that are made available to individuals without speech, mobility or manual dexterity impairments. . Amend ADA to incorporate the same definition of assistive technology as found in the Technology-Related Assistance Act. STATE LEVEL: . Move quickly toward full compliance, including expanded training/technical assistance on assistive technology and its significance in promoting access and compliance; . Monitor compliance at the local level; . Examine and publicize ways assistive technology can be used in cost effective compliance; . Emphasize consumer choice as much as possible in all assistive technology used in compliance activities. 2. SECTION 504 OF THE REHABILITATION ACT OF 1973 [29 USC 794] A. Background Section 504 of the Rehabilitation Act of 1973 was enacted to extend to disability the prohibition against discrimination that previously had been stated for gender, national origin, race and religion. Section 504 states that "No otherwise qualified handicapped individual...shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subject to discrimination under any program or activity receiving federal assistance." The definition of a handicapped individual is a person who has a physical or mental impairment which substantially limits one or more of such person's major life activities, a record of such impairment, or is regarded as having such an impairment. Each federal agency has established regulations to govern Section 504 implementation in its respective programs. For example, regulations at 34 CFR 104 apply to IDEA and other programs administered by the U.S. Department of Education. Agencies have developed different definitions of qualified handicapped individual and of reasonable accommodation, a key provision of Section 504 in regards to compliance activities by entities receiving federal funds. B. Financing Assistive Technology Section 504 is a civil rights statute that requires equal access and equal opportunity to persons with disabilities, and therefore does not provide any direct funding. The reasonable accommodation and access provisions have been interpreted to include a wide range of technology, including low technology adaptations to the environment and TDD lines for people with hearing impairments. Section 504 can be significant in promoting access to assistive technology in individual programs. For example, under Section 504 children can receive assistive technology regardless of whether it is needed to allow the child to benefit from special education, potentially expanding the scope of possible assistive technology integration in the schools. Section 504 prohibits schools from denying children the opportunity to take home assistive devices if those devices are needed to enable those children to have an equal opportunity to participate in school. Section 504 regulations for education also broaden the eligibility of children with disabilities to include those with conditions other than the eleven listed in the IDEA regulations, children whose disability affects a major life activity, and children whose disability is temporary. C. State Flexibility There is essentially no flexibility in Section 504, as this is a federal civil rights statute. There have been wide differences, however, in the consistency of state monitoring of compliance activities, assistance to entities in timely compliance, and compliance in federally funded state government activities. D. Current Policy Issues The Americans with Disabilities Act (ADA), P.L. 101-336, strengthened the anti-discrimination provisions of Section 504 by extending its coverage to all services provided by state and local governments and their agents, regardless of whether or not the programs receive any federal funds. Over the past few years legislation also has been enacted that clarifies the right of individuals with disabilities to be covered simultaneously by both IDEA and Section 504, the coverage of Section 504 to the entire entity receiving federal funds rather than just the program component, and the right to sue state governments that are not complying with Section 504. For example, the IDEA amendments of 1990 (P.L. 101-476) included a provision clarifying that states waive their 11th Amendment immunity against suits filed by individuals by receiving federal IDEA funding. E. Facilitators Although not specific to assistive technology, Section 504 has clear policy on non- discrimination, access, and reasonable accommodation that provides support for access to assistive technology. Section 504 also provides a broad definition of people with disability who are covered by its provisions, and a potentially broad scope of covered technology in publicly funded programs. Section 504 regulations issued by individual federal agencies frequently provide additional support to access, as illustrated by the 504 regulations governing education under IDEA. Section 504 also provides for the involvement of people with disabilities in service programs' assessment of their need for compliance. F. Barriers The most frequently heard concern is the lack of enforcement of Section 504, compounded by lack of information and misunderstanding of the requirements among individuals with disabilities and family members as well as those providing services. Implementation of the extended coverage of Section 504 under ADA is just beginning. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Expand monitoring/enforcement of Section 504 across all federal programs; . Clarify the significance of assistive technology in 504 compliance, using the definition of assistive technology found in the Technology-Related Assistance Act; . Provide technical assistance on assistive technology and other 504 compliance strategies in coordination with ADA compliance technical assistance. 3. SECTION 508 OF THE REHABILITATION ACT [29 U.S.C. 794d] A. Background Section 508 is an amendment to the Rehabilitation Act of 1973 adopted by Congress in 1986 (P.L. 99-506) to promote equal access for people with disabilities to federal jobs, including public information services and electronic tools. Section 508 establishes federal-wide procurement policy for computer accommodation to ensure that individuals with disabilities may use electronic office equipment with or without special peripherals. The guidelines apply to federal agencies as they acquire information technology and services. The needs of persons with disabilities for access to work-related and public information resources must be met in agency procurement. B. Financing Assistive Technology Workstations for Federal employees with disabilities which are sensory, cognitive or mobility related should be equipped with the necessary assistive technology. All Federal agencies that are regulated by the Federal Information Resources Management Regulations (FIRMR) must ensure information accessibility through electronic office equipment for individuals with disabilities. The financing of assistive technology is by the acquisition or modification of Federal Information Program (FIP) resources in a manner that accommodates the functional limitations of individuals with disabilities. Federal agencies that acquire information technology and services must comply with the guidelines of Section 508. Additionally, states funded under Title I of P.L. 100-407, The Technology Related Assistance for Individuals with Disabilities Act of 1988, are required to demonstrate that they are in compliance with Section 508 in the third year of their projects in order to be eligible to apply for an extension grant. C. State Flexibility There is no state flexibility, per se. D. Current Policy Issues The pending reauthorization of Rehabilitation Act and any significant policy changes that occur at that time may positively affect access to funding of assistive technology. (See Section VI, Rehabilitation Act.) E. Facilitators To facilitate the implementation of 508, in 1985, General Services Administration Information Resources Management Service (IRMS) established an information resource center called the Clearinghouse on Computer Accommodation (COCA), to assist federal agencies in providing information accessibility to individuals with disabilities. COCA provides regular training programs for governmental officers and provides technical assistance upon request to employees who seek information on accessibility for computers, telecommunication systems, and other electronic office equipment. States funded under the Technology Related Assistance for Individuals with Disabilities Act of 1988, P.L. 100-407, must comply with Section 508. This mandate covers all agencies, entities, and commissions, of the State and their employees. This requirement comes as a result of a recent request to clarify and interpret Section 34 CFR Section 345.21(g) of the regulation from the National Institute on Disability and Rehabilitation Research. According to counsel, States receiving a development grant and applying for an extension grant under Title I of the P.L. 100-407, must comply with Section 508 of the Rehabilitation Act of 1973. Finally, Section 508 requires that each agency designate a senior official (DSO) for federal information processing who is primarily responsible for ensuring electronic office equipment accessibility for current or prospective employees with disabilities. This responsibility also includes providing access to Federal public information resources for individuals with disabilities. The authorized representative monitors progress toward achieving electronic equipment accessibility goals. F. Barriers Several points in the government's procurement procedures account for the delays in full implementation of, or compliance of, Section 508: . There is a lack of awareness by federal agencies of the requirements of the law compounded by a lack of awareness by agencies about where to go for solutions to accessibility requirements. . The vast majority of governmental purchases of electronic office equipment made in the last three years were not made through large GSA monitored procurements. Although GSA has responsibility for overseeing governmental procurement of office equipment, only a relatively small portion of these portion of these purchases are made through large purchases that require preapproval by GSA. Smaller procurements--generally under $2,500,000--can be made under "delegated authority" granted agencies by GSA. . Even when large procurements of accessible electronic office equipment are made by federal agencies, employees with disabilities are not assured of obtaining needed access technology. Often, program managers in the branches where the employee works must make an official purchase request for the needed equipment. Many program officers do not know the regulating accessibility and accommodations for persons with disabilities. They may also have equipment budgets that seriously limit their equipment acquisitions, and personal or branch priorities may not place access technology high on the list of equipment to be secured. . There is a general lack of enforcement of Section 508 by the General Services Administration which is charged with the oversight of large procurements by any Federal agency. . Section 508 includes electronic office equipment. Only PCs and microcomputers have been addressed by GSA. There are many other types of electronic office equipment, photocopiers, facsimile machines and especially telephone equipment which is integrated into the total office environment. Telephone equipment, in particular with data handling capacity, must be accessible to individuals with disabilities. Federal Acquisition Regulations have not been updated to include all electronic office equipment available on the market. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Speed up implementation of Section 508. . Conduct evaluation of Section 508 implementation. . Increase technical assistance to states on compliance with Section 508. . Update the Federal Acquisition Regulations to include all electronic office equipment available on the market. . Exercise caution when considering the purchase of new computer hardware and software and the effect on the productivity of employees who are blind and visually impaired. For example, computer displays that are based on a video image, rather than on the display of individual letters, is becoming commonplace. This technique, often called a graphical use interface, remains inaccessible to individuals who are blind although progress has been made by some manufacturers. Another example is the CD-ROM which is growing in popularity as a medium for storing large quantities of information and raw data. The format in which this information is stored on the CD-ROM again may limit access to users who are blind. . GSA implementation and enforcement activities should provide more education and services for program as well as procurement managers. Education and training on accessibility must be infused into all GSA training programs. Information on guidance on product accessibility should be incorporated into all other GSA management training courses and in all information resources management (IRM) materials. . GSA should provide all Federal program and procurement managers increased education, training materials, and technical services. GSA should diligently enforce the accessibility regulations, both in large procurements and in small ones. Suggestions For All Civil Rights Initiatives FEDERAL LEVEL: EXECUTIVE . Collect/analyze data on implementation and enforcement, including assistive technology-supported access and access to assistive technology itself; . Support broad-based technical assistance on assistive technology and its significance to access and full citizenship, including other civil rights such as voting/polling place accessibility. XII. TECHNOLOGY-RELATED ASSISTANCE FOR INDIVIDUALS WITH DISABILITIES ACT OF 1988 ("The Tech Act") [29 USC 2201-2271] A. Background The Technology-Related Assistance for Individuals with Disabilities Act of 1988 (P.L. 100-407) was enacted to increase access to assistive technology for individuals with disabilities, including the promotion of access to financing. Its three purposes are (1) to provide financial assistance to the states to help each state develop and implement a consumer-responsive statewide program of technology-related assistance for individuals of all ages with disabilities; (2) to facilitate the identification of federal policies that facilitate payment for assistive technology and those that impede such payment, and the elimination of inappropriate barriers to such payment; and (3) to enhance the ability of the federal government to provides the states with technical assistance, information, training, public awareness programs, and funding for model demonstration and innovation projects. The legislation was enacted in recognition that for "(S)ome individuals with disabilities, assistive technology is a necessity that enables them to engage in or perform many tasks...[and] to have greater control over their own lives; participate in and contribute more fully to activities in their home, school, and work environments, and in their communities; interact to a greater extent with nondisabled individuals; and otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities." The Act also references underserved groups, defined as "any group of individuals with disabilities who, because of disability, place of residence, geographic location, age, race, sex, or socioeconomic status, have not historically sought, been eligible for, or received technology-related assistance." A comprehensive definition of assistive technology is used, to include services that help individuals select, acquire, and use assistive technology devices as well as the devices themselves. Title I of the Act established a program of federal grants to the states. Development grants are provided for a three-year period, with a possible two-year extension grant. The first round of grants in FY 1989 provided grants to nine states, followed by fourteen additional states in FY 1990, and eight more in FY 1991, to a total of thirty-one currently. As of the FY 1991 awards, all states have submitted applications, and thirty-one have received grants. An additional ten are expected to receive funding in FY 1992. The minimum grant award is $500,000. Some extension grants are expected to be awarded in FY 1992 on a competitive basis. To be eligible, states will have to have demonstrated significant progress in implementation, based in part on a federal on-site review during the third year of state grants. Although no specific activities are required, NIDRR has made it clear that states are expected to engage in the activities suggested in the legislation. The Act defines the purpose of financial assistance to the states to develop assistive technology systems that: -- are consumer-responsive; -- are responsive to individuals with disabilities of all ages; -- increase awareness of the needs of individuals with disabilities for assistive technology; -- increase awareness of policies, practices, and procedures that facilitate or impede the availability or provision of assistive technology; -- increase the availability of and funding for the provision of assistive technology for individuals with disabilities; -- increase awareness and knowledge of the efficacy of assistive technology among individuals with disabilities, the families or representatives of individuals with disabilities, individuals who work for public agencies and private entities that have contact with individuals with disabilities (including insurers), employers, and other appropriate individuals; -- increase the capacity of public and private entities to provide technology-related assistance, particularly assistive technology devices and assistive technology services, and to pay for the provision of assistive technology; -- increase coordination among state agencies and public and private entities that provide technology-related assistance; and -- increase the probability that individuals of all ages with disabilities, to the extent appropriate, will be able to secure and maintain possession of assistive technology devices as such individuals make the transition between services offered by human services agencies or between settings of daily living. B. Financing Assistive Technology Grants to the states are focused on the development of state systems rather than as financing mechanisms in themselves, however, they are used in some states as a financing resource. Activities are expected to include -- the provision of and payment for assistive technology as well as needs assessment; -- identification and coordination of resources; -- information dissemination, training and technical assistance to individuals with disabilities, family members, insurers, employers, and individuals in all relevant public and private agencies; -- public awareness programs focused on the efficacy and availability of assistive technology; -- assistance to statewide and community-based organizations that provide assistive technology services; -- support to public-private sector collaboration; the development and application of personnel standards; -- the compilation and evaluation of program data; and -- the establishment of procedures for the active involvement of people with disabilities, family members, and other appropriate individuals in the development and implementation of the state's assistive technology program, with special emphasis on the involvement of assistive technology users. Additional strategies that can be funded through Title I grants include the development of model delivery systems, encouragement to support groups, a public information system, and inter-state agreements. Applications must describe the involvement of people with disabilities in the development of the application and provisions for continuing involvement, results of a preliminary needs assessment, and expected outcomes. States must assure that the grant funds will supplement and not replace funds from other sources. Applications for extension grants must include a plan to assess people's satisfaction with the assistive technology system as well as demonstrate significant progress in the statewide program that has been developed, in line with the purposes of state development grants defined in the legislation. The federal monitoring program includes an on-site monitoring visit in the third year of the development grant as well as annual progress reports. C. State Flexibility States have considerable flexibility in their use of Title I grants; wide variety is reported in the design and implementation of state systems. As noted above, however, NIDRR has indicated to states that they are expected to include the activities found in the legislation, and most participating states are reported to do so. States also have flexibility in their decision to apply for grant funding, however, no states have chosen not to apply at least once. D. Current Policy Issues A national evaluation of the Title I program is planned by the National Institute of Disability and Rehabilitation Research (NIDRR), the administering agency. The evaluation will focus on the effects of the program on the lives of individuals with disabilities and will be used in a report to Congress on implementation of the legislation, due October 1, 1992. In conjunction with the evaluation, NIDRR will develop an information system. As defined in the legislation, it is to include a qualitative and quantitative description of the impact of the state assistive technology systems on the lives of people with disabilities and on public agencies, the fiscal resources committed to assistive technology, community-based organizations, and employers. Program monitoring currently includes site visits, informal communication, and annual reports from the participating states. NIDRR has funded a comprehensive technical assistance program to the states receiving Title I grants, being provided by RESNA. Activities have included resource information on federal financing sources as well as individually designed technical assistance. Title II of the Act authorizes four components: . A study by the National Council on Disability on the financing of assistive technology, to produce recommendations to the Congress and the President regarding federal laws, policies and procedures that facilitate or impede states in developing consumer-responsive assistive technology programs; federal and state laws, policies and procedures that facilitate or impede access to assistive technology for individuals with disabilities; policies, practices, and procedures of insurers and other private entities that facilitate or impede such access; and alternative strategies for acquiring or paying for assistive technology. This report is part of the required study. . A feasibility study on the establishment of a national information and referral network on assistive technology (currently being conducted for NIDRR by the University of South Carolina Center for Developmental Disabilities, with implementation to be determined by the results of the study. . Training and public awareness projects, including consumer training; efforts to increase assistive technology awareness among consumers, family members, and the general public; and grants to institutions of higher education for professional training in technology-related careers. . Demonstration and innovation projects, such as model service delivery, technology research and development, and assistive technology loan demonstrations. E. Facilitators The legislation includes a series of clear policy statements on the importance of access to assistive technology; its central purpose is to promote such access, including effective and coordinated financing systems. It includes a comprehensive definition of assistive technology that has served, in turn, as a model for IDEA and other legislation that affects access. The focus on consumer responsive systems is significant, as well as the requirement that states include mechanisms for the involvement of individuals with disabilities in the design and ongoing implementation of the systems that are developed. The target population includes all those with disabilities who need assistive technology, regardless of age. In addition, the Act suggests that states attend to the assistive technology needs of those who are members of underserved groups. Virtually all of the suggested activities and purposes in the Title I program address the kinds of barriers that have been identified in the analysis of federal programs and policies, including poor coordination, limited knowledge, and gaps at transition points. There are some indications that participating states have enjoyed varying degrees of awareness building, networking and consortium development, and consumer involvement. The Act also provides for a system of knowledge dissemination and technical assistance at the federal level. F. Barriers Because the Act is focused on systems development, it is not a primary financing resource in itself, and does not address concerns in many states that current resources for financing are insufficient. States which use Title I funds to pay for assistive technology also run the risk of helping other programs continue to avoid their assistive technology financing responsibilities. In addition, federal appropriation levels do not permit all states to receive development and extension grants. There has also been some concern that the use of grant awards at or near the $500,000 minimum has been particularly inadequate in states with large populations. It is too early to know what role the programs authorized by the Act have played in the improvement of access to financing. Some questions have been raised about the possible need to strengthen federal monitoring and leadership to the states on effectiveness in systems development. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Establish authorization for funding on a formula basis for all states that guarantee a minimum allocation of $500,000 and take into account the needs of large population states for additional funding; . Establish a multi-year discretionary grant program for communities on a local level that target interagency collaboration, consumer responsiveness and systems change to stimulate expanded funding and access to assistive technology; . Provide start up funding for states to establish a revolving low interest loan fund for purchase of assistive technology with authorization of a minimum allocation of five million dollars per state that must be matched by participating states on a one-to-one basis; . Authorize the funding of a national legal and advocacy clearinghouse and resource center that specializes in individual and systems support on financing of assistive technology. The Center would assist individuals, agencies and states with accessing public funding for and protecting the right to assistive technology for individuals with disabilities across age and type of disability; . Require participation of selected state agencies at a funding roundtable discussion on a quarterly basis to encourage and promote interagency coordination. XIII. TELECOMMUNICATIONS ACCESSIBILITY ENHANCEMENT ACT OF 1988 [40 USC 762] and TELECOMMUNICATIONS FOR THE DISABLED ACT OF 1982 [47 USC Section 610 et seq.] A. Background Public Law 100-542, the Telecommunications Accessibility Enhancement Act of 1988, directs the Federal telecommunications system be fully accessible to individuals who are hearing and speech impaired, including Federal employees. The intent of the law is to ensure that all Federal agencies provide telecommunications accessibility to all individuals with hearing and speech impairments who either work for or do business with the Federal Government. The Act requires the General Services Administration (GSA) in consultation with the Architectural and Transportation Barriers Compliance Board (ATBCB), the Interagency Committee on Computer Support of Handicapped Employees, the Federal Communications Commission and affected Federal agencies to assure that the Federal telecommunications system is fully accessible to individuals who are hearing and/or speech impaired. The Telecommunications for the Disabled Act of 1982, (P.L. 97-410) for the first time established as national policy a right to persons with impaired hearing to have reasonable access to telephone services. The Act established three specific requirements for the purpose of attaining hearing aid compatibility. First the Act required the Federal Communications Commission (FCC) to (1) establish regulations for uniform technical standards for hearing aid compatibility; (2) require telephones in certain locations designated as essential phones, to be equipped for use with hearing aids; (3) establish specific requirements for informational labeling on telephone equipment by the FCC. Toward this end, in 1983 the Commission issued a Rule requiring that every telephone offered to the public on or after June 1, 1984, contain on the surface of its package a statement whether or not it is hearing aid compatible. Congress defined "essential phones" to include coin-operated telephones, telephones provided for emergency use, and telephones frequently needed by individuals with impaired hearing. In 1984, the FCC clarified each of these categories. First the Commission defined coin-operated telephones to include those telephones found in public or semi-public locations, such as drugstores, gas stations, or private clubs. Second, the FCC divided "telephones provide for emergency use into three categories: (1) telephones in isolated locations such as elevators, tunnels, and highways, (2) telephones with direct lines to emergency authorities such as the police and fire departments, and (3) telephones needed to signal life-threatening or emergency situations in confined settings such as hospitals or prisons. The final category defined in the rules as "essential" are those which are frequently needed by individuals who are hearing impaired. Essential phones are: (1) telephones for use with credit cards only (unless a hearing aid compatible coin operated telephone is located nearby), (2) telephones in the workplace which are necessary for the performance of the employee's duties, (3) telephones found in buildings in which visits by the public are reasonable expected, e.g., lobbies of hotels and apartment buildings, stores, and public transportation terminals, (4) telephones available for a minimum of ten percent of the rooms in any given hotel, and (5) telephones in locations, such as hospitals and prisons, where and individual may be confined, but which are not needed to signal the presence of a life-threatening situation. The FCC required that all essential telephones installed on or after January 1, 1985 be hearing aid compatible. Moreover, the new rules mandated that essential phones that are either coin operated or used for emergency use be retrofitted or replaced for the purpose of making them hearing aid compatible by January 1, 1985. B. Financing Assistive Technology All Federal agencies regulated by the Federal Information Resources Management Regulation (FIRMR) must ensure full access to Federal telecommunications within their agency and with those agencies with whom they do business. FIRMR requires the performance of determinations of need and requirements analyses to identify specific deficiencies to ensure that agency telecommunications facilities are fully accessible. Agencies must develop telecommunications accessibility specifications in solicitation documents where necessary. C. State Flexibility There is no state flexibility. D. Current Policy Issues The passage of ADA may increase the interest of federal agencies in carrying out their responsibility to accommodate to individuals with disabilities. Furthermore, the Final Rule for Title IV, Telecommunications, of the Americans With Disabilities Act, sets very specific standards for operating relay services, which will expand federal government response to calls. E. Facilitators The primary facilitator is that this P.L. 100-542 has a clear policy on access to Text Telephones (TTs) (formerly, Telecommunication Devices for the Deaf --TDDs -- including portable TTs). The General Services Administration assumes responsibility for publishing a directory of TTs and other devices used by Federal agencies with access numbers for TT's and other devices in Federal telephone directories. A standard logo has been adopted to indicate the presence of TT equipment in buildings. GSA, in conjunction with the FCC must promote research to reduce the costs and improve the capabilities of equipment for providing telecommunications accessibility for those with hearing and speech impairments. The regulations require the GSA to consider technological improvements in telecommunications accessibility for individuals with hearing and speech impairments. The Telecommunications for the Disabled Act of 1982, P.L. 97-410, for the first time, establish as national policy the right of persons with hearing impairments to have reasonable access to telephone services. F. Barriers To date, the FCC has done little to regulate telecommunication services for persons with disabilities as mandated by the Telecommunications Accessibility Enhancement and the Telecommunications for the Disabled Acts. Most federal and states efforts are focused on improving telecommunications access for individuals who are deaf and hearing impaired. Little has been done to ensure access for persons with speech, mobility and visual impairments and other disabilities. There continues to be a lack of awareness by federal agencies of the requirements of the law compounded by a lack of awareness by Federal agencies of where to seek solutions for accessibility problems. Much of the TT equipment still in use in Federal agencies is outdated and is TDD based. For example, there is the continual and widespread use of the Baudot format despite usage of ASCII as the preferred format for its speed, capabilities and is generally the standard for today's computer terminals using communications software. Staff training on equipment for federal agency staff has been inadequate and in many cases is nonexistent. As many as thirty-six states have de-tariffed specialized equipment; yet programs to provide such equipment at reduced rates have sprung up in only twenty-five (1989 statistic) states. The majority of individuals with disabilities are not covered by many of these programs. Additionally, most of these programs provide no specific funding for the research and development of new technologies in specialized customer equipment. G. Suggestions for Reform FEDERAL LEVEL: EXECUTIVE . Establish as a national priority a telecommunications policy that states all benefits of the technological revolution will be made available to all individuals with disabilities; . Improve enforcement by the Federal Communications Commission to increase compliance requirements with the two Acts; . Take initiatives to integrate the technology and accessibility needs of individuals with sensory impairments with all specialized equipment offerings; . Encourage states to take a more active role in ensuring telecommunications access; . Encourage ASCII as a standard because of its speed, but Baudot must still be made available because of the large embedded base of Baudot-only TDDs. Combination Baudot-ASCII TDDs can be the norm for institutional use where communication might be by either format, depending upon the deaf/speech-impaired user's need. LEGISLATIVE . Protect the interests of individuals with disabilities regarding equal and universal access to all telecommunications services, including enhanced offerings. Note: A separate report will be authored on telecommunication issues which will examine both hardware and software needs and provide recommendations that define access to network features as part of the evolving concept of universal access. . Amend telecommunication acts to include a definition and a right to communications accessibility as follows: (A) COMMUNICATIONS ACCESSIBILITY - means making all expressive and receptive communications accessible to persons with disabilities, and recognizes that every individual is (1) capable of communicating, and (2) knows best how to convey his or her thoughts to others; and (3) extends the same basic common courtesies of interacting with people with disabilities that are extended to others in receiving the goods, services, facilities, privileges, advantages, or accommodations offered by an entity providing such services by; -- Affording such individuals with the necessary opportunity, auxiliary aids and supports to effectively communicate with others. In determining what type of auxiliary aid is necessary, an entity shall give primary consideration to the requests of the individual with disabilities. -- Providing a communications environment which allows and encourages persons with motor, cognitive, hearing, speech or vision disabilities to effectively express themselves, understand others, and/or receive or send information and signals over public alert, public address and telecommunications systems and networks; -- Providing individuals with disabilities the assistive technology, interpretive services and personal assistance each needs to communicate effectively with others. -- Recognizing communications access as an issue that impacts individuals with a variety of disabilities other than hearing impairment and therefore to expand any definition of access with an added reference to "augmentative communication devices, computer modem access via the telephone lines, or other effective methods of making communication available to individuals with hearing or speech impairments" whenever TTDs/TTs are listed as a device. -- Including an explanation of communications accommodation as follows: (B) Accommodation by an entity means taking the time to communicate to a person with limited speech or who is using a manual communication board or assistive device; speaking and responding directly to such an individual rather than any third party unless directed otherwise (to the extent practical, this should apply to children and adults); not hanging up on or refusing telephone inquiries from such individuals or not forcing someone to write everything out on a note pad if he or she does not want to communicate in this fashion; or not inferring or implying that just because an individual has limited natural speech that he or she also has limited or impaired intelligence, hearing or judgment. -- Including examples of assistive devices that could be a reasonable accommodation to someone with cerebral palsy or other severe physical disabilities as follows; (C) The following lists examples of assistive technology devices that could be a reasonable accommodation to someone with cerebral palsy or other severe physical disability and includes but is not limited to: Remote control switches for use of computers and other office equipment; adaptive switches to turn on/off lights; telephone adaptations such as speaker phones, headsets, modems, TDDs or TTs; reachers; simple adaptions/fixtures for using office machines; magnifiers; adjustable furniture; adaptive computer software; page turners; lever door handles; access to a regular computer or typewriter to fill out forms; communication boards; telephones with audio and data transmission capability; telephones with wireless audio and data communication capabilities; augmentative communication devices; automated interpreters; computer and computer modem access in commonly used access forms such as ASCII; voice recognition systems; voice activated telephones; pointing and typing aids such as headpointers and mouthsticks; alternative switches to control lights and elevator doors and other access devices; electronic equipment which can be activated by sipping, puffing, movement of the eye, head, wrist, finger, or by remote or wireless means; alternative keyboards; keyguards; large button telephones; automatic dialing, and other effective and efficient methods of assuring reasonable accommodation and access to telecommunication networks, switching services and similar services that allow an individual with a disability to enjoy the same benefits and privileges of services that are made available to individuals without speech, mobility or manual dexterity impairments. . Require all new phones purchased (not just those designated as "essential") as hearing aid compatible; . Eliminate the present inconsistencies among states in the provision, cost, availability and repair of specialized telephone equipment; . Alleviate the costs of "communication aids" designed to substantially reduce or eliminate sensory disabilities (deafness, hearing impaired; blindness, visual impairment, inability to communicate vocally). STATE LEVEL: . Encourage enactment of legislation that protects the interests of individuals with disabilities regarding equal access to vital telecommunications services; . Encourage state utility commissions to require local carriers to provide Specialized Customer Premises Equipment (SCPE) and Value-Added Services (VAS) or "enhanced services" at affordable rates with a variety of finance options, e.g., tax credits or deductions, loan guaranty programs or general tariffs; SCPE is defined as any equipment needed by persons with disabilities to access a communication network without assistance, or needed by nondisabled for the purpose of communication with persons with hearing, speech, vision or mobility-related disabilities; VAS is defined as any offering over the telecommunications network which is more than a basic transmission service. The term enhanced service shall refer to services, offered over common carrier transmission facilities, which employ computer processing applications that act on the format, content, code, protocol or similar aspects of the subscriber's transmitted information; provide the subscriber additional, different or restructured information; or involve subscriber interaction with stored information. SECTION V. IMPLICATIONS FOR POLICY REFORM AND FEDERAL INITIATIVES All of the federal programs reviewed for this analysis include some features that facilitate access to financing for assistive technology. It is also true, however, that no program is without some barriers. Six kinds of barriers were found across the majority of programs: A. Lack Of Knowledge or Inadequate Knowledge Among Professionals; B. Difficulties in the Approval Process; C. Eligibility Limits; D. Limitations in Coverage; E. Limited Individual Choice; and F. Inadequate Funding. All of the barriers are compounded by the general lack of knowledge of assistive technology and its benefits among individuals with disabilities, family members, and the general public, including professionals in the service system. Each barrier is discussed more fully below. A summary table, Table 2 -- Financing of Assistive Technology: Barriers and Facilitators, appears on the next page. A. Inadequate Knowledge Among Professionals Lack of or inadequate knowledge among professionals was identified as a barrier in virtually every program, with the possible exception of the Technology-Related Assistance Act that includes an emphasis on knowledge promotion and dissemination. Even within this program, lack of knowledge exists among some of those who are attempting to implement the program at the state level. The problem of inadequate knowledge of appropriate technology solutions to respond to individualized needs is compounded by the rapidity with which the assistive technology field is growing. TABLE 2 Several programs have the potential to address this barrier through existing federal requirements for qualified personnel (e.g., IDEA, Medicaid) and legislative provisions for federally supported training and technical assistance (e.g., VR, IDEA). Some agencies have begun to use these provisions to increase knowledge of assistive technology, but there is a large gap between actual knowledge expansion and the potential for well-informed professionals. B. Difficulties in Approval Process Approval process barriers were found in nearly all programs. There is no consistent standard across federal programs that defines need for assistive technology services and devices. This barrier is further compounded by differences of interpretation by decisionmakers within individual programs. There are major differences between the access standards of educational, vocational and medical necessity. These barriers have been reduced in some programs through clear policy statements (in the legislation, by regulation, or by policy guidance) that clarify an individual with a disability's right to assistive technology or the appropriateness of financing assistive technology for eligible individuals. A prime example of such clarification is the letter from the Director of the Office of Special Education of the U.S. Department of Education clarifying that assistive technology must be provided to IDEA Part B children when needed to receive a free and appropriate public education and to benefit from special education. (See Appendix C for complete text of letter.) In 1990, further clarification was provided when the definitions of assistive technology devices and services were added to IDEA Part B. C. Eligibility Limits Eligibility limits to individuals were found across most programs, including criteria established in federal legislation, barriers permitted at the state level, and barriers occurring at the state or local level that seem to conflict with federal legislative provisions. Poor coordination compounds the problem of eligibility barriers, especially when people with disabilities move from one program to another as their age or situation changes. Some barriers are compounded also by the lack of knowledge of assistive technology applications to make people, especially those with severe disabilities, more able to fully participate in the community. Enhanced function as a result of assistive technology challenges the appropriateness of decisionmaking that says an individual is not capable of employment and thus ineligible for rehabilitation services. The interface between technology utilization and an eligibility standard defined by functional capabilities is not yet understood or fully accepted by many professionals. D. Limitations in Coverage Limitations in coverage of assistive technology are found to be a barrier in nearly all programs, including dollar caps. Such limitations include amount, scope, duration, location, and purpose, lack of coverage of customization, maintenance, repair, replacement, and other support services. Limits are frequently based primarily on cost containment, but cost containment as a barrier is often compounded by lack of knowledge of appropriate assistive technology solutions. Federal policy that transfers decisionmaking authority to the states is particularly significant in permitting states to place limits that act as barriers. For example, state Medicaid programs are routinely permitted to set limits through definitions of medical necessity and amount, scope and duration of services that become significant barriers to assistive technology access. E. Limited Individual Choice Emphasis on individual choice in and control of assistive technology access and funding is conspicuously lacking in most programs. Although some promising federal policy has been established in this area, meaningful participation by people with disabilities regarding the identification of appropriate technology and individualized program planning is a concept in its infancy. The viability of an individualized empowerment model is further diminished by the knowledge and awareness gap of potential technology users at the present time. F. Inadequate Federal Funding The problem of inadequate federal funding levels includes poor predictability and inefficient use of available funding as well as inadequate dollar amounts. Given the realities of federal budget concerns, the emphasis should be on re-targeting federal resources rather than on increased appropriations. Programs frequently mentioned in connection with re-targeting include Medicaid and Vocational Rehabilitation. Overall, however, the strongest consensus is that many of the programs that finance assistive technology are underfunded, including IDEA Parts B and H, the Centers for Independent Living, the Medicaid Community Supported Living Arrangements program, the Maternal and Child Health Block Grant/Services for Children with Special Health Care Needs, and the Older Americans Act. There is also strong anecdotal information that financing assistive technology is cost effective for both individuals and for programs. Assistive technology financing is seen to have the potential of reducing longterm costs through promotion of employment of individuals with disabilities, reduction of their dependency, prevention of secondary disability(ies), and their improved health status. There is a need to explore more fully research on the cost benefits/cost effectiveness of assistive technology to buttress support for expanded federal funding of assistive technology. 3. Suggestions for Reform All federal programs which currently finance assistive technology can be improved in their effectiveness. Specific opportunities for legislative and administrative reforms at the federal level, and ways to improve the use of federal programs at the state level, are described in the last section of each program profiled in Section IV, Profiles of Individual Programs. Concerns have been raised regarding a 'tinkering' approach to assistive technology financing reform, that is, an approach that fails to reform the entire system of supports to people with disabilities. Supporters of reform believe that the goals should reflect new ways of thinking about disability and should include the viewpoint of people who experience disability. Such an approach would build on the concepts underlying the Americans with Disabilities Act to assure that everyone with a disability is entitled to opportunities for maximum independence, productivity, and community participation, and that the public and private sectors share in the responsibility to support those opportunities. The goal is a truly consumer responsive system, including pooling funding for assistive technology from existing assistive technology financing resources, creation of a program of tax credits and subsidies for people with disabilities to lease and purchase assistive technology and other supports to maximize participation. Another goal is the development of assistive technology or community support agents who work with and on behalf of people with disabilities rather than the current service delivery system. It is important that the pros and cons of piecemeal reform are debated over the coming months as more information is uncovered on access to assistive technology. In the meantime, however, consideration of ways to improve the effectiveness of individual programs in financing assistive technology, and the implications for reform across federal programs is most important. Nine types of reform strategies emerged from this analysis, as described below: A. Have Clear Policy On Assistive Technology A clear policy statement on assistive technology is significant in access to financing, and should be included in all relevant programs. The policy should include recognition of the importance of assistive technology to individuals with disabilities and should also include clarification that assistive technology: . Supports the purposes and goals of the legislation or program; . Should (or at least can) be financed through the program, as appropriate to the individual; and . Should be considered as part of the determination of eligibility. Policy should include a comprehensive definition of assistive technology, preferably the definition used in the Technology-Related Assistance Act (see Appendix D). This should state that assistive technology services are included, as well as assistive technology devices. Efforts should be continued to include this definition in all relevant programs. Federal program policy should be explicit in all relevant provisions about the need for minimum competencies in the identification, assessment of need provision, training, and maintenance of assistive technology devices. Such competencies could be a requirement in personnel training and quality assurance and oversight efforts. B. Provide Systematic Support For Increased Knowledge Of Assistive Technology Federal programs and policies must do more to increase knowledge of assistive technology among professionals, vendors and other service providers, and those responsible for the education and training of professionals and other personnel, quality assurance staff, individuals with disabilities, family members, and advocates. Specifically, federal programs should include: . Stronger federal guidelines and requirements that include knowledge of assistive technology in personnel qualifications; . Increased federal support for assistive technology knowledge development and dissemination activities to all target audiences; . Increased federal support for identifying and refining assistive technology competencies for providers and potential users; and . A requirement for an identified lead expert on assistive technology funding policies and practices at the federal and state levels. C. Set Fewer Limits And Restrictions On The Assistive Technology That Can Be Financed Two actions are called for: (1) broader coverage in federal programs, and (2) a review of state flexibility regarding limits imposed by the states. Definitions of assistive technology in federal policy statements should be comprehensive enough to include both assistive technology devices and services, as well as supports such as customization, training, maintenance, repair, and replacement. The definition in the Technology-Related Assistance Act is recommended (in Appendix D). The concept of medical necessity should be broadened to include rehabilitation, secondary prevention, longterm gains, and health promotion in the holistic sense, including the promotion of independence, productivity, and community integration. Concepts of educational and vocational necessity should similarly be broadened. There should be a thorough review of state flexibility regarding medical necessity, amount, scope, duration, and related limits and their effects on people's access to assistive technology, including the long term cost effectiveness of such limits. D. Increase Access To Individual Programs Eligibility barriers that adversely affect access to the financing of assistive technology should be reduced or eliminated in federal programs. Examples of specific reforms include: . Increased SGA limits in the initial determination of SSI and SSDI eligibility level, at least to the level for people with blindness and to include annual cost-of-living increases; . Elimination of the 209(b) provision for Medicaid categorical needy eligibility determination by the states; . Reform of the central Vocational Rehabilitation eligibility determination concept to one that assumes that all individuals with disabilities are capable of employment if provided appropriate supports -- which includes assistive technology; . Review of Social Security disability benefit eligibility, with an eye toward reforms that would not require people to prove that they are unable to work in order to obtain benefits; and . Elimination or reduction of the 24 month waiting period for Medicare eligibility for SSDI beneficiaries. E. Increase Outreach Outreach, especially to those who have traditionally been underserved, needs to be increased in all the federal programs that finance assistive technology. Federal policies should require outreach at the state and local level as well as conducting outreach initiatives at the national level. Outreach programs should be monitored to see that they are producing measurable results. Such an outreach mandate could be made as an additional state plan requirement. F. Improve Coordination A continuing look at ways to minimize fragmentation, program eligibility gaps, and conflicting and duplicative administrative procedures is needed which is then translated into concrete changes in policy. Federal leadership on coordination should be strengthened, including: . Interagency collaboration initiatives at the federal level that can be used by the states to improve coordination, technology funding and service delivery; . Mandated requirements for coordination in funding and service delivery with documentation of effective outcomes in reporting requirements; . Evaluation of last payer requirements and the impact on individuals and agencies, including loss of time and resources; and . The use of a common definition of assistive technology (as found in the Technology-Related Assistance Act) and a common standard to justify need. G. Increase Focus On Individual Choice And Control The challenge for the entire disability field, especially the professional service providers, is to agree to ways to share control over information and decisions with potential technology users. The federal government can exert significant leadership in the promotion of individual choice and control in assistive technology and other supports to people with disabilities. For to be truly consumer-responsive, assistive technology financing programs need to: . Require a significant role for the individual with the disability (or the family, as appropriate) in all federal regulations and guidelines on the selection of assistive technology and the development of the individual program plan; . Ensure that individual choice and control is promoted systematically through the financing mechanism, the approval or authorization process, and program monitoring; . Cover customization and individual training; . Disseminate information on appropriate assistive technology solutions to individuals with disabilities and family members; . Support research on the assistive technology preferences of individuals with disabilities and on alternative decisionmaking models to the medical or professionally driven approach; (peer mentoring and individual choice); . Incorporate user satisfaction in quality assurance requirements and in the certification of assistive technology devices and services. At the systems level, the federal government should involve assistive technology users in policy development and program evaluation, and require similar involvement at the state and local levels. Programs also should consider vouchers or similar mechanisms that give choice and control to individuals, at least on a demonstration basis. H. Improve Federal Monitoring Federal monitoring of access and the right to assistive technology must be expanded and improved across virtually all financing programs. Although monitoring is an ongoing need, it is particularly critical at the present time when assistive technology provisions are relatively new and knowledge levels are undeveloped. Knowledge gaps identified through the monitoring process should be used to target federal initiatives in technical assistance and in knowledge development/dissemination activities. Access to assistive technology devices and services as an entitlement must be enforced. Data collection by federal guidelines must be established to provide state and local reporting of funding of technology-related assistance. Such reporting would be enhanced by agreement across federal agencies of a common taxonomy for different types of technology assistance (mobility, communication, aids for daily living, computer access and use). I. Target More Federal Resources To Assistive Technology There are many ways additional federal resources can be targeted to assistive technology to ensure that assistive technology is available as needed by individuals with disabilities. Clear reference to assistive technology in federal policy, especially when given visibility as a new requirement or initiative, can promote such targeting within federal, state, and local programs. The federal government can target discretionary grant funds that support training, research and technical assistance activities to assistive technology. It can require inclusion of assistive technology access as an outcome in grant priorities coordinated between federal agencies and departments. Personnel resources at the federal level also can be targeted to assistive technology, to ensure that an appropriate level of expertise is available in policy development and program monitoring. Where overall increases in federal funding are needed to promote access to assistive technology financing, federal decisionmakers should work with a coalition of assistive technology users, suppliers, and payers to see that any new or additional resources are targeted to where they will be most effective and result in improved financing. The knowledge base on the cost benefits/cost effectiveness of assistive technology should be expanded and publicized to support increased allocation of resources to assistive technology. Incentives should be developed to stimulate state and local funding of assistive technology devices and services. Many of the federal programs analyzed provide federal funding to states if matched by varying percentages of state dollars. States could be rewarded with an improved federal matching ratio if expanded assistive technology funding is made available. SECTION VI. SEVEN SUGGESTIONS FOR FURTHER RESEARCH Lack of awareness and knowledge of appropriate assistive technology solutions and funding options among individuals with disabilities, family members, and advocates as well as professionals and providers, continues to be identified as a major barrier to access. The suggestions that follow focus on policy research that recognizes the interrelationship between the knowledge gap and the current shortcomings of the federal policy maze. 1. Assistive Technology Applications: Significance In People's Lives More information is needed on how different types of assistive technology affect the lives of people with disabilities. The Office of Special Education has recently funded some of the first studies on the efficacy of assistive technology for children with disabilities. The need is to learn more about the impact of assistive technology on the education of children with disabilities in less restrictive environments. There has been limited applied research on the efficacy of assistive technology for adults with disabilities and individuals who are aging. The need is to learn more about the impact on health status, independence, productivity and prevention of secondary disabilities. Expanded knowledge about the impact of assistive technology in people's lives should favorable influence policymakers and funding decisionmakers at a state and local level who are faced with the difficulty choices of resource allocation and diverse unmet needs. Access to technology solutions must be understood as an educational, vocational and medical necessity rather than as an optimum approach or luxury. 2. Cost Benefits/Cost Effectiveness Of Assistive Technology Almost no research has been conducted to date on the cost benefits and cost effectiveness of assistive technology, other than the current research of this project and the few examples identified in the recent literature review (NCD, 1991a). Information is needed as background for decisions on financing policy and in particular on the relationship between assistive technology and the consumption of other services. The role of assistive technology should be reviewed in relation to: (a) income maintenance vs. employment; (b) hospitalization/nursing homes/institutional care vs. living at home in the community; (c) full-time home health and personal assistance services vs. intermittent or assistance that phases down; (d) short-term vs. long-term outcomes. Research on cost benefits and cost effectiveness must relate back to quality of life issues for individuals with disabilities and their satisfaction with the services being provided. Such research must not be limited solely to dollar issues. The National Council on Disability, working closely with the National Institute on Disability and Rehabilitation Research would be an appropriate partnership to conduct this type of research. 3. Individual Choice and Control Demonstrations should be conducted on voucher programs and other mechanisms that give maximum choice and control to individuals with disabilities, and to their families, as appropriate. One approach is to compare individual outcomes, including user satisfaction, in voucher vs. more traditional assistive technology financing programs. Research should be conducted also on the effectiveness of peer support and self-advocacy in increasing access to financing of assistive technology, and on strategies to focus on individual choice and control within existing individual program planning mechanisms. 4. Selection and Funding Approval For the potential technology user with disabilities, nothing is more difficult than the sense of powerlessness in a third party funding system that has unpredictable and inconsistent standards for assistive technology devices and services selection and funding approval. New research is needed to explore possible approaches to improve knowledgeable decisionmaking that is more predictable and consistent within individual and across federally funded programs. Research is needed also to identify and test the impact of competency-based personnel standards for providers, professionals across multiple disciplines and the third party funding decisionmakers. Finally, such an approach should be evaluated for consumer responsiveness and user satisfaction. 5. Policy Research On State Flexibility The examination of federal programs that finance assistive technology points up the need for research on the policies that govern the nature and degree of state flexibility and the difficulty of defining an appropriate level of flexibility. Perspectives on maximum state flexibility in financing assistive technology can be summarized as follows: A. PRO: . States can design systems to reflect their own priorities and needs. . States are in the best position to determine the proper configuration of services and the specific coordination mechanisms needed. . States have varying capabilities to fund assistive technology at the state and local level. . Flexibility permits states to participate despite differing infrastructures, mixes of public and private resources, and stages of evolution of their service system. . States should be able to continue to establish their own regulations for insurance, for amount/scope/duration (or equivalent) in joint federal/state programs, and for state-certified personnel (e.g., education, health care) based on the individual state's determination of what is appropriate, even if within general federal guidelines. . States are in the best position to monitor predominantly federally funded programs and enforce federal policy at the local level. B. CON: . National public policy on disability and access to assistive technology can be thwarted if states impose restrictive definitions that limit access or eligibility. . State eligibility limits (e.g., 209(b) states in the Medicaid program) can severely affect access for all but the most low income individuals with disabilities. . Few states have implemented effective outreach programs to underserved populations. Improved access increases a state's cost at a time of budget austerity . Although federal policy changes could do more to influence state personnel standards and training, state flexibility on personnel standards results in virtually no references to assistive technology. . State flexibility on administrative procedures, in combination with weak coordination requirements, has led to different, cumbersome, and conflicting procedures across states and across federal programs. . State flexibility on enforcement means that the level of monitoring and enforcement of federal policies varies dramatically across the states. . Access to assistive technology financing is unpredictable and inconsistent across the country despite federal funding and mandates. Policy research is needed on options to achieve a delicate balance between states' rights and individual rights to independence and productivity as they are currently defined in federal legislation. Access to appropriate technology solutions is a proven means to achieve the federal public policy goals of maximum independence and productivity. The imposition of federal mandates, and the appropriate federal role in monitoring and enforcement are critical issues for the effective design of a system that achieves consistent access to technology services and devices for individuals with disabilities of all ages. 6. Telecommunications Access The rapidly changing field of telecommunications raises important issues for persons with disabilities. New technologies offer opportunities for speech input and output and the availability in one's home of a vast array of information and other services. Functional limitations need not be a barrier to access. Additional research is needed to define what is needed to make the telecommunications network more accessible and affordable for a person with a disability. The National Council on Disability in concert with the Federal Communications Commission should take a lead role in such a research effort. Recent court rulings and pending legislation make it a critical time to define universal access for all Americans. 7. Research On Public Policy Goals And Financing Strategies Whenever advocates gather to discuss disability policy issues, there is likely to be a debate on radical vs. incremental reforms. There is considerable consensus on the ultimate goals of maximum independence, productivity, community inclusion, empowerment, and quality of life. There is consensus that current public policies are not working effectively in supporting people with disabilities to reach these goals. There is less consensus on the change strategies that will be most effective, in particular the value of piecemeal, program by program reforms vs. creation of a new set of strategies that replaces those currently available. Such strategies would replace concepts of medical necessity and employability, for example, with concepts that include supports for maximum independence and participation. Other strategies would give priority to financing mechanisms that include maximum involvement of people with disabilities and choice. On the other hand, a more radical reform could change disability public policy at the roots, that is, from a third party system with professional decisionmaking to a system driven by individuals with disabilities making their own decisions. In 1982, the Office of Technology Assessment raised many of the same implications for reform of federal policies and programs that have been addressed in this report. Systematic analysis of policy options must be brought to bear on these issues as a basis for action to avoid repetition of this exercise in the year 2002. APPENDICES ÀÀ APPENDIX A: INFORMATION SOURCES ÀÀ APPENDIX B: INDIVIDUALS PROVIDING INFORMATION/PERSPECTIVES ON PROGRAMS ÀÀ APPENDIX C: SAMPLE POLICY DOCUMENTS ÀÀ APPENDIX D: DEFINITIONS OF ASSISTIVE TECHNOLOGY ÀÀ APPENDIX E: A MEDICARE CARRIERS MANUAL -- ABBEY FOSTER MEDICARE SCREENING LIST ÀÀ MEDICARE REFERENCES APPENDIX A INFORMATION SOURCES APPENDIX B INDIVIDUALS PROVIDING INFORMATION/PERSPECTIVES ON PROGRAMS Patricia Beattie RESNA Technical Assistance Project, 1101 Connecticut Avenue, N.W. Suite 700 Washington, D.C. 20036. Betsy Brand Assistant Secretary, Office of Adult and Vocational Education 400 Maryland Avenue, S.W. Washington, D.C. 20202-7100. Betty Bristol Budget Services, Department of Veterans Affairs, 810 Vermont Avenue, N.W. Washington, D.C. 20420. Nell Carney Commissioner, Rehabilitation Service Administration Department of Education Switzer Building - Room 3030 330 C Street, S.W. Washington, D.C. 20202. Ron Castalde Chief, State Administration Branch, Office of Adult and Vocational Education, 400 Maryland Avenue, S.W. Washington, D.C. 20202-7100. Carol Cohen Technical Assistance Program Officer, National Institute on Disability and Rehabilitation Research, U.S. Department of Education, 400 Maryland Avenue, S.W. Washington, D.C. 20202-2645. Carol Crecy Director, Division of Community-Based Systems Implementation, Administration on Aging, 330 Independence Avenue, S.W. - Room 4745 Washington, D.C. 20201. Frederick Downs Director, Prosthetic and Sensory Aids Service, Department of Veterans Affairs 810 Vermont Avenue, N.W., 542 Techworld, Washington, D.C. 20420. Mary Jean Duckett Chief, Home and Community Based Waiver Branch, Division of Coverage Policy, Medicaid Bureau Health Care Financing Administration, Room 400 EHR 6325 Security Boulevard, Baltimore, Maryland 21207. Joseph Dulany Medicaid Coverage Policy Branch, Medicaid Bureau Health Care Financing Administration, Room 400, EHR 6325 Security Boulevard, Baltimore, Maryland 21207. Karen Franklin Director, RESNA Technical Assistance Project, 1101 Connecticut Avenue, N.W. Suite 700 Washington, D.C. 20036. Victor Galloway Director, Title VII - Parts B and C, Rehabilitation Service Administration Department of Education, Switzer Building - Room 3316, 330 C Street, S.W. Washington, D.C. 20202. Holly Allan Grayson Assistant Director, Association of MCH Programs, 2001 L Street, N. W. -308 Washington, D.C. 20036. Vincent Hlinovsky Paralyzed Veterans of America, 801 18th Street, N.W., Washington, D.C. 20006. Terrill Hyde Tax/Legislative Counsel, Department of the Treasury, 15th and Pennsylvania Avenues, N.W., Washington, D.C. 20220. Fred Isbister Director, Supported Employment Program, Rehabilitation Service Administration, Department of Education Switzer Building - Room 3028 330 C Street, S.W. Washington, D.C. 20202. Terese Klitenic Medicaid Coverage Policy Branch, Medicaid Bureau Health Care Financing Administration, Room 400, EHR 6325 Security Boulevard, Baltimore, Maryland 21207. Laurie Kohn Coordination and Review Section, Civil Rights Division, Department of Justice, Box 66118 Washington, D.C. 20035-6118. Celane McWhorter Director, Government Relations, The Association for Persons with Severe Handicaps (TASH), 1600 Prince Street, Alexandria, VA 22314. Michael Morgan Deputy Commissioner, Rehabilitation Service Administration, Department of Education, Switzer Building - Room 3030, 330 C Street, S.W. Washington, D.C. 20202. Larry Rickards Assistant Director, National Association of Area Agencies on Aging, 1112 16th Street, N.W. - Suite 100 Washington, D.C. 20036. Cindy Ruff Medicaid Coverage Policy Branch, Medicaid Bureau Health Care Financing Administration, Room 400 EHR, 6325 Security Boulevard, Baltimore, Maryland 21207. Judy Schrag Director, Office of Special Education Programs, U.S. Department of Education, Switzer Building - Room 3086, 330 C Street, S.W. Washington, D.C. 20202. John Schwab Chief, Bureau of Habilitation Services, Maternal and Child Health Bureau, Parklawn Building - Room 11A-30 5600 Fishers Lane, Rockville, Maryland 20857. Cynthia Sherk Senior Program Analyst for ICF/MR HSQB/OSC, Health Care Financing Administration, 2D2 Meadows East, 6325 Security Boulevard, Baltimore, Maryland 21207. Eugene Steuerle The Urban Institute, 2100 M Street, N.W., Washington, D.C. 20037. Dora Timeouri Director, Title VII - Part A, Rehabilitation Service Administration, Department of Education, Switzer Building, 330 C Street, S.W. Washington, D.C. 20202. Margaret Truntich Chief, Regulation Branch, General Services Administration, Washginton, D.C. 20405. Robert Wardwell Director, Division of Coverage Policy, Medicaid Coverage Policy Branch, Medicaid Bureau Health Care Financing Administration, Room 400 EHR 6325 Security Boulevard Baltimore, Maryland 21207 Bill Wolf Deputy Director, Office of Special Education Programs, U.S. Department of Education Switzer Building - Room 3086 330 C Street, S.W. Washington, D.C. 20202 APPENDIX C SAMPLE POLICY DOCUMENTS APPENDIX D 1. DEFINITION OF ASSISTIVE TECHNOLOGY AS FOUND IN THE TECHNOLOGY RELATED ASSISTANCE ACT OF 1988 The comprehensive definition of assistive technology found in P.L. 100-407 and referred to throughout the review and analysis, is as follows: Assistive technology device: Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. Assistive technology service: any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device. Such term includes (A) the evaluation of the needs of an individual with a disability, including a functional evaluation of the individual in the individual's customary environment; (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by individuals with disabilities; (C) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices; (D) coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; (E) training or technical assistance for an individual with disabilities, or, where appropriate, the family of an individual with disabilities; and (F) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of individuals with disabilities. (P.L. 100-407). 2. DEFINITION OF ASSISTIVE TECHNOLOGY AS FOUND IN THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT Assistive technology device is defined as any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. Assistive technology services is defined as any services that directly assists an individual with a disability in the selection, acquisition or use of an assistive technology services. Such term includes: (a) the evaluation of needs...including a functional evaluation ... in the individual's customary environment; (b) purchasing, leasing or otherwise providing for the acquisition of assistive technology devices...; (c) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices; (d) coordinating with other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; (e) training or technical assistance for an individual with disabilities, or, where, appropriate, [his/her] family...; (f) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other(s) who provide services to, employ, or are otherwise. substantially involve in the major life functions of individuals with disabilities. [20 U.S.C. Sections 1401 (a) (25); and (a) (26)]. APPENDIX E: A MEDICARE CARRIERS MANUAL -- ABBEY FOSTER MEDICARE SCREENING LIST References Health Care Financing Administration, DME Reference List, Medicare and Medicaid Guide, Commerce Clearing House, Chicago, Illinois, Section 27,221, pp. 9301-9308. Health Care Financing Administration, Medicare Part B Coverage, Section 3144, Medicare and Medicaid Guide, Commerce Clearing House, Chicago, Illinois, pp. 1122-1140.; (this can also be found in Section 2100.1B1 of the Medicare Carriers Manual.) Health Care Financing Administration, Medicare Carriers Manual (Section 2100.1(B)(2), Office of Inspector General, Medicare Coverage of Power-Operated Vehicles, Office of Analysis and Inspections, Washington, D.C., OAI-02-88-01110, July 1989). Office of National Health Statistics, Health Care Financing Administration, "National Health Expenditures, 1990", Health Care Financing Review, Fall 1991, Vol. 13, No. 1, Table 12, pp. 51-52. Committee on Ways and Means, U.S. House of Representatives, Overview of Entitlement Programs: 1991 Green Book, U.S. Government Printing Office, Washington, D.C., p. 168-169. U.S. General Accounting Office, Durable Medical Equipment: Specific HCFA Criteria and Standard Forms Could Reduce Medicare Payments, GAO/HRD-92-64, Washington, D.C., June 1992. Section Three: Selected States Perspective and Analysis of Public Program Funding NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR FOR INDIVIDUALS WITH DISABILITIES Selected States Perspective and Analysis of Public Program Funding Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street, N.W., Suite 1112 Washington, D.C. 20005 March 18, 1992 The purpose of this report is to describe the effectiveness of various funding sources to pay for different types of assistive technology devices and services for children, adults and seniors with disabilities in nine states. The states are Arkansan, Illinois, Maine, Maryland, Minnesota, New Mexico, North Carolina, Oregon, and Utah. Effectiveness refers to the types of assistive technology devices and services which are covered, the range of age groups and disabilities who receive the assistive technology, and the outreach capacity of the funding sources to reach persons with disabilities including minorities and persons in rural areas. The report consists of six sections: Section I - Summary Section II - Effectiveness of Public Funding in Financing Assistive Technology Section III - Public Funding for Assistive Technology Devices and Support Services Section IV - Funding of Assistive Technology Support Functions Section V - Facilitators to the Financing of Assistive Technology Section VI - Barriers to the Financing of Assistive Technology Summary Early Periodic Screening, Diagnosis and Treatment (EPSDT) For children with disabilities, both preschool and school-age, the states consistently ranked EPSDT as a program which is effective in the financing of assistive technology. Although EPSDT is not a likely funding source in terms of a wide variety of assistive technology, ESPDT is likely to cover of variety of support functions, including: assessment of need; training of consumer; customization; maintenance; repair and replacement. No consensus was found in the area of facilitators for the program; however, all states agree that cumbersome application and an unpredictable prior authorization process are significant barriers to the effective financing of assistive technology through this program. Several states emphasized that assistive technology purchased through EPSDT must demonstrate medical necessity of the device and service. Medicaid For working-age individuals with disabilities and seniors, the states consistently ranked Medicaid as an effective source in the financing of assistive technology. However, for preschool and school-age children with disabilities, notable differences exist between the states. Half the Medicaid programs were described as effective while the others were ranked ineffective. No single category of assistive technology is likely to be funded by Medicaid in all states. Here again, states emphasized that anything purchased through Medicaid must be justified by "medical necessity." States consistently indicated that Medicaid is required or likely to cover support services including: assessment of need; customization; maintenance; repair; and, replacement. No single facilitator is consistently found in all states. On the contrary, several barriers were listed in every state Medicaid program including: restrictive definition of medical necessity; prohibitive or no coverage for training, customization, maintenance, etc.; cumbersome application process for individuals; unpredictable prior authorization process; and, burdensome reimbursement process. Medicare Part B For working age individuals with disabilities and seniors, all states agree that the Medicare Part B program is generally effective as a funding source for assistive technology. No one category of assistive technology is likely to be funded by Medicare in all states. Medicare does not consistently pay for any support functions. The availability of an appeals process is the only common facilitator found in all states. A majority of states listed restrictive definition of "medical necessity" and, prohibitive or no coverage for training, customization, maintenance, and other support services as barriers to the effective financing of assistive technology through Medicare Part B. Maternal and Child Health Services For preschool and school-age children with disabilities, MCH programs for children with special needs are considered on average an effective source of financing assistive technology. No single category of assistive technology is required or likely to be paid for consistently in all states. However, states agree that MCH state programs will cover key support services including: assessment of need; training of consumer; customization; repair; and replacement. No common facilitators were found throughout all state programs. All states indicate that restrictive eligibility requirements is a common barrier to the programs effective financing of assistive technology. Special Education For school-age children with disabilities, states were unanimous in finding special education programs as an effective source of financing of assistive technology. However, Part H consistently ranked among the lowest in all states as an ineffective source of funding for assistive technology for pre-school children with disabilities. States unanimously agree that special education programs are required or likely to pay for two categories of assistive technology: computer access and use; and, vision and reading technology. A majority of states agree that special education programs will pay for two additional categories of assistive technology--hearing and speech. For coverage of support services, states agree that Special Education is required or is likely to cover: assessment of need; training of consumer; maintenance; and, replacement. All states indicated the existence of several facilitators in their special education programs: broad coverage of individuals; coverage of support services; individualized plan required; availability of an appeals process; and, coordination among funding sources. However, a majority of states listed common barriers including: limits on other uses of assistive technology; incentives for lowest cost; lack of informed professionals; limited outreach; and, limited funding. Vocational Rehabilitation For working-age individuals with disabilities, states agree, VR Basic States Grants and Independent Living Services are an effective source of financing assistive technology. In addition, VR's Independent Living Part A is, on average, the most effective source of financing assistive technology for seniors with disabilities. With the exception of two categories of assistive technology--environmental access and recreation--states indicated that Vocational Rehabilitation programs are required or likely to pay for all other categories of assistive technology. States agree that VR is required or likely to pay for the different support services which are necessary for the effective use of assistive technology. All states indicated the following facilitators in their VR programs: coverage of a wide range of assistive technology and coverage of support services; individualized plan required; availability of appeals process; and coordination among funding sources. A majority of states listed the following barriers: restrictive eligibility requirements; and limited funding in the program. VR Supported Employment For working-age individuals with disabilities, supported employment as a funding source for assistive technology is somewhat effective. No common facilitator is found throughout all the state programs; however, the majority of states listed seven or more facilitators. Common barriers to effective financing were noted by a majority of states including: restricted eligibility requirements and limited funding. No single category of assistive technology is likely or required to be funded by all states. Two support functions are likely to be funded--assessment of need and training of consumer. Vocational Education States ranked Vocational Education as somewhat effective in the financing of assistive technology for school-age children with disabilities. No single category of assistive technology or any support service is consistently paid for by Vocational Education in every state. The majority of states had no information regarding the facilitators or barrier to the effective financing of assistive technology through this program. Job Training Partnership Act (JTPA) States unanimously agreed that this program is not an effective source of financing assistive technology for working-age individuals with disabilities. No single category of assistive technology nor any support service is consistently paid for by JTPA in every state. The majority of states had no information regarding the facilitators or barriers to effective financing of assistive technology through this program. Veterans Administration (VA) States consider the VA as somewhat effective for financing assistive technology for working-age individuals with disabilities and generally effective for elderly individuals with disabilities. The VA does not consistently pay for any one category of assistive technology devices or support services. RESULTS OF THE NINE STATE STATUS REPORT Section II Effectiveness of Public Funding in Financing Assistive Technology Section II analyzed the effectiveness of different funding sources to pay for assistive technology. Public/private funding sources were ranked from those considered most effective by the states in the financing of assistive technology to those funding sources considered ineffective. An analysis was conducted on four age groups of individuals with disabilities including: preschool; school-age; working-age; and, elderly individuals. The following scale was used to rate the effectiveness of each funding stream: NA - Not applicable/does not exist 0 - Don't know 1 - Not effective 2 - Somewhat effective (e.g. for 1-3 disability groups, or 1-3 types of services/devices) 3 - Generally effective (e.g. for 4 or more disability groups, or 4 or more types of services/devices) 4 - Most effective (e.g. for the full range of disabilities, and types of services/devices Summary For preschool children with disabilities, the Medicaid programs in the states of Maine and Minnesota were ranked as the most effective source of financing assistive technology followed by EPSDT and Title V of the Maternal and Child Health Block Grant. With the exception of Maine, Minnesota, and the Medicaid waiver program, all other state Medicaid programs were ranked among the lowest. Part H and Head Start, two programs which are specifically targeted to this age group, also ranked among the lowest. Sixty-seven percent of programs for this age group fell below 3 indicating that the programs are somewhat effective or ineffective in the financing of assistive technology for preschool children with disabilities. For school-age children with disabilities, Minnesota's Medicaid program ranked the highest followed by the Technology Related Assistance grants and EPSDT. Special Education ranked fourth. Sixty-one percent of programs fell below 3 indicating that the majority of programs for this age group are somewhat effective or ineffective as a funding source for assistive technology. For working-age individuals with disabilities, Minnesota Medicaid; Vocational Rehabilitation (VR) State Grants; and, VR-Independent Living; ranked the highest. Medicare Part B ranked fifth. Here again, sixty percent of programs for this age group fell below 3. Vocational Rehabilitation (Independent Living Part A); and, the Veterans Administration were listed as the most effective for elderly individuals with disabilities. Eighty-seven percent of programs available to elderly individuals with disabilities fell below 3 indicating that a large majority of the programs available to this age group are somewhat effective or ineffective in the financing of assistive technology. The following list of public/private funding streams are ranked from most effective to least effective in the financing of assistive technology. Average scores of effectiveness follow each program. IIa. Preschool Children with Disabilities 1. Medicaid TEFRA (ME) 4 2. Medicaid CADI (MN) 4 3. Medicaid CAD/MR (NC) 4 4. Medicaid CAC (MN) 4 5. EPSDT 3.2 6. MCH 3.2 7. Medicaid Waiver 3 8. Tech Act 3 9. Service Clubs 2.75 10. VR - Independent Living 2.75 11. State Services for the Blind 2.66 12. Special Education 2.4 13. 89-313 2.4 14. State Services for the Deaf 2.28 15. Equipment Loan Programs 2.27 16. State Funds for Technology 2.25 17. Private Volunteer Organizations 2.25 18. Medicaid-Medically Fragile (NM) 2 19. Medicaid-Developmentally Disabled (NM) 2 20. Head Start 1.75 21. Monetary Loan Program 1.5 22. Part H 1.4 23. Medicaid/Physically Handicapped (NM) 1 24. Medicaid/Case Management (ME) 1 IIb. School-age Children with Disabilities 1. Medicaid CAC, CADI (MN) 4 2. Tech Act 3.8 3. EPSDT 3.3 4. P.L. 94-142 3.28 5. Medicaid Waiver-TEFRA 3.2 6. VR - Title VII - Independent Living 3.14 7. Medicaid MR/MC (MN)3 8. Medicaid CAP/C (NC) 3 9. Medicaid CAP/MR (NC)3 10. State Funds for Technology 3 11. MCH 2.85 12. 89-313 2.83 13. Service Clubs 2.7 14. State Services for the Blind 2.66 15. Vocational Education 2.65 16. VR Title I State Grants 2.6 17. Equipment Loan Funds 2.54 18. Medicaid - Developmentally Disabled (NM) 2.5 19. Medicaid ICF/MR 2.3 20. State Services for the Deaf 2.28 21. Medicaid - Medically Fragile (NM) 2 22. Head Start 2 23. Private organizations 2 24. JTPA 1.83 25. Monetary Loan Program 1.8 26. VR Title VI-C 1.8 IIc. Working-age Individuals with Disabilities 1. Medicaid- CAD/CADI (MN) 4 2. VR Title I Basic State Grant 3.7 3. VR Independent Living 3.42 4. Medicaid 3.16 5. Medicare Part B 3.16 6. Medicaid BMR Waiver (ME) 3 7. Medicaid Phy. Handicapped/Elderly (NM) 3 8. Medicaid CAP/DA (NC) 3 9. Medicaid CAP/MR (NC) 3 10. ICF/MR 3 11. Veterans Administration 2.83 12. Medicaid Waiver 2.75 13. Tech Act 2.71 14. State Services for the Blind 2.66 14. State Services for the Deaf 2.66 16. Equipment loan Program 2.6 17. Vocational Education 2.4 18. Service Clubs 2.33 19. Private Volunteer Organizations 2.27 20. State Funds for Technology 2.25 21. Supported Employment 2.16 22. Medicaid - Personal Care Services (ME) 2 23. Title XX 1.8 24. PWI 1.66 25. JTPA 1.66 IId. Elderly Individuals with Disabilities 1. VR Independent Living Part A 3.28 2. Veterans Administration 3.2 3. Medicaid 3.166 4. Medicare 2.85 5. Equipment Loan Fund 2.77 6. State Funds for Technology 2.6 7. Tech Act 2.5 8. State Services for the Deaf 2.5 9. State Services for the Blind 2.33 10. Private Volunteer organizations 2.30 11. Nursing Homes - SNI 2.28 12. Nursing Homes 2.25 13. Nursing Homes - ICI 2 14. VR Title I 2 15. VR Title VII-B Centers 2 16. VR Title VII-C IL for Older Blind 2 17. Community Development Block Grant 2 18. Service Clubs 1.83 19. Older Americans Act 1.66 20. Monetary Loan Programs 1.66 21. Monetary Loan Program 1.66 22. Title XX 1.5 23. VR Title VII-C Supported Employment 1.2 Section III Public Funding for Assistive Technology Devices and Support Services Section III examines the types or assistive technology and the types of support functions for assistive technology most likely to be funded by different public funding sources. Thirty-eight types of assistive technology were identified in nine categories. States were asked to describe how the funding source is likely to cover different types of assistive technology. Each funding source is followed by the percentage of state responses received. States were asked to use the following scale for each funding source. States were asked to use the following scale: R= Required L= Likely U= Unlikely X= Cannot ?= Don't Know Summary Listed below are the nine categories of assistive technology followed by the public funding programs that are "required" or "likely" to pay for them based on receiving 70% or more of state responses. Each public funding stream is followed by the percentage of state responses received. Activities of Daily Living Vocational Rehabilitation (88%) Independent Living (98%) Environmental Access -0- Control and Manipulation Vocational Rehabilitation (72%) Mobility Vocational Rehabilitation (89%) Independent Living (72%) Computer Access and Use Special Education (100%) Vocational Rehab. (100%) State Operated Programs (71%) State Serv. for the Blind (92%) Hearing Special Education (74%) State Operated Programs (71)% Vocational Rehabilitation (96%) Independent Living (97%) Vision and Reading Special Education (100%) State Operated Programs (84%) Vocational Rehabilitation (86%) Independent Living (71%) State Serv. for the Blind (100%) Speech EPSDT (79%) Special Education (82%) Vocational Rehabilitation (91%) Independent Living (100%) Recreation -0- Section IV Funding of Assistive Technology Support Services This section examines the coverage of different support functions which are necessary for the effective use of assistive technology. These include: (1) assessment of need; (2) training of consumer; (3) customization; (4) maintenance; (5) repair; and, (6) replacement. The following support services are followed by the public funding sources that are "required" or are "likely" to pay for the service based on having received over 70% of the state responses. I. Assessment of Need EPSDT (100%) Medicaid (72%) MCH (100%) Special Education (100%) State Operated Programs (86%) Medicare (72%) Vocational Rehab. (100%) Supported Employment (72%) Independent Living (86%) State Serv. for the Blind (86%) Vocational Education (83%) II. Training of Consumer EPSDT (100%) MCH (71%) Special Education (100%) State Operated Programs (86%) Vocational Rehabilitation (85%) Supported Employment (71%) Independent Living (86%) State Serv. for the Blind (71%) III. Customization EPSDT (100%) Medicaid (86%) MCH (85%) State Operated Programs (71%) Medicare (85%) Vocational Rehab. (100%) Independent Living (86%) IV. Maintenance EPSDT (100%) Medicaid (86%) Special Education (85%) Vocational Rehab. (100%) Independent Living (87%) V. Repair EPSDT (100%) Medicaid (100%) MCH (86%) Medicare (85%) Vocational Rehab. (100%) Independent Living (71%) State Serv. for the Blind (71%) VI. Replacement EPSDT (86%) Medicaid ((86%) MCH (85%) Special Education (71%) Vocational Rehabilitation (85%) Independent Living ((85%) State Serv. for the Blind (85%) Section V and VI Facilitators and Barriers to the Financing of Assistive Technology Section V and VI provide information on specific state laws, policies and practices which increase the effectiveness (facilitators) or reduce the effectiveness (barriers) of different funding sources for assistive technology. Summary EPSDT No single facilitator is consistently found in all states. One state responded "no facilitator exists". The majority of states cited two or fewer facilitators. The following barriers in the EPSDT program are found in every state: cumbersome application process; and, unpredictable prior authorization process. A majority of states listed six or more barriers. Medicaid No single facilitator is consistently found in all states. One state indicated "no facilitator exists" while another state listed only one. The following barriers are found in all states: restrictive definition of "medical necessity"; prohibitive/no coverage for training, customization, maintenance, etc.; cumbersome application process for individuals; unpredictable prior authorization process for specific AT; burdensome reimbursement process for vendor or individual. A majority of states listed 8 or more barriers with two states listing 11 barriers to the financing of assistive technology. Medicare Part B All states listed the availability of an appeals process making it the only common facilitator. The greatest number of facilitators were found in Utah and North Carolina while the majority of states listed four or fewer facilitators. A majority of states listed restrictive definition of "medical necessity"; and, prohibitive/no coverage for training, customization, maintenance, etc. One state listed Medicare as uncooperative in pursuit of information. Maternal and Child Health No single facilitator is consistently found in all states. The majority of states listed four or fewer facilitators. All states indicated that restrictive eligibility requirements is a barrier to the programs financing of assistive technology. The majority of programs listed five or more barriers. Special Education All states listed the following facilitators: broad coverage of individuals; coverage of support services; individualized plan required; availability of appeals process; and, coordination among funding sources promoted. A majority of states listed the following barriers: other limits on approved uses such as purpose/location of AT; incentives for lowest cost AT; lack of informed professionals such as case managers or service providers; limited outreach to under-represented groups; and, limited funding in the program that could pay for AT. Vocatinal Rehabilitation State Grants All states listed six or more facilitators, with two states listing 12 or more. The following facilitators were found in all state VR programs: coverage of a wide range of assistive technology; coverage of support services; individualized plan required; availability of appeals process; and, coordination among funding sources. A majority of states listed the following barriers: other limits on approved uses such as purpose/location of AT; lack of informed professionals such as case managers or service providers; and limited funding in the program that could pay for AT. Vocational Rehabilitation Supported Employment No single facilitator is consistently found in all states; however, the majority of states listed seven or more facilitators. A majority of states listed the following barriers: restrictive eligibility requirements; and limited funding in the program that could pay for AT. Vocational Rehabilitation Independent Living The following facilitators were found consistently in all states: broad coverage of individuals; coverage of a wide range of AT; coverage of support services; individualized plan required; individual choice supported; availability of appeals process; coordination among funding sources promoted. All states indicated limited funding in the program that could pay for AT as a barrier to the financing of assistive technology. Vocational Education The majority of states had no information regarding the facilitators and barriers to financing assistive technology through this program. JTPA No single facilitator is found consistently in all states. The majority of states indicated no facilitators. Of the two states that responded, both indicated that limited funding in the program that could pay for AT, and lack of informed personnel were barriers to financing through this program. Veterans Administration There are no facilitators found consistently in all states. All states indicated that restrictive eligibility requirements is a barrier to the financing of assistive technology through this program. Section V Facilitators to the Financing of Assistive Technology (1) clear policy statement on access to AT; (2) broad coverage of individuals in terms of age, income, and disability; (3) coverage of a wide range of AT; (4) coverage of support services for AT including training, customization, maintenance, repair, and replacement; (5) individualized plan required; (6) individual choice supported; (7) availability of appeals process; (8) coordination among funding sources promoted; (9) requirements for outreach strategies to promote awareness of the advantages of AT among potential consumers, especially under-represented groups such as low-income persons, minorities, and persons living in rural areas; (10) provision for qualified support personnel through funding availability;, certification standards for providers, and inservice training, etc.; (11) performance standards for assistive technology to qualify for funding; (12) sufficient level of funding in terms of adequacy and predictability; (13) appropriate level of state flexibility. EPSDT No one facilitator is consistent in all states. One state responded, "no facilitator exist." Two state programs listed broad coverage of individuals. The majority of states listed 2 or fewer facilitators. Medicaid One state listed no facilitators exist. One state listed only one facilitator exists. The majority of states listed the following facilitators: o broad coverage of individuals; o individual plan required; o availability of appeals process; Medicare Part B Two states listed two of fewer facilitators. Two states listed over nine facilitators. All states listed as a facilitator: the availability of an appeals process. In addition, a majority of states listed the following facilitators: o coverage for support services for AT; o individualized plan required; MCH Programs for Children with Special Health Care Needs One state listed no facilitators. The majority of states listed the following facilitators: o individualized plan required; o coordination among funding sources promoted; Special Education All states listed the following facilitators: o broad coverage of individuals; o coverage of support services; o individualized plan required; o availability of appeals process; o coordination among funding sources promoted; In addition, a majority of states listed the following facilitators: o clear policy statement on AT; o coverage of a wide range of AT; o individual choice supported; o provision for qualified support personnel; o appropriate level of state flexibility. Vocational Rehabilitation (State Grants) All states listed six or more facilitators. Two states listed 12 or more facilitators. All states listed the following facilitators: o coverage of a wide range of AT; o coverage of support services; o individualized plan required; o availability of appeals process; o coordination among funding sources promoted. A majority of states listed the following as facilitators. o broad coverage of individuals; o individual choice supported; o provision for qualified support personnel; Vocational Rehabilitation (Supported Employment) The majority of states listed seven or more facilitators. One state responded, "does not apply". The majority of states listed the following facilitators: o broad coverage of individuals; o coverage of a wide range of AT; o coverage of support services; o individualized plan required; o individual choice supported; o availability of appeals process; o coordination among funding sources promoted; o provision for qualified support personnel; o sufficient level of funding in terms of adequacy and predictability; o appropriate level of state flexibility. Vocational Rehabilitation (Independent Living) All states listed six or more facilitators. The majority of states listed nine or more facilitators. All states listed the following facilitators: o broad coverage of individuals; o coverage of a wide range of AT; o coverage of support services; o individualized plan required; o individual choice supported; o availability of appeals process; o coordination among funding sources promoted; In addition, a majority of states listed as a facilitator, clear policy statement on access to AT. Vocational Rehabilitation A majority of states indicated no facilitators exist. Two states listed the following facilitators: o broad coverage of individuals; o individualized plan required; o coordination among funding sources promoted; o provision for qualified support personnel; JTPA A majority of states indicated no facilitators exist. Two states listed as a facilitator: o coordination among funding sources. Veterans Administration The majority of states listed the following facilitators: o coverage of a wide range of AT; o coverage of support services; o performance standards for AT to qualify for funding; o appropriate level of state flexibility. Section VI Barriers to Financing Assistive Technology (1) restrictive eligibility requirements (e.g. age, income, disability, level of severity) pre-existing condition; (2) restrictive definition of "medical necessity"; (3) other limits on approved uses such as purpose/location of AT; (4) prohibitive or missing coverage for training, customization, maintenance, repair, or replacement of AT; (5) incentives for lowest cost AT; (6) inappropriate caps on amount of coverage (dollar limits or service limits); (7) last payor requirement; (8) cumbersome application process for individual (e.g. long time delays in processing application, arbitrary time limits imposed for submitting new documentation, and unnecessary administrative complexity often duplicative of other applications which the consumer has already made); (9) unpredictable prior authorization process for specific AT; (10) burdensome reimbursement process for vendor or individual; (11) lack of informed professionals such as case managers or service providers, etc. who are knowledgeable about potential advantages of AT for persons with disabilities; (12) limited outreach to under-represented groups such as low income persons, minorities, or persons in rural areas; (13) limited funding in the program that could pay for AT. EPSDT A majority of states listed six or more barriers. All states listed the following barriers: o cumbersome application process for individuals; o unpredictable prior authorization process for specific AT; In addition, a majority of states listed the following barriers: o restrictive definition of "medical necessity"; o burdensome reimbursement process for vendor or individual; o lack of informed professionals knowledgeable about AT; o limited outreach to under-represented groups; Medicaid The majority of states listed 8 or more barriers with two states listing 11 barriers to the financing of assistive technology. All states listed the following barriers: o restrictive definition of "medical necessity"; o prohibitive/no coverage for training, customization, maintenance, etc.; o cumbersome application process for individuals; o unpredictable prior authorization process for specific AT; o burdensome reimbursement process for vendor or individual; A majority of states listed the following barriers: o inappropriate caps on amount of coverage; o lack of informed professionals such as case managers or service providers; Medicare Part B A majority of states listed four or more barriers to the financing of assistive technology. One state indicated that the regional Medicare office was uncooperative in seeking information about the program. A majority of states listed the following barriers: o restrictive definition of "medical necessity"; o prohibitive/no coverage for training, customization, maintenance, etc.; MCH Programs for Children with Special Health Care Needs (Title V) The majority of programs listed 5 or more barriers. All states responding listed the following barrier: o restrictive eligibility requirements; A majority of states listed the following barriers: o lack of informed professionals such as case managers or service providers; o limited funding in the program that could pay for AT. Special Education A majority of states listed five or more barriers with one state listing 10. A majority of states listed the following barriers: o other limits on approved uses such as purpose/location of AT; o incentives for lowest cost AT; o lack of informed professionals such as case managers or service providers; o limited outreach to under-represented groups; o limited funding in the program that could pay for AT. Vocational Rehabilitation (Special Grants) All states listed three or more barriers. The majority of states listed the following barriers: o other limits on approved uses such as purpose/location of AT; o lack of informed professionals such as case managers or service providers; o limited funding in the program that could pay for AT. Vocatinal Rehabilitation (Supported Employment) The majority of states listed three or more barriers. One state responded, "does not apply". A majority of states listed the following barriers: o restrictive eligibility requirements; o limited funding in the program that could pay for AT. Vocational Rehabilitation (Independent Living) All states listed three or more barriers. All states indicated limited funding in the program that could pay for AT as a barrier. A majority of states listed the following barrier: o lack of informed professionals such as case managers or service providers; Vocational Education The majority of states had no information regarding the financing of assistive technology through this programs. Of the two states that responded, the following barrier was indicated in both responses: o limited funding in the program that could pay for AT. JTPA The majority of states had no information regarding the financing of assistive technology through this programs. Of the two states that responded, two barriers were indicated in both responses: o limited funding in the program that could pay for AT; o lack of informed personnel. Veterans Administration All states responding indicated that restrictive eligibility requirements was a barrier to the financing of assistive technology for this program. APPENDIX A Summary Tables Percentages of Assistive Technology Devices and Related Support Services Financed Through Various Public Programs Section Four: The Role of Private Health Insurance Coverage of Assistive Technology NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES The Role of Private Health Insurance Coverage of Assistive Technology Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street, N.W., Suite 1112 Washington, D.C. 20005 August 24, 1992 Private Insurance and Assistive Technology Introduction Private health insurance is primarily funded through voluntary annual contracts, mostly with employers, to cover the health related needs of employees and their dependents. This fact, and the historical origins of private insurance having been developed by hospitals to finance the care they can provide, has resulted in an acute care orientation to health insurance in the U.S. (Access to Health Care, December 1988-March 1989). This acute care orientation, which has been institutionalized through the role of physicians as the gatekeepers in the health care system, has tended to slight prevention and rehabilitation, even though almost half of the U.S. population has chronic health conditions. (Word from Washington, May/June 1991). One consequence of the acute care orientation of health insurance is the restrictive funding for assistive technology. Removing obstacles to the financing of assistive technology is part of the larger challenge of redefining the concept of health from the absence of disease and impairment to the management of chronic conditions to maximize functional capacity to participate as fully as possible in society. Findings: 1.Assistive technology is mostly paid for out-of-pocket. According to the Health Care Financing Administration, 67.3% of the total health care expenditures for durable medical equipment and vision products were paid by out-of-pocket payments in 1990 (Health Care Financing Review, Fall 1991). Private health insurance paid for only 10.4% of expenditures for durable medical equipment, while public funds paid for 22.3%. (This estimate of the contribution of public sources for durable medical equipment is actually understated because all Medicaid payments for durable medical equipment were included within other categories.) Data from the 1987 National Medical Expenditure Survey (NMES) also provided similar information. According to a recent analysis of NMES, 66.2 percent of DME expenditures came from out-of-pocket payments, 13.8 percent came from Medicare, 3.9 percent came from Medicaid, 10.7 percent came from private insurance, and 5.4 percent came from other sources among the 5.1 million adults with disabilities who reported using assistive technology (Altman, B., 1992) 2. Many people with disabilities need assistive technology which they cannot afford. A recent analysis of the 1990 National Health Interview Survey on Assistive Devices revealed that at least 2.5 million persons in the noninstitutionalized population have an unmet need for assistive technology devices. These include 1.2 million persons of working-age, between 25-64 years. The types of assistive technology which were measured by this survey included: prosthetics and orthotics, mobility devices (e.g. cane, walker, wheelchair, scooter), hearing devices (e.g. hearing aid, TDD/TTY, special alarm), vision devices, speech devices, and other types of assistive technology (e.g. adapted computer, adapted automobile). Over 61 percent of those who reported that they need assistive technology which they do not have explained that they cannot afford them (Hendershot, G., LaPlante, M., and Moss, A. 1992.) This survey also confirmed that nearly one-half of persons with assistive technology devices say it was paid for by themselves or their families with no assistance from third party payers, and more than three-fourths of persons with home accessibility features say they were paid for entirely by themselves or their family. Although more than half of poor people with assistive technology devices had the help of a third party payer in obtaining devices, poor people were about twice as likely as nonpoor people to say they needed a device they did not have. 3. Many people with disabilities who have private insurance do not get it to pay for assistive technology. Approximately two-thirds of persons with disabilities have private health insurance according to the National Health Interview Survey. (National Center for Health Statistics, 1987). A consumer survey of 724 working-age persons with disabilities or chronic illness who were members of various national voluntary health associations revealed that, among those who reported using various types of "durable medical equipment or other assistive devices (e.g. wheel chair, respirator, blood glucose meter, insulin pump, therapeutic shoes)" in 1989, only 39.3% of persons with health insurance reported that their health insurance covered this equipment without any limitations and a co-payment of 20% or less. Another 23.3% reported that their health insurance made a smaller contribution to their durable medical equipment, and 16.7% reported that their health insurance did not cover their use of durable medical equipment at all. Unfortunately, 20.7% of the respondents reported that they did not know whether their health insurance covered the durable medical equipment which they used. (Griss, B. and Hanson, S., 1990) Literature review on private insurance and assistive technology: Although approximately two-thirds of persons with disabilities have some private health insurance, (National Center for Health Statistics, 1987) few studies have attempted to examine what types of assistive technology private health insurance pays for. Nor have many studies tried to identify the conditions under which private insurance will pay for certain types of assistive technology. Some studies have attempted to measure the contribution of private health insurance to assistive technology for selected populations. For example, a Paralyzed Veterans of America (PVA) survey examined the health care costs for spinal cord injury among a random sample of persons with spinal cord injury around the country. (Berkowitz, Harvey, Greene, and Wilson, forthcoming). Among the needs which they estimated annual costs for were adaptive equipment which varied from $1,874 for a "complete quadriplegic" to $449 for an "incomplete paraplegic" for average annual costs. Private health insurance accounted for approximately 16.2 percent of these adaptive equipment costs. Although the survey asked questions about the current health insurance status of persons with spinal cord injury, the survey did not seek comparable information about their health insurance status since the spinal cord injury that would enable one to accurately measure the contribution of different sources of payment to DME costs since their spinal cord injury. Another study in progress on persons with spinal cord injury is being conducted by Denise Tate at the University of Michigan's Department of Physical Medicine and Rehabilitation to examine the impact of insurance benefits coverage on independent living outcomes (Tate, D. 1992). This research is collecting data on about 300 persons treated for spinal cord injury at two rehabilitation centers in Michigan. By comparing persons with spinal cord injury who are covered by four different types of insurance (e.g. no fault auto insurance, Workers Compensation, private health insurance, and Medicaid) the study is examining the services which they get and the progress that they are making toward independent living. In the second year of this study, they are finding that type of insurance did not seem to affect access to DME as much as it has affected access to housing, personal assistance services, and transportation which have a significant effect on Independent Living outcomes. A recent study on consumer abandonment has focused attention on the selection process through which persons with disabilities acquire assistive technology. In a recent survey at the National Rehabilitation Hospital in Washington, D.C. it was found that equipment purchased through third party payers is more likely to be abandoned than equipment purchased out of pocket. This exploratory study used a small sample (N=227) and combined persons with different types of disabilities using different types of assistive technology which made it difficult to isolate the factors which led to an "abandonment" of different forms of assistive technology (Phillips, 1992). Nevertheless, this type of study when properly refined has the potential of calling attention to the financing advantages of improving the selection process for assistive technology. Survey of insurers in nine states: Viewing access to assistive technology as an important component of health, this study examined how different types of private insurance choose to cover different types of assistive technology. The study consisted of: (1) surveying insurers in each of nine states selected among the early state Tech Act programs; (2) inviting insurers and others to report on insurance coverage at the three regional forums, and (3) conducting interviews with representatives of insurers, rehabilitation professionals, and DME vendors. Nine states were selected by the National Council on Disability from the original Tech Act states. These included: Arkansas, Illinois, Maine, Maryland, Minnesota, New Mexico, North Carolina, Oregon, and Utah. The funding specialist in each of these Tech Act states was asked to survey five types of insurers in their state to learn about their coverage policy for specific types of assistive technology. The five types of insurers were: (1) Blue Cross-Blue Shield, (2) a commercial or for-profit insurer, (3) a health maintenance organization (HMO), (4) a self-insured employer, and (5) a Workers Compensation carrier. To increase the comparability of data across states and to maximize the representativeness of the results, the Tech Act programs were asked to target among the largest insurers within each category of insurance identified through the State Department of Insurance. The state employee benefits plan was selected in each state as a representative of self-insured employers. Most state Tech Act programs found it very difficult to get the cooperation of private insurance companies to provide information about the types of assistive technology covered by their insurance plans. One state was not able to find any private insurers to provide the requested information. Other states had difficulty in finding certain categories of insurers. Some Tech Act funding specialists encountered difficulties until they finally found someone who was knowledgeable and willing to answer their questions. Some insurers chose to fill out the survey themselves; others were willing to provide the information to the Tech Act funding specialists who were able to ask clarifying questions in filling out the survey. Unfortunately, these variations in the methodology of collecting the data may have compromised the reliability of some of the information. In addition, many insurers insisted on anonymity in responding to the survey. For all these reasons, the analysis of the insurance survey which follows is more general than we would prefer. However, it provides an overview that is generally absent from the literature, and offers some valuable insights into the variations by which private health insurance covers assistive technology. Workers Compensation/casualty insurance Workers Compensation insurers were selected as a point of comparison with private health insurers because they often look at persons with the same types of disabilities and because the Workers Comp carriers are sometimes part of the same insurance company. However, the decisions of the Workers Comp carriers are often different from the decisions of the private health insurers because they have different requirements and different incentives. The Workers Comp. carrier is supposed to do whatever they can to get a worker who has been injured on the job back to work. This includes funding assistive technology that promotes independence in the home and rehabilitation in the workplace as well as getting to the workplace. Health insurers, on the other hand, have a fiscal incentive to restrict their coverage to acute care needs since they have annual contracts with the employer who has an incentive to minimize the employer's premium contribution. A major problem with the Workers Compensation system is that many of the players in the system (e.g. employers, insurers, attorneys, physicians, and workers) have financial incentives to go for a large lump sum settlement in the short run rather than for rehabilitation over the long run. This problem which is not the subject of this paper is leading to rising costs in the Workers Comp system which, ironically, is resulting in political pressure to restrict rehabilitation benefits in certain states. Among the services which some Workers Comp insurers identify as necessary to provide if needed are prosthetics/orthotics, walking aids, manual and power wheelchairs, hearing aids, braille aids, personal care aids, bathroom equipment; eating/feeding aids; transfer equipment; home modification; van modification and driving aids (see Table 1). States differ in how comprehensive their Workers Compensation laws are and Table 1 reveals the great variations among Workers Compensation carriers for the same type of assistive technology. In contrast to health insurance, Workers Comp. carriers are likely to pay for home modification; van modification and driving and transportation aids; car or van purchase in recognition of importance of transportation to getting to work; computer access and use; and various aids for hearing and vision. Surprisingly, Workers Comp. is unlikely to cover most recreation aids and is less likely to cover speech aids, certain alarm/emergency call systems, personal care aids, adapted clothing and personal robotics. Some Workers Comp. carriers appeared to be more likely to cover personal assistance services than assistive technology to enable a person to meet their Activities of Daily Living (ADL) needs more independently. Not surprisingly, Workers Comp. was unlikely to pay for school modification or public accommodations. There are other types of casualty insurance that could have been examined in this study. Among them are auto insurance, disability insurance, product liability insurance, and malpractice insurance. Some of these forms of casualty insurance make a major contribution to the rehabilitation process and provide coverage for different forms of assistive technology. For example, approximately half of all persons with a traumatic brain injury are injured in a motor vehicle accident (Rice, D. and MacKenzie, 1989). Their access to rehabilitation and assistive technology would often depend more on the automobile casualty insurance that they have or that the person who hit them carries than on their own health insurance plan. An examination of these other forms of insurance would reveal other interesting contrasts with the function of private health insurance. Moreover, it also raises the public policy question whether the American public is being well served by this patch-work quilt of over-lapping insurance coverages, operating with different incentives and looking differently at the needs of the individual. Ultimately, the question is whether the American public is best served by having access to different types of benefits not based on their health care needs but based on whether an injury occurs at the work place, over the weekend, in an automobile, or in one's home. Another kind of private insurance which was also not examined in this study is long term care insurance. This is currently used by less than __ percent of the population, and is often purchased for nursing home coverage but sometimes provides for home care when it serves as a lower cost alternative for persons who would otherwise be placed in a nursing home. The rest of this chapter will focus on different forms of private health insurance including: HMOs, commercial insurers, Blue Cross-Blue Shield, and self-insured employers. Private health insurance is a bit of a misnomer because there is a substantial public tax subsidy in it (approximately 25 percent) when it is provided through an employer. This estimate was derived from the Joint Committee on Taxation estimate of $32.6 billion for tax expenditures related to exclusions of employer contributions for medical insurance premiums and medical care in the Ways and Means Committee 1990 Green Book, (p. 807) and the Health Care Financing Administration's estimate of $139.1 billion in 1990 for employer contributions to private health insurance premiums reported in the Health Care Financing Review, Winter 1991, Vol. 13, No. 2, (p. 86). Moreover, private insurance is usually oriented to medical services rather than to health care needs, and it generally functions as a mechanism to pay for health care services used by a specific employer group rather than for spreading risk throughout the population. HMOs: HMOs are likely to provide some DME coverage as part of their comprehensive benefit package, but the DME coverage is likely to be strictly limited. Unlike traditional insurance plans that impose a deductible and a copayment to discourage unnecessary utilization, HMOs generally provide first dollar coverage. They also depend on organizational policies that are designed to rationalize health care delivery for their average users rather than for persons with disabilities. Some HMOs impose a dollar cap on DME like $500-1000 per benefit period (maximum one year) which is inadequate for many types of DME. Many HMOs also limit the number of visits for rehabilitation therapies to 60 days per year. This cap was actually introduced as a minimum requirement for federally qualified HMOs in the Federal HMO Act of 1973. Some HMOs actually impose a coverage limit to a 60 day period from the time of an injury or from the time of discharge from a hospital. This limitation is subject to a subjective judgment that the individual will be able to make substantial progress within a limited period of time. Some HMOs have been known to not honor their obligation to provide the minimum benefit if the HMO decides that the individual would not make substantial progress within a limited time period. This requirement discriminates against persons with chronic degenerative conditions unless the HMO recognizes as progress the prevention of expected deterioration. HMOs were most likely to provide coverage for seating and positioning, walking/standing aids, manual and power wheelchairs, and prosthetics/orthotics (see Table 2). Some HMOs also provided coverage for some ADL aids, functional electrical stimulation, TDD equipment, adaptive listening aids, low-vision aids, and oral speech aids, and adapted exercise aids. None of the HMOs which were reported on provided coverage for home modification, personal robotics, environmental control devices, van modification, car or van purchase, or computer access, adaptive toys or adaptive sports. Some HMOs were even unlikely to cover any ADL aids, prosthetics/orthotics, mobility aids, vision aids, or speech aids. A few HMOs provided coverage for hearing aids as an optional benefit which was available for an additional premium. The most comprehensive HMO offered coverage for: functional electrical stimulation, personal robotics, power wheelchair, hearing aids, and low vision aids. Commercial insurers: Commercial health insurers varied considerably in the assistive technology that they covered (see Table 3). The most likely items to be covered were prosthetics/orthotics, a manual wheelchair and walking/standing aids. One commercial insurer indicated that it was required to provide an oral speech aid if needed. Some commercial insurers reported covering: bathroom equipment; adaptive furniture, transfer equipment; seating and positioning, and power wheelchair. Other commercial insurers reported covering alarm/emergency call system, eating aids, home modification; environmental control devices, hearing aids, and even an augmentative communication device. At the other extreme, one commercial insurer did not cover orthotics and some did not even cover any mobility aids. No commercial insurer reported covering personal robotics, van modification; driving aids; car or van purchase; or computers; and most commercial insurers did not cover: aids for daily living, environmental controls, hearing, vision, speech aids or any recreation aids. Blue Cross-Blue Shield: Like commercial insurers, Blue Cross-Blue Shield will generally not cover ADL aids, home modification, environmental control devices, van modification, driving aids, car or van purchase, computer access, aids for hearing (other than hearing aids), visual aids, augmentative communication devices or recreation aids (see Table 4). There seemed to be a little more uniformity in coverage policies among the Blue Cross-Blue Shield plans than among the commercial insurers, but commercial insurers in two states were more likely to report being required to provide some assistive technology when needed. The most likely types of assistive technology to be covered are: prosthetics and orthotics, walking aids, manual or power wheelchairs, and oral speech aids. Augmentative communication devices were reportedly covered on a case-by-case basis in one Blue Cross-Blue Shield plan. Some Blue Cross-Blue Shield plans also were likely to cover functional electrical stimulation, mobility aids for visual impairment, seating and positioning, and hearing aids, adaptive furniture, transfer equipment, personal robotics, and adaptive exercise aids. Self-insured employers: Large self-insured employers are supposed to have a more comprehensive benefit plan than small employers who seek to self-insure primarily to avoid state regulation. The state employee benefits plan was thought to be representative of large self-insured employers. Nevertheless, this survey found that state employee benefits plans were less likely to cover assistive technology than Blue Cross-Blue Shield or commercial health insurers (see Table 5). Like other forms of private health insurance, the state employee benefit plans were most likely to cover prosthetics and orthotic devices, walking/ standing aids, adaptive furniture, transfer equipment, and oral speech aids. Surprisingly, two of the three state employee benefit plans reported on did not appear to provide coverage for manual or power wheelchairs. However, state employee benefit plans were unlikely to include coverage for: alarm/emergency call system, adapted clothing, home modification, functional electrical stimulation, personal robotics, environmental control devices, van modification, driving aids, car or van purchase, mobility aids for visual impairment, computer access, any hearing or visual aids, augmentative communication devices, or any recreation aids. Methodological problems with the grid: The methodology of comparing types of insurers on whether they cover different types of assistive technology has certain problems. One problem relates to the representativeness of the insurance companies. This problem was minimized by encouraging the Tech Act funding specialist to try to target the largest companies based on premium information available from the State Department of Insurance. Another problem of representativeness involves the persons who are reporting on their insurance companies. Many of the Tech Act program staff had difficulty obtaining the cooperation of the insurance companies and may have obtained information from persons in the company who were not sufficiently knowledgeable about the scope of the benefits package. Some insurers chose to complete the grid themselves; others provided information to the Tech Act program which completed the grid. In some cases, information came from an insurance agent when the company refused to provide it directly. And in one state information on two insurance companies was actually provided by consumers who had health insurance through a specific company. A third problem involves the subjectiveness of the judgments about coverage policy. Although an effort was made to identify 39 types of assistive technology, these types were not specified in sufficient detail. For example, transfer equipment could include a seat lift chair or a Hoyer lift or a stairway elevator each with different purposes and considerably different prices. Another problem is that the survey did not specify the characteristics of the individual needing the assistive technology, such as the type of disability or level of severity which might have a bearing on the coverage decisions. For example, the Workers Compensation carriers often made the assumption that a person had a catastrophic injury, while health insurers are likely to make different assumptions about the level of need. The survey did not clarify the nature of the assistive technology which might also affect the coverage decision. While a standard power wheelchair can cost $5,000, a customized power wheelchair with individual modifications can cost $10,000-$25,000. Without specifying the type of the assistive technology, the characteristics of the individual, and the price of the equipment, it is difficult to compare coverage policies among different plans. These problems are accentuated by the fact that most decisions about coverage for assistive technology are made by insurance companies on a "case-by-case" basis. In addition to these problems, the survey asked informants to report whether the insurance coverage was required, likely, or unlikely for different types of assistive technology. Some of the informants expressed the view that there is a fine line between "required" and "likely", and even between "likely" and "unlikely". Others avoided the question by reporting that coverage policy would be based on medical review without specifying the criteria or the standards for review, while others offered a question-mark. It is not clear to the researchers whether the question-mark represents the limited knowledge of the informant or the ambiguity of the question. Is the difference between likely and unlikely based on the informant's personal knowledge of whether a specific coverage decision has ever been made, or based on the possibility that the insurance plan could ever cover a specific type of assistive technology, or based on the probability that the insurance plan would cover the device in a particular hypothetical situation. These differences would need to be further clarified to more accurately measure coverage policy. Although these problems can interfere with quantifying the coverage decisions of different types of insurers, this survey has identified certain coverage patterns that can begin to be addressed in public policy even before they are measured more accurately. Even if the subjectivity of judgments could be eliminated, a survey on coverage policy still does not reveal many of the criteria that private insurers use in determining medical necessity. Difficulty collecting information from insurers: Many Tech Act programs had great difficulty getting insurance companies to respond to questions about their coverage for different types of assistive technology. Many insurers did not want to provide any information even with the promise of confidentiality. There seemed to be two main fears. One was the fear of adverse selection. An insurer does not want to be viewed as having a very comprehensive benefit plan compared to other insurers for fear that they would attract persons who are more likely to be high risk. This could have the effect of increasing health care costs which would force the insurer to raise their premiums and reduce their competitive position in the health insurance marketplace. The second fear which cannot be protected by the cloak of anonymity is the fear of generating public pressure for increasing mandates to cover certain services. In a voluntary insurance system, state mandates could have the effect of driving insurers out-of-state to states where mandates do not exist, or driving employers to self-insure to avoid state mandates. This is why it is necessary for mandates to exist at the federal level for all insurers and self-insured employers. Unless all insurers operate in a system which requires a comprehensive level of benefits, there are likely to be greater financial incentives to compete by avoiding risk rather than by spreading risk among all persons with insurance. Moreover, there is likely to be an incentive to calculate profits in the short run rather than the long run. Cost-effectiveness from an insurer's point of view will be different from a cost-benefit analysis from a public policy point of view (see Cost-Benefit chapter). II. Analysis: Conditions under which insurers may not pay for covered services Much of the literature on health insurance coverage of assistive technology emphasizes the importance of the insurance contract (Reeb, K., 1987). However, the insurance contract generally does not list most forms of assistive technology which are to be covered. Insurers utilize other criteria which may or may not be known by the user of the health insurance or by the employer who contracts for the health insurance to decide the conditions under which to pay for covered services. Based on the health insurance booklets which the funding specialists were able to obtain from certain insurance companies, the three regional public forums on assistive technology conducted by the National Council on Disability, and interviews with insurers, rehabilitation professionals, DME suppliers, and consumers with disabilities, this section will describe the conditions which affect whether an insurer may pay for assistive technology. Among the excuses which private health insurers may use to avoid paying for assistive technology, even when it is a covered service, are the following: (1) device or service is explicitly excluded by the insurance policy; many plans contain a list of excluded services such as: "eyeglasses, contact lenses and their related fittings; services provided by an audiologist and hearing aids (including cochlear implants), devices to improve hearing and related fittings; services that are not medically necessary; personal comfort item or convenience items; air conditioners and humidifiers; dental braces, except as covered for cleft lip and palate". Some insurers may refuse to cover appliances not an integral part of the body such as artificial limbs, hearing aids, crutches, etc. One plan claimed that "The fact that a doctor may prescribe, order, recommend, or approve a service or supply does not, of itself, make it a Covered Service or Medically Necessary, even though it is not specifically listed as an exclusion." Coverage often depends on how effectively the consumer can make the case during the appeals process that the assistive technology which he or she is seeking coverage for falls within the contract language of the insurance plan. One insurer limited coverage to durable medical equipment which "is currently approved under Medicare". (2) person is ineligible for the device because the condition may have occurred before the person was covered by this insurance plan; one insurer defined pre-existing condition as "An injury, illness, or medical condition you had-- whether or not the diagnosis was known to you-- before you applied for this coverage." Many insurance plans consider a condition to be a pre-existing condition if it was diagnosed or treated within 3-12 months prior to the effective date of the current insurance policy. (3) condition was not caused by an illness, disease, injury or congenital anomaly covered by the plan; some insurers have claimed that they are only responsible for the rehabilitation of conditions caused by illness or injury rather than for habilitation for congenital conditions; some insurers have tried to avoid paying for rehabilitation services on the grounds that the actual cause of the condition was not determinable. (4) private insurer will not cover services which the insured person could be eligible for from other public or private payers; this is understandable in the case of Workers Compensation where a private Workers Compensation carrier has a clear responsibility to cover work-related injuries, but it is much more problematic in the case of public programs like services identified in a child's Individualized Educational Plan (IEP) or public insurance programs like Medicare. There are many problems based on the interaction effects of private insurance and public programs. (5) service or device was not provided by a licensed specialist or the person was not referred to the licensed specialist by an appropriate physician; the greater use of managed care for cost containment purposes is tightening the prior authorization requirements which private insurers can impose before deciding whether to pay for covered services; this is highly problematic for persons with disabilities when the gatekeeper is not knowledgeable about rehabilitation or has incentives to under-serve. (6) insurer claims that service is not considered "reasonable and necessary" for that condition; insurer reserves the right to determine medical necessity; the greatest obstacle to coverage of assistive technology by private health insurers is based on the insurer's determination of what is "reasonable and necessary" for a specific condition. "Medical necessity is defined in as many ways as there are insurance companies"; "care recommended for you by a professional may be appropriate for your illness or condition, but may not meet our definition of medical necessity"; many insurers use Medicare's definition of durable medical equipment (e.g. not useful to a person in the absence of illness, injury or disease); letter of medical necessity is generally required to be signed by a physician prior to rendering of the service; documentation must generally include: patient's diagnosis, type of equipment to be rented or purchased; patient's prognosis; estimated duration of need for the equipment; instructions for the use of the equipment; patient's or other family member's ability to operate equipment; indication that the equipment is either new, used, or replaced; reason equipment is being replaced or cannot be repaired; (7) device is not primarily used to serve a medical purpose; some insurers explicitly exclude coverage for maintenance or basic daily care concerned with maintaining a functional level of living in one's home-- such as activities assisting with daily living; in defining the meaning of "medical purpose", insurers often use an acute care definition of health; this allows them to exclude coverage for maintenance or basic daily care concerned with maintaining a functional level of living in one's home -- such as through the assistance of an environmental control unit; reflecting a home-based definition of need, health insurers often try to avoid coverage for health related services that occur in other settings such as school or workplace or community life. (8) insurer decides that there is not a "reasonable expectation" that the device will result in restoration or improvement of lost functions within a specific period of time; one HMO is currently resisting covering rehabilitation services on the grounds that the condition is "life-long"; special features are covered only if they serve a therapeutic function and are not primarily a convenience for the patient or family; HMOs often impose a "reasonable expectation of progress" test of 60 visits for rehabilitation services, or 60 calendar days since an injury or discharge from a hospital. Insurers may try to discriminate against persons with chronic degenerative conditions by ignoring that rehabilitation can reduce the deterioration of a condition or can enable a person to maintain their level of function; some insurers will try to deny coverage if rehabilitation will not restore a lost function even if it will enable a person to improve their functioning inspite of an impairment; (9) device may not fall within the allowable cost limits; (e.g. one HMO is reported to have an annual cap of $500 for DME per year; insurer may also determine when a device must be purchased or rented, and may require that the rental not exceed the total cost of purchase; insurer may require prior approval for DME costs in excess of a certain amount (e.g. $100); (10) specific device is not on an approved list of the insurer's which is not included in the "Certificate of Coverage"; one insurance contract stated that it excludes from coverage "services or supplies that are not specifically mentioned in this Certificate". Another contract stated that the insurance will not cover any services that are not covered by Medicare. (11) provider or vendor is not on an approved list of the insurer; insurers may try to limit reimbursement to an approved list of providers or vendors in order to maximize the insurer's leverage over prices. Insurers may try to steer policyholders to providers with whom the insurer has negotiated a discount price even though the provider may not be the choice of the policyholder. (12) policy does not pay for repair, maintenance, training or replacement even if it covers the device and assessment of need; some policies cover only the initial purchase of an external prosthesis which is needed because of a condition occurring when the insurance plan was in effect; these policies may not cover repair, maintenance, training or replacement; many private insurers will cover replacement due to changes in the person's condition but not due to loss or damage of the equipment. (13) policy may not pay for duplicates; many insurance plans will avoid paying for duplicates or even for assistive technology that approximates the functions of a more cost effective alternative; (14) insurer requires person to meet certain deductible and copayment requirements (e.g. consumer may be required to pay a copayment of between 20%-50%; by capping the DME benefit at a specified amount, the insurer is in effect requiring a copayment of 100%). (15) insurer may offer coverage for certain types of assistive technology for an additional premium; hearing aids were the most common type of assistive technology available as an optional benefit; some insurers offer DME as an optional benefit. (16) insurer may refuse to pay for device which has not been approved by a specific governmental agency (e.g. Food and Drug Administration) which would certify that the technology results in improved health outcomes for a specified diagnosis; one insurer limited coverage to assistive technology to durable medical equipment which "is currently approved under Medicare"; (17) insurer decides what is cost-effective; a power wheelchair may be covered if the physical condition prevents the use of a manually-operated wheelchair in one's home; otherwise, a power wheelchair may not be covered even if it is necessary for mobility at one's workplace or in the community. While private insurers can legally avoid paying for assistive technology that is not covered by the contract, they frequently are willing to go outside the contract in order to cover assistive technology which will reduce their liability for more expensive covered services like hospitalization or institutionalization. Private insurers often resort to medical case management for high cost cases which may require greater flexibility in benefits than was built into the insurance contract. Insurers often point to medical case management as an example of their flexibility in responding to unique needs. These examples reinforce the notion that it may be strategic to convince private insurers that rehabilitation and assistive technology can be extremely cost-effective in general. (Mendelsohn, S. and DeWitt, J., 1992) In an assessment of alternative funding strategies for private health and disability insurance, Mendelsohn and DeWitt suggest that the state should conduct a demonstration project designed to help insurers discover the cost savings created by the use of assistive technology. Among the potential cost savings are: (1) prevention of additional illness or injury; (2) prevention of job performance stress; (3) job retention; and (4) facilitation of return to work. The problem with this strategy for demonstrating the cost-effectiveness of assistive technology is that private health insurers do not calculate cost-effectiveness from the perspective of the individual or of society. Unless the regulatory structure for health insurance changed, health insurers are likely to continue to be concerned with their short term profits in their short term contracts with employers. Rather than have to convince an insurer of the effectiveness of assistive technology, an insurance representative explained that an insurer is willing to cover whatever the employer is willing to pay for. From the insurer's perspective, it does not matter whether the service is medically effective. Nor does it matter that assistive technology can increase the person's independence, get the person back to work, or increase the quality of life. This is a major problem associated with employment-linked health insurance as well as with private insurers who have no stake in whether a person with disabilities becomes a productive citizen. Among the other ways that private insurers and self-insured employers can limit their liability in the health insurance marketplace are: (1) life time caps:; 79% of employer-sponsored health insurance plans limit an insurer's liability to a lifetime maximum; 42 percent had a lifetime cap of at least $1 million in 1989, according to the Bureau of Labor Statistics; services which exceed the lifetime cap will not be reimbursed by the private insurer or self-insured employer. A 1990 survey of working-age persons with disabilities in various voluntary health associations found that 26.1 percent of persons with serious mental illness and 13.7 percent of persons with spinal cord injury had exceeded the lifetime cap on their private insurance plans (Griss, B. and Hanson, S., 1990). In a 1988 case involving Jack McGann v. the H & H Music Company in Houston, Texas, a federal District Court in Texas and Court of Appeals in New Orleans have decided that an employer can change the life time cap of an employer-sponsored health insurance plan for AIDS related services in order to reduce the employer's liability. This case which has recently been appealed to the Supreme Court may affect whether employers can change the lifetime caps in their insurance plans for various high cost medical conditions whether cancer, stroke, diabetes, etc. (N.B. This kind of behavior by an employer would not be legal since July 26, 1992 under the Americans with Disabilities Act.) Some insurers impose a lifetime cap on certain services. For example, some policies will cover only one wheelchair per individual per lifetime even though most people will need to replace their wheelchairs when the wheelchair wears out or their needs change. (2) annual limits: insurance contracts may limit the dollar amounts, hours, or units of service that persons can receive for certain covered services; approximately 11.1 percent of persons with disabilities reported exceeding annual maximums in their private health insurance plans (Griss, B. and Hanson, S., 1990). Persons with disabilities in HMOs are especially vulnerable to annual limits on DME coverage since HMOs provide first dollar coverage in exchange for a capitated payment without resorting to deductibles or copayments to discourage unnecessary utilization. (3) pre-existing condition exclusions: approximately 16 percent of persons with disabilities have a permanent pre-existing condition exclusion on their private health insurance plans according to the 1990 BPA/WID Consumer Survey (Griss, B. and Hanson, S., 1990); a much higher percentage are subject to waiting periods for pre-existing conditions which can be repeated every time there is a change in insurer; many insurance plans impose a pre-existing condition exclusion on any conditions for which there was a diagnosis or treatment during some period (3-12 months) prior to the effective date of the current health insurance plan. (4) premium increases based on group or individual "experience" which exceed threshold of affordability and lead to reduction in benefits or policy cancellation; insurers can adjust the premiums in an individual or group plan to reflect the actuarial experience of whatever "block of business" that the insurer chooses to assign a particular individual or group to. The insurer can assign some individuals or groups to a "block of business" which is in an upward spiral of costs resulting in an increase in premiums beyond the insured's threshold of affordability. This situation frequently leads to a reduction in benefits or a policy cancellation when the insured individual or group can no longer afford the premium increases. The list of conditions under which health insurers will pay for covered services defies generalization other than to say that: "It all depends". Importance of medical documentation: There is a growing literature on how to provide medical justification for insurance coverage of assistive technology as a medical necessity. One example is the Prentke Romich Company's "How to Obtain Funding for Augmentative Communication Devices" (Prentke Romich, revised 1989) which describes the critical terms that must be used (e.g. medical necessity) and others that should be avoided (e.g. educational or vocational benefits) and provides an outline for and successful examples of letters to document medical necessity. Recognizing that most insurance plans do not explicitly refer to a specific type of durable medical equipment, it is necessary to show how the type of assistive technology which is sought fits under such covered benefits in the insurance policy such as durable medical equipment, prosthetics, or orthotics. For example, Prenthke Romich suggests referring to an augmentative communication device as a speech prosthesis which replaces the function of a malfunctioning body part, i.e. the larynx. In order to emphasize how an augmentative communication device is medically necessary, Prenthke Romich suggests that specific examples be given from the individual's personal life which show how the use of a communication device could have or did improve communication with medical personnel and rehabilitation personnel resulting in more effective and more timely medical treatment. The emphasis should be on the impact of the equipment on the individual's physical and mental health care needs. In addition, the medical documentation should emphasize the cost savings to the insurance company from reducing the individual's medical care costs and the evidence that the specific type of assistive technology which is being sought is the least expensive device which will adequately serve the needs of the individual. Supportive documentation is necessary from the individual's physician(s) and from rehabilitation professionals who can explain: (1) the medical history and diagnosis of the condition which has led to the need for the assistive technology, (2) the prognosis for the individual's functioning without the assistive technology, and (3) evidence of the individual's ability to use the assistive technology. This information can often be effectively communicated with photographs of the individual, with a detailed description of the assistive technology, through the use of a videotape of the individual using the equipment, and with any information about the individual's experience with the equipment during a trial period. In a memorable newsletter referred to below, Anna Hofmann described how a twenty-nine year old woman with cerebral palsy was able to get Medicare to reverse its denial of coverage for an augmentative communication device. (Hofmann, 1987). Unable to get the Medicare carrier to recognize that an augmentative communication device was not a "personal comfort item", she arranged to visit in person the local offices of her Congressional members to demonstrate that this assistive technology actually replaced a function of the body enabling her to be understood. The Prentke Romich guide identifies a critical role for the "Client Advocate" who coordinates the collection of the supportive materials which is sent to the Funding Coordinator of the equipment manufacturer or distributor before it is submitted to the insurance company. The funding guide begins with the claim that "Funding success is 100% dependent upon the perseverance of the client advocate" and that "Funding is always available!". Although health insurers want to keep coverage decisions as much up to their discretion as possible, it is possible to build an "institutional memory" by sharing experiences of how different insurers have decided that it was medically necessary to cover certain types of assistive technology. Building this "institutional memory" is also essential to changing the criteria of medical necessity that health insurers can be made publicly accountable for using. There are various ways that an "institutional memory" can be generated in the area of reimbursement for assistive technology. One example is Anna Hofmann's monthly newsletter called "The Many Faces of Funding" which is sponsored by Phonic Ear. This collection of newsletters is organized into different sections. One section provides an overview of Federal/State, Educational, Insurance, and Private Funding programs. The second section addresses strategies for knowing your patient, assembling supportive documents, and building awareness/credibility for the assistive technology. The third section provides a brief synopsis of selected case histories relating to Medicare, Medicaid, and Insurance companies from Monthly Newsletters since 1981. Also included are summaries of various federal and state programs that provide precedents for justifying coverage of different forms of assistive technology. Another example of sharing experiences among rehabilitation professionals is Janet M. Gritz's "Third Party Reimbursement for Speech-Language Pathology and Audiology Services" (Gritz, J., 1990). Produced for the Maryland Speech-Language-Hearing Association, this report provides an analysis of how 86 third party payers (private and public) operating in the Washington, D.C. metropolitan area cover speech-language pathology and audiology services. The information was obtained from actual records of claims covered or denied by insurance carriers, correspondence with insurers, and an examination of Federal Employees Health Benefits Program brochures which needs to be periodically updated. An "institutional memory" can also be built through keeping track of the DME coverage policies of different insurance plans by systematically sharing experiences among rehabilitation professionals, parents of children with disabilities, and persons with disabilities. Lou Golinker is trying to organize health insurance registries to monitor coverage denial excuses of third party payers for specific types of assistive technology (Golinker, 1992). Golinker suggests that these health insurance registries can expose arbitrary and inconsistent decisions of third party payers and lead to greater responsiveness to people's needs for assistive technology. Cost containment pressures among third party payers (both private and public) have accentuated the tendency for insurers to become more restrictive in their eligibility criteria based on medical underwriting and more restrictive in the health benefits which they offer. Contrary to the assumption that competition in the health insurance marketplace encourages private insurers to offer more generous benefits to attract more consumers, cost containment pressures actually discourage insurers from covering assistive technology in order to avoid what they regard as "adverse selection". Coverage depends on not only on the type of insurance chosen, but the location of the event which necessitates the use of assistive technology. For example, if you have a spinal cord injury, it makes a big difference if you have it in an automobile accident or on the job than if you have it on a weekend falling off your roof; instead of people getting what they need to get back to work they get what the insurer agreed to provide in advance. With health insurance, which is usually a contract between an employer and an insurer, the needs of the consumer may be easily overlooked. A disability perspective on health care reform considers not what it takes to maximize profits for private health insurers but what is good public policy for coverage of assistive technology. III. Recommendations: 1. Establish comprehensive health care as a federal right for all persons which is not dependent on income, employment status, geographical area, age, or presumed quality of life, etc. If this cannot be achieved within the logic of a voluntary private health insurance system, then public policies should be established which can finance the comprehensive health care needs of all persons and distribute those costs equitably throughout the population. 2. Establish Federal minimum benefit standards for health insurance. These should be based on the kind of health care services that people need and not be limited to the financial capacity of employers or the financial incentives of insurers to pay for these services. 3. Broaden the definition of medical necessity to include health and safety needs and Activities of Daily Living (ADL) needs. Health insurance should cover all assistive technology which improves the function of malfunctioning body parts (whether replaced or remaining in the body) that is expected to improve health, safety, or promote independence in meeting ADL needs. This includes environmental control devices, safety equipment, and communication devices that can facilitate interaction with medical personnel, can assist in an emergency situation, and can reduce mental health problems related to barriers to communication. 4. Require insurers to recognize treatment billing codes from a rehabilitation perspective which reflect the evaluation services provided by rehabilitation professionals who need to assess functional deficits in order to develop effective treatment plans to address functional impairments. It is not adequate to rely on diagnostic treatment codes from a clinical perspective that is principally concerned with identifying the underlying medical conditions. 5. Develop collaborative strategies with the health insurance industry for educating private insurers to the health related aspects of assistive technology. 6. To avoid the consumer suffering from the competition among private and public payers to be "payer of last resort", private insurers should be required to provide funding for assistive technology as a covered service under its health insurance policy, and then try to collect from the government program. 7. Require insurers to guarantee consumer choice and control in the selection of assistive technology in order to maximize the effectiveness of assistive technology and minimize the inefficiencies associated with consumer abandonment of assistive technology. 8. Develop legal procedures for establishing precedents for coverage of assistive technology by private insurers to reduce the discretion which private insurers currently have to avoid paying for health related assistive technology. 9. Build an institutional memory among providers, vendors, and consumers to reduce the arbitrary discretion which private insurers currently exercise. 10. Require the Department of Labor/Bureau of Labor Statistics to request information about health insurance coverage of DME from the more than 4000 employers who they survey annually for the Employee Benefits Survey. This information would also be useful to the Department of Labor to promote the employment objectives of ADA. 11. Encourage universal design of products so that costs for assistive technology can be shifted from health insurance to the general costs of products. IV. Future research: 1. Design and conduct studies of cost-effectiveness of assistive technology from the perspective of employers, insurers, different levels of government, and consumers taking into account the potential for increases in productivity, independence, and integration as well as a reduction in secondary disabilities. 2. Develop studies of the actuarial implications of extending coverage for assistive technology. Instead of asking only how would health insurance premiums be affected by the incidence of disability and the estimated use of assistive technology also take into account the reduction in acute care utilization attributable to enhanced functional capacity. 3. Examine the knowledge base of claims reviewers of third party payers who decide what assistive technology private insurers should pay for. 4. Examine the impact and administration of assistive technology coverage in various Canadian provinces (e.g. Ontario and Alberta), as well as Sweden, as models for covering assistive technology through the health care system in the U.S. 5. Extend analysis of private insurance coverage of assistive technology: [A] Examine claims processing experience of DME vendors with different types of third party payers. A systematic survey of a representative sample of vendors of DME through a trade association like the National Association of Medical Equipment Suppliers (NAMES) or through selected manufacturers or distributors of specialized assistive technology like augmentative communication devices, could identify the facilitators and obstacles to coverage in different types of insurance plans. This research could contribute to the building of an "institutional memory" where yesterday's exceptions become tomorrow's rule. learn their experience with different types of insurers. [B] Recommend that the Social Security Administration should study the adequacy of rehabilitation benefits for SSDI beneficiaries during the two year waiting period for Medicare. [C] Expand survey on the adequacy of health insurance for persons with disabilities to measure how effectively different forms of private and public health insurance are meeting their health care needs. Bibliography Access to Health Care, "Strategies for Adapting the Private and Public Health Insurance Systems to the Health Related Needs of Persons with Disabilities or Chronic Illness," Vol. I, Nos. 3-4, December 1988-March 1989, pp. 3-11., United Cerebral Palsy Associations, Washington, D.C. Altman, Barbara M., Preliminary estimates prepared for National Council on Disability by Agency for Health Care Policy and Research, February 1992. Berkowitz, Monroe, Harvey, Carol, Greene, Carolyn G., and Wilson, Sven E., The Economic Consequences of Traumatic Spinal Cord Injury, Demos Publishers, forthcoming. Golinker, Lou. Personal correspondence submitted to the Prentke Romich Corporation (PRC's) "Current Expressions", June 1992. Griss, Bob and Hanson, Stuart, Accessibility, Adequacy, and Affordability of Health Insurance for Persons with Disabilities or Chronic Illness, unpublished draft, Chapter 3, submitted to the National Institute on Disability and Rehabilitation Research, July 1990. Gritz, Janet M., "Third Party Reimbursement for Speech-Language Pathology and Audiology Services", Maryland Speech-Language-Hearing Association (MSHA) Hospital and Clinical Affairs Committee, 200 Kimblewick Drive, Silver Spring, MD 20904. Health Care Financing Review, Fall 1991, Vol. 13, No. 1, Table 12, pp. 51-52. Hendershot, Gerry E., LaPlante, Mitchell P., and Moss, Abigail J., "Assistive Technology Devices and Home Accessibility Features: Prevalence, Payment, Need, and Trends", Advanced Data on Vital and Health Statistics, No. 217, Hyattsville, MD, National Center for Health Statistics, 1992. Hofmann, Anna. "The Many Faces of Funding...", March 15, 1987, Phonic Ear, Inc., 3880 Cypress Drive, Petaluma, CA, 94954-7600. Mendelsohn, Steven and DeWitt, John C., "Assistive Technology in Maryland: Existing Options and Alternative Strategies Under Federal/State Funded Programs, State-Based and Private Initiatives," April 1992, pp. 40-41. National Center for Health Statistics, Health Care Coverage by Sociodemographic and Health Characteristics, United States, 1984: Data from the National Health Survey, Vital and Health Statistics, Series 10, No. 162; November 1987, DHHS Publication No. (PHS) 87-1590; Tables 4, 6, 9, 13, 18. Phillips, Betsy, "Technology Abandonment: From the Consumer Point of View", National Rehabilitation Hospital, Rehabilitation Engineering Center, Washington, D.C., 1992. Reeb, Kenneth, G., "Private Insurance Reimbursement for Rehabilitation Equipment", Electronic Industries Foundation, Washington, D.C., July 1987. Rice, Dorothy P. and MacKenzie, Ellen J., The Cost of Injury in the United States: A Report to Congress. San Francisco, CA: Institute for Health and Aging, University of California and Injury Prevention Center, The Johns Hopkins University, 1989, p. 163. Tate, Denise, "The Effects of Insurance Benefits Coverage on Independent Living Outcomes for Persons with Spinal Cord Injury", Field-Initiated Research Continuation Proposal to the National Institute on Disability and Rehabilitation Research, January 1992. Word from Washington, "Health Insurance At Risk", United Cerebral Palsy Associations, Washington, D.C., May/June 1991, pp. 13-16. Section Five: Alternative Funding Programs for Assistive Technology NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Alternative Funding Programs for Assistive Technology Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street, N.W., Suite 1112 Washington, D.C. 20005 February 12, 1992 Introduction A variety of alternative funding programs exist for the purchase of assistive technology equipment and devices. These funding sources are "alternative" in that they are generally smaller, more targeted funding sources available to people with disabilities who typically are denied funding by the more traditional funding sources. Eligibility and program formats vary widely, but in most cases, these funding sources provide less stringent eligibility requirements and certifications than the traditional funding sources. The fourteen alternative funding programs looked at here have a wide variety of policies and objectives. Many are "payors of last resort," places to turn when all other traditional private and public sources have been pursued, and adequate funding has not been obtained for the desired piece of equipment. With almost every program, there are more applications than there are funds, and particularly for those programs with liberal eligibility requirements and the most flexible terms, the waiting lists of already approved applications are long. These alternative funding programs are operated and supported by state governments, local and national agencies who serve people with disabilities, manufacturers of assistive technology devices, manufacturers of equipment which can be adapted for use by people with disabilities, and one federal government employer. These alternative funding programs include a variety of loan programs, manufacturer's discounts, reimbursements for adaptations made to equipment, and outright grants made for the purchase of assistive technology devices and accommodations. Some funds are available only for the purchase of specific types of equipment, while other programs will fund virtually any type of assistive technology. These programs receive funding from a variety of sources, from state or federal government appropriations and federal grants to private corporate contributions or manufacturer support. One innovative program is generating funds through a state income tax check-off contributions, and another proposed state government program will generate funds from fees charged in convictions of motor vehicle and traffic violations. The single greatest common problem of these alternative programs is lack of sufficient funds to meet all requests, (with one exception), with limited funding thus affecting the extent of information dissemination about the funds' availability to potential technology users. In many cases, very limited information dissemination occurs within the target audiences regarding funding availability, and in one case funds are only available to individuals at the program staff's specific suggestion, without any publicity to the general service population of the program whatsoever. Either because funding is so limited, or because the program is new, or because there is no simple way to spread the word, many potential technology users may never learn about an alternative funding source for which they are qualified. The manufacturers typically do not heavily promote their own discount or loan programs, and there are no national, or even regional clearinghouses which offer information and referral about alternative funding sources. In researching these programs, an example was given by a local private service agency of how their loan fund will assist a sight impaired woman purchase a particular device for which she could not obtain enough funding through traditional sources. The local service agency was completely unaware that the manufacturer of that exact device operated their own low-interest loan program with a sizable discount and flexible repayment terms. The lack of information exchange and coordination even between the existing alternative programs is staggering. Many of the programs are designed to in some way serve as a demonstration model for other like programs, and staff are eager to share information about their projects for purposes such as this study. Again due to limited funding however, their information dissemination to other potential alternative funding providers is limited. While their specific goals and target audiences may differ, each program has in common its desire to ease the availability and accessibility of assistive technology for people with disabilities. The majority of applications of these alternative funding sources are "user-friendly," though many do require an extensive financial credit evaluation. Most of the alternative funding sources offer a variety of support services in addition to funding, including information about assistive technology options, needs assessment, local resources, training, education, and information for a variety of individuals, with and without disabilities. The following pages provide one-page summaries of thirteen different alternative funding programs, followed by a list of options to enhance and increase alternative funding sources. Type of Program: Revolving Loan Fund (State Government Funded/Private Service Agency Operated) Program Name: Adaptive Equipment Loan Program Operated By: Alpha One 85 E Street Suite #1 South Portland, ME 04106 (207) 767-2189 Contact: Kathy Adams Program Operation: The Adaptive Equipment Loan Program is a $5 million loan fund that makes low-interest, long term loans available to individuals with disabilities and businesses for assistive technology devices. Maine citizens and businesses may apply for loans to purchase technology which will enhance an individual with a disability's independence in the home, work place or community. Virtually any type of assistive technology, high or low tech, may be purchased with the loan funds, for individual or site accommodation use. Individuals may finance up to 100% of the cost of their equipment, and businesses may borrow up to 50% of costs, with a $50,000 maximum. Interest rates vary from 0% to the current prime rate in Boston. Funding Eligibility: Any individual, disabled or non-disabled, community organization, or business may apply for a loan to purchase adaptive equipment, as long as the equipment assists one or more persons with a disability to improve their independence, quality of life, or become more productive members of the community. Funding Caps/Restrictions: Individuals may borrow enough to cover 100% of their adaptive equipment costs, businesses may borrow up to 50% of their costs. The maximum amount which may be borrowed is $50,000, depending on the individual or businesses' credit worthiness and ability to repay. Program History: The Adaptive Equipment Loan Fund was established by a bill ratified through the state legislature and a ballot referendum in 1988, creating a sizable revolving loan fund. A board was appointed by the Governor in the spring of 1989, to oversee program operations and loan awards. Alpha One, in conjunction with the Finance Authority of Maine (FAME), established the guidelines of the program and began implementation. Over 210 loans have been awarded since the program's beginning, totalling over $1.6 million. The loans have ranged from $200 to $50,000, with an average interest rate recently under 6% for four years. Program's Funding Source: Maine State Legislature appropriation of $5 million. The loan fund is revolving, so repayments maintain the level of available funding. Program Strengths: The flexibility and broad scope of the program is unique. The program is more comprehensive than any other loan program, even including businesses and persons without disabilities in its eligibility guidelines. The repayment terms are favorable and flexible, and the maximum ceiling is favorable to purchasers of sophisticated technology systems. The program also provides assessment, education and a variety of support services for borrowers. This program is on e of the first of its kind, and a model for future programs. Program Weaknesses: The application is long and requires a great deal of financial information. Type of Program: Revolving Loan Fund (State Government Agency) Program Name: Equipment Loan Fund for the Disabled Operated By: New York State Department of Social Services Office of Financial Management - 13D 40 N. Pearl Street Albany, NY 12243 Contact: Richard Daugherty Loan Administrator Program Operation: The Equipment Loan Fund for the Disabled is a revolving low-interest loan program established through an appropriation of the New York State Legislature. Disabled residents of New York State (and their families, spouses or other related care takers) may receive low-interest loans (at 8% in 1990), repayable in two to eight years, depending on the amount of the loan. The loans may be used to purchase a variety of assistive technology "which assists the disabled person to overcome barriers to daily living." A loan committee, including representatives of many state agencies which serve people with disabilities, oversees the approval of loan applications. The application must be completed by the applicant (financial information), physician (certification of disability), and vendor (preferably a vendor who conducts business in New York). Funding Eligibility: Residents of New York State with disabilities, or their parents, spouses, siblings or other family members who support them are eligible to receive a loan under the Equipment Loan Fund for the Disabled. There are no restrictions regarding age or type of disability, though statistics indicate that the overwhelming majority of recipients are adults with disabilities, particularly over the age of 61. Proof of disability must be certified by a licensed New York State physician or psychologist. Funding Caps/Restrictions: Loans are awarded from a minimum amount of $500 to the maximum of $4,000, repayable from two to eight years depending on the total amount borrowed. Borrowers may choose from a variety of repayment plans, with the interest rate set below market at 8% (1990). The only restriction as to the type of assistive equipment which may be purchased involves motor vehicles--the legislature has prohibited the use of loan funds for motor vehicles. Program History: The New York State legislature first appropriated funds for the Equipment Loan Fund for the Disabled in 1985, allocating $50,000 for the program's start-up. By the end of 1990, the program had loaned $395,000 to 222 individuals with disabilities and their families. Currently, the program makes approximately 75 loans per year, averaging $1,779 per loan. Program's Funding Source: From 1985 through 1990, the New York State Legislature has appropriated $50,000 per year to the Equipment Loan Fund for the Disabled. While annual state funding may not continue in future years, the program currently receives approximately $5,000 per month in repayments, and is seeking Tech Act funding. Program Strengths: The repayment terms of the program are very flexible, and there is no penalty for paying off the entire loan early. The credit check process is lenient, a benefit to many people with disabilities who have no credit history at all. Finally, the variety of assistive technology which can be purchased with these funds is almost limitless. Program Weaknesses: Due to the flexibility of the program, there are many more applicants than funds available, and a long wait-list is maintained. Due to a state budget crisis, the future funding stability of the program is in question, and the program currently maintains a 20% default rate. Type of Program: Establishment of Trust and Revolving Loan Fund (State Government Agency) Program Name: Georgia's Technology Related Assistance Trust Fund Operated By: Georgia Department of Human Resources 878 Peachtree Street, N.E., Room 712 Atlanta, GA 30309-9844 (404) 894-7593 Contact: Joy Kniskern Program Operation: This program has not yet been established, but is in the process of receiving the authorization of the Georgia State Legislature and governor. Two bills have passed the state Senate and are currently in the House Appropriations Committee, awaiting approval. If ratified, a funding source to assist people with disabilities will be established via increased penalties and fees for convictions of motor vehicle and traffic violations, including driving under the influence (DUI). The first bill, an amendment to the Constitution of Georgia, would increase speeding ticket fines by two dollars per mile over the limit, and allocate an additional 5% of the original fine for DUI and reckless driving convictions to be placed in the Technology Related Assistance Trust Fund. The second bill establishes a governor-appointed commission to implement a revolving loan fund and grant program for technology devices, as well as support systems, education, research, public information, needs assessment and demonstration projects state-wide regarding assistive technology for people with disabilities, including victims of crimes. Funding Eligibility: The Commission will establish the specific program guidelines. Funding Caps/Restrictions: Not yet determined. Program History: The bills were first introduced into the state Senate as a result of a study of creative state and federal assistive technology laws. The bill was introduced in February 1991, and immediately passed and sent on to the House Appropriations Committee. It is hoped the House will pass the bills this winter, and if not vetoed by the governor, will be placed for ratification by voters in the November 1992 General Election. If ratified, the Commission would be established within eight months, with the fund fully operational 18 months after ratification. Program's Funding Source: Fines from criminal and minor traffic violations throughout the state. Program Strengths: The idea is very innovative, and the fund raising potential is strong--from $3 million to $10.8 million per year, according to program studies. The terms of the technology related assistance program cannot yet be evaluated, as they will be developed by the appointed commission. It is interesting to note that the nine member appointed commission will be made up to five individuals with disabilities, or their care takers. Program Weaknesses: The program faces quite a challenge to be ratified by the state legislature, governor and voters. Type of Program: Revolving Loan Fund (State Government Grant Funded/Private Service Agency Operated) Program Name: Guaranteed Collateral Loan Program Operated By: Assistive Technology Program United Cerebral Palsy of Southern Nevada and the Valley Bank of NV 1050 East Sahara, Suite 412 Las Vegas, NV 89104-3204 (702) 798-4433 Contact: Susan Terry Program Operation: This new program will provide up to $5,000 in loans to individuals with disabilities or their family members for the purchase of adaptive equipment and devices. The fund is to be used as a last resort funding source for individuals who have exhausted all other means of funding the assistive technology they desire. The loans require no money down, and no collateral, as the loans are guaranteed by the program. The program hopes to coordinate with vendors and traditional funding sources (e.g., Medicaid) to be a consolidation source for all funders involved in a technology purchase. The program would loan a technology purchaser the funds needed immediately, and then receive reimbursement from other funding sources such as Medicaid. Funding Eligibility: All residents of Nevada, regardless of age or type of disability, are eligible to receive a loan under this program for the purchase of any type of assistive technology equipment of device which would otherwise not be able to be purchased due to insufficient funding by traditional sources. Funding Caps/Restrictions: A funding cap of $5,000 is expected, though exceptions will be made if appropriate. Certification of disability is required, but the applicant can show proof of disability via the state's prior determination of disability. (For example, if the applicant already has received funding for assistive technology from traditional sources.) Loans may be repaid in 12 to 36 months, no collateral or down payment is required, and the interest rate is fixed at 6.5%. Program History: The Guaranteed Collateral Loan Program was established in December of 1991 through a grant from the Nevada State Rehabilitation Division. Additional funding is being sought through private donations, and funds will be maintained as loans are repaid. From the grant, $140,000 is in the bank to serve as collateral for all loans made under the program, and the interest earned remains in the account. As loans are repaid, these funds become available for new loans. The Valley Bank of Nevada does not have locations in every county, but other banks in 12 rural counties have agreed to participate by assisting applicants with the necessary paperwork, and forwarding all applications to the program. The program is thus available statewide on a local level, an important aspect for this rural state. Program's Funding Source: A grant from the Nevada State Rehabilitation Division provided the necessary funds to begin the revolving loan fund. Additional private donations are being sought, and it is expected that the program will fund itself as loans are repaid and interest is earned. Program Strengths: The program is designed to be as user-friendly as possible, allowing flexible certifications, geographically accessible application locations, assessment, training, and other resources, as well as liberal eligibility and repayment terms. The program's desire to coordinate and consolidate with other funding sources is unique, and very favorable to the technology purchasers. There are no restrictions as to the type of equipment which may be purchased. Program Weaknesses: The loan funds are available only to individuals who have exhausted all other avenues of funding for the technology they desire. Type of Program: Revolving Loan Fund (Federal Government Grant Funded/Private Service Agency Operated) Program Name: Technology Related Loan Fund Operated By: National Easter Seal Society 70 East Lake Street, Suite 90 Chicago, IL 60601-5907 (312) 726-6200 (Voice) (312) 726-4258 (TDD) Contact: William Watson Loan Fund Officer Program Operation: This program was established by a two-year grant from the U.S. Department of Education, with the National Easter Seal Society providing an additional 13 percent of funding. Funds are available to individuals with disabilities nationwide for the purchase of a variety of assistive technology devices, though the program tends to concentrate on computer technology, as that is the area of expertise of program staff. The project is intended to be a demonstration study in the viability of a nationwide direct loan fund, facilitating the access to assistive technology of people with disabilities. The lengthy application requires several supporting financial documents, for an extensive credit evaluation. Funding Eligibility: To receive funds, the applicants must be an individual with disability, whose family income is lower than 120% of the U.S. median, or $31,171. "The technology-related assistance which is purchased must maintain or enhance [the individual's] level of functioning in any major life activity." Certification of disability is required by a physician, as well as a quote from the vendor, and a $25 application fee is required. Funding Caps/Restrictions: Loans are typically made for 75% of the cost of the purchase, though exceptions will be made, up to 90% of the total cost; the interest rate is one percent over the current market rate. Loans thus far have averaged between $1,800 and $2,500, repayable in one to three years. The program has no restrictions on the type of technology which can be purchased, though the program focuses on computer technology and screen readers for the blind. Program History: The first loans were made in February of 1991. The program was established by a grant from the U.S. Department of Education, National Institute of Disability and Rehabilitation Research. The program has been funded to run for only two years, but is intended to be a demonstration model for other similar programs throughout the country. Program's Funding Source: The National Institute of Disability and Rehabilitation Research, U.S. Department of Education, provided $144,000 total program dollars; $85,000 for loans, and the National Easter Seal Society contributed an additional 13%. Program Strengths: This program is the first national loan fund of its kind. The guidelines are intended to be flexible, and all cases are considered on an individual basis. The staff of the program are very knowledgeable about a variety of computer technologies, and provide potential technology users with a great deal of education about technology options, usage and funding. Thus far, the program has received over 1800 contacts, most of which have been provided basic education regarding technology. Program Weaknesses: The program is not designed to accommodate first time borrowers, and a great deal of financial information is required of applicants. Additionally, while the program has no formal restrictions as to the types of technology which may be purchased, the focus is on computer technology as that is the strength of program staff, though the guidelines are broad as it is a demonstration project. Type of Program: Revolving Loan Fund & Discount (Private Service Agency & Manufacturer) Program Name: American Foundation for the Blind Loan Program Operated By: American Foundation for the Blind Special Fund, Inc. 15 West 16th Street New York, NY 100 (212) 620-2117 Contact: Sharon Rice Program Operation: The AFB Loan Program makes loans to individuals who are legally blind or visually impaired for the purchase of the Kurzweil Personal Reader (KPR), an optical character recognition system which reads print and transfers it into synthetic speech, and just recently, loans are also available for the purchase of any other Kurzweil product. The loans, along with a 30% discount for the KPR, are available to individuals who would not otherwise be able to afford the Kurzweil devices. Borrowers are required to pay 10% down payment, and then receive a loan for the remainder of the retail cost, at an interest rate 5% below market, for 48 months. Funding Eligibility: Applicants must indicate their need for the Kurzweil device they request, including employment, education, vocational training, or community service work. An extensive credit evaluation is conducted to determine the applicant's financial need, and ability to repay the loan. Applicants who earn less than $25,000 generally need a co-signer to the loan. Funding Caps/Restrictions: The retail cost of the device is loaned, minus a 10% down payment, and a 30% discount for the KPR. The KPR retails between $8,000 and $12,000 depending on the features. Certification of visual impairment is necessary, as is demonstration of need. Program History: The AFB Loan Fund was established in 1989 by a commitment from AFB and Xerox Corporation of one million dollars. The program works with the Bank of Boston, which approves the credit history and financial background of all applicants. In two years, the program has maintained a 0% default rate, which it hopes to maintain. Approximately 50 applications per year are accepted for loans, though an additional 50 or so are rejected by the bank. The bank no longer requires a dollar for dollar guarantee of each loan, but allows the program to maintain only $20,000 in the account as collateral against $100,000 in loans. Xerox and AFB hope to take back their initial investments in a few years, and additional financial supporters are being sought. Program's Funding Source: AFB and Xerox provided the initial $1 million to establish the program. These funds provide the interest rate subsidies, and the manufacturer of the KPR provides a 30% discount on that device. Program Strengths: The loans are guaranteed by AFB through the Bank of Boston, so the credit evaluation terms can be flexible. The interest rate subsidy and discount are quite favorable to the borrower. The program's 0% default rate makes establishment of such a program look quite favorable to investors. Program Weaknesses: In order to maintain such a favorable default rate, the bank is not as flexible in its requirements as it could be. The financial need assessment part of the application is elaborate, and the repayment terms are quite specific and well structured. First time borrowers with no credit history are acceptable within the guidelines of the program, though they may be intimidated by the formality of the terms. Funds are available only for the purchase of Kurzweil products (until recently, only the KPR in particular), and are not available for other types of assistive technology. Type of Program: Revolving Loan Fund (Private Service Agency) Program Name: Low-Interest Loans for Technology Operated By: National Federation of the Blind Committee on Assistive Technology 3530 Dupont Avenue, North Minneapolis, MN 55412 (612) 671-3131 Contact: Curtis Chong Program Operation: The Committee on Assistive Technology of the National Federation of the Blind offers very low-interest loans to individuals with sight impairments for the purchase of assistive technology devices. A variety of computer technology and related devices which aid blind individuals may be purchased with the loans, so that individuals who are blind or have visual impairments may "go about the business of living a normal, everyday life." Funding Eligibility: Any individual who is blind may qualify to receive a loan from NFB, for the purchase of computers and related technology equipment for the visually impaired. Funding Caps/Restrictions: The maximum loan amount is $3,000, repayable in four years with 3% interest. Program History: The program was begun just a year ago, and has made loans to approximately 25 people to date. All program funding is from private contributions and funds generated from the National Federation of the Blind's Committee on Assistive Technology. The program is rather informal, and does not require or maintain the types of records which other programs do. Program's Funding Source: Private contributions and funds contributed by the National Federation of the Blind. Program Strengths: The less formal approach to the program allows for greater flexibility. Additionally, funds are available for a variety of equipment, as opposed to one specific device or manufacturer. Finally, the subsidized interest rate is very favorable to the borrowers, the lowest of any of the revolving loan programs. Program Weaknesses: The program is not widely publicized, and even obtaining information for inclusion here was somewhat difficult. Type of Program: Revolving Loan and Grant Fund (Private Service Agency) Program Name: Klatt Assistive Technology Fund Operated By: Boston Children's Hospital Communications Enhancement Center 300 Longwood Avenue Boston, MA 02116 (617) 735-6466 Contact: Howard Shane Program Operation: The Klatt Assistive Technology Fund provides low-interest loans, and occasionally grants to people with disabilities for the purchase of assistive technology devices. The funding availability is not advertised, and the funds are available only to individuals who are provided services at Boston Children's Hospital's Communications Enhancement Center. The program is very informal, with no strict guidelines or restrictions, but the funds are regarded as a last resort resource. Individuals who have exhausted all other potential funding sources, public and private, and would not otherwise be able to purchase an assistive technology device, are offered funds by the Center from the Klatt Assistive Technology Fund. Those individuals or families who are determined to have the ability to repay the funds are given low-interest loans; individuals or families who are unable to repay the funds are given outright grants for the purchase of the necessary equipment. Funding Eligibility: The funds are available to individuals with disabilities who are seen in the Boston Children's Hospital Communication Enhancement Center. There are restrictions regarding age or type of disability, as long as the assistive technology being purchased is based on the assessment and recommendation of the Center. Financial need is generally necessary, though there is no rigid credit check process. Funding Caps/Restrictions: There are no set funding caps in this program, for either grants or loans. Awards are based on the amount of funding necessary for the purchase of the specific device. Program History: The Klatt Assistive Technology Fund was established in 1989, and to date has served approximately 50 people with disabilities. (Note: No formal records or data are maintained.) The fund has purchased a variety of assistive technology, from full communications systems to a mouthstick. Program's Funding Source: The Klatt Assistive Technology Fund was established through a $200,000 grant from Digital Equipment Corporation as a one-time grant. Currently, there are no concrete plans to seek other funding sources. Program Strengths: The informality of the program allows for a great deal of flexibility for the borrowers/grantees. There are no strict guidelines for the assessment of an individual or family's credit history or income level, nor are there strict repayment terms. Funding is also closely linked to extensive assessment, education, training and support from the staff of the Communications Enhancement Center. Program Weaknesses: Funds are available only to those individuals who are served by the Communications Enhancement Center, and are not even widely publicized to potential technology users of the Center. While there are no established restrictions on the type of assistive technology which may be purchased with the funds, typically funds are used for equipment and devices which are recommended by the Communications Center staff, e.g. communications devices. Type of Program: Lending library/special needs center Program Name: Duluth Public Library Special Needs Center Operated By: City of Duluth 520 West Superior Street Duluth, MN 55802 (218) 723-3809 (Voice or TDD) Contact: Randall E. Vogt Coordinator Program Operation: The Duluth Public Library's Special Needs Center provides public access to computers in cooperation with the Computer Assisted Literacy Center (CALC). The program includes special adaptations to all equipment for use by individuals with disabilities. The Special Needs Center was established to enhance access to the Library's materials, programs and services. The goal has not been to provide separate services, but to ensure that people with various disabilities can utilize the library's resources. The program serves seven counties in Minnesota by providing the following services for people with disabilities: A. Access to equipment for individuals with visual disabilities; B. Adapted computer equipment for a variety of disabilities; C. An adapted toy lending library; D. Computer Assisted Literacy Center; E. Sign Language Video Collection; F. Disability Awareness Projects. Program Eligibility: All individuals, disabled or non-disabled are encouraged to use the Center and the Library as independently as possible. People unable to use the Center or other Library services independently must be accompanied by an attendant who will remain with the persons while they use the Center. During the initial visit to the Center, staff will meet the user to discuss goals and objectives for center use. Program History: Duluth Public Library was designed to be completely accessible to people with disabilities. It is the philosophy of the Library that access to the library goes beyond getting through the front door. As a result, the Special Needs Center was established to enhance access to all the library services, resources, and programs. The program began with grant funding for the purchase of a Kurzwiel Personal Reader and grew to serve more individuals with a variety of disabilities through a range of technology. In 1991, the Center answered 456 requests for information. Of these, 179 were specifically in regard to assistive technology. People with disabilities used the Center's computers approximately 426 hours and checked out 527 pieces of software. In addition, 306 adapted toys were checked out. Program's Funding Source: A grant for $27,500 was initially secured through the Library Services and Construction Act to purchase a Kurzweil Reading Machine and provide staff training. As discussions continued, it became evident that a Center would need to be created to house the Kurzweil. Staff time would be needed to train library patrons on how to use the Kurzweil and operate the Center. Foundation grant support was obtained for years two and three of operation for $25,000 each. The grants provided additional equipment and covered personnel costs. The City of Duluth then provided funding for Center staffing and operational costs in the annual Library budget beginning in 1983. Grant funds have continued to be a source of funding for new and innovative methods of serving people with disabilities within the community. During the past 10 1/2 years, the Special Needs Center has benefited from grant funding in the amount of $132,000. Federal and State support amounts to $72,000 or slightly more than 50%. Program Strengths: The Special Needs Center allows people with disabilities and members of their families to know what assistive technology is and what impact it could have on their lives. Included in this knowledge is the opportunity to try out the device to determine its usefulness for the individual before the item is purchased. The adapted toy loan program allows parents to check out toys adapted with switches. Prices for these toys are usually higher than toys purchased off the shelf. It is beneficial for the family to know if the toy and/or adaptation is appropriate for the youngster before money is spent. Likewise the availability of computers equipped with assistive devices in a library setting is also a valuable resource. Program Weaknesses: Limited financial resources. Type of Program: State Income Tax Check Off (State Government Agency) Program Name: Illinois Assistive Technology Tax Check Off Operated By: IL Department of Rehabilitation Services 411 East Adams Springfield, IL 62701 (217)522-7985 Contact: Penni Cooper Executive Director, IL Assistive Technology Project Program Operation: Beginning in the summer of 1992, Illinois residents with disabilities will be eligible to receive grants from the Department of Rehabilitation Services for the purchase of assistive technology devices. The fund is being established through the donations of Illinois residents who choose to contribute one dollar or more on their 1991 state income tax returns. The rules and guidelines for the program are currently being developed, but local programs with contracts with the IATP will be asked to administer and promote the fund on a local level. Grant applications will be forwarded to a central committee of technology specialists and users for approval. Funding Eligibility: Any resident of Illinois with proof of a disability, and family income under $50,000 (not yet final), who has been denied funding for a particular assistive technology device, may receive a grant under this program. A physician and vendor will provide certifications on the application, and financial history, proof of denied funding, and need for the device will also be required. Funding Caps/Restrictions: Grants will be awarded for a maximum of $10,000, though other funding sources may be used to cover the actual purchase costs of any equipment or device. Applicants are encouraged to seek other funding sources. An assessment by a committee appointed physician or therapist, particular for high tech devices, may be required. Program History: This is the first year that the Illinois State Legislature has allowed the IATP to participate in the tax check off program, which was first enacted in 1984. In order for the program to be eligible to participate in the tax check off in the following year, a program must raise at least $100,000 through the check off. Over $6,000 has been spent by IATP in a publicity campaign to generate funds on the check off as ten different programs are listed on the 1991 state tax return. Tax payers may contribute any dollar amount they choose. The tax check off program is typically quite successful, generating as much as $250,000 one year for a single program. The actual details of grant awarding are still being worked out by program staff, with the first fund allocations to the program expected in June. The first grants are expected to be made in late summer, 1992. Program's Funding Source: State of Illinois income tax payers, as allowed by the Illinois State Legislature. Program Strengths: The funds will be available as outright grants, available for any type of assistive technology equipment. Funding eligibility is expected to be based on a family income of $50,000 or less, with exceptions allowable (such as due to high medical bills). These broad terms will likely generate very high numbers of applicants. Program Weaknesses: The fund is competing against several worthwhile tax check off programs for funding this year, including support for individuals with AIDS and Alzheimers. The funds are promoted as a payment of last resort, and the paperwork to support this will undoubtedly be less consumer friendly than some other programs. Type of Program: Credit Agreement (Manufacturer) Program Name: The Mitarai/Canon Optacon Financing Program Operated By: Telesensory 455 North Bernardo Avenue Post Office Box 7455 Mountain View, CA 94039-7455 (415) 960-9064 Contact: Gail Zink TSI Credit Collections Department Program Operation: The Optacon Financing Program makes loan funds available only for the purchase of an Optacon II, an assistive technology device for the blind. Funded by Canon U.S.A., the company which also helped fund the development of the Optacon, loans are made at a subsidized interest rate; borrowers pay only 4% per year. Loans are made for up to a three year period, requiring a ten percent down payment, based on the retail cost of the Optacon. The application requests minimal financial information, and the application and loan are most similar to a credit card application and terms. Funding Eligibility: Any purchaser of an Optacon II is eligible for credit funds, subject to a credit check. Funding Caps/Restrictions: Credit is offered for up to 90% of the retail cost of an Optacon II, or approximately $3,200. With a 4% interest rate, the Optacon II purchasers repay approximately $100 per month for 34 months. Program History: In an interesting personal story, the credit program, and the development of the Optacon were established when the son of the founder of Canon studied electrical engineering with the creator of the Optacon, the Chairman of Telesensory. Their continued strong relationship is the basis for this alternative funding program. Program's Funding Source: Canon, U.S.A. provides the entire financial support for the program. Program Strengths: The terms of this program are flexible and the interest rate is well below market. The application process is brief and simple, and as the credit is offered as an Agreement between Telesensory and the purchaser, certifications and back-up paperwork are not required. Program Weaknesses: The credit terms are only available to purchasers of the Optacon II, and not any other types of assistive technology devices. Type of Program: Reimbursement for Vehicle Adaptation (Manufacturer) Program Name: Mobility Access Program Operated By: Volkswagen U.S.A. 3800 Hamlin Road Auburn Hills, MI 48326 1-800-444-VWUS (hotline) (313) 340-5026 (program administration) Contact: Heidi Peter Commercial & Recreational Products Group Coord. Program Operation: Volkswagen U.S.A. offers a $1500 reimbursement to purchasers of its Vanagon, or $500 to purchasers of any Volkswagen passenger car who make accessibility adaptations to the vehicle. With the 1993 editions of Volkswagen vehicles, this reimbursement will be lowered to $1000 for the new Eurovan, the successor to the Vanagon. Reimbursements are based on the filing of a credit form which includes a copy of the purchase agreement and proof of disability or adaptive use application. Funding Eligibility: Any purchaser of an new Vanagon or Volkswagen passenger car with need for accessibility adaptations is eligible to receive this reimbursement, regardless of their financial situation. Reimbursements are paid to either the purchaser or Volkswagen dealer, according to the terms of the purchase agreement. Funding Caps/Restrictions: A limit of $1500 is currently in place for all new Vanagons, $500 for all Volkswagen passenger cars, and $1000 will be the limit for the 1993 Eurovans. Program History: Reimbursements are available to individuals who adapt vehicles for themselves to drive, or for adaptations made for family members with disabilities. There is no record of any adaptations having been made for drivers to drive directly from their wheelchairs, (as opposed to the vehicle's seat). Braun and IMS are currently studying the Eurovan to determine if a drop floor conversion would allow a person to drive the van directly from their wheelchair. Many features of the Vanagon allow for accessibility without any modifications, including the door widths (for lifts) and floor to ceiling heights, thus adaptations may be less extensive and thus less costly for Vanagons than for other vehicles. Program's Funding Source: Volkswagen, U.S.A. Program Strengths: Reimbursements are offered to any individuals who require adaptations to their new Volkswagen vehicles, regardless of income level. The Vanagon, and new Eurovan have design features with accessibility in mind, such as the side and back door width, (lift accessible), and floor to ceiling height. The hotline offered by Volkswagen and claim application are user-friendly, and the availability, dependant on each particular dealer, of reimbursement directly to the dealer as opposed to purchaser is also consumer-friendly. Program Weaknesses: The reimbursements are obviously available only to Volkswagen purchasers, and are particularly targeted at Vanagon buyers. The accessibility marketing literature offered by Volkswagen contains no mention of the reimbursements. Type of Program: Reimbursement for Vehicle Adaptations (Manufacturer) Program Name: Physically Challenged Assistance Program (P-CAP) Operated By: Chrysler Corporation P.O. Box 19 Detroit, MI 48288-0159 1-800-255-9877 (hotline) Contact: John N. Martel Program Operation: Individuals with disabilities, or family members of individuals with disabilities, can receive from Chrysler up to a $500 reimbursement for any necessary adaptations made to new Chrysler vehicles. Adaptations may include modifications for the driver of the vehicle, or adaptations to the passenger seats for other disabled passengers. The program serves as a resource for individuals with disabilities, providing information about vehicle accessibility and adaptations, referring individuals to local resources for adaptations and driver training. Funding Eligibility: All individuals with disabilities or their family members who make adaptations to new Chrysler vehicles are eligible for this reimbursement, regardless of their income level. Funding Caps/Restrictions: Reimbursements are made for up to $500 towards adaptations made on new Chrysler vehicles. Program History: The Physically Challenged Assistance Program was first established by Chrysler five years ago, in 1987. Though exact statistics are not available, it is estimated that approximately 2,000 reimbursements are made each year, totalling "thousands" to date. Program's Funding Source: All reimbursements are provided by the Chrysler Corporation. Program Strengths: The information data base that Chrysler maintains of local resources for driver training and adaptations is unique. The toll-free hotline was receiving over 25 calls a day five years ago, and the numbers have steadily grown. Program Weaknesses: The reimbursement ceiling is only $500, while many adaptations can cost up to $12,000. While this amount clearly helps, it is minimal. Type of Program: Employee Accommodations Program (Federal Government Employer) Program Name: Computer/Electronic Accommodations Program (CAP) Operated By: Defense Medical System Support Center U.S. Department of Defense 5109 Leesburg Pike, Suite 502 Falls Church, VA 22041-3201 (703)756-0976 Contact: Dinah Cohen Director, CAP Program Program Operation: Beginning in FY 1990, the CAP Program was established to provide resources, education, training and assistive technology accommodations to all new and currently employed DoD employees with disabilities. The program is the largest of its kind in the federal government, providing assessment, training and technology devices to DoD employees with hearing, vision or mobility impairments. The CAP Program works closely with supervisors of every DoD department, providing educational seminars to promote the hiring of individuals with disabilities. Additionally, the program pays for such accommodations as the training of sign language interpreters for employees. Funding Eligibility: Any DoD employee with a hearing, vision, or mobility impairment may be provided with any accommodation, technological or otherwise, which will enable or enhance his or her ability to work in the DoD community. Everything from Kurzweil readers to TDDs to sign language training has been provided, for employees in all grade levels of the DoD. Funding Caps/Restrictions: No caps or restrictions are listed in any of the program's extensive materials. The application process is user-friendly and brief, with the most important requirement appearing to be the appropriate authorizations of the employee's supervisors and CAP program staff. Program History: The program, first begun in FY 1990, has been allocated 10.7 million dollars through 1994. In 1991 alone, 1.5 million was expended on equipment and accommodations, as well as sign language training. An additional $41,000 was spent on information dissemination, including seminars for DoD staff and other federal employees, videos, and printed materials. In its first year, the program received 56 requests for accommodations, and over 850 the second year, due to extensive information dissemination. Of the 850 accommodations requests, over 500 related to hearing impairment, over 300 related to vision impairment, and only twenty were mobility related accommodations. Over 50 new employees received accommodations in FY 1991. Program's Funding Source: The entire 10.7 million dollar budget of the CAP program is supplied by the Department of Defense. Program Strengths: The extent of funding and its stability are unique in this program. Employees with disabilities are being actively recruited and accommodated, with a great deal of program flexibility, and staff support. Everything from the promotion of the program and education, to assessment, training and maintenance support make the program a highly comprehensive alternative funding source. Program Weaknesses: While not limited in any way in the program literature, the focus of recruitment and accommodations efforts appears to be for individuals who are hearing or visually impaired, as opposed to those with mobility impairments. Little mention is made of speech impairments in particular, which are grouped with hearing impairments; the available hearing/speech impairment accommodations which are promoted do not include devices such as speech synthesizers, but instead all involve hearing impairment accommodations. Type of Program: Equipment Loan Program for Telephone Accommodations (State agency) Program Name: Deaf Equipment Acquisition Fund Trust (D.E.A.F. Trust) Operated By: Deaf and Disabled Telecommunications Program (DDTP) 1939 Harrison Street, Suite 420 Oakland, CA 94612 (510) 874-1410 Contact: Shelley Bergum Executive Director Program Operation: The Deaf and Disabled Telecommunications Program in the State of California provides telecommunications equipment (and services) to deaf and disabled individuals. Any individual with a disability which affects his or her ability to use a standard telephone may loan equipment from the D.E.A.F. Trust, via their local telephone company. The equipment includes a variety of technological accommodations, from TDDs to speaker phones, memory phones, amplifiers, remote control telephones, and more. In all, 25 different types of equipment are available, free of charge, so that individuals with disabilities may access their basic phone service. The program is entirely funded by a .3% surcharge on all intrastate telephone service for all residents of California. Funding Eligibility: Any individual with a certified disability, either vision, hearing or mobility related, which impairs the individual's ability to use a standard telephone, is eligible to receive adaptive equipment from DDTP. Disability must be certified by a physician. Funding Caps/Restrictions: No caps or restrictions are listed, but the equipment is loaned to the customer, and remains the property of the D.E.A.F. Trust. Customers must choose between the available 25 types of equipment. Program History: This program was begun initially in 1981, when the California Public Utility Commission (CPUC) and the legislature established the .3% surcharge and created the D.E.A.F. Trust. At this time, the California Relay Service was begun, (operated also by DDTP), and TDDs were available to customers. In 1987, the program was expanded to include all types of disabilities and a variety of other equipment. The program provides maintenance and upgrades to all customers, and customers made trade-in their equipment for different devices, upgrades or repairs. Since 1981, well over 200,000 devices have been loaned through the program. This program is one of the largest and most comprehensive of its kind, as well as one of the first. Over half of the states now operate similar, though typically more limited equipment distribution programs. Program's Funding Source: The program's approximate annual budget of $31 million is raised entirely via the .3% surcharge on all intrastate phone service, assessed each month on every telephone subscriber's bill. The funds are all placed in the general D.E.A.F. Trust, and then local phone companies are reimbursed for the equipment and services they provide to individuals with disabilities. Program Strengths: California's program is more comprehensive and effective than most. As the ADA leads to the establishment of relay services, often accompanied by equipment loan programs in all states, California continues to be a leader. The continual maintenance, upgrades, and user-friendly application and acquisition process are all exemplary, as is the inclusion of all types of disabilities, not just the hearing impaired. Program Weaknesses: Because the equipment is loaned by the local phone company, moving involves much more than changing telephone service, and individuals who move out of state "lose" their equipment. Type of Program: Telecommunications Devices for the Deaf (TDD) and Specialized Customer Premises Equipment (SCPE) Program Name: TDD/SCPE Distribution Program Operated By: New England Telephone and Telegraph Company Telesector Resources Group, Inc. 441 Ninth Avenue New York, N.Y. 10001 Contact: Halina Malinowski Associate Director Purchasing (212) 502-7526 Program Operation: Beginning in 1991, the TDD/SCPE Distribution Program was established to provide a TDD equipment and a SCPE distribution service for any residential subscriber who is eligible. Each common carrier must provide upon request of a certified subscriber, TDD or SCPE equipment to the requesting subscriber. Equipment categories include: 1) TDD; 2) Telebraillers 3) Amplifiers; 4) Signalers; 5) Artificial Larynxes; 6) Telephone Sets; 7) Specialty Items (relay switches; misc, special assembly, headsets, large number overlays, large visual adjuncts for TDD). Program History: In December 1990, the Governor of the Commonwealth of Massachusetts signed into law Chapter 291 of the Acts of 1990, which established a program to provide that every common carrier shall provide and maintain a TDD equipment distribution service and a SCPE distribution service, and shall make such services available to any residential subscriber who is eligible. Compliance by every common carrier was required by July, 1992. Funding Eligibility: Resident of Massachusetts who are certified by the Massachusetts commission for the Blind as sufficiently visually impaired or blind to be in need of SCPE equipment, or certified by the Massachusetts Rehabilitation Commission as sufficiently disabled in need of SCPE; or residents certified by the Massachusetts Commission on the Deaf and Hard of Hearing as sufficiently deaf or hard to hearing to be in need of TDD or SCPE equipment. Funding Caps/Restrictions: Services are provided free of charge, or at reduced rated if the department of public utilities first certifies that the subscriber is unable to afford the equipment at full cost. Equipment vendors are selected by means of an RFP to enter into a contractual arrangement with New England Telephone (NET). In addition, vendors are required to provide maintenance, replacement, and repair of all parts and training if requested by NET. Program's Funding Source: The program is financed by revenue from a surcharge on directory assistance calls. All NET subscribers are charged at a rate of .35 cents per call to directory assistance after ten free calls. Program Strengths: According to program administrators, the program more than pays for itself. Suggestions 1. Establish systems of information exchange and referral both regionally and nationally for individuals with disabilities seeking funding, as well as agencies and programs wishing to start alternative funding programs. Encourage existing alternative funding programs to disseminate information about program start-up and operation to other potential alternative funding sources and interested parties. 2. Provide central avenues of networking, and encourage information exchange and coordination between the alternative funding sources, as well as with the traditional funding streams. 3. Create a funding resource for alternative funding programs. Connect private corporate donors with alternative funding programs, or provide start-up grants enabling the establishment of revolving loan funds. This could be a part of a corporation for public technology concept. 4. Provide federal incentives, such as matching funds, to state governments to allocate state dollars for the start-up of revolving loan funds with flexible terms. 5. Provide incentives to banks to provide loans to people with disabilities without a prior credit history for the purchase of assistive technology. 6. Provide incentives to manufacturers for low-interest loans, below-market rate, for the purchase of assistive technology. 7. Offer federal and state grants for start-up of revolving loan programs. 8. Offer additional incentives for employers to operate accommodations programs for their employees, in conjunction with the ADA. (Department of Defense Model). 9. Encourage tax check off programs at the federal level and in every state to generate funds for the funding of assistive technology. Section Six: Lending Practices of Financial Institutions NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Financing of Assistive Technology: Lending Practices of Financial Institutions by John De Witt David Colson of De Witt & Associates, Inc. January, 1992 FINANCING OF ASSISTIVE TECHNOLOGY: LENDING PRACTICES OF FINANCIAL INSTITUTIONS TABLE OF CONTENTS EXECUTIVE SUMMARY - iii - OBJECTIVE Page 1 METHODOLOGY Page 2 RESULTS Page 5 TRADE ASSOCIATION SURVEY Page 5 Table 1: Trade Association Tabulations Page 6 LENDERS SURVEY Page 7 General Results Page 7 Specific Loan Programs Offered Page 9 Secured Lending (other than auto or mortgage) Page 9; Unsecured Loans Page 9; Mortgage Loans Page 10; Auto Loans Page 10 Table 2b: Respondents That Offer Secured Loans, Other Than Auto or Mortgage Page 12 Table 2c: Respondents That Offer Secured Loans, Auto and Mortgage Page 13 Use of Cosigner/comaker in Lending Decision Page 14 Table 3: Use of Cosigner/comaker by Respondent Page 16 Acceptance of Mitigating Circumstances Page 18 Loan Applicant Page 18; Cosigner/comaker Page 19 Table 4: Mitigating Circumstances Page 20 TABLE OF CONTENTS, continued Voluntary Comments Page 22 Governmental Regulations/Programs Page 22; Miscellaneous Comments Page 23 Table 5a: Other Voluntary Comments, Government Regulations/Programs Page 25 Table 5b: Other Voluntary Comments, Miscellaneous Page 26 Tone of Interviews Page 28 Table 6: Tone of Interviews Page 28 SURVEY OF SUPPLIERS OF CREDIT SCORING SYSTEMS Page 29 CONCLUSIONS Page 30 TRADE ASSOCIATIONS Page 30 LENDERS SURVEY Page 30 SURVEY OF CREDIT SCORERS Page 34 SUGGESTIONS/SOLUTIONS Page 36 APPENDIX A-1: Map of U.S. Census Regions and Divisions Page 38 APPENDIX A-2: Chart of Institutions Contacted by Census Region and Division Page 39 APPENDIX A-3: List of Lenders Surveyed Page 43 APPENDIX B: LENDER QUESTIONNAIRE Page 46 APPENDIX C: List of Trade Associations and Credit Scoring Systems Page 52 ATTACHMENTS Page 53 FINANCING OF ASSISTIVE TECHNOLOGY: LENDING PRACTICES OF FINANCIAL INSTITUTIONS Executive Summary This report supplements information being collected and analyzed in conjunction with the National Council on Disability's study of the financing of assistive technology, as mandated by Title II of the Technology-Related Assistance Act of 1988. De Witt & Associates surveyed a broad spectrum of financial institutions nationwide to develop a preliminary understanding of current lending practices toward individuals with disabilities. Additional interviews with the corresponding trade associations as well as suppliers of credit scoring systems provided further perspectives on the subject. The research found a high degree of concern and sensitivity within this community to the issues involved. Often, respondents voiced a willingness to act favorably on mitigating circumstances that may disqualify an individual with a disability for a loan to purchase assistive technology. However, laws, regulations, rules or guidelines identified in this study can interfere with this process. The lending standards, that seem so daunting when one seeks a loan, really comes down to two basic criteria.  Will the loan be repaid?  Will the loan and/or the financial institution's portfolio of loans meet the applicable laws and regulations that govern that lender's operations? The results of this study led to several important suggestions for both private and public initiatives: 1. Work with trade associations on joint efforts to make their members aware of the needs of individuals with disabilities, develop a dialog on avenues to meet these needs and establish model programs that members can test within their own organizations. 2. Investigate creative approaches such as: special lending standards for needy individuals with disabilities; financing programs that manufacturers of assistive technology devices can use to facilitate device purchase; and loan guarantee programs through cooperative initiatives with governmental entities, disability-related organizations and the financial community. 3. Thoroughly investigate laws, regulations and practices that have been identified as potentially facilitating or inhibiting the making of loans to individuals with disabilities. For those that facilitate the process, make sure that the inclusion of those with disabilities is explicit. For those that inhibit the process, seek modifications to ease the granting of such loans. 4. Establish educational programs for individuals with disabilities to help them understand the lending process, its nuances and vagaries, and what they must do to maximize their chances of being approved for the loan they require. Implementation of these suggestions will produce a set of well-developed options for special broad-based lending initiatives to finance assistive technology devices. FINANCING OF ASSISTIVE TECHNOLOGY: LENDING PRACTICES OF FINANCIAL INSTITUTIONS I.Objective This report is designed to supplement information being collected and analyzed in conjunction with the National Council on Disability's study of the financing of assistive technology, as mandated by Title II of the Technology-Related Assistance Act of 1988. De Witt & Associates has designed and conducted a "mini-study" to develop a preliminary understanding of lending practices regarding funding of assistive technology devices for individuals with disabilities, primarily through a survey of over fifty financial institutions nationwide. Among the specific objectives of the survey were:  to ascertain factors that facilitate or inhibit the application for, obtaining of and repayment of loans by individuals with disabilities for the acquisition of assistive technology;  to cover as broad a spectrum of financial institutions as practicable, both in terms of type and size, as well as geographic locale;  to obtain information of both a quantitative and qualitative nature from executives with responsibilities for policymaking or interpretation. II.Methodology A telephone survey was chosen because this technique yields a higher response rate than a written survey. The survey instrument was designed with extensive open-ended questions to develop the maximum amount of information, even though this design makes quantitative analysis more difficult. This was important because many responses could not be anticipated. In the context of the study's fundamental purpose, to learn about policies and practices that facilitate or inhibit the financing of assistive technology to individuals with disabilities, quantitative analysis is essential. The types of loans that an individual with a disability might consider for funding an assistive technology device are:  Secured loans: with the assistive technology device as collateral.  Unsecured loans: including installment loans, unsecured lines of credit, term loans, credit cards, etc.  Mortgage loans: home equity loans or the possibility of "cash-out refinancings."  Auto loans: funding specifically for a modified automobile or van. Because banks, savings & loans and credit unions could potentially supply any of these kinds of financing, they constituted a major focus of the work. Additionally, De Witt & Associates surveyed lenders specific to the mortgage market: mortgage companies; mortgage brokers; and the mortgage operations of insurance companies. Similarly for the auto industry, financing subsidiaries of auto makers were also included. Financing by manufacturers of assistive technology devices was specifically excluded because:  these manufacturers generally are small with limited financial resources; thus, few are in a position to undertake loan programs;  extending the survey to adequately sample those few manufacturers of assistive technology with loan programs would have been beyond the primary focus of this mini-study. Using the parameters described above, De Witt & Associates developed a contact list of 57 financial institutions to survey:  Banks/Savings & Loans: a "large" and a "small" institution of each type from each of nine U.S. Department of Commerce Bureau of the Census divisions, producing a list of 36 institutions.  Credit Unions: equal numbers of "large and "small" credit unions from each of the four U.S. Department of Commerce Bureau of Census regions, adding eight more institutions.  Mortgage Lenders: five firms representing brokers, companies or subsidiaries of insurance companies.  Finance Companies: three major general purpose finance companies and two financing subsidiaries of major auto makers.  Credit Card Companies: Two major non-bank credit card issuers and the credit card operations of one major bank. Additional considerations in choosing contacts for the survey were: to balance metropolitan and rural areas; and to include a broad representation of states. Appendix A provides a map of the U.S Department of Commerce Bureau of Census regions and divisions; a table describing the geographic location of contacted lenders by city/state and Census division/region; and the names of lenders contacted. In preparation for the survey, De Witt & Associates interviewed an extensive selection of trade associations that represent various components of the consumer finance industry. As an additional facet of the study, three major suppliers of credit scoring services were interviewed to develop an understanding of how these systems may impact the borrowing capabilities of individuals with disabilities. Appendix B provides the list of trade associations contacted and the names of the three principal firms engaged in credit scoring systems. Appendix C provides the survey instrument, as modified based upon interview experience. While this instrument appears highly structured, all judgmental areas on the part of the responding firm were asked in an open-ended style; voluntary comments were encouraged. III.Results A. Trade Association Survey Ten of the thirteen trade associations contacted for this study provided interviews. (See Table 1 on page 6.) Most respondents (70%) recognized the responsibilities of their members in the context of provisions of the Americans with Disabilities Act (ADA). Half of those interviewed had programs in place to disseminate information about member responsibilities under the Act. Respondents showed a high level of recognition and commitment towards overcoming the architectural barriers posed to individuals with disabilities. Conversely, most demonstrated a low level of recognition towards meeting the needs of individuals with disabilities for access to loans to fund the purchase of assistive technology. Despite this, two have disseminated materials to members to promote the understanding of the borrowing needs of those with disabilities.[**] However, none of the associations had programs to collect data from members regarding member performance in lending to individuals with disabilities. In fact, only a minority of the respondents (20%) mentioned, as voluntary responses, the equal access/nondiscrimination provisions of the Equal Credit Opportunity Act (ECOA) as applying to individuals with disabilities. Other voluntary comments regarding governmental regulation were one mention of member financing of building modifications to meet guidelines of the Department of Housing & Urban Development (HUD) for access to multifamily units; and one mention of concern about adverse rulings by bank examiners regarding new or innovative programs to meet special needs of individuals with disabilities for loans. TABLE 1: TRADE ASSOCIATION TABULATIONS Number % of Reporting Base TRADE ASSOCIATIONS CONTACTED (base = 13) Respondents: 10 77 Unreachable: 2 15 Disbanding: 1 8 Total 13 100 ASSOCIATION RESPONSE REGARDING LENDING TO INDIVIDUALS WITH DISABILITIES (base = 10) Specific information about qualifying/lending: 0 0 Generic ECOA/nondiscrimination: 3 30 ADA recognition: 7 70 Information/program: 5 50 Miscellaneous information:[***] 1 10 None/don't know: 3 30 Total (>base/100% due to multiple responses): 14 140 OBTAIN DATA FROM MEMBERS REGARDING LENDING TO INDIVIDUALS WITH DISABILITIES (base = 10) Yes: 0 0 No: 10 100 TONE OF INTERVIEW (base = 10) Concerned/sensitive: 7 70 Matter-of-fact: 3 30 Total: 10 100 OTHER GOVERNMENTAL REGULATION COMMENTS (base = 10) Positive: 3 30 ECOA: 2 20 HUD accessibility: 1 10 Negative: 1 10 Bank examiners: 1 10 Total: 4 40 B. LENDERS SURVEY 1. General Results De Witt & Associates were successful in obtaining a 90% response rate to the survey. 51 of the 57 financial institutions contacted provided interviews regarding their lending practices toward individuals with disabilities. (See Table 2a on page 8.) None of the respondents indicated that their firms code loan applications to provide a basis for statistical analysis to judge performance regarding lending to individuals with disabilities. In fact, a couple of respondents questioned whether such coding was legal. The majority of respondents (94%) indicated no specific written policies for their firms' lending practices towards individuals with disabilities. A large minority of respondents (31%) indicated that they had generic policies dealing with nondiscrimination or meeting ECOA regulations that included individuals with disabilities. Notably, a small minority of respondents (6%) were able to respond that their firms had such policies in place. For the firms with no specific policies in place, the most common responses regarding their experience with such lending were:  don't know of a problem or don't track (40%).  want to make such loans (40%);  statement of policy (40%): - not to discriminate; - all loan applicants must meet the same lending standards; A sizable minority (about 20%) expressed their experience as requiring only:  a demonstration of ability to repay loan;  that loan applicants be credit worthy or qualified. TABLE 2a: FINANCIAL INSTITUTIONS CONTACTED Number % of Reporting Base FINANCIAL INSTITUTIONS CONTACTED (base = 57) Respondents: 51 90 Uncooperative: 3 5 Miscellaneous (commercial lender, receivership, etc.): 3 5 Total 57 100 RESPONDENTS THAT CODE APPLICATIONS (base = 51) Code for disability: 0 0 Do not code: 50 98 Do not know: 1 2 Total: 51 100 RESPONDENTS THAT HAVE WRITTEN POLICIES FOR LOANS TO INDIVIDUALS WITH DISABILITIEs (base = 51) Specific policies: 3 6 Generic policies (ECOA/Nondiscrimination): 16 31 No special policies: 30 59 Do not know: 2 4 Total: 51 100 EXPERIENCE OF THOSE WITHOUT SPECIFIC POLICIES (base = 48) None/Don't know of problem/Don't track: 19 40 Want to make such loans: 19 40 Desire to do "right thing": 2 4 Case-by-case review: 5 10 Don't discriminate/Same standards for all: 19 40 Ability to repay: 10 21 Credit worthy/Qualified: 9 19 No response: 6 12 Total (>base/100% due to multiple responses) 89 186 2. SPECIFIC LOAN PROGRAMS OFFERED a. Secured Lending (other than auto or mortgage) Among lending institutions offering secured loans on assets other than real estate or automobiles, large pluralities (42%) either:  affirmed that they would accept an assistive technology device as collateral; or  did not know. Only a minority of respondents indicated that assistive technology devices would not be acceptable as security. (See Table 2b on page 12.) Regardless of response, a number of problems in accepting the assistive technology devices as security were mentioned. A quarter of the respondents were concerned about valuation or resale. Small minorities mentioned the difficulty of repossessing something so important (8%) or non-liquidity (5%). The latter preferred passbooks, certificates of deposit or securities as collateral. b. Unsecured Loans All respondents that offer unsecured lending would be willing to know that the funds were being utilized for assistive technology. (See Table 2b on page 12.) In fact, many respondents that offer both secured and unsecured loans expressed a definite preference for making such loans on an unsecured basis rather than as a secured loan with an assistive technology device as collateral. The dollar range of loans on an unsecured basis was quite broad. A large majority (82%) of lenders offer such loans (including lines of credit) beginning under $1,000. Although a large minority (41%) of lenders restricted the maximum on such loans to less than $5,000, the majority (59%) appeared to offer higher limits with important minorities (35% and 24% respectively) offering either unspecified upper limits or upper limits in the range of $5,000-$20,000. c. Mortgage Loans All mortgage lenders that offer home equity loans (86%) or "cash-out refinancings" (9%) had no problem with the proceeds of such loans being used for the purchase of assistive technology. (See Table 2b on page 12.) However, in Texas (5% of total survey respondents), the use of mortgage financing proceeds is restricted to: purchase of property by way of a first mortgage; refinancing the balance owed on the 1st mortgage; or home equity loans solely for home improvements or payment of taxes. d. Auto Loans A majority (62%) of lenders that finance automobiles would treat a loan on a vehicle modified to meet the needs of an individual with a disability the same as any other auto loan. (See Table 2c on page 13.) A small minority (11%) did not know how their firm would treat such a loan. However, an important minority (27%) would treat such a vehicle as a specialty item. Such a designation is not necessarily good nor bad: In some cases, such a designation means nothing more than the obvious; the vehicle is different than one of similar make and model. Some lenders, in fact, may include all conversion vans in such a category. In a very limited number of cases, such a designation may connote a special loan program to the advantage of the borrower.[****] In the remainder of cases, such a designation can connote the requirement for a higher down payment or a reduced lending limit to reflect a feeling that the full vehicle cost including the added costs of the modifications may be less than market value for the modified vehicle. TABLE 2b: RESPONDENTS THAT OFFER SECURED LOANS, OTHER THAN AUTO OR MORTGAGE Number % of Reporting Base RESPONDENTS THAT OFFER SECURED LOANS, OTHER THAN AUTO OR MORTGAGE (base = 36) Accept assistive technology device as security? Yes: 15 42 No: 6 17 Don't know: 15 42 Total: 36 101 PROBLEMS VOLUNTARILY REPORTED BY RESPONDENTS Resale/Valuation problem: 9 25 Repossession problem: 3 8 Non-liquid (prefer passbooks/CDs/Securities): 2 5 Total reporting problems: 14 38 RESPONDENTS THAT OFFER UNSECURED LOANS (base = 36) Would fund assistive technology devices: 36 100 Would not fund assistive technology devices: 0 0 Total 36 100 REPORTED DOLLAR RANGES ON UNSECURED LENDING (base = 17) Minimum Loan Number % Maximum Loan Number % ó $1,000 14 82 ó $5,000 7 41 > $1,000 - 5,000 3 18 > $5,000 - 20,000 4 24 > $5,000 0 0 Unspecified 6 35 Total 17 100 17 100 Number % of Reporting Base MAKE MORTGAGE LOANS (base = 42) Unrestricted use of proceeds: 40 95 Home equity: 36 86 1st mortgages/Cash-out refinancings: 4 9 Restricted use of proceeds: Home equity loans (home improvements or taxes); 1st mortgage; cash-out refinancings (remaining balance only): 2 5 Total: 42 100 TABLE 2c: RESPONDENTS THAT OFFER SECURED LOANS, AUTO AND MORTGAGE Number % of Reporting Base MAKE AUTO LOANS (base = 37) Modified vehicle treated conventionally: 23 62 Specialty vehicle/Program: 10 27 Do not know: 4 11 Total 37 100 PROBLEMS VOLUNTARILY REPORTED BY RESPONDENTS Resale problem: 1 3 Reluctance to repossess: 1 3 Total reporting problems: 2 6 3. USE OF COSIGNER/COMAKER IN LENDING DECISION An overwhelming majority (94%) of lenders will accept or require a cosigner/comaker under at least some set of circumstances.[*****] Data presented in Table 3 (pages 16-17) and reported below include many reasons why lenders "accept" or do "not accept" a cosigner. The total number of reasons often exceeds 100%. Different lenders may name the same reason but apply it to different categories. For example, "inadequate income" may be a reason to use a cosigner at one lender; but be the same reason at a different lender not to accept a cosigner. Note the duplicated reasons in Table 3 under "ACCEPT/REQUIRE" and "NOT ACCEPT."[******] Thus, an important minority (27%) of lenders will accept or require a cosigner under one set of circumstances but reject it under another. A smaller minority (18%) of lenders indicated their institutions would accept a cosigner. However, they did not list specific criteria. The most frequent reasons (45% each) for accepting cosigners were for "not meeting credit standards" and "not meeting income standards." Of the latter, some respondents (14% and 27% respectively) offered more specific reasons: "lack of employment history" and/or "inadequate income to repay the debt." Other reasons for accepting cosigners (about 15% each) included "case-by-case evaluation of the situation," "poor credit history," "inadequate collateral" or "low net worth." Three respondents would only accept family members as a cosigner, of which one required the individual to be a parent. Thirty-one percent of the respondents indicated a reluctance to accept cosigners. (See continuation of Table 3 on page 17.) Reasons for not accepting cosigners included "poor credit history" (15%) and "inadequate income" (15%). The next most frequent reason (8%) was "a cosigner that could not qualify." "Lack of collateral" and "lack of income" received only one mention each. Only two lenders (4%) categorically reject the use of a cosigner. One lender would not respond to the cosigner question. At least one respondent seemed to differentiate between the statement "they required a cosigner to make a loan" versus "they would accept a cosigner as part of the loan package." Many respondents seemed to differentiate between "cosigner" and "comaker." TABLE 3: USE OF COSIGNER/COMAKER BY RESPONDENT Number % of Reporting Base USE OF COSIGNER/COMAKER BY RESPONDENT (base = 51) ACCEPT/REQUIRE: 48 94 REASONS TO (voluntary responses) Unqualified (no specified reasons): 9 18 Case-by-case: 6 12 Credit standards not met: 23 45 Lack of credit history: 14 27 Poor credit history: 7 14 Late payments: 1 2 Delinquencies/Charge-offs: 0 0 Adverse public record: 1 0 Liens: 0 0 Judgements: 0 0 Bankruptcies: 1 2 Income standards not met: 23 45 Employment history: 7 14 Inadequate income (to repay): 14 27 Inadequate collateral/Too much debt: 8 18 If family member/Parent: 3 6 Miscellaneous reasons for:[*******] 6 12 Total reasons to accept/Require: 99 197 TABLE 3: USE OF COSIGNER/COMAKER BY RESPONDENT, CONTINUED Number % of Reporting Base USE OF COSIGNER/COMAKER BY RESPONDENT, CONTINUED (base = 51) NOT ACCEPT: 16 31 REASONS NOT TO (voluntary responses) Categorically (no specified reasons): 2 4 Poor credit history: 6 12 Delinquencies/Charge-offs: 1 2 Inadequate income: 8 16 Inadequate collateral: 1 2 Unqualified applicant: 1 2 Unqualified cosigner: 4 8 Total reasons not to accept: 22 46 NO RESPONSE: 1 2 TOTALS (include items from page 16):[********] 65 127 4. ACCEPTANCE OF MITIGATING CIRCUMSTANCES a. Loan Applicant Acceptance of mitigating circumstances in qualifying individuals with disabilities for loans was high (84%). Note that, on average, about two reasons were given per respondent (85 responses from 43 respondents). (See Table 4 on page 20.) The most frequent reasons (45% each) for accepting mitigating circumstances were:  the backup of well-documented explanations for any credit or income problems, directly keyed to circumstances surrounding the disability; and  a conviction on the part of the lending officer that the applicant would be able to repay the loan. The next most frequent reason (29%) for accepting mitigating circumstances was:  a case-by-case evaluation or as an exception to the standard policy. The least frequently occurring reasons (about 15% each) were:  good collateral;  the presence of a cosigner; or  a desire to help ("lending with one's heart instead of going strictly by the numbers"). Outright rejection of mitigating circumstances was low (12%). A few respondents that accept mitigating circumstances (6%) cited two which they would not accept: "lack of employment" and/or "bad credit" in such forms as write-offs or bankruptcies. Two respondents did not know if their firm would accept mitigating circumstances. b. Cosigner/comaker Acceptance of mitigating circumstances for cosigners was high (75%) though not as high as the level noted for primary applicants. Again, note that, on average, almost two reasons were given (63 responses from 33 respondents). (See Table 4 on page 21.) The most frequent reason (48%) for acceptance of cosigner mitigating circumstances was:  a good outlook for repayment. Next in popularity (39% each) were:  well-documented explanations;  a case-by-case evaluation; or  an exception to the standard policies. As with the direct applicant, only a minority (18%) of respondents indicated a reason:  desire to help ("lending with one's heart instead of going strictly by the numbers"). Outright rejection of cosigner mitigating circumstances was similarly low (11%). The number of executives not knowing their firms' position on the issue was higher (14%). TABLE 4: MITIGATING CIRCUMSTANCES Number % of Reporting Base MITIGATING CIRCUMSTANCES (base = 51) APPLICANT (base = 51) ACCEPT: 43 84 REASONS TO (voluntary responses) With well-documented explanations: 23 45 With good outlook for repayment: 23 45 With good collateral: 7 14 Only with cosigner/Comaker 8 16 Heart vs head/Want to help: 9 18 Case-by-case/Exception basis: 15 29 Total reasons to accept: 85 167 NOT ACCEPT: 9 18 REASONS NOT TO (voluntary responses) Categorically (no specified reason): 6 12 Bad credit/Write-off/Bankruptcy: 2 4 Lack of employment: 1 2 Reasons not to accept: 9 18 DO NOT KNOW: 2 4 TOTALS:[*********] 54 106 TABLE 4: MITIGATING CIRCUMSTANCES, CONTINUED Number % of Reporting Base MITIGATING CIRCUMSTANCES, CONTINUED (base = 51) COSIGNER (base = 44)[*********] ACCEPT: 33 75 REASONS TO (voluntary responses) With well-documented explanations: 17 39 With good outlook for repayment: 21 48 Want to help: 8 18 Case-by-case/Exception basis: 17 39 Total reasons to 63 144 NOT ACCEPT (categorically): 5 11 DO NOT KNOW 6 14 TOTALS: 44 100 5. VOLUNTARY COMMENTS a. Governmental Regulations/Programs Both positive and negative comments were offered regarding government programs or regulations and their effects on lending to individuals with disabilities. (See Table 5a on page 25.) The Federal National Mortgage Association (Fannie Mae) and the Federal Home Loan Mortgage Corporation (Freddie Mac), quasi-government agencies that bundle mortgages for sale in the secondary market, garnered within themselves both positive and negative references (4% versus 20%). The negative responses were for lack of flexibility in adjusting lending standards to meet the needs of borrowers with disabilities. The positive comments, one each, were for: the effects the Fannie Mae/Freddie Mac operations have had on keeping interest rates on home mortgages lower than they would otherwise be; and, their opening the secondary market to affordable housing. By far, the governmental program receiving the most favorable comments (37%) was the Equal Credit Opportunity Act and its requirements for nondiscrimination. The only other governmental regulations receiving favorable mentions (6%) was the Community Reinvestment Act for its provisions to reinvest funds in the community local to the lender. Only one mention of a state program to help individuals with disabilities with the purchase of assistive technology devices was made by a respondent. This is a program called ABLE in North Dakota which has special qualification provisions and a reduced interest rate on the loan.[*********] Other government agencies or regulators that received negative comments for their lack of flexibility were:  bank examiners (8%)  one mention each (2%) for: - the Federal Deposit Insurance Corporation (FDIC); - auditors; and - the Office of Thrift Supervision (OTS). Lastly, a state law in Texas with two mentions deserves special comment. In that state, home equity loans are illegal except for home improvements or the payment of taxes. Similarly, first mortgages can be made only for the purchase of the residence, and refinancings are allowed only for the unpaid balance remaining on the mortgage. b. Miscellaneous Comments Positive miscellaneous comments out weighed negative comment by three to one (32% versus 10%). (See Table 5b on page 26.) The most frequently mentioned positive comment was by a small number of financial institutions (14%) that mentioned their flexibility in applying lending standards. Some (7%) of these attributed this flexibility to the fact that they hold their own mortgages rather than sell them in the secondary market. A few lenders (6%) noted that they are in the business to make loans (not reject applications). Two lenders (4%) have special programs for rejected applicants. One has an appeals process that is totally separate from the financial institution to preclude any form of internal bias. The other offers credit counselling including a copy of the individuals credit report and help in understanding it. Four lenders (8%) provide special programs for individuals with disabilities. In general, these programs provide relaxed loan qualification criteria. In addition, one offers a discounted loan rate and waives late fees. Another (by an auto maker) offers a credit of up to $1,000 on vehicle modifications to meet the needs of the individual with a disability and will make the loan against the full cost of the vehicle, including the cost of the modifications. As indicated above, miscellaneous negative comments were low. Two respondents (4%) mentioned that even though lending officers in their institutions have flexibility in applying standards to make loans where mitigating circumstances exist, they could not be certain that this authority was, in fact, exercised. Only two other negative miscellaneous comments occurred, one each (2%). The first was an house appraisal problem where the appraiser lower the appraisal because of the accessibility modifications made to the home. However, the lender was able to make the loan anyway. The other involved credit scoring and how impersonal it is; if the score isn't high enough, the loan is not made. TABLE 5a: OTHER VOLUNTARY COMMENTS, GOVERNMENT REGULATIONS/PROGRAMS Number % of Reporting Base OTHER VOLUNTARY COMMENTS (base = 51) GOVERNMENT REGULATIONS/PROGRAMS Positive comments: 25 49 Fannie Mae/Freddie Mac:[*********] 2 4 Community Reinvestment Act: 3 6 ECOA/Nondiscrimination: 19 37 Special state program:[*********] 1 2 Negative - Lack of flexibility: 19 37 Fannie Mae/Freddie Mac: 10 20 State bank examiners: 4 8 Other regulators:[*********] 3 6 State law:[*********] 2 4 Suggestions:[*] 2 4 Total: 46 90 TABLE 5b: OTHER VOLUNTARY COMMENTS, MISCELLANEOUS Number % of Reporting Base OTHER VOLUNTARY COMMENTS, CONTINUED (base = 51) MISCELLANEOUS COMMENTS Positive: 16 32 Flexible lending standards: 7 14 Holds own mortgages: 3 6 Special lender programs:[*] 4 8 In business to make loans: 3 6 Appeals for rejected applicants:[**] 2 4 TABLE 5b: LENDING INSTITUTION SURVEY TABULATIONS, CONTINUED Number % of Reporting Base OTHER VOLUNTARY COMMENTS, CONTINUED (base = 51) MISCELLANEOUS COMMENTS, CONTINUED Negative: 5 10 House appraisal lowered:[***] 1 2 Credit scoring: 1 2 Not known if exception authority used: 2 4 Repossession no alternate to repayment:[****] 1 2 Total: 21 42 6. TONE OF INTERVIEWS De Witt & Associates attempted to assess the tone of each interview. This was an entirely subjective assessment and can be influenced by the:  biases of the interviewer;  acting ability of the respondent;  respondents assessment of the "proper" response;  interaction between the interviewer and the respondent;  pressures of the work environment proximate to the conduct of the interview; and  operational knowledge of the respondent. Having said this, De Witt & Associates found a high level (57%) of concern and sensitivity to the issues and needs of individuals with disabilities. An important minority (33%) seemed matter-of-fact or insensitive. In two cases, the respondent merely seemed to be providing the politically correct answers to the questions. In three interviews (6%), De Witt & Associates could make no assessment. TABLE 6: TONE OF INTERVIEWS Number % of Reporting Base TONE OF INTERVIEW (base = 51) Concerned/Sensitive: 29 57 Matter-of-fact: 17 33 Politically correct: 2 4 Undecided: 3 6 Total 51 100 C. SURVEY OF SUPPLIERS OF CREDIT SCORING SYSTEMS Every consumer has a legal right to insert a "consumer statement" into his/her credit report to provide credit grantors with information relevant to specific components of the report. Often such consumer statements address:  disputes between the consumer and a credit grantor;  the consumer's belief that an adverse rating is in error; or  a consumer's inability to obtain a satisfactory revision to the rating. The consumer statement provides the consumer with the opportunity to tell his/her side of the story and have it appear every time his/her credit report is drawn. For individuals with disabilities, this consumer statement is a means by which they can make sure that lenders know of any mitigating circumstances related to their disabilities surrounding derogatory information in their credit reports. However, when a financial institution uses credit scoring, the loan officer need not necessarily ever draw a credit report or look at it; the decision could be made based upon the credit score. To develop some insight on how credit scoring systems handle consumer statements, De Witt & Associates contacted three major suppliers of these systems.  In two of the three systems, the software ignores the consumer statement and reports a score as if no statement were present. A credit officer would be unaware of an existing statement unless the full report were to be drawn.  In the third system, the software recognizes the presence of a consumer statement and reports no score, forcing the lending officer to draw the credit report and review it to make a decision. IV.Conclusions A. TRADE ASSOCIATIONS 1. The trade associations that serve lenders are not aware of the Technology-related Assistance Act of 1988. Rather, they are focusing attention on the Americans with Disabilities Act of 1990. They seem to be interpreting the provisions of this law and/or the Equal Credit Opportunity Act as requiring nondiscrimination and/or equal access/opportunity for individuals with disabilities to obtain credit on the same basis as any other potential credit applicant. 2. Although the trade associations are aware of no obligations of their members to make any special accommodations beyond the provisions of these acts, many seemed concerned and sensitive to the issues involved. De Witt & Associates believes that at least some of these associations may be willing to support or sponsor programs with their members to foster increased lending opportunities for individuals with disabilities for purchase of assistive technology. B. LENDERS SURVEY 1. A majority of the interviews elicited responses that suggested that lenders were concerned or sensitive to the issues involved. In fact, a very small minority of financial institutions indicated that they actually had specific written policies in place to address lending to individuals with disabilities. However, because lenders do not collect data that would define the extent of such lending, the research could not gage the extent to which such sensitivity actually permeates the lending process. 2. All four forms of lending studied in this research are broadly available to individuals with disabilities, including:  secured loans with an assistive technology device as collateral;  unsecured loans;  mortgage loans, home equity or cash-out refinancings; and  auto loans to purchase a modified vehicle. 3. The lending standards, that seem so daunting when one seeks a loan, really come down to two basic criteria:  Will the loan be repaid?  Will the loan and/or the financial institution's portfolio of loans meet the applicable laws and regulations that govern that lender's operations? 4. The essential message is:  Lenders want to make any loan that will be repaid, but regulations often limit what they can do.  Conversely: regardless of whether a loan meets the regulations; or whether the loan is secured by an asset, a good lender does not wish to make the loan unless one is confident of repayment. 5. Lending standards are merely the imperfect tools which have been developed as an attempt to establish, on a somewhat routine, reliable basis, that the above criteria are met. They are certainly not consistent from one institution to another, attested to by the situation regarding cosigners. For example, 14 institutions gave "inadequate income" to repay as a reason to accept/require a cosigner while eight other institutions gave the very same reason not to accept a cosigner. 6. Security or collateral, except possibly in the form of a near-cash asset, does not really alter the criteria above. It just limits the lender's down-side risk. Repossession constitutes a last resort that can often represent a loss of principal, because the pay-down on the loan may be slower than the loss of market value due to: more rapid obsolescence, depreciation; or some other component of market value. Repossession also can be costly in terms of direct lender efforts and expenses to recover the asset. 7. Financial institutions have considerable latitude in their application and interpretation of their lending standards so long as the two prime criteria listed above are met. However, the desire to exercise such latitude for the benefit of individuals with disabilities varies greatly between institutions. Even within an institution that provides broad flexibility in applying lending standards or accepting mitigating circumstances, the utilization of such flexibility may vary between lending officers or require the approval of a senior officer or even a management committee. 8. In addition, especially among large financial institutions, the lending officer may not be aware of the applicant's (or family member's) disability. The officer may have no way to judge the impact that disability may have on the applicant's ability to meet normal loan qualification standards. 9. Several laws/regulations were mentioned as hindering or helping the efforts of financial institutions as they seek to meet the borrowing needs of individuals with disabilities in obtaining assistive technology. This research could not determine the extent to which these laws/regulations actually apply to individuals with disabilities:  as written;  as implemented by the regulators;  as interpreted by the courts; or  as perceived by lenders. For example:  the Community Reinvestment act was specifically mentioned as helping legislation by three respondents, but another did not believe it applied;  the stringent underwriting guidelines of Freddie Mac were highlighted in a recent study by the Federal Reserve Board.[*****] This has reportedly resulted in a relaxation of some of Freddie Mac's rules. C. SURVEY OF CREDIT SCORERS 1. Credit scoring can be a quick, reliable, and objective means to gage large numbers of applications readily against a fixed set of lending standards. 2. However, it is highly impersonal. From the consumer's point of view, credit scoring suffers from two problems:  The GIGO (Garbage In, Garbage Out) principal is alive and well with respect to credit reporting. The horrendous errors that sometimes occur in the reporting of consumer credit has been widely documented in the business, trade and lay press. With credit scoring, these errors are automatically and efficiently bundled into the loan applicant's credit score.  Two of the three systems surveyed in this study provide scores regardless of consumer comments entered into the credit report to explain circumstances surrounding derogatory information contained in it. Thus, a poor score would be reported and the loan potentially denied based upon incomplete information. 3. The third system provides no score where a report contains a consumer comment, requiring that the credit report actually be drawn and reviewed to arrive at a credit decision. 4. Individuals must review their credit reports before beginning the credit application process. This is essential to assure that, on the initial credit review, all of the data that the institution may consult provides a fair introduction to the applicants' true situation. Errors should be corrected and consumer statements added, as appropriate, to explain any derogatory information related to a disability. All three national credit repositories need to be checked - TRW, CBI and TransUnion. This is because each develops its data independently. Correcting an error on one will have no effect on the same error reported by another repository. Similarly, adding a consumer statement to one will have no effect on the other two. V.Suggestions/Solutions 1. Work with trade associations on joint efforts to:  make their members aware of the needs of individuals with disabilities;  develop a dialog among members on avenues to meet these needs; and  suggest and institute model programs that members could test within their own organizations. 2. Investigate creative approaches such as:  establish special lending standards for needy individuals with disabilities;  work with banks and manufacturers of assistive technology devices to develop financing programs so that the manufacturers can offer such an option directly to their customers.  establish among the various disability-related organizations, a fund of unused cash or near-cash assets that could be loaned to those with disabilities as collateral for a loan - essentially a loan guarantee fund.  seek Federal or state programs to: - supply collateral; - guarantee loans; or - purchase loans on behalf of individuals with disabilities. 3. Have legal counsel thoroughly investigate all laws and regulations that have been identified as potentially facilitating or inhibiting the making of loans to individuals with disabilities.  For those that facilitate the process, make sure that the inclusion of those with disabilities is explicit.  For those that inhibit the process, seek modifications in the laws, regulations or practices to ease the granting of such loans. 4. Establish programs for individuals with disabilities to help them understand the lending process and what they must do to make sure that their application is considered properly, such as:  Review your credit report, correct errors and insert a consumer statement as appropriate.  If rejected, find out why and make sure that the lender knows of the disability and any mitigating circumstances surrounding it.  Request a review at higher levels within the lender organization.  Apply to different lenders since internal standards vary. APPENDIX A-1: Map of U.S. Census Regions and Divisions APPENDIX A-2: Chart of Institutions Contacted by Census Region and Division UNITED STATES CENSUS REGIONS & DIVISIONS Banks Large Small Savings & Loan La rge Small Credit Unions Mortgage Companies Finance Companies NORTHEAST New England Maine New Hampshire Vermont Massachusetts Rhode Island Connecticut Boston Norwalk Portl and n n Middle Atlantic New York New Jersey Pennsylvania New York Ocean City Phila delph ia d e k & y l SOUTH South Atlantic Delaware Maryland District of Columbia Virginia West Virginia North Carolina South Carolina Georgia Florida Baltimore Chattahoochee McLea n y a d n East South Central Alabama Mississippi Tennessee Kentucky Birmingham Lexington Birmi ngham e West South Central Louisiana Arkansas Texas Oklahoma Fort Worth Little Rock Irvin g o a MIDWEST East North Central Ohio Michigan Indiana Illinois Wisconsin Muncie Troy t n s / n West North Central North Dakota South Dakota Minnesota Nebraska Iowa Missouri Kansas Minneapolis North Platte Fargo n n s s WEST Mountain Arizona Utah Nevada Idaho Montana Wyoming Colorado New Mexico Tempe Las Vegas e t e y Pacific California Oregon Washington Alaska Hawaii San Francisco Tacoma Honol ulu e e n l e APPENDIX A-3: List of Lenders Surveyed BANKS North Pacific Bank Tacoma, WA Rio Salado Bank Tempe, AZ North Platte National Bank North Platte, NE Star Financial Bank, Muncie Muncie, IN Eagle Bank & Trust Little Rock, AR The Coastal Bank Ocean City, NJ The Norwalk Bank Norwalk, CT Gadsden State Bank Chattahoochee, FL Bank of the Bluegrass & Trust Company Lexington, KY Bank of America, National Trust & Savings Association San Francisco, CA Norwest Bank Minnesota, National Association Minneapolis, MN (BANKS, continued) Citibank, N.A. New York, NY The First National Bank of Boston Boston, MA Maryland National Bank Baltimore, MD AmSouth Bank, N.A. Birmingham, AL TeamBank Fort Worth, TX First Chicago - The First National Bank of Chicago Chicago, IL United Bank of Denver, National Association Denver, CO SAVINGS & LOAN ASSOCIATIONS Mid-Iowa Savings & Loan Association Newton, IA Beckley Federal Savings & Loan Association Beckley, WV Bennington Co-Operative Savings & Loan Association Bennington, VT (SAVINGS & LOAN ASSOCIATIONS, continued) Ridgewood Savings & Loan Association Ridgewood, NJ Liberty Savings & Loan Association Eugene, OR Security First Savings & Loan Association Cheyenne, WY Rock Savings Bank, S.A. Beloit, WI Home Federal Savings & Loan Association Jonesboro, AR First Federal Savings Bank Pineville, KY Honfed Bank Honolulu, HI Primerit Bank, A Federal Savings Bank Las Vegas, NV Perpetual Savings Bank, F.S.B. McLean, VA Meritor Savings Bank Philadelphia, PA Peoples Heritage Savings Bank Portland, ME (SAVINGS & LOAN ASSOCIATIONS, continued) Metropolitan Federal Bank, FSB Fargo, ND Standard Federal Bank Troy, MI First Gibralter Bank Irving, TX City Federal Savings & Loan Association Birmingham, AL CREDIT UNIONS Acorn Credit Union Salt Lake City, UT McPherson Co-Op Credit Union McPherson, KS Emerald Industrial Credit Union Greenwood, SC A. T. Cross Employees FCU Lincoln, RI Boeing Employees Credit Union Seattle, WA United Air Lines Employee Credit Union Arlington Heights, IL (CREDIT UNIONS, continued) Navy FCU Vienna, VA IBM Poughkeepsie Employee FCU Poughkeepsie, NY MORTGAGE COMPANIES First California Mortgage Company San Rafael, CA Homestead Mortgage Corporation Minneapolis, MN Inland Mortgage Corporation Tulsa, OK Prudential Mortgage Capital Company Newark, NJ GE Capital (formerly Travelers Mortgage Services) Cherry Hill, NJ FINANCE COMPANIES General Motors Acceptance Corporation Detroit, MI Ford Motor Credit Company Dearborn, MI ITT Consumer Financial Corporation Minneapolis, MN AVCO Financial Services Inc. Irvine, CA FINANCE COMPANIES, continued) Beneficial Corporation Wilmington, DE CREDIT CARD ISSUERS The Chase Manhattan Bank, N.A. Credit Card Operations New York, NY American Express Credit Corporation Wilmington, DE AT&T Universal Card Services Jacksonville, FL APPENDIX B: LENDER QUESTIONNAIRE INSTRUCTIONS All introductory material and questions are printed in boldface type. These should be read verbatim. Instructions for filling in answers or "skip" and "go to" are printed in normal type and are in the right-hand column. Answers requiring verbatim entry may be abbreviated to save time during the interview. Each interview must be edited immediately following the call. Verbatim responses written in abbreviated form should be expanded to represent the interviewee's exact words as closely as possible. Be certain that the data called for at the end of the questionnaire are filled in (institution, date and your name). SECTION 1 Hello, my name is [ ] of De Witt & Associates. We're conducting a survey on behalf of the National Council on Disability, an independent federal agency. We're surveying lending institutions nationwide to develop an understanding of current lending practices toward individuals with disabilities. [Technology-Related Assistance Act of 1988, Title II, Part A, Sec. 201A(3) & Sec. D] All responses are anonymous, they will only be compiled statistically. This will only take about five minutes. Q1 Is this a good time to talk? A1 If yes, skip to Q2. If not convenient, go to Q1a. If not right person, go to Q1b. If not willing, go to Q1c.: Q1a When in the next few days would be more convenient? A1a Record response. END INTERVIEW HERE, BUT FILE AWAY FOR CALLBACK. Q1b Please tell me the name of the individual in your organization whom you believe may be in the best position to discuss this subject or better able to refer me to such an individual. A1b Record name, title, department, and phone number. END CALL. CALL INDICATED PERSON, ALTERING "Hello" PARAGRAPH TO REFLECT REFERRAL FROM PERSON JUST CALLED. Q1c All responses are anonymous and the results will be compiled statistically. Since the study has been mandated by Congress, would you like to reconsider? A1c Record response verbatim and go to Q2. SECTION 2 In conducting this study, we are particularly interested in situations where individuals with disabilities are seeking funds to purchase assistive technology devices so that they can function as productive members of society. Such devices, for example: may be as basic as a powered wheel chair to provide mobility or as sophisticated as a computerized optical character scanner/reader that converts printed material into spoken words for blind readers. Q2 Does your institution code loan applications for statistical purposes so that you can analyze your portfolio to determine the percentage of loans made to individuals with disabilities? A2 If yes, go to Q2a. If no, skip to Q3. Q2a Would you supply us with a summary of such data for the past two years or the period when data was collected? A2a If yes, record period covered. If no, skip to Q3. Q3 Does your institution have written policies dealing with loans to individuals with disabilities? A3 If yes, go to Q3a. If no, go to Q3b. Q3a Would you also send us a copy of these policies? We will call back if we need clarification. A3a Record response and go to Q4. Q3b In the absence of written policies, would you describe your experience in making loans to individuals with disabilities? A3b Record response and go to Q4. If none can be given, go to Q3c. Q3c Who in your organization might be in a better position to discuss this subject? A3c Record response. SECTION 3 Q4 Does your institution make secured loans to individuals with disabilities using technology assisted devices as collateral? A4 Record response. Q5 Does your institution make unsecured loans? A5 Record response. Q6 What is the upper and lower limit on your unsecured loans? A6 Record response. Q7 Does your institution make home equity loans to finance assistive technology? A7 Record response. Q8 Does your institution make auto loans on vehicles modified to accommodate hand controls or wheelchairs? A8 Record response. Q9 Under what circumstances does your institution use a cosigner? A9 Record response. SECTION 4 Many individuals with disabilities may have poor or nonexistent credit records because they are:  students or just entering the work force;  not employed or under-employed because of their disability;  lacking the assistive technology devices that enable them to work;  having inordinately heavy medical expenses associated with their disability. Disability affecting one family member may have an effect upon the entire family's credit record as well. Q10 Can your lending officers take such mitigating factors into account in qualifying the individual with a disability for a loan? A10 Record response and go to Q12a. Q11a Is this covered in your written policies? A11a If yes, skip to Q12. If no, record response and go to Q11b. Q11b Then, how are such mitigating factors treated in your lending decisions? A11b Record response and go to Q12. SECTION 4, continued Q12 Similarly, those on whom individuals with disabilities might depend as cosigners (parents,etc.) may also have developed poor credit records due to the costs of helping the affected individual accommodate to their disability. Do your lending officers take such mitigating factors into account in qualifying the applicant with a disability for a loan? A12 Record response and go to Q12a. Q12a Is this covered in your written policies? A12a If yes, skip to Q13. If no, go to Q12b. Q12b Then, how are such mitigating factors treated in your lending decisions? A12b Record response and go to Q13. SECTION 5 Q13 This completes the formal questionnaire. I have just one general question to complete the interview. Is there anything else that might be useful for us to know? A13 Record response verbatim. Thank you very much for your time and assistance in helping with this survey. Have a good day. END CALL. Institution: Date: Interviewer: APPENDIX C: List of Trade Associations and Credit Scoring Systems Surveyed TRADE ASSOCIATIONS American Bankers Association Washington, DC Consumer Bankers Association Arlington, VA Independent Bankers Association of America Washington, DC Mortgage Bankers Association of America Washington, DC National Association of Mortgage Brokers Phoenix, AZ National Council of Savings Institutions Washington, DC National Second Mortgage Association Rancho Cucamonga, CA United States League of Savings Institutions Washington, DC American Financial Services Association Washington, DC National Foundation for Consumer Credit Silver Spring, MD National Association of Federal Credit Unions Washington, DC Community Service Credit Union Council Washington, DC Credit Union National Association Madison, WI CREDIT SCORING SYSTEMS Trans Union Corporation Chicago, IL TRW, Inc. Credit Data Division Orange, CA Equifax Services, Inc. Atlanta, GA 20309 ATTACHMENTS: 1. American Banker's Association (brochure excerpt) 2. Credit Union National Association (newsletter excerpts) 3. General Motors (loan program brochure) 4. The Wall Street Journal (article) Section Eight: Consultant Directory on the Financing of Assistive Technology Devices and Services for Individuals with Disabilities NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Consultant Directory on the Financing of Assistive Technology Devices and Services for Individuals with Disabilities March 18, 1992 Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street, N.W., Suite 1112 Washington, D.C. 20005 Welcome to The National Council on Disability's Consultant Directory on the Financing of Assistive Technology Devices and Services for Individuals with Disabilities I. Introduction The application of technologies to diminish the limitations and extend the capabilities of persons with disabilities is one of the prime social and economic goals of public policy. (Gibbons, 1982, Office of Technology Assessment). In the past 25 years, Congress has established over 30 programs that affect Americans with disabilities. There are over a dozen agencies on the federal level charged with the responsibility of managing these programs, interpreting Congressional mandates, and monitoring state implementation. Although sometimes described as a patchwork quilt or "federal maze" (President Ronald Reagan, 1983), which continues to grow more complex each year, there is agreement that federal laws and programs must be directed toward the national goal of "assuring equal opportunities and promoting independence for persons with disabilities," (National Council on Disability, 1986). Technology is a proven means to assure equal opportunities and promote independence. The public record of House and Senate hearings that led to the passage of the Technology Related Assistance Act in 1988, (P.L. 100-407), documents professionals, parents, and consumers' viewpoints that for many individuals with disabilities, assistive technology devices and services enable them to: a. have greater control of their lives; b. participate in and contribute more fully to activities in their home, school and work environments; c. interact to a greater extent with non-disabled ; d d. otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities. (Section 2: Findings 29 USC 2201) If persons with disabilities had a sufficient income base, identified appropriate technology would be purchased without third party involvement. However, the limited economic status and purchasing power of persons with disabilities requires a search for alternative solutions. The development and use of technologies by persons with disabilities is critically impacted by the availability and allocation of public resources in support of public policy to promote equal opportunity and independence. An effective funding system(s) that is incentive driven, outcome oriented and consumer responsive must be designed to respond to the concerns frequently expressed by potential technology users with disabilities. "Technology could dramatically change my life... Unfortunately, I can't afford it!" The purpose of this study is to examine the effectiveness of current third party payor options in the public and private sectors on state and federal levels and propose the development of alternative strategies for acquiring or paying for assistive technology devices and services. II. Recent Public Policy Experience During the past six years, Congress and federal agencies have moved dramatically forward with public policy that improves access to assistive technology (see Table 1). An effective funding and financing strategy must be designed in light of seventeen significant public policy developments that have occurred since 1986: 1. Amendments to the Rehabilitation Act, P.L. 99-506 A. In 1986, for the first time, a definition of rehabilitation engineering was added to the Act to "include a range of services and devices which can supplement and enhance individual functions..." The Amendments require each state vocational rehabilitation agency to describe in their three-year state plan how rehabilitation technology services will be provided to assist an increasing number of individuals with disabilities. The Amendments also require the application of rehabilitation technology services when making determinations of eligibility. This is particularly important for individuals who might otherwise be found ineligible for vocational rehabilitation services. The Amendments further include rehabilitation engineering technology as one of only four services which must be provided by the state rehabilitation system without consideration of comparable services and benefits -- a clear indication of Congressional recognition both of its importance and of the need for public systems to provide funding support to enable people who can benefit to be able to access these important supports. B. An important new direction in public policy was accomplished with the addition of Section 508 to the Act, without imposing any significant new financial burdens on government, business, or employees. Federal agencies must provide workers with and without disabilities equivalent access to electronic office equipment. As a result of Section 508, the federal government, with the General Services Administration (GSA) taking the lead, has changed its rules for purchasing/leasing information technology. New guidelines for functional performance can be accomplished by manufacturers of computers "building in alternative capabilities such as single keystroke commands or providing hooks for the addition of adaptive peripheral equipment such as a one-handed keyboard or a braille printer." (RESNA TA Project, 1990) As implementation of Section 508 proceeds, it is expected that accessibility-related equipment and support services will become an integral aspect of federal agency acquisition. It is anticipated that these new accessibility procurement guidelines by the federal government, who is the single largest purchaser of computers, will stimulate the accelerated development, manufacturing and marketing of accessible or adaptable office automation systems. 2. Early Intervention for Infants, Toddlers and Families, P.L. 99-457 In 1986, Congress enacted P.L. 99-457, within which was included a new Part H amendment to the Individuals with Disabilities Education Act (formerly Education for the Handicapped Act). This public policy declaration dramatically advanced national efforts to provide appropriate services to infants and toddlers with disabilities and their families. The statutory definition of early intervention services states, in part, "...designed to meet a handicapped infant's or toddler's developmental needs in any one or more of the following areas:", which include physical development, cognitive development language and speech development, psychosocial development, or self-help skills. Amplification of Congressional intent occurred in the Department of Education's final regulations issued on June 22, 1989 at 34 CFR Part 303, which includes the following: 'Occupational therapy' includes services to address the functional needs of a child related to the performance of self-help skills, adaptive behavior and play, and sensory, motor, and postural development. These services are designed to improve the child's functional ability to perform tasks in home, school, and community settings, and include: (i) identification, assessment, and intervention; and (ii) adaptation of the environment, and selection, design, and fabrication of assistive and orthotic devices to facilitate development and promote the acquisition of functional skills. With this new legislation and regulations, a major leap in assistive technology public policy occurred by creating an entitlement to such services for infants, toddlers and their families. A five year planning process will in 1992 be replaced by a new entitlement to services. 3. Employment Opportunity for Disabled Americans Act, P.L. 99-463 The greatest public expenditures on behalf of persons with disabilities remain income maintenance programs. The two largest are Supplemental Security Income (SSI), and Social Security Disability Insurance (SSDI). In 1986, Congress approved new legislation to make it easier for people with disabilities to work and not lose their SSI benefits. As part of this public policy goal, Congress permanently authorized the PASS program. PASS is an acronym for Plan for Achieving Self-Support. An individual who is receiving SSI, or who would qualify for SSI by setting aside income from their paycheck, is eligible to develop a PASS. Each plan must be approved by the Social Security Administration, and can be used to purchase work-related assistive technology equipment or devices. The plan must state a clear and realistic vocational goal, and explain how the sheltered income will be spent within a specific timetable. This policy approach recognizes the importance of assistive technology to achieve the goals of independence and self-sufficiency, and gives special consideration from a tax or income perspective of the extra costs associated with acquisition. 4. Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987, P.L. 100-146 The Developmental Disabilities Assistance and Bill of Rights Act reflects emerging "best-practice" supports and services within a value-based context for individuals with developmental disabilities and their families. During the 1987 reauthorization process, Congress added assistive technology as a priority for state planning and funding for system development and system change. Within the 1990 amendments to the Act (P.L. 101-576), Congress modified the definition of assistive technology to conform to the definition in the Tech Act (P.L. 100-407). With this legislation, public focus on the financing of assistive technology was further advanced within a state system for planning and systems advocacy. 5. Older Americans Act of 1965, as amended, (P.L. 100-175) In 1987, the Act was amended (P.L. 100-175) to include several provision related to older persons with developmental disabilities and/or mental health needs. Among the provision are requirements that: o planning linkages be established between HHS Commissioners of Aging, Developmental Disabilities and Alcohol, Drug Abuse and Mental Health; o the Commissioner of Aging consult and cooperate with the Commissioner of the Rehabilitation Services Administration in planning Older Americans Act programs; and, o in evaluating OAA programs the Commissioner on Aging consult with developmental disability organizations whenever possible. Title III, Part B, Grants for Supportive Services, Nutrition and Other Activities, assists older individuals in avoiding institutionalization and individuals in long-term care institution who are able to return to their communities, including client assessment through case management, and integration and coordination of community services. The term "client assessment through case management" s e n f e . The term "assistive technology" is defined as g , r c s e o t e s , d s e s d , r s h l . Grants are awarded to States to develop and strengthen services systems on aging. State plans include several assurances including assurances associated with access to services (i.e. transportation, outreach, and information and referral). The phrase, "information and referral" includes information regarding to assistive technology. 6. Medicaid Amendments of 1988 for Special Education Related Services, P.L. 100-360 The Medicare Catastrophic Coverage Act (P.L. 100-360), contains a significant technical amendment to Medicaid law, which was not repealed with the Catastrophic Act. This legislation was intended to resolve a historical dispute in which the Health Care Financing Administration had declared that any service within a child's individualized education program (IEP), was the financial responsibility of the education agency and could not be billed to Medicaid. The 1988 amendment and accompanying report language explicitly offered states the option of including special education and related services under Part B of IDEA, and those services included under Part H of IDEA as Medicaid reimbursable services under the state's Medicaid plan. With this policy, Congress provided a major opportunity for states to access federal Medicaid funds for a full range of individual assistive technology services without adding additional burdens to the local and state special education budgets. 7. Technology-Related Assistance Act, P.L. 100-407 This federal mandate provides financial assistance to states on a competitive grant basis, to plan and implement a consumer responsive system of technology services for individuals of all ages with disabilities. Technology services and devices are defined in a broad context to stimulate creative problem solving, interagency coordination and professional consumer collaboration. In the first two years of implementation of the Act, 23 states have competed successfully for funding. States have broad discretion to target their funds to training, public awareness, service demonstration, policy analysis, and systems change. Unlike already existing public programs, this federal initiative represents the first time Congress targeted new public resources exclusively to expand access to assistive technology. 8. Telecommunications Accessibility Enhancement Act of 1988, . 2 In 1988, Congress authorized P.L. 100-542, The Telecommunications Accessibility Enhancement Act of 1988. The purposes of the Act are to implement an interim telecommunications relay system to serve the needs of individuals who are hearing-impaired and speech-impaired for access to Federal departments and agencies; to equip all Federal departments and agencies with TDDs or facilities to accommodate portable TDDs; to provide for the assembly, publication and maintenance of a TDD directory for Federal departments and agencies; and for the publication of governmental TDD access numbers in other existing directories. The Act also required the FCC, in consultation with the l d n s e d o h d m t a s m r s o e g d d h d n e l t t s s n e n e D r d l s d . 9. Medicaid Early and Periodic Screening, Diagnosis and Treatment Amendments of 1989, P.L. 101-238 Included within the massive Omnibus Budget Reconciliation Act of 1989 (OBRA '89, P.L. 101-238), Congress enacted major changes within the Medicaid program required in all states, called Early and Periodic Screening, Diagnosis, and Treatment (EPSDT). Although EPSDT has been one of nine state Medicaid mandated services since its enactment in 1967, the states have had great discretion in interpretation and implementation of this benefit. As of April 1, 1990, the EPSDT Medicaid benefit was "federalized" and mandates that all children from birth to twenty-one years of age receiving, or eligible to receive Medicaid are entitled to the "medically necessary" diagnostic and treatment services for any physical or mental problem identified during such screening or assessment. Such services would be reimbursable under Medicaid if such "treatment" is coverable under federal Medicaid law, even if these "treatments" are not in the state's Medicaid plan; e.g. augmentative communication devices, wheelchairs, hearing aids, optical aids including glasses, etc. As a result of this Amendment, a significant number of children with physical, sensory or mental disabilities now have a right to assistive technology. Due to established practices within Medicaid, many challenges remain in assuring this right in concert with the second, and often overlooked, statutory purpose of Medicaid: "to furnish rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care," (P.L. 90-248, 42 USC 1396, Sec. 1901). 10. Americans with Disabilities Act (ADA), P.L. 101-336 Signed into law by President Bush on July 26, 1990, the Act will protect over 40 million Americans with disabilities from discrimination in employment, public services, transportation, public accommodations and telecommunications. Each Title of the Act specifically references assistive technology equipment or devices as a means to achieve access and equal opportunity. In Titles I and III, the purchase or modification of equipment and devices is included within the definition of "reasonable accommodation." However, the removal of architectural, physical, or communication barriers, through "reasonable accommodation," is not an absolute civil right. On a case by case basis, access to employment opportunity or public accommodations must be weighed against a defense of "undue hardship," a still evolving standard to evaluate the degree of difficulty and expense to a particular business. Title IV of the ADA expands access rights to the important area of telecommunications. Telephone services offered to the public in every state must include interstate and intrastate telecommunications relay services so that these services provide individuals with speech and hearing impairments access to communications equivalent to those provided to individuals able to use voice telephone systems. In multiple approaches, ADA will begin to redefine the inclusion of assistive technology within the core and penumbra of civil rights to be enjoyed by citizens with disabilities. The current year, 1991, represents a critical year of regulatory development that will begin to more solidly define the limits of access to assistive technology as part of "reasonable accommodation" in the workplace, commercial buildings, and public arenas. 11. ADA Tax Credit, P.L. 101-508 Under the Omnibus Budget Reconciliation Act of 1990, a new tax credit was created for small businesses, to provide additional incentives and assistance to meet the access requirements under ADA. The credit amount allowed a tax year is 50 percent of expenditures, up to a maximum of $10,250. Acceptable expenses include removal of architectural, communication, or transportation barriers. Coverage does include the purchase or modification of adaptive equipment or assistive devices as part of an effort to improve access to persons with disabilities. To qualify, a business must have gross receipts of less than one million dollars, or fewer than 30 full-time employees. 12. Decoder Circuitry Act of 1990, P.L. 101-431 In yet another approach to expand public policy, new requirements are mandated for the manufacturers of television sets with screens 13 inches or larger, sold in the United States after July 1, 1993. Televisions will be required to have built-in decoder circuitry to be compatible with current closed captioning signals. This new mandate will assure that people with hearing impairments will be able to see captions on programs that provide them by merely flipping a switch on their television. Mass production of the built-in decoders will cost an estimated three to five dollars per television. The potential audience for closed-captioned programming for individuals with communication disabilities is estimated to be more than 24 million. 13. Policy Letter: Office of Special Education Programs On August 10, 1990, Office of Special Education Programs Director, Dr. Judy Schrag issued a policy letter that clarifies the rights of children with disabilities to access assistive technology. This policy letter states clearly and unequivocally that assistive technology services and devices may be considered special education, related services, or supplementary aids and services to enable a student with a disability to remain in the regular education classroom. In other words, as part of the requirements of a "free, appropriate public education," (FAPE), assistive technology needs must be considered when developing a child's individualized education program (IEP). Needed assistive technology devices and services must be appropriately included as part of the IEP. In response to the requirements of the least restrictive environment principle and as special education or related services, children with disabilities have a right to assistive technology. These requirements were further reinforced in the recent reauthorization of the Education of the Handicapped Act. On October 30th, 1990, President Bush signed into law the Individuals with Disabilities Education Act (IDEA), P.L. 101-476, which, for the first time, includes definitions of assistive technology devices and services identical to those included in the TECH Act, P.L. 100-407. In report language, there is further emphasis on the right to assistive technology as part of special education and related services. The reauthorization language and the policy letter should result in more consistent access to assistive technology by school-age children with disabilities nationwide. 14. Policy Memo: Rehabilitation Services Administration On November 16th, 1990, Commissioner Nell Carney issued a policy directive to all state vocational rehabilitation agencies that sets important new guidelines concerning implementation of the 1986 rehabilitation technology amendments. Each state must develop written policies to address the need for assistive technology during the entire rehabilitation process: as part of determination of eligibility, evaluation of rehabilitation potential, extended evaluation, services provided under the individual written rehabilitation plan (IWRP), annual reviews of ineligibility, and post-employment services. An assessment of an individual with disabilities should consider how assistive technology devices and services can: a. increase or supplement function; and b. modify environments to accommodate individual abilities in the home and workplace. This added policy direction to implement the intent of Congress should place new demands on a major public resource program to allocate funds to increase access to technology. Analysis of these public policy developments reflects numerous approaches which have been used to increase availability of and access to assistive technology. These approaches include a range of activities designed to influence all aspects of policy development and implementation, (see Table 2). While these policy approaches do not reflect all of the avenues available to direct the public policy arena toward increased access to assistive technology, they certainly provide excellent examples of approaches which have been successfully utilized to date to begin movement in that direction. In addition, they provide important information on approaches which should be considered when developing additional strategies for the acquisition and financing of assistive technology services and devices in the future. Table 1 RECENT PUBLIC POLICY DEVELOPMENTS 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. Year 1986 1986 1986 1986 1987 1987 1988 1988 1988 1990 1990 1990 1990 1990 1990 1991 1991 Action Amendments to Rehabilitation Act: add definition, expand program requirements Amendment to Rehabilitation Act, Section 508: new guidelines for federal procurement of computers Early Intervention: new entitlement, expand program benefits Social Security Amendments Amendments to Developmental Disabilities Act: expand program requirements Older Americans Act Amendments: adds provision of assistive technology to Act; defines assistive technology Medicaid Amendments: clarify funding options and mandates Tech Act: Create statewide systems of technology assistance New Telecommunications Access Law New Civil Rights Law ADA: employment, transportation, public accommodations, telecommunications ADA Tax Credit for Small Businesses Decoder Circuitry Act: design standard for televisions Policy Memo Special Education Policy Memo Rehabilitation Amendment to IDEA adding definitions of assistive technology devices and services Amendment to Part H of IDEA adding definitions of assistive technology services and devices Policy Letter Approach Clarify and expand program benefit of major public program Change procurement practices, impact manufacturers expectation of accessible design standards at lower cost Establish new major public program Tax sheltering of income to purchase technology New priority within existing public program Expands program benefit Clarify and expand existing program benefit New funding, new public program New TDD access requirement within Federal agencies New access requirements of private sector, access technology by expanding concept of civil rights Tax incentives to expand access to assistive technology, Require new manufacturer standard for access Clarify rights under existing major public program Clarify rights under existing major public program Clarify rights under existing public program Clarify rights under existing public program Clarify right to take technology home from school Table 2 POLICY APPROACHES 1. Redirect or increase resource allocation under existing public programs. 2. Modify entitlements under existing public programs. 3. Clarify existing policy to mandate and monitor more consistent practices. 4. Modify discretionary priorities under existingpublic programs. 5. Establish new public programs. 6. Establish new laws to expand definition of civil rights. 7. Alter procurement practices of government. 8. Alter existing or create new tax incentives. 9. Allow tax sheltering of income. 10. Require new design standards for manufacturers of equipment to displace need for specialized equipment purchases. III. Approach to the Consultant Directory The Directory identifies individuals from across the country, indexed alphabetically and by state, who have expertise in the acquisition, finance and payment of assistive technology services and devices. The majority of individuals listed have expressed their willingness to provide assistance both within their individual states and nationwide. To complete this Directory, NCD designed a questionnaire and mailed it to a large pool of published individuals; contacts in key national consumer and professional organization; individuals in each of the Title I (P.L. 100-407) state lead agencies; Rehabilitation Engineering Centers; the Veterans Administration and consumers. The questionnaire addressed the following areas: (a) contact information; (b) area(s) of expertise; (c) types of assistive technology services/devices with which s/he has had experience securing financing; (d) funding streams with which s/he has had experience securing financing; (e) age and disability groups with which s/he has had experience securing financing of assistive technology devices and services; and, (f) the types of consultation s/he is willing to provide. In addition, each individual was asked about their willingness to be included in the Directory. All individuals listed in the Directory are self-nominated. Given the growing interest in the issues of funding assistive technology and the activities now being implemented under the Technology-Related Assistance Act for Individuals With Disabilities (P.L. 100-407), this listing should not be seen as complete. It is a list that will grow weekly as more people grapple with the financing of assistive technology. We hope that this document is a resource that can be updated annually. If we can be of further assistance, please contact Dr. Katherine Seelman (202) 267-3846 (Voice)/(202) 267-3232 (TDD). Thanks to all the people who have volunteered their time and commitment to improving access to the financing of assistive technology devices and services by becoming a part of this Directory. Sandra Swift Parrino Ethel Briggs Chairperson Executive Director National Council on Disability National Council on Disability George Oberle, P.E.D Katherine Seelman, Ph.D. Chairman Research Specialist Committee on Technology National Council on Disability National Council on Disability IV. TABLE OF CONTENTS I. Introduction..............................................3 II. Recent Public Policy Experience...........................4 III. Approach to the Consultant Directory.....................16 IV. Table of Contents........................................17 V. Consultants..............................................19 Thomas C. Backiel..............................................19 Diane Baranik..................................................20 Jesse Barth....................................................21 Allan I. Bergman...............................................22 Gayl Bowser....................................................24 David Braddock, Ph.D...........................................25 Todd Brickhouse................................................26 J.A. Browder, M.D..............................................27 Carl Brown.....................................................28 Jan Brown......................................................29 Kenneth Brown..................................................30 Lynn Bryant....................................................31 Christopher Button, Ph.D.......................................33 Caron Cohen....................................................34 John C. DeWitt.................................................35 Alexandra Enders OTR/L.........................................37 Karen Sandra Franklin..........................................39 Jan Galvin.....................................................40 Lewis Golinker.................................................42 Bob Griss......................................................44 Colleen Haney..................................................45 Richard Hemp...................................................46 Anna C. Hofmann................................................47 Terry Holden...................................................48 Deborah Kaplan.................................................49 Joy Kniskern...................................................50 Elaine K. Koch.................................................51 Diana Kubovcik.................................................52 Justine Maloney................................................53 Sharon Meek....................................................54 Steve Mendelsohn...............................................55 Reese Michaels.................................................56 Judith K. Montgomery...........................................57 Michael Morris.................................................58 Joyce Munson-Davis. Ph.D.......................................59 Bill Newroe....................................................60 Marcia R. Nunnally, MEd, OTR/L.................................61 Peg O'Brien....................................................62 Alicia Hahne Oestmann..........................................63 Pat Ourand.....................................................64 Joyce Palmer...................................................65 Deborah Parker-Wolfenden, M.Ed. CCC-SLP........................66 Sandra Peterson................................................67 Sheron R. Rice.................................................68 Janina Sajka...................................................69 William M. Salyers, Ed.D.......................................70 Lawrence Scadden, Ph.D.........................................71 Katherine D. Seelman, Ph.D. ...................................73 William L. Self................................................74 Jolene Y. Shimada..............................................75 Patrick Terick.................................................76 Michael Towey..................................................77 Lawrence H. Trachtman..........................................78 Steve Tremblay.................................................80 Debra J. Waln..................................................81 Andy J. Winnegar, Jr...........................................82 Steven C. White, Ph.D..........................................83 Rachel Wobschall...............................................84 Bonnie Wooten-Webb.............................................85 Debra Wynkoop-Green............................................86 Consultants Listed By State....................................87 V. Consultants Thomas C. Backiel Speech/Language Pathologies P.O. Box 1245 Bangor, Maine 04402-1245 Telephone: (207) 947-6056 Scope of Expertise: Maine; All ages; All disabilities; Augmentative communication devices and computers. Expertise in individual problem solving to secure access to assistive technology; knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology, and reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Health insurance coverage Disability insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs; Privately operated loan programs; Clearinghouse model, lending library, equipment banks, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Travel Fee Diane Baranik Funding Specialist STAR Program 300 Centennial Building 658 Cedar Street St. Paul, Minnesota 55155 Telephone: (612) 297-7517 Fax: (612) 297-7200 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology devices and related services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology primarily in the area of private health insurance reimbursement; and, individual problem solving to secure access to assistive technology, and reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Private health insurance Reimbursement: Provides the following types of consultation: Telephone Inquiries Fee/Voluntary Presenter at Meetings and Conferences Fee/Voluntary Willing to Travel Fee/Voluntary Jesse Barth Vermont Assistive Technology Project Director 103 South Main Street, Room 387 Waterbury, Vermont 05671-2305 Telephone: (802) 241-2620 Fax: (802) 244-8103 Scope of Expertise: Nationwide; Working age; All disabilities Full range of assistive technology devices and related services. Expertise in reimbursement of assistive technology, specifically, Social Security Administration Work Incentive Programs: Plans for Achieving Self Support (PASS); and, Impairment Related Work Expenses. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Fee/Voluntary Willing to Travel Fee Allan I. Bergman Deputy Director Governmental Activities Division United Cerebral Palsy Associations, Inc. 1522 K Street N.W. Suite 1112 Washington, D.C. 20005 Telephone: (202) 842-1266 (800) 872-5827 Fax: (202) 852-3519 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology devices and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology, specifically: Medicaid ICF/MRs Community Supported Living Arrangements (CSLA) Education programs (IDEA, Vocational Education, P.L. 89-313) Rehabilitation Act. Knowledgeable in the reimbursement of assistive technology, specifically: Medicare Maternal and Child Health (Title V) Tax Code Health insurance coverage Supplemental Security Income: PASS. Reimbursement: Provides the following types of consultation to all audiences: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Publications/Presentations: Allan Bergman is a leading national expert on Medicaid, Medicaid reform and family support. He has written and presented extensively on these topics and provides technical assistance in many states in a variety of areas related to supporting families with infants, children and adults with disabilities. His work has led to new insight and direction for state service delivery systems, professionals, parents and individuals with disabilities nationwide. He is the Editor of Word from Washington, a bi-monthly publication of UCPA's Governmental Activities Division and Family Support Bulletin both of which are available through United Cerebral Palsy Associations, Inc. Gayl Bowser Coordinator Oregon Technology Access Program 1871 N.E. Stephens Roseburg, Oregon 97470 Telephone: (503) 440-4791 Fax: (503) 440-4771 Scope of Expertise: Oregon; Birth-21 year(s); All disabilities; All assistive technology with particular expertise in augmentative communication and computers. Knowledgeable in barriers identification and systems change problem solving; and, individual problem solving to secure access to assistive technology. Expertise in reimbursement of assistive technology, specifically: Medicaid Education Programs (IDEA, Vocational Education, P.L. 89-313) Insurance Coverage Expertise in alternative strategies for the financing of assistive technology, specifically: Clearinghouse model; lending libraries, equipment bank, etc. Formation of private non-profits. Private funding in Oregon Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Voluntary Travel Fee Resources/Publications: Funding Assistive Technology Devices: A Resource Manual for Oregon Available through the Oregon Technology Access Project Bowser, G., Computers in the Mainstream: A Guide for Special Educators, Oregon Technology Access Project: Douglass ESD, Roseburg, Oregon, 1990. Bowser, G., Computers in Special Education Curriculum, Oregon Technology Access Project: Douglas ESD, Roseburg, Oregon, 1989. David Braddock, Ph.D. Director University Affiliated Program in Developmental Disabilities The University of Illinois at Chicago 1640 West Roosevelt Road Chicago, Illinois 60608 Telephone: (312) 413-1647 Fax: (312) 413-1326 Scope of Expertise: Nationwide; All ages; All disabilities with emphasis on developmental disabilities; Full range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; knowledgeable in individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code Medicare. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs State programs. Reimbursement: Provides the following types of consultation to a wide range of audiences: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Willing to Travel Fee Todd Brickhouse President Brickhouse Design Group, LTD 8 Joan Lane Massapequa Park, New York 11762 Telephone: (516) 795-6962 Fax: (516) 541-1509 Scope of Expertise: Nationwide; All Ages; All Disabilities; Primarily architectural and design with consideration for the type of durable medical equipment the individual(s) may use including a variety of custom furniture. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; and, individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid/Medicare Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code. Expertise in reimbursement of assistive technology, specifically: Rehabilitation Act Health insurance Workers' Compensation Casualty insurance Disability insurance No fault/Medical malpractice Crime victims. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouses, lending libraries, equipment banks, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training (In New York) Voluntary Written Correspondence Voluntary Willing to Travel Fee J.A. Browder, M.D. Developmental Pediatrics Child Development Rehabilitation Center Neuromotor Program Child Development and Rehabilitation Center Oregon Services for Children with Special Healthcare Needs P.O. Box 574 Portland, Oregon 97207-0574 Telephone: (503)494-4632 Fax: (503) 494-4447 Scope of Expertise: Oregon/Washington; Birth-18 year(s); Neuromotor/developmental disabilities; Assistive technology for mobility, communication and self-help needs technology. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology. Expertise in reimbursement of assistive technology, specifically: Medicaid Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Health insurance coverage Expertise in alternative strategies for the financing of assistive technology, specifically: Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Written Correspondence Fee Willing to Travel Fee Carl Brown President Abilities Development Associates P.O. Box 190 Purdys, New York 10578 Telephone: (914) 276-3354 Fax: (914) 276-3354 Scope of Expertise: Nationwide; All ages with experience in teen age and adult population; All Disabilities; Full range of assistive technology devices and services with experience in voice recognition, speech synthesis and telecommunications. Expertise in barriers identification and systems change problem solving in securing access to assistive technology and in individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Health Insurance Workers Compensation Disability insurance. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Clearinghouse model, lending libraries; equipment bank; etc. Private industry Foundations. Reimbursement: Provides the following types of consultation to a wide range of audiences: Telephone Inquiries Fee Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Written Correspondence Fee Willing to Travel Fee Jan Brown Independent Living Counselor Bureau of Rehabilitation Capital Shopping Center Western Avenue Augusta, Maine 04330 Telephone: (207) 624-8090 Scope of Expertise: State of Maine; All ages; All disabilities; Full range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and, knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Voluntary* Personnel/Staff Training Voluntary* *In Central Maine Kenneth Brown Senior Project Engineer Rehab Technology Program ECRI 5200 Butler Pike Plymouth Meeting, Pennsylvania 19462 Telephone: (215) 825-6000 Fax: (215) 834-1275 Scope of Expertise: Nationwide and international; Adults and seniors with disabilities; All disabilities with strength in mobility-related disabilities; Full range of assistive technology devices and related services with primary expertise in the proper use of assistive technologies including the safety, performance efficiency, compatibility of devices, and transportation. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; and individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicare Medicaid Rehabilitation Act Health insurance coverage Workers' compensation Disability insurance. Knowledgeable in alternative strategies for the financing of assistive technology: Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation primarily to healthcare professionals and facilities; government agencies, third-party payers, special-interest groups: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Voluntary Written Correspondence Voluntary Personnel/Staff Training Fee Willing to Travel Fee Lynn Bryant President RehabTech Associates 3640 Dry Creek Court Ellicott City, Maryland 21043 Telephone: (301) 750-0353 Fax: (301) 465-4072 Scope of Expertise: Nationwide; Adults; All disabilities with expertise in orthopedic disorders, neurological dysfunction, spinal cord injury, multiple sclerosis; Job accommodation technology, wheelchairs; seating and positioning, functional electronic stimulation; computer adaptation; "low tech" solutions. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid Medicare Veterans programs. Knowledgeable in reimbursement of assistive technology, specifically: Rehabilitation Act Health Insurance Workers' Compensation Disability Insurance. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending library, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Fee/Voluntary Willing to Travel Fee Publications/Resources President/founder and CEO of a consulting firm on disability-related issues. Authored and edited books and articles on technology for people with disabilities, financing of health care and assistive technology, spinal cord injury care and treatment, and disability research. RehabTech Associates has developed the EIF Funding Locator System (EIF-FLS). This System was developed to provide an easy-to-use method of obtaining technology funding information on a state-by-state basis. Bryant, Lynn, "Questions and Answers on Wheelchairs Standards," TeamRehab Reports, 1991. Phillips, Lynn and A. Nicosia, "An Overview...with Reflections Past and Present of a Consumer in Choosing a Wheelchair System," Clinical Supplement #2, Department of Veterans Affairs, March, 1990. Phillips, Lynn and P. Axelson, "Wheelchair Standards: Pushing for a New Era," Homecare, October, 1989. Phillips, Lynn, "Technology, Body and Soul," Homecare, June, 1984. Phillips, Lynn, "Wheelchairs," Paraplegia News, May 1982. Christopher Button, Ph.D. Deputy Director Governmental Activities Department United Cerebral Palsy Associations, Inc. 1522 K Street N.W., Suite 1112 Washington, D.C. 20005 Telephone: (202) 842-1266 (800) 872-5827 Fax: (202) 842-3519 Scope of Expertise: Nationwide; All ages; All disabilities; All assistive technology and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology, specifically: Rehabilitation Act Education Programs (IDEA, IDEA Part H, Vocational Education P.L. 89-313). Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Resources/Presentations: Christopher has lectured extensively and written on the topic of assistive technology and is a nationally recognized expert on the Individuals with Disabilities Education Act (IDEA) including Part H, Early Intervention for Infants and Toddlers with Disabilities and the Rehabilitation Act of 1973. She was instrumental in the passage of key amendments related to assistive technology that were included in the 1986 reauthorization of the Rehabilitation Act, and the subsequent issuance by the Rehabilitation Services Administration of the Policy memorandum to state agencies that sets important new guidelines concerning implementation of the 1986 rehabilitation technology amendments. Carol Cohen Team Leader Knowledge Dissemination and Utilization National Institute on Disability and Rehabilitation Research U.S. Department of Education 400 Maryland Avenue, S.W. Washington, D.C. 20202-2645 Telephone: (202) 732-5066 Fax: (202) 732-5015 Scope of Expertise: Nationwide; All ages; Full range of assistive technology and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Knowledgeable in reimbursement of assistive technology, specifically: Maternal and Child Health Programs (Title V) Tax Code Health insurance Workers' Compensation Casualty insurance Disability insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending library, equipment banks, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Fee/Voluntary Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Fee/Voluntary John C. De Witt President De Witt & Associates, Inc. 62 Oak Knoll Road Glen Rock, New Jersey 07452-1632 Telephone: (201) 447-5585 Fax: (201) 447-6483 Scope of Expertise: Nationwide; All ages; All disabilities with particular emphasis on sensory/perceptual limitations as they relate to barriers for communication in employment, places of public accommodation, transportation and education; Full range of assistive technology with particular strength in electronic/microprocessor - based technology. Expertise in barriers identification and systems change problem solving in securing access to assistive technology and individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Private Sector (corporate) initiatives. Reimbursement: Provides the following types of consultation to all audiences with special interest in working with Federal/State agencies, service providers, professional organizations and corporations. Telephone Inquiries Fee/Voluntary Private/Contractual Consultation Fee/Voluntary Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Willing to Travel Fee/Voluntary Resources/Publications: John De Witt is a nationally recognized expert on public policy and assistive technology. He has written and lectured extensively on the funding of assistive technology, telecommunications, transportation, financing assistive technology and the lending practices of financial institutions, and tax law. DeWitt, J. 1991. The Role of Technology in Removing Barriers, in Americans With Disabilities: From Policy to Practice. New York. Mendelsohn, S., and De Witt, J. 1991. Assistive Technology in Maryland Funding: Existing Options and Alternative Strategies Under Federal/State Funded Programs, State-Based and Private Initiatives. Baltimore, MD. De Witt, J., and Mendelsohn, S. 1990. Establishing a Foundation to Pay for Assistive Technology. RESNA Technical Assistance Project, 1101 Connecticut Avenue, NM, Suite 700, Washington, D.C. 20036. Alexandra Enders, OTR/L Associate Director The University of Montana The Rural Institute on Disabilities 52 Corbin Hall Missoula, Montana 59812 Telephone: (406) 243-5467 Fax: (406) 243-2349 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology devices and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology, specifically: Medicaid Medicare Health insurance Workers' Compensation Casualty insurance Disability insurance. Knowledgeable in the reimbursement of assistive technology through the Rehabilitation Act. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Do-it-yourself/self approaches Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee* Presenter at Meetings and Conferences Fee* Personnel/Staff Training Fee* Willing to Travel Fee* *negotiable Publications/Presentations: Enders, A., editor. Assistive Technology Sourcebook. RESNA Press. 1990. 1101 Connecticut Avenue, N.W. Washington, D.C. 20036. Alexandra Enders is a leading national expert on public policy and assistive technology. She has written and presented extensively on the financing of assistive technology. Her numerous publications have provided new insight and direction for professionals, parents and individuals with disabilities nationwide. Karen Sandra Franklin Project Manager RESNA Technical Assistance Project 1101 Connecticut Avenue, N.W. Suite 700 Washington, D.C. 20036 Telephone: (202) 857-1140 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology. Knowledgeable in individual problem solving to secure access to assistive technology, and reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Technology-Related Assistance Act for Individuals with Disabilities. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Willing to Travel Fee Resources/Presentations: As the Manager of the RESNA Technical Assistance Project, Ms. Franklin provides technical assistance and information to states on the development and implementation of a consumer-responsive statewide system of technology-related assistance under the Technology-Related Assistance Act for Individuals with Disabilities (P.L. 100-407). Ms. Franklin is a nationally recognized leader on promoting and improving access to assistive technology for individuals with disabilities. She has worked closely with Congress and federal agencies on technology initiatives and she has lectured extensively and written on federal and state funding mechanisms for assistive technology services. Jan Galvin Director Assistive Technology Rehabilitation Engineering Program National Rehabilitation Hospital 102 Irving Street, N.W. Washington, D.C. 20010 Telephone: (202) 877-1498 TDD: (202) 726-3996 Fax: (202) 723-0628 Scope of Expertise: Nationwide; Adult/working-age; mobility related disabilities; Full range of assistive technology devices and services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Knowledgeable in alternative strategies for the financing assistive technology, specifically: Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation to providers, professionals, state agencies, individuals with disabilities and families. Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Papers/Presentations: Jan Galvin has written and presented extensively on the topic of assistive technology. Listed below are some or the most recent papers and presentations: Galvin, J., Ross, D., Implementing The Americans With Disabilities Act: Worksite Accommodations. NARRPS Annual Conference, Washington, D.C. March 1991. Mueller, J., Galvin, J., Developing New Technologies for Worksite Accommodations. Fourth Annual National Disability Management Conference, Florida. October, 1990. Galvin, J., The Role of the Insurance Industry in the Future of Rehabilitation Technology. Invited presentation to the Insurance Research Study Group on Medical Management in Rehabilitation, Washington, D.C. May, 1990. Galvin, J., Phillips, E., What is Appropriate Technology? Howard University Research and Training Center. National Conference on Employment of Minority Persons with Disabilities, Washington, D.C. March 1990. Galvin, J., Editor, An Assistive Technology Resource Handbook. Rehabilitation Engineering Center, National Rehabilitation Hospital, Washington, D.C. September 1989. Lewis Golinker Funding Coordinator, Project Mentor United Cerebral Palsy Associations, Inc. Associate Counsel UCP of New York State 225 Ridgedale Road Ithaca, New York 14850 Telephone: (607) 277-7286 Scope of Expertise: New York State; expertise extends to all states; All ages; All disabilities; Full range assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving; and, reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education Programs Social Security: PASS. Knowledgeable in reimbursement of assistive technology, specifically: Medicare Maternal and Child Health Programs (Title V) Private health insurance. Knowledgeable in alternative strategies for the financing of assistive technology through publicly operated loan programs. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Resources/Publications Mr. Golinker is an attorney with 13 years experience representing persons with disabilities. For 10 years, he worked as a staff attorney for the New York State Protection and Advocacy program where he developed expertise in assistive technology funding. Mr. Golinker is nationally recognized as an expert in assistive technology funding. He has conducted training and provides technical assistance and litigation support for 26 affiliates of UCPA, RESNA Technical Assistance Project, National Association of Protection and Advocacy Systems, and the American Speech-Language-Hearing Association with regard to the funding of assistive technology. Golinker, L., Monograph: Principal Assistive Technology Caselaw, Washington, D.C.: United Cerebral Palsy Associations Inc.; February 1991. Morris, M. & Golinker, L. Assistive Technology: A Funding Workbook, Washington, D.C.: RESNA Press; January 1991. Bob Griss Senior Health Policy Researcher United Cerebral Palsy Associations, Inc. 1522 K Street, N.W. Suite 1112 Washington, D.C. 20005 Telephone: (202) 842-1266 (800) 872-5827 Fax: (202) 842-3519 Scope of Expertise: Nationwide; All ages; All disabilities; All assistive technology and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology, and individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicare Health Insurance. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code Insurance Coverage Workers' Compensation Casualty Insurance Disability Insurance. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Fee/Voluntary Willing to Travel Fee/Voluntary Resources/Presentations: Bob Griss is nationally recognized as an expert on private health insurance, health care financing, and Medicare. He is the author of Access to Health Care, a four volume series of health policy bulletins analyzing the health care needs of persons with disabilities. Colleen Haney Augmentative Communication Specialist/Coordinator Pennsylvania Assistive Device Center 150 S. Progress Avenue Harrisburg, Pennsylvania 17109 Telephone: (800) 222-7372 (PA only) (717) 657-5840 Fax: (717) 657-5895 Scope of Expertise: Pennsylvania (ideas may be generalized across the nation; Birth-23 year(s); All disabilities; Augmentative communication devices, computer access, writing and vision aids, amplification aids, environmental control units. Knowledgeable in reimbursement of assistive technology, specifically education programs (IDEA, P.L. 99-457, Vocational Education, P.L. 89-313). Expertise in alternative strategies for the financing of assistive technology, specifically: Innovative state planning Publicly operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Fee Willing to Travel Fee Publications "Implementing the Technology: Successful Use of Minspeak and Words Strategy" Proceedings of the 4th Annual Minspeak Conference, St. Louis, MO, 1989. "The Augmentative Communication Profile" Pennsylvania Assistive Device Center, Harrisburg, Pennsylvania, 1986, revised 1989. "Across All Levels: Minspeak in Action" Proceedings of the 3rd Annual Minspeak Conference, Anneheim, California, 1988. "Over 100 Minspeak Systems in Pennsylvania: What's Happening?" Proceedings of the Second Annual Minspeak Conference, New Orleans, 1987. "The Assessment and Evaluation of Clients for Augmentative Communication Systems: The Pennsylvania Model," National Planners Conference on Assistive Device Service Delivery, Chicago, Illinois 1987. Richard Hemp Co-ordinator Technical Assistance University Affiliated Program in Developmental Disabilities University of Illinois at Chicago 1640 West Roosevelt Road Chicago, Illinois 60608 Telephone: (312) 413-1976 Fax: (312) 413-1326 Scope of Expertise: Nationwide; All ages; All disabilities with emphasis on developmental disabilities; Full range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; knowledgeable in individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs State Agency programs. Reimbursement: Provides the following types of consultation to a wide range of audiences: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Travel Fee Anna C. Hofmann Marketing Coordinator Phonic Ear, Inc. 3880 Cypress Drive Petaluma, California 94954-7600 Telephone: (707) 769-1110 Fax: (707) 769-9624 Scope of Expertise: Nationwide; Primarily children and young adults; all disabilities with primary interest in cerebral palsy and other causes of loss of speech, i.e. accident, stroke, etc. Augmentative communication devices. Expertise in individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Health insurance. Reimbursement: Provides the following types of consultation: Presenter at Meetings and Conferences Fee Willing to Travel Fee* *Fee is conditional Publications: "The Many Faces of Funding ...." Monthly newsletter on funding and federal legislation affecting individuals who are nonverbal. Terry Holden Physical Therapist/Therapy Coordinator Children's Special Health Services P.O. Box 16650 Salt Lake City, Utah 84116-0650 Telephone: (801) 538-6165 Fax: (801) 538-6510 Scope of Expertise: Utah; Birth-18 year(s); Disabilities resulting from cerebral palsy, spina bifida, muscular dystrophy, and congenital. Assistive technology for mobility, seating and positioning, adaptive recreational equipment, augmentative communication. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology. Expertise in individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid Maternal and Child Health Programs (Title V) Health Insurance. Knowledgeable in alternative strategies for the financing of assistive technology in the state of Utah. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Willing to Travel Fee Deborah Kaplan Director Division of Technology Policy World Institute on Disability 510 16th Street Oakland, California 94612-1522 Telephone: (510) 763-4100 Fax: (510) 763-4109 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology devices and related services with expertise in telecommunications systems, services and devices. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; and, individual problem solving to secure access to assistive technology. Expertise in financing assistive technology for individuals with disabilities in telecommunications systems. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Publications/Presentations: Deborah Kaplan is nationally recognized for her work in the field of telecommunications systems and the financing of assistive technology for individuals with disabilities. Ms. Kaplan has presented and written extensively on this topic. Resources on the issue are available by contacting the World Institute on Disability. Joy Kniskern Rehabilitation Technology Manager Georgia Division of Rehabilitation Services 878 Peachtree Street, N.E. Room 706 Atlanta, Georgia 30309 Telephone: (404) 853-9151 Fax: (404) 853-9059 Scope of Expertise: Nationwide with expertise in Georgia; Adults (16-65 years); All disabilities; General knowledge on the full range of assistive technology and related services with a commitment to identifying funding alternatives. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act. Knowledgeable in alternative strategies for the financing of assistive technology, specifically, publicly operated loan programs. Reimbursement: Provides the following types of consultation to state rehabilitation agencies: Telephone Inquiries Voluntary Publications/Presentations: "The Funding Dilemma, A Primer for Novices," News Update, Center for Rehabilitation Technology, Georgia Institute of Technology, April, 1990. "New Uses of Technology for Transdisciplinary Service Delivery Teams," RESNA, 1990. "A Systems Integration Model for Assistive Technology Resource Development," Touch the Future Proceedings, 1989. Low Cost Aids for Daily Living for the Geriatric Population, Panel Coordinator, Georgia Conference on Aging, May, 1989. Technology and Employment, Panel Coordinator, Touch the Future, December, 1986. Elaine K. Koch Funding Coordinator Prentke Romich Company 1022 Heyl Road Wooster, Ohio 44691 Telephone: (800) 262-1984 Fax: (216) 263-4829 Scope of Expertise: Nationwide; All ages; All disabilities; Augmentative communication devices. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology. Expertise in reimbursement of assistive technology specifically: Health insurance coverage Medicaid Medicare. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Willing to Travel Fee Presentations: Funding Options Panel, Add-Tech '90, A Conference n Assistive Technology, Boston, MA, September 1990. AAC Devices Paid for by State Medicaid Programs, Poster, 6th Annual Minspeak Conference, Minneapolis, MN, October 1991. Let's Talk About Finding, Panel, Turning on to Technology, Ohio Special Education regional Resource Centers, Kent State University, March 1991. Selecting, Funding and Supporting Augmentative Communication Systems, Panel, Ohio Speech and Hearing Convention, Toledo, March 1990 . Diana Kubovcik Clinical Manager Options For Elders Central Ohio Area Agency on Aging 275 S. Gift Street Columbus, Ohio 43214 Telephone: (614) 645-7250 Fax: (614) 645-3884 Scope of Expertise: Nationwide; Seniors; All disabilities; Full range of assistive technology devices and related services. Expertise includes mental health needs, independent living needs, elder abuse issues and related management and administration components of a community-based system for seniors. Expertise in barriers identification and systems change problem solving in securing access to assistive technology. Knowledgeable in planning a complete community-based system of care for seniors in a large urban area. Expertise includes planning a system of care for a large urban area including central access and leveraging of funding from a variety of several sources for community-based home care and mental health services. Reimbursement: Provides the following types of consultation with special expertise in agency (public and private) planning strategies; professionals in urban areas in particular: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Willing to Travel Fee Justine Maloney Executive Committee Learning Disabilities Association 3115 North 17th Street Arlington, Virginia 22201 Telephone: (703) 243-2614 Fax: (703) 243-2614 Scope of Expertise: Nationwide; All ages; Learning disabilities, attention deficit disorder (ADD); Special emphasis on computers. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Sharon Meek Technology Case Manager Coordinator Access Group 1776 Peachtree Road, N.W. Suite 310 N Atlanta, Georgia 30309 Telephone: (800) 821-8580 Fax: (404) 888-9091 Scope of Expertise: Nationwide with expertise in southeast region of the United States; All ages; All disabilities; Full range of assistive technology devices and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Corporate strategies. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Steven Mendelsohn Smiling Interface P.O. Box 2792 Church Street Station New York, New York 10008-2792 Telephone: (212) 222-0312 (415) 864-2220 Scope of Expertise: Nationwide; all ages; All disabilities; Full range of assistive technology and related services with special emphasis on sensory aids technology. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Rehabilitation Act Tax Code/Tax Law Health insurance coverage Workers' Compensation Casualty insurance Disability insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Manufactures/vendor-based financing Assistive technology company market development strategies. Reimbursement: Provides the following types of consultation: Telephone Inquiries Fee/Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Willing to Travel Fee Publishing Fee Publications/Presentations: Steve Mendelsohn is a consumer who is an attorney and rehabilitation practitioner. His practical experience and expertise bring an insightful perspective to the area of funding. He has lectured extensively on technology and policy issues. He was the 1989 Switzer Scholar for the report, "Public Policy in Relation to Assistive Technology." Mendelsohn, S., Financing Adaptive Technology: A Guide to Sources and Strategies for Blind and Visually Impaired Users, Smiling Interface, 1987, New York. Reese Michaels President Hygeia Medical Supply Company, Inc. 555 Westbury Avenue Carle Place, New York 11514 Telephone: (516) 997-8150 Fax: (516) 997-8093 Scope of Expertise: New York (ideas can be generalized to other states); All ages; All disabilities All technology devices and related services. Expertise in reimbursement of assistive technology through Medicare. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education programs (IDEA, Vocational Education, P.L. 89-313) Health insurance Workers' Compensation Casualty insurance Disability insurance. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Written Correspondence Voluntary Judith K. Montgomery Director Special Education Fountain Valley School District 35 Lakeview Irvine, California 92714 Telephone: (714) 857-1478 (714) 843-3280 Fax: (714) 843-3265 Scope of Expertise: Nationwide; Birth-22 year(s). All disabilities with special expertise in cerebral palsy; ALS, traumatic brian injury; cytomegalic virus (CMV); and other developmental disabilities. Assistive technology used for teaching and learning academics, school and leisure. Expertise in augmentative and alternative communication devices. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Education Programs (IDEA, Vocational Education, P.L. 89-313) Private health insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Privately operated loan program Clearinghouse model, lending libraries, equipment bank, etc. Local support groups National philanthropic organizations. Reimbursement: Provides the following types of consultation and technical assistance to state agencies, school districts and interagency cooperatives: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Michael Morris Deputy Executive Director United Cerebral Palsy Associations, Inc 1522 K Street, N.W. Suite 1112 Washington, D.C. 20005 Telephone: (202) 842-1266 (800) 872-5827 Fax: (202) 842-3519 Scope of Expertise: Nationwide; All ages; Across disabilities; Full range of assistive technology devices and related services. Knowledgeable in individual problem solving to secure access to assistive technology. Expertise in barriers identification and systems change problem solving in securing access to assistive technology and reimbursement of assistive technology, specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Tax Code. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Willing to Travel Fee Resources/Publications: Michael Morris is nationally recognized as a leader in promoting improved access to assistive technology. He has written and presented extensively on the topic of the financing of assistive technology. Through Michael's direction, UCPA has developed a significant record of accomplishments in policy and program development with regard to assistive technology on a state and national level. Michael is also the project manager for NCD's National Finance Study on Assistive Technology for Individuals with Disabilities. Morris, M. & Golinker, L. Assistive Technology: A Funding Workbook, Washington, D.C.: RESNA Press, January 1991. Joyce Munson-Davis, Ph.D. Speech Pathologist Child and Development Rehabilitation Center Oregon Services for Children with Special Healthcare Needs P.O. Box 547 Portland Oregon 97207-0574 Telephone: (503) 494-4632 Fax: (503) 494-4447 Scope of Expertise: Oregon/Washington; infants and children with neuromotor/metabolic/traumatic/developmental disabilities; birth to 21 year(s); Mobility and communication assistive technology and related services. Expertise includes barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Health Insurance. Knowledgeable in the financing of assistive technology, specifically through alternative strategies (i.e. clearinghouse model, lending libraries, equipment banks, etc.). Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Written Correspondence Fee Willing to Travel (limited) Fee Bill N. Newroe Funding Specialist New Mexico Technology Assistance Program State of New Mexico Department of Education Division of Vocational Rehabilitation 604 W. San Mateo Santa Fe, New Mexico 87505 Telephone: (505) 827-3533 (800) 866-2253 (New Mexico) Fax: (505) 827-3746 Scope of Expertise: New Mexico/Southwest; All ages; All disabilities; Full range of assistive technology and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Clearinghouse model, lending libraries, equipment bank, etc. Private volunteer organizations in New Mexico Information sharing with database management systems Client and referral coordination systems. Reimbursement: Provides the following types of consultation: Telephone Inquiries Fee/Voluntary Private/Contractual Consultation Fee/Voluntary Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Fee/Voluntary Willing to Travel Fee/Voluntary Marcia R. Nunnally, MEd, OTR/L Occupational Therapist-Private Practice P.O. Box 17282 Spartanburg, S.C. 29301 Telephone: (803) 574-3352 Scope of Expertise: Nationwide with expertise in South Carolina; All ages with special interest in technology for seniors; All disabilities; Adaptive computer access, alternative input methods, augmentative communication, low-tech devices, environmental control, seating and positioning, and independent mobility. Expertise in barriers identification and systems change problem solving in securing access to assistive technology and individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Health insurance coverage Workers' compensation Disability insurance. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Clearinghouse model, lending libraries, equipment banks Local resources and private groups. Reimbursement: Provides training and assistance to a varied audience. Currently preparing a unique training program for professionals and caregivers in long-term care. Provides introductory training on assistive technology for all ages and disabilities including the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Publications/Presentations: Nunnally, M. "Funding; the Private Practice Perspective" Spectrum Fall, 1989. Developed/Instructed graduate course, "Technology and Exceptional Populations." Peg O'Brien Funding Policy Analyst Technology-Related Assistance for Individuals with Disabilities (TRAID) Project NYS Office of Advocate for the Disabled One Empire State Plaza, 10th Floor Albany, New York 12223-0001 Telephone: (518) 474-2825 (voice) Fax: (518) 473-6005 (TDD) Scope of Expertise: Nationwide regarding the State of New York and general information pertaining to a broad range of disabilities; All ages; Broad range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; Individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Medicaid Rehabilitation Act Education Programs (IDEA, Vocational education, P.L. 89-313) Supplemental Security Income: PASS Medicare Maternal and Child Health Programs (Title V) Health insurance coverage. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Fee/Voluntary* Personnel/Staff Training Fee/Voluntary* Willing to Travel Fee/Voluntary* *Pending State of New York Approval Alicia Hahne Oestmann Funding Coordinator Nebraska Assistive Technology Project 301 Centennial Mall South 6th Floor P.O. Box 94987 Lincoln, Nebraska 68509 Telephone: (402) 471-0733 Fax: (402) 471-2701 Scope of Expertise: Nebraska; All ages; All disabilities; Full range of assistive technology devices and services Expertise barriers identification and systems change problem solving in securing access to assistive technology; and individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Health insurance coverage. Reimbursement: Provides the following types of consultation in Nebraska. Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Willing to Travel Voluntary Pat Ourand MS, CCC-SP Funding Coordinator Maryland Technology Assistance Program 2301 Argonne Drive Baltimore, Maryland 21218 Telephone: (410) 554-3202 Fax: (410) 554-3206 Scope of Expertise: State of Alaska; Primarily adults and seniors; All disabilities; Augmentative/Alternative Communication Devices and related services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Medicare Rehabilitation Act Education programs (IDEA, Vocational Education, P.L. 89-313) Workers' Compensation. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Voluntary Willing to Travel Fee/Voluntary Resources: An assistive technology funding resource book for the State of Maryland will soon be available through the Maryland Technology Assistance Program. Joyce Palmer Administrator Assistive Technologies of Alaska 400 D Street, Suite 230 Anchorage, Alaska 99501 Telephone: (907) 274-0138 Fax: (907) 274-0516 Scope of Expertise: Nationwide with expertise in the State of Alaska; Primarily adults; Individuals who are blind or low vision is specialty with working knowledge of all disabilities; Assistive technology for individuals who are blind and low vision (i.e. scanners, CCTV(s), speech programs, electronic braillers.) Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Rehabilitation Act Tax Code Workers' Compensation. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Willing to Travel Voluntary* *Reimbursement for costs associated with travel Resource: Fact sheet on Alaska assistive technology funding resources avaialble. Deborah Parker-Wolfenden, M.Ed. CCC-SLP Funding Researcher/Policy Analyst Division of Special Education Maine Department of Education RR4 Box 4325 Freeport, Maine 04032 Telephone: (207) 688-4809 Scope of Expertise: Maine (ideas can be generalized to other states; Birth-64 year(s); All disabilities with primary interest in communication disabilities; Full range of assistive technology with expertise in augmentative communication devices. Expertise in reimbursement of assistive technology, specifically: Medicaid Education Programs (IDEA, Vocational Education, PL 89-313). Knowledgeable in reimbursement of assistive technology, specifically: Rehabilitation Act Maternal and Child Health Programs (Title V) Health insurance coverage. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Fee Willing to Travel Fee Publications/Presentations: "How to Pay for Assistive Technology; Worst Care Scenario to the Best Case Reality." July 1991. "Public and Private Insurance Access Issues for Children and Families." April 1991. "Accessing Third Party Sources for Educational Services: Is It The Pot of Gold at the End of the Rainbow." May 1990. Sandra Peterson Third Party Billing Coordinator Oregon Department of Education Office of Medical Assistance Programs 700 Pringle Parkway Suite 600 Salem, Oregon 97310 Telephone: (503) 378-3598 Fax: (503) 373-7968 Scope of Expertise: Oregon; Birth-21 year(s); All disabilities; All assistive technology devices and related services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology and reimbursement of assistive technology, specifically: Medicaid Education Programs. Reimbursement: Provides the following types of consultation, training and technical assistance for state agencies, providers and professionals. Telephone Inquiries Fee/Voluntary Private/Contractual Consultation Fee/Voluntary Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Fee/Voluntary Willing to Travel Fee/Voluntary Sheron R. Rice Special Projects Administrator American Foundation for the Blind New York, New York 10011 Telephone: (212) 620-2117 Fax: (212) 620-3127 Scope of Expertise: Nationwide; All ages; All disabilities with primary interest in individuals who are visually impaired or blind; assistive technology for visually impaired or blind. Knowledgeable in individual problem solving to secure access to assistive technology. Expertise in reimbursement of assistive technology through alternative strategies, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Voluntary Willing to Travel Fee* *depending on agency involved, if reimbursed for travel and per diem, fee may be waived. Presentations: Rice, S. Schreier, E. "Funding Assistive Technology Charting the Waters of Loan Programs" Paper presented at the California State University Conference, March 1991. Janina Sajka President, Baytalk General Manager, WIDNET World Institute on Disability 510 16th Street Oakland, California 94612-1502 Telephone: (510) 763-4100 Fax: (510) 763-4109 Scope of Expertise: Nationwide; All ages; All disabilities with expertise in blind and vision disabilities; Computers and telecommunications systems. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; knowledgeable in individual problem solving to secure access to assistive technology and alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Private loan programs Clearinghouse model, lending libraries; equipment bank; etc. Reimbursement: Provides the following types of consultation to a wide range of audiences: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Fee Willing to Travel Fee William M. Salyers, Ed.D Director Computer Assistive Technology Services National Easter Seal Society 70 east Lake Street, 9th Floor Chicago, IL 60601-5907 Telephone: (312) 726-6200 Fax: (312) 726-1494 Scope of Expertise: Nationwide; All ages; All disabilities; Computer assisted technology access and technology access in employment. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology, specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education P.L. 89-313) Workers' Compensation Casualty insurance Disability insurance. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid/Medicare Maternal and Child Health Programs (Title V) Tax Code Private health insurance Expertise in alternative strategies for the financing of assistive technology including; Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Corporate strategies. Reimbursement: Specializes in telephone assistance; skilled in developing an awareness of technology, providing an orientation to technology, and in training at a technical level. Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Willing to Travel Fee Lawrence A. Scadden, Ph.D. Director Rehabilitation Engineering Center Electronic Industries Foundation 919 18th Street N.W Suite 900 Washington, D.C. 20006 Telephone: (202) 955-5823 Fax: (202) 955-5837 Scope of Expertise: Nationwide; All ages; All disabilities with expertise in sensory-related disabilities; Full range of assistive technology devices and related services with expertise in computers and sensory-related technology. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology through the Rehabilitation Act. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Education programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health (Title V) Tax Code Health insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Fee/Voluntary Personnel/Staff Training Fee Willing to Travel Fee Resource Information/Presentations: The Electronic Industries Foundation conducts research related to public and private sector policies and practices that affect the production and distribution of technology for people with disabilities. Dr. Scadden has conducted extensive research on the development and evaluation of assistive technology for people with visual and auditory impairments. He has served in an advisory capacity for numerous private organizations both nationally and internationally. He is a nationally recognized expert on assistive technology for individuals with sensory impairments. Dr. Scadden has written and presented extensively on a range of the topics related to assistive technology. Katherine D. Seelman, Ph.D. Research Specialist National Council on Disability 800 Independence Avenue, S.W. Washington, D.C. 20540 Telephone: (202) 267-3846 Fax: (202) 453-4240 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology devices and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology. Knowledgeable in individual problem solving to secure access to assistive technology. Knowledgeable in reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Voc. Ed, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code Health insurance coverage Workers' compensation Casualty insurance Disability insurance Expertise in the financing of assistive technology through alternative strategies including: Publically operated loan programs Privately operated loan programs Clearinghouse model, lending library, equipment bank,etc. Reimbursement: Provides the following types of consultation with strengths in training government agencies, professionals and consumers. Experience with problems of access to buildings, transportation and communications. Conducted seminars and outreach to universities, associations, government and industry. Telephone Inquiries Voluntary Willing to Travel Voluntary Presenter at Meetings and Conferences Voluntary Willing to travel Fee William L. Self Vocational Rehabilitation Counselor State of Oregon 1245 S.E. 122nd Avenue Portland, Oregon 97233 Telephone: (503) 257-4412 Fax: (503) 257-4333 Scope of Expertise: Oregon; 18-65 years; Orthopedic and visual disabilities; Assistive technology for individuals with orthopedic and/or visual disabilities. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology and individual problem solving to secure access to assistive technology. Expertise in reimbursement of assistive technology, specifically: Rehabilitation Act Workers' compensation. Knowledgeable in the financing of assistive technology through alternative strategies (i.e. clearinghouse model, lending libraries, equipment bank, etc.). Reimbursement: Provides the following types of consultation primarily with clients of vocational rehabilitation: Telephone Inquiries Voluntary Willing to Travel Voluntary Jolene Y. Shimada Speech-language Pathologies M.S.-CCC 1394 Amesbury Circle Salt Lake City, Utah 84121 Telephone: (801) 277-7162 (Home) (801) 268-8585 (Work) Scope of Expertise: Salt Lake City, Utah; 3-21 years; Individuals with physical and cognitive disabilities; Augmentative communication devices. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; and, individual problem solving to secure access to assistive technology. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs; State agency funding Case development/case management for funding justification. Reimbursement: Provides the following types of consultation to those who have been evaluated by the state Alternative/Augmentative Communication Teams: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Patrick A. Terick Director of Governmental Affairs Cerebral Palsy Research Foundation 2021 North Old Manor P.O. Box 8217 Wichita, Kansas 67208-0217 Telephone: (316) 688-1888 Fax: (316) 688-5687 Scope of Expertise: Midwest/State of Kansas; All Ages with primary interest in 18 years and older; All disabilities; Primarily employment-related technology. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Tax Code State General Funds. Knowledgeable in reimbursement of assistive technology, specifically: Medicare Medicaid Maternal and Child Health Programs (Title V) Health insurance coverage Workers' Compensation Casualty insurance Disability insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Voluntary Willing to Travel Fee Michael Towey Speech/Language Pathologist P.O. Box 287 - Waldo Hospital Belfast, Maine 04915 Telephone: (207) 338-2500 Fax: (207) 338-6029 Scope of Expertise: Maine; Birth-21 year(s); Communication disabilities; Augmentative Communication Systems with expertise in pre-language training. Knowledgeable in individual problem solving to secure access to assistive technology and reimbursement of assistive technology, specifically: Medicaid Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Health insurance. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Fee Written Correspondence Fee Willing to Travel Fee Lawrence H. Trachtman Assistant Project Director North Carolina Assistive Technology Project 1110 Navaho Drive, Suite 101 Raleigh, North Carolina 27609 Telephone: (919) 850-2787 Fax: (919) 850-2792 Scope of Expertise: Nationwide with expertise in South and North Carolina; All ages; All disabilities; Full range of assistive technology devices and related services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; and, individual problem solving to secure access to assistive technology. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Identification of funding resources in South/North Carolina. Reimbursement: Provides the following types of consultation expertise in state planning especially in the area of alternative approaches to financing such as loan programs: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Willing to Travel Voluntary Publication/Resources/Presentations: Editor-in-Chief Elect, Assistive Technology, the official journal of RESNA (November 1991 to present). Wiles, D.L. and Trachtman, L.H. "Payment for Assistive Technology: Options for the 1990s," Proceedings of the Southeast Regional Symposium on Assistive Technology: Current Practices in Service Delivery, March 1990, Myrtle Beach, South Carolina. Trachtman, L.H. "Developing an Assistive Technology Funding Resources Guide in South Carolina," Proceedings of Touch the Future, Second Southeast Regional Conference on Assistive Technology, November 1989, Atlanta, GA. "State Funding Resources Identification." Presented for the Center for Special Education Technology State Forum Audio Teleconference on Technology Funding - Issues and Answers, Part 1 May 1990, West Columbia, S.C. "South Carolina Statewide Initiative." Presented for the S.M.A.R.T. Exchange audio teleconference on Reimbursement Strategies for Assistive Technology Devices, August 1989, West Columbia, SC. "Innovative and Alternative Programs for Funding Assistive Technology," A special session hosted by SIG-01. Organizer and panel moderator at the 13th Annual RESNA Conference on Rehabilitation Technology, June 1990, Washington, DC. "A Guide to Funding Resources for Assistive Technology in South Carolina, " Anderson, S.L., Stevens, J.H. and Trachtman, L.H. January 1990. "Funding Resources for Assistive Technology in South Carolina," Report of a symposium held July 11-13, 1989. Trachtman, L.H. Langton, A.J. and Anderson, S.L. August 1989. Steven C. Tremblay Founder/Executive Director Adaptive Living Programs for Handicapped Americans (ALPHA) One Independent Living Center 85 E. Street South Portland, Maine 04106 Telephone: (207) 767-2189 Scope of Expertise: Maine (ideas can be generalized to other states); All ages; All disabilities; Full range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Medicaid/ Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Tax Code Insurance Coverage. Knowledgeable in reimbursement of assistive technology, specifically: Private health insurance Workers' Compensation Casualty insurance Disability insurance. Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs; Privately operated loans programs; Clearinghouse model; lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Resources: Founder, Wheelchairs Unlimited Founder and Executive Secretary, Adaptive Environments Information HUB manager for Maine Consumer Information and Technology Training Exchange (CITE) Debra J. Waln Medical Policy Analyst Office of Medical Assistance Programs 203 Public Service Building Salem, Oregon 97310 Telephone: (503) 378-5581 Fax: (503) 373-7689 Scope of Expertise: Oregon; All disabilities; Augmentative communication devices and related services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology. Expertise in reimbursement of assistive technology through Medicaid. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation training and technical assistance to state agencies, providers and professionals: Telephone Inquiries Voluntary Presenter at Meetings and Conferences Voluntary Written Correspondence Voluntary Willing to Travel Reimbursement Andy J. Winnegar, Jr. Director New Mexico Technology Assistance Program State of New Mexico Department of Education Division of Vocational Rehabilitation 604 W. San Mateo Santa Fe, New Mexico 87505 Telephone: (505) 827-3533 Fax: (505) 827-3746 Scope of Expertise: Nationwide; All ages; All disabilities; Full range of assistive technology and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and reimbursement of assistive technology, specifically: Medicaid Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Health insurance coverage Workers' compensation Casualty insurance Disability insurance. Reimbursement: Provides the following types of consultation to consumers and state agencies: Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Willing to Travel Fee Steven C. White, Ph.D. Director Healthcare Financing Division American Speech-Language-Hearing Association 10801 Rockville Pike Rockville, Maryland 20852 Telephone: (301) 897-5700 Fax: (301) 571-0457 Scope of Expertise: Nationwide; All ages; All disabilities; Augmentative communication devices. Expertise in reimbursement of assistive technology specifically: Medicaid Medicare Health insurance coverage. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Resources: Steve White is nationally recognized as a leader in promoting and improving access to assistive technology. He has worked closely with Congress and federal agencies on technology initiatives and has written and lectured extensively on the financing of assistive technology for individuals with disabilities with expertise on augmentative and alternative communication devices. Rachel Wobschall Executive Director STAR Program 300 Centennial Building 658 Cedar Street St. Paul, Minnesota 55155 Telephone: (612) 297-1554 Fax: (612) 297-7200 Scope of Expertise: Nationwide with expertise in the State of Minnesota; All ages; All Disabilities; Full range of assistive technology devices and services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; knowledgeable in individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology, specifically: Medicaid/Medicare Rehabilitation Act Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Private Health Insurance Workers' Compensation Casualty insurance. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs; Privately operated loan programs; Clearinghouse model, lending libraries, equipment bank, etc. Reimbursement: Provides the following types of consultation to a wide range of audiences: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Fee/Voluntary Written Correspondence Fee/Voluntary Willing to Travel Fee/Voluntary Presentations: Rachel Wobschall has written and presented extensively of the subject of interagency collaboration and agency initiatives which promote the use of assistive technology as a model for other states. Rachel is the Executive Director of the Governor's Advisory Council on Technology for People with Disabilities and is a recognized national leader in promoting improved access to assistive technology and the involvement of primary and secondary consumers in the process of systems change. Bonnie Wooten-Webb Project Director Access Group 1776 Peachtree Road, N.W. Suite 310 N Atlanta, Georgia 30309 Telephone: (800) 821-8580 Fax: (404) 888-9091 Scope of Expertise: Nationwide with expertise in the southeast region of the United States; All ages; All disabilities; Full range of assistive technology devices and related services. Expertise in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology, and reimbursement of assistive technology specifically: Rehabilitation Act Education Programs (IDEA, Vocational Education, PL 89-313). Expertise in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Privately operated loan programs Clearinghouse model, lending libraries, equipment bank, etc. Corporate strategies. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Fee Presenter at Meetings and Conferences Fee Personnel/Staff Training Fee Written Correspondence Voluntary Willing to Travel Fee Debra Wynkoop-Green Director Planning and Program Development 120 North 200 West #201 Salt Lake City, Utah 84103 Telephone: (801) 538-4200 Fax: (801) 538-4279 Scope of Expertise: Utah; Children and adults with developmental disabilities; All assistive technology and related services. Knowledgeable in barriers identification and systems change problem solving in securing access to assistive technology; individual problem solving to secure access to assistive technology; and, reimbursement of assistive technology specifically: Medicaid Education Programs (IDEA, Vocational Education, P.L. 89-313) Maternal and Child Health Programs (Title V) Health Insurance. Knowledgeable in alternative strategies for the financing of assistive technology, specifically: Publicly operated loan programs Clearinghouse model; lending library; equipment bank, etc. One time carry over requests Private donations. Reimbursement: Provides the following types of consultation: Telephone Inquiries Voluntary Private/Contractual Consultation Voluntary Presenter at Meetings and Conferences Voluntary Personnel/Staff Training Voluntary Written Correspondence Voluntary Willing to Travel Voluntary* *Reimbursement requested for out-of-state travel. Consultants Listed By State Alaska Joyce Palmer California Anna Hofmann Deborah Kaplan Judith K. Montgomery Janina Sajka District of Columbia Allan I. Bergman Christopher Button, Ph.D. Carol Cohen Karen Sandra Franklin Jan Galvin Bob Griss Michael Morris Lawrence Scadden, Ph.D. Katherine D. Seelman, Ph.D. Georgia Joy Kniskern Sharon Meek Bonnie Wooten-Webb Illinois David Braddock, Ph.D. Richard Hemp William M. Salyers, Ed.D. Kansas Patrick A. Terick Maine Jan Brown Michael Towey Steve Tremblay Deborah Parker-Wolfenden Thomas C. Backiel Maryland Lynn Bryant Pat Ourand, MS, CCC-SP Steve C. White, Ph.D. Minnesota Diane Baranik Rachel Wobschall Montana Alexandra Enders, OTR/L Nebraska Alicia Hahne Oestmann New Jersey John C. DeWitt New York Todd Brickhouse Carl Brown Lewis Golinker Steve Mendelsohn Reese Michaels Peg O'Brien Sheron R. Rice New Mexico Bill N. Newroe Andy J. Winnegar, Jr. North Carolina Lawrence H. Trachtman Ohio Elaine K. Koch Diana Kubovcik Oregon Gayl Bowser J.A. Browder, M.D. Sandra Peterson William L. Self Debra J. Waln Joyce Munson-Davis, Ph.D. Pennsylvania Kenneth A. Brown Colleen Haney South Carolina Marcia R. Nunnally Utah Debra Wynkoop-Green Terry Holden Jolene Y. Shimada Vermont Jesse Barth Virginia Justine Maloney Section Nine: Equality In Access To Knowledge Through Telecommunications For All Individuals Including Those With Functional Limitations NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Equality In Access To Knowledge Through Telecommunications For All Individuals Including Those With Functional Limitations May, 1992 by John De Witt of De Witt & Associates, Inc. Glen Rock, New Jersey BACKGROUND In the 1990's, telecommunications is construed to mean electronically-based technology, connections through the telephone and associated networks, radiowaves, and increasingly, with applications of light.[******] All telecommunications systems require an originating device, one or more receivers, and a transmission channel, that is a means of communication: radio waves, fiber optics, copper wire, coaxial cable, communications satellite, wired or infra-red local area network, or combination of these. Little more than a decade ago, it was easy; telephones were used for voice conversations; computers for data manipulation, and radio, Tv or cable for entertainment and news. The general public usually considered each technology as separate, the potential of interacting with another technology only indeterminately perceived. Today, simple distinctions are a thing of the past. Telecommunications are global. Telephones are virtually indistinguishable from computers and other microprocessor based technologies. Radio and light waves are as common as wire as channels of communications. The products, services, components and features that serve to convey, manipulate and store information, whether by sound, data or video, are virtually common to all electronically-based hardware, firmware and software. For individuals with limitations in hearing, seeing, moving, speaking or cognition, the explosion of telecommunications offers opportunities as never before. None the less, technical and economic barriers continue to impede access to this rapidly changing world. Unless dramatic, comprehensive and coordinated action is taken at the Federal, state and local level, and within private industry, individuals with disabilities will be excluded from the full enjoyment and participation made possible through global telecommunications. Concentration upon telecommunications access was not originally contemplated as a separate, vitally distinct aspect to this study of financing of assistive technology for individuals with disabilities. However, it has become apparent as the study has unfolded, that both technical and economic issues in this area must be addressed if assistive technology is to effectively become a tool for integration of individuals with disabilities into educational environments, the workplace and community life. Several areas must be explored:  a modern understanding of the term "universal service" in the context of today's and tomorrow's technologies, especially with respect to individuals with disabilities;[*******]  definitions applicable to telecommunications and disability;  Federal and state laws affecting telecommunications; and  funding mechanisms designed to offset the high cost of telecommunications. Barriers are not only technical; they are equally, economic. Without conscious, concentrated effort to stimulate accessible design elements into every type of electronic equipment, physical access limitations will continue to deny individuals with disabilities entre into the full range of telecommunications. Without conscious, concentrated effort to stimulate an affordable system of global telecommunications, individuals with disabilities will continue to have barriers posed to their full participation in society. For example, a residential telephone for an individual without a disability can be purchased for under $50 including advanced communications features. An individual who cannot speak or is deaf must spend $200 or more for a text telephone, without advanced features. On the extreme end of the scale, a deaf-blind individual needs a unique device, TeleBraille 2, costing several thousand dollars - just for very basic communication. An individual with upper mobility limitations requiring an alternative switch technique to operate devices, must pay about $400 for a telephone that can only reach a human operator, nothing more. For an individual needing access to information, such as most daily newspapers provide, but who cannot read print or hold the paper, electronic databases typically charge up to $15 per hour or more for access to newspaper databases. Of course, the individual first must have a PC, modem, access software for converting the screen display into speech or an alternative method of entering keystrokes. In short, whether it's the equipment needed to communicate or the enhanced service required to access information in an alternative manner, telecommunications for individuals with disabilities is costly. Nothing short of a comprehensive, coordinated effort at the Federal, state and local level as well as within the private sector, will ameliorate current and expanding inequities. Reform of Federal laws, regulations and practices relative to assistive technology should place special emphasis upon telecommunications access, and thereby access to the global information age. In 1988, the U.S. Congress established a national policy regarding assistive technology, in its Preamble to the Technology-Related Assistance Act, when it found that for: some individuals with disabilities, assistive technology is a necessity that enables them to engage in or perform many tasks...[and] to have greater control over their own lives; participate in and contribute more fully to activities in their home, school, and work environments, and in their communities; interact to a greater extent with non-disabled individuals; and otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities. Edward J. Markey, Chairman Subcommittee on Telecommunications and Finance U.S. House of Representatives, recently wrote: The past several years have witnessed rapid, sweeping, and comprehensive change in the ways we utilize telecommunications. Never before in our history have Americans had access to such a wide array of telecommunications products and services. Americans are no longer limited by the reach of their traditional copper wire telephones. Today, new and innovative technologies such as cellular phones, fiber optics, facsimile transmission, and satellite systems have enabled us to communicate almost instantaneously with any person, at any time, and at any place in our wide world. It is unconscionable, however, that for many persons with disabilities, these new technologies offer little of promise. Often at a disadvantage in the use of basic telephone service, people with disabilities have particular needs to which new communications services are insensitive. The telecommunications system of the future will represent a mix of voice, graphic, and videotext services that may not be fully utilized by people who are deaf or hearing-impaired, blind or visually-impaired, or speech-impaired unless steps are taken now to guarantee their full and equal access. Passage of the Americans with Disabilities Act in 1990 was an important stride forward in this effort. However, with regard to telecommunications access by persons with disabilities, many fundamental issues remain to be addressed.[********] Nowhere is the application of assistive technology more relevant and essential than in the area of telecommunications. Regardless of the medium, telecommunications products and services serve as the conduit through which information is acquired, stored, manipulated, managed, moved, controlled, displayed, switched, exchanged, transmitted or received. The key component is information. Without access to information in its myriad forms, individuals with disabilities will not, cannot become fully woven into the fabric of American social and economic life. Telecommunications is more than the traditional residential telephone with which voice conversations occur. IT goes beyond the copper wires, fiber optics or cellular transmission systems and networks that connect one telephone to another. Modern telecommunications reaches into computers of every sort, travels through modems linking enormous databases of information and executes transactions of every type. Telecommunications continues to evolve with applications such as:  interactive cable systems for making entertainment choices or participating in "electronic" town hall meetings;  kiosks with interactive video terminals, placed in strategic public locations to convey necessary information about and access to local governmental services;  remote classrooms using "real-time video" for the teaching of science and math by competent, stimulating teachers;  TV receivers with built-in decoder circuitry to provide closed captioning of aurally delivered program material; or  VCRs with built-in secondary audio program circuitry, to provide "descriptive video" - spoken interpretation of visually presented TV program material. The term "telecommunications" has become synonymous with any method used to deliver and communicate information electronically. No longer can the term be confined to the telephone and its associated networks or to radio, TV and cable broadcasts and transmissions. Substantial barriers to access continue for even the most basic telecommunications services:  convenient telephone voice communication between deaf, hard of hearing, speech impaired individuals and the hearing/speaking public, despite the increasing development of intra- and interstate telecommunications relay services;  access by individuals with visual limitations to elementary visual information displayed on terminals of every sort - telephone status LEDs, TV, ATMs, flight information displays, shopping mall directories or library on-line catalogs;  use of keypads, keyboards and controls/switches by individuals with limitations in reach or articulation prevent full access to voice and data communications;  complicated choice menus, whether visual or aural, limit the usefulness of audiotext, videotext or computer system software for individuals with limitations in cognition. The National Council on Disability, conducted three forums in conjunction with this study of the financing of assistive technology. It heard from witnesses concerning telecommunications as follows: NCD Public Forum Minneapolis, Minnesota, October, 1991 Emerging telecommunications are designed in a way that requires an ever greater number of functional abilities. Since every human ability defines a human disability more and more, people with disabilities can expect to be excluded from telecommunications access, unless, through public policies, and the industry, in its product designs, take action to build electronic curb cuts into all products and services Recommendations that were made include: 1. Equivalent access for all people with the full range of current and emerging telecommunications technology is not only possible, but imperative if individuals with disabilities are to take command of their lives and live them more fully. 2. People with Text Telephones have little assurance that they can communicate with government offices, even those listed as having text telephones. Government workers are often untrained in TT use and hang up the phone because they do not recognize the sound of a TT call. 911 operators do not recognize a TT call. There are non-technical barriers to access to telecommunications. Equipment training for all individuals and attitudinal barriers need to be addressed. 3. The focus of our attention should not be on the individual with disabilities or on improving the fit between persons and telecommunications services. The nature of the problem is not the disability itself but the lack of access to appropriate tools, information and training. The desired outcome for an individual is best described in terms of freedom of choice. The Telecommunications for the Disabled Act of 1982, (P.L. 97-410) for the first time established as national policy a right to persons with impaired hearing to have reasonable access to telephone services. The Act established three specific requirements for the purpose of attaining hearing aid compatibility. The Act required the Federal Communications Commission (FCC) to: 1.establish regulations for uniform technical standards for hearing aid compatibility 2.require telephones in certain locations designated as essential phones, to be equipped for use with hearing aids 3.establish specific requirements for informational labeling on telephone equipment by the FCC. Toward this end, in 1983 the Commission issued a Rule requiring that every telephone offered to the public on or after June 1, 1984, contain on the surface of its package a statement whether or not it is hearing aid compatible. Congress defined "essential phones" to include coin-operated telephones, telephones provided for emergency use, and telephones frequently needed by individuals with impaired hearing. In 1984, the FCC clarified each of these categories. First the Commission defined coin-operated telephones to include those telephones found in public or semi-public locations, such as drugstores, gas stations, or private clubs. Second, the FCC divided "telephones provide for emergency use into three categories: (1) telephones in isolated locations such as elevators, tunnels, and highways, (2) telephones with direct lines to emergency authorities such as the police and fire departments, and (3) telephones needed to signal life-threatening or emergency situations in confined settings such as hospitals or prisons. The final category defined in the rules as "essential" are those which are frequently needed by individuals who are hearing impaired. Essential phones are: (1) telephones for use with credit cards only (unless a hearing aid compatible coin operated telephone is located nearby), (2) telephones in the workplace which are necessary for the performance of the employee's duties, (3) telephones found in buildings in which visits by the public are reasonably expected, e.g., lobbies of hotels and apartment buildings, stores, and public transportation terminals, (4) telephones available for a minimum of ten percent of the rooms in any given hotel, and (5) telephones in locations, such as hospitals and prisons, where and individual may be confined, but which are not needed to signal the presence of a life-threatening situation. The FCC required that all essential telephones installed on or after January 1, 1985 be hearing aid compatible. Moreover, the new rules mandated that essential phones that are either coin operated or used for emergency use be retrofitted or replaced for the purpose of making them hearing aid compatible by January 1, 1985. As many as thirty-six states have de-tariffed specialized equipment; yet programs to provide such equipment at reduced rates have sprung up in only 25 states.[*********] The majority of individuals with disabilities are not covered by many of these programs. Additionally, most of these programs provide no specific funding for the research and development of new technologies in specialized customer equipment. RECOMMENDATIONS FOR REFORM General A national policy should be established that addresses in a comprehensive and complementary manner the two essential attributes of access to telecommunications, i.e., technical and economic. Without laying the foundation for technical access, economic affordability will be meaningless. Solving technical issues without laying the foundation for affordable access will be, likewise, meaningless. In the following set of recommendations, it is hoped that a logical sequence of executive and legislative actions can be encouraged that will lead to the concept for a overarching national policy of access to telecommunications by and for individuals with disabilities. Federal Level - Executive 1. Encourage the White House to form a Task Force on Telecommunications and Disability with a specific mandate to examine telecommunications-related policies and practices that impact upon individuals with disabilities. The Task Force should include appropriately high-level personnel from every Federal agency with a substantial interest in national telecommunications policy and practice, procurement, production, distribution, and use. Individuals with disabilities who have expertise in a variety of disability and telecommunications issues should be consulted to assist the Task Force in its deliberations. The goal of the Task Force will be to identify current policies and practices, future trends and proposed legislation/regulations so as to ensure that individuals with disabilities will be able to obtain equally effective use of telecommunications along with the general public, and at an affordable cost. Examples of such Federal agencies include, but may not be limited to the: a.Architectural and Transportation Barriers Compliance Board b.Corporation for Public Broadcasting c.Federal Communications Commission d.General Services Administration e.Interagency Committee on Computer Support of Handicapped Employees f.National Captioning Institute g.National Council on Disability h.National Institute on Disability and Rehabilitation Research i.National Telecommunications and Information Administration j.Office of Management and Budget 2. All Federal agencies and offices should be encouraged to consider the needs of any individual with a limitation in the use of telecommunications and not restrict their attention to a narrowly focused group. For example: a.access to the Federal Telephone System is imperative not only for voice communications, affecting individuals with limitations in hearing and speech, but equally for data and video information, processing, and exchange. Affected individuals include those with limitations in vision, motion and cognition as well as hearing and speech. Strict adherence to the Telecommunications Accessibility Enhancement Act of 1988 will limit access to individuals with limitations in vision, motion or cognition. Under existing laws, e.g., Section 508 of the Rehabilitation Act or Titles I or II of the Americans With Disabilities Act, agency policies and practices could require access to the FTS, despite the currently limited language of the 1988 statute. b.access to other electronic office equipment, including computers, but also including devices such as facsimile machines, photocopiers, optical scanners or postal metering equipment, is essential for complete integration into effective telecommunications use by any individual with a disability. The cost of providing accessible equipment is far less, over the work life of an individual with a disability, than the cost of "job restructuring," or on-going "reasonable accommodation" through third-party assistance. Again, under existing law such as the ADA or Rehab Act's 504 provisions, policies and practices could be explicit with regard to inclusiveness. 3. The National Telecommunications and Information Administration should be encouraged to immediately assign an individual to interface with the disability community to identify aspects of its work that does or may have impact upon individuals with disabilities. For example, the NTIA should be encouraged to examine its role in spectrum allocation so as to ensure that services of particular interest to individuals with disabilities are protected, such as the need for a standard set of frequencies for use in remote signage of analog or digital information. Such information will enable individuals with disabilities to increase their wayfinding capacity both in places of public accommodation and within public spaces, such as street intersections, university campuses, etc. 4. The Federal Communications Commission also should be encouraged to assign an individual(s) to interface with individuals with disabilities on issues of concern to them, as well as disability-related organizations active in telecommunications. The FCC needs to be sensitive to the fact that many of its technical rulemaking actions impact individuals with disabilities and that these individuals are in the best position to analyze, with the aid of Commission staff, what impact a particular rulemaking will have. For example: a.The Commission did not investigate or address disability issues in its "video dial tone" NPRM. b.There is little doubt that aspects of the development of high definition TV will affect individuals with disabilities in one or more ways. The Commission should immediately invite knowledgeable individuals with disabilities to examine the technology and its impact upon technical access and affordability. c.Similarly, the FCC must weigh the impact of the cost of new technologies upon individuals with disabilities since both product and service costs may be out of reach for many such individuals who need such products or services. 5. The Telecommunications for the Disabled Act of 1982, (P.L. 97-410) concentrated upon the need for hearing aid compatibility of essential telephones. However, another provision of the Act, Section 610(g) provides for access by individuals with limitations in "vision, mobility,and speech." This was not addressed in the 1983/84 rulemaking procedure in a substantive manner. The Commission should consult with the disability community and others in anticipation of preparing a Notice of Inquiry regarding how best to implement this and other unaddressed provisions. 6. There are many issues remaining unaddressed with respect to the Americans with Disabilities Act and communications, especially in Titles II and III. The Department of Justice, Department of Transportation and the Architectural and Transportation Barriers Compliance Board should actively continue to pursue areas left "reserved" or in need of clarification. For example: a.The interpretation of "commercial facility" is ambiguous where a good or service is offered through telecommunications. An increasing proportion of commerce in this country is conducted by phone or through PCs and modems connected to databases by agencies, organizations and firms that quite literally maintain no facility or premises where they meet with their customers. For them, an electronic catalog is their showroom, the telephone their sales office. By its emphasis on places of public accommodation, Congress did not mean to exclude these fastest growing sectors of our economy, whose activities manifestly affect commerce, from coverage under the ADA. Congress did not intend to suggest that a variety of practices, procedures and methods that bear upon access most heavily could be exempted from coverage simply because of where they happened to or happened not to take place. If we note that individuals with disabilities often place particular reliance upon the telephone and PCs, it would be particularly incomprehensible to believe that Congress intended for public accommodations and commercial facilities which operate through these modalities to be excluded from coverage. Yet, if the newly adopted regulations are not redrawn more broadly and clearly, such commercial facilities may be inadvertently excluded from coverage under Titles II and III. b.Congress explicitly included automatic teller machines (ATM) as an example of equipment that must be made accessible to individuals with disabilities. The transactional services conducted between the ATM and a bank, using telecommunications technology, are not significantly different than those represented by an information kiosk based by a municipality for use by its citizens. The technology is parallel; both use telecommunications, both involve access to data and transactions important to any citizen. Nevertheless, the ATBCB and DOJ did not address this and similar access areas when drawing up its accessibility guidelines or regulations. 7. The General Services Administration is charged with the responsibility of implementing and enforcing the provisions of Section 508 of the Rehabilitation Act, which requires that all Federal agencies purchasing or leasing electronic office equipment ensure that such equipment can be made accessible to employees with disabilities. The GSA, to date, has placed emphasis upon computers, especially PCs. It has not uniformly insisted upon incorporating accessibility into purchases of other equipment, especially telephone systems where access by individuals with limitations in vision, cognition or motion are affected. Existing law does not exclude any specific type of electronic office equipment from coverage under Section 508. It is recommended that the GSA be more aggressive in its training and education of Federal agency personnel as to the imperative need for access to all types of equipment, especially any involved in information processing and handling. 8. Under provisions of the Telecommunications Accessibility Enhancement Act of 1988, the GSA is also required, in conjunction with the FCC, to promote the use, reduce the costs and improve the capabilities of equipment for providing telecommunications accessibility for those with hearing and speech impairments. Little has been done to implement, through regulation, these provisions. Much of the text telephone equipment still in use in Federal agencies is outdated. It is based upon the exclusive use of the Baudot format despite use of ASCII as a preferred format for data communications generally. The FCC and GSA, in conjunction with the deaf and speech impaired communities should address the need to encourage the use of ASCII. However, to accommodate the large embedded base of Baudot TDDs, a standard protocol must be developed to ensure automatic access to emergency telephone services such as "911," whether the incoming call is Baudot or ASCII based. Standards for auto-answering of Baudot and ASCII formats must be developed, including, for ASCII, recognition of not only baud rate but also data bits, stop bits, parity and handshaking. 9. The Corporation for Public Broadcasting should take an increasingly active stance in advocating for and the use of closed-captioning, descriptive video and accessible remote educational technologies for television productions it helps to support. In particular, CPB together with the National Captioning Institute, the Department of Education and the National Institute on Disability and Rehabilitation Research, should ask Congress for increased appropriations for this vital telecommunications function. Federal Level - Legislative 1. Establish in Federal law a comprehensive, coordinated national policy on the right to access to knowledge, using information processing resources through telecommunications technology, by individuals with functional limitations in communication by conventional methods. Examples of laws to be included, directly or by reference, are: a.Air Carrier Access Act b.Americans with Disabilities Act c.Communications Act d.Developmental Disabilities Assistance and Bill of Rights Act e.Individuals with Disabilities Education Act f.Older Americans Act g.Rehabilitation Act h.Technology-Related Assistance for Individuals with Disabilities Act i.Telecommunications Accessibility Enhancement Act 2. Incorporate into the Communications Act of 1934, Section 151, ("Purposes"), the following language with respect to "Universal Service": "...so as to make available, so far as possible, to all the people of the United States, [including individuals with disabilities who require 'communications accessibility,'] a rapid, efficient, Nation-wide and world-wide wire and radio communications service with adequate facilities at reasonable charges..." 3. Incorporate into the laws cited in "1." above, if not already incorporated, the following definitions and/or rights: a."Disability" as defined in the Americans With Disabilities Act, Section 3(2); b."Assistive Technology Devices" as defined in the Technology-Related Assistance Act, Section 3(1); c."Assistive Technology Services" as defined in the Technology-Related Assistance Act, Section 3(2). d.Communications Accessibility - means making all expressive and receptive communications accessible to individuals with disabilities, and recognizes that virtually every individual is: (1)capable of communicating, (2) knows best how to convey his or her thoughts to others and (3) extends the same basic common courtesies of interacting with people with disabilities that are extended to others in receiving the goods, services, facilities, privileges, advantages, or accommodations offered by an entity providing such services. (proposed definition) e.Communications Accommodation - means taking the time to communicate to an individual with limitations in speech, cognition, hearing or vision using appropriate assistive technology or by communicating directly to such an individual, to the extent practical, using his/her preferred method of communication rather than using a third party, unless directed otherwise by the individual involved. (proposed definition) f.Class of Telephone - means telephones or telephone systems designed for residential, business, public phone or emergency use; and includes, but is not limited to, corded, cordless, wireless, answering systems, data terminals and video devices/displays. g.Specialized Customer Premises Equipment (SCPE) - means any equipment, including associated hardware, firmware or software, needed by individuals with disabilities to access the telephone network without assistance, or needed by individuals who are non-disabled for the purpose of communication with persons with limitations in hearing, seeing, moving speaking or cognition. (proposed redefinition) h.Value Added Service (VAS) - means any offering over the telephone network which is more than a basic transmission service. (proposed redefinition) i.Enhanced Service - means any service, offered over common carrier transmission facilities, cable systems or other interactive technologies, which employs information processing resources that act on the format, content, code, protocol or similar aspects of a subscriber's transmitted information; provides the subscriber additional, different or restructured information; or involves subscriber interaction with stored information. (proposed redefinition) 4. The Telecommunications Accessibility Enhancement Act of 1988 (Pub. L. 100-542), directs the Federal telecommunications system be fully accessible to individuals who are hearing and speech impaired, including Federal employees. It is recommended that language be included that expands access to the FTS to all individuals using the system by whatever means, voice, data, video or combination of technologies. 5. Require each class of telephone intended for sale in the United States, whether produced within the United States or imported from another country, to have at least one model, comparable in quality, style, function and price that provides accessible design components/features to an individual with limitations in hearing, seeing, moving, speaking or cognition.[*********] 6. Make explicit inclusion of accessible telecommunications products/services into existing funding streams: a.Medicare b.Medicaid c.SSI and SSDI work incentive programs 7. Expand Title IV of the ADA to establish a national program for the distribution of specialized customer premises equipment for use with telephones and associated networks. state Level 1. Encourage public utility commissions, in conjunction with the National Association of Regulatory Utility Commissioners (NARUC) and the disability community, to develop consistent definitions of individuals with disabilities with respect to use of telecommunications, eligibility for services and specialized customer premises equipment under mandated or permissive state legislation, and to develop a model program based upon the best features of existing state programs for the distribution, training and maintenance of SCPE. 2. Eliminate the present inconsistencies among states in the provision, cost, availability and repair of specialized customer premises equipment; 3. Encourage enactment of legislation that protects the access interests of individuals with disabilities regarding the provision of state and local programs and services through telecommunications technologies such as information kiosks, electronic town halls/meetings, voting or other such interactive services. 4. Encourage state utility commissions to require local common carriers to provide Specialized Customer Premises Equipment (SCPE) and Value-Added Services (VAS) or "enhanced services" at affordable rates with a variety of finance options such as: a.tax credits b.tax deductions c.loan guaranty programs d.general tariff provisions 5. Develop comprehensive, coordinated public utility policies within states on communications accessibility. 6. Require that state Vocational Rehabilitation agencies use a portion of Independent Living program funds to finance assistive technology, specifically telecommunications devices under Part A. Federal regulations have included telecommunications, sensory and other technological aids and devices to the list of approved devices under this part. Section Ten: Federal Income Tax Law and Assistive Technology Finance NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Federal Income Tax Law and Assistive Technology Finance May 1, 1992 by Steven Mendelsohn Federal Income Tax Law and Assistive Technology Finance Introduction No study of financing options for assistive technology devices and services would be complete without an examination of the subsidies offered by the tax system to individual purchasers of technology and their families. The notion that tax benefits, such as deductibility, represent a governmental subsidy may seem novel at first. Yet for those who can reduce their out-of-pocket costs through effective use of the tax law, the end result is little different from what would be achieved with a government check for the same amount as the savings. As a source of subsidization for the self-funding of technology, the tax system offers opportunities of great magnitude to individuals with disabilities. Unfortunately, this potential for reducing technology's costs to the consumer remain surprisingly little-known to assistive technology providers, advocates and users. This chapter offers an overview of the chief tax law provisions bearing upon assistive technology. It discusses the legal and factual issues surrounding successful utilization of these provisions. Finally, it recommends reforms that, without loss of revenue to the US Treasury, could materially enhance the ability of many people with all disabilities to secure the technology they need for education, employment and the highest possible quality of life. An Obscure Funding Source The assistive technology community consists of people with many specialties, drawn from innumerable backgrounds and disciplines. From engineers to social workers, administrators to advocates, and consumers of all ages and backgrounds, it is a community of immense diversity and scope. Anecdotal evidence from technology users around the country indicates that a significant number of people have incorporated sophisticated tax planning into their personal equipment funding strategies. But their experience and often hard-won knowledge in this area have too often remained private. Dissemination of such knowledge to the community of consumers and providers has never been systematically undertaken or raised to a priority level by any major information dissemination organizations or publications in the disability field. The Council for Exceptional Children has offered tax information through its publications, and occasional articles have been published or presentations made in other forums, but few advocates or counselors are well-versed in either the issues or the opportunities. Nor is this lack of information difficult to understand. People with interest or involvement in assistive technology have been required to absorb an enormous amount of information, in areas including the technology itself, the service system and the rapidly evolving pattern of laws (such as the Technology-related Assistance for Individuals with Disabilities Act of 1988 and the Americans with Disabilities Act of 1990) that bear upon access to assistive devices. Moreover, even many of those advocates who have made technology funding a central concern have understandably tended to concentrate on publicizing and improving major governmental and nonprofit funding sources that promised to benefit the largest number of would-be technology consumers. A further factor influencing the allocation of resources is the fact that most people who need or want it can find advice and assistance in preparing their tax returns. Regrettably, most accountants and other tax professionals and preparers lack the training or experience necessary to effectively advise individuals and families with respect to technology acquisition. Knowledge of the tax law is not alone sufficient for effective guidance in this area. If a tax professional does not know of the existence of a disability in the family, is unaware of which purchases constitute assistive technology and why, is not privy to the hopes and aspirations of the client, or is uncomfortable with frank discussion of the day-to-day realities of living with a disability, then even the most comprehensive body of tax law knowledge may never be brought to bear on behalf of needed technology. Among people with disabilities, only the very wealthy few or the fortunate are able to find a tax adviser with the time, inclination and capacity to translate their aspirations for technology into the terminology, the assumptions and the technicalities and forms that comprise our tax system. For people with disabilities who want basic information on features of the tax law that may affect them, a useful starting point would be IRS Publication No. 907 "Tax Information for People with Handicaps or Disabilities." IRS Publication No. 17 "Your Federal Income Tax" is made available in braille through the co-operating network libraries of the Library of Congress's National Library Service for the Blind and Physically Handicapped. The Internal Revenue Service has also undertaken a number of outreach efforts aimed at reaching people with disabilities. To the degree that the tax law has implications for people with disabilities that go well beyond technology, these resources represent a useful jumping off point for those who want to acquaint themselves with the basics. What The Tax Law Can Do for Technology The Internal Revenue Code offers the potential for subsidizing, through tax deductibility, of virtually every assistive device we purchase. We pay tax, not on our entire or "gross income," but on the proportion of that which is our "taxable income." Deductions serve to reduce this taxable income figure. Except for people whose incomes are below the threshold for owing any tax, people in this country pay on the basis of a three-tier rate. Depending on income, an individual's rate will be 15%, 28% or 31%. If one is in the 31% top bracket, an income tax deduction for the $100 cost of a hypothetical assistive technology device results in a $31 tax saving, meaning that the net cost of the equipment is reduced from $100 to $69. For someone in the 28% bracket, it is $28 and for a taxpayer taxed at the 15% marginal rate it is $15. Among itemized deductions that individuals may claim on their annual tax returns, the medical care deduction offers major opportunities for the deduction of assistive technology, particularly technology that is used in a personal living or a special education context. For assistive technology expenses directed toward employment, the impairment-related work expenses (IRWE) deduction offers the greatest opportunities. Finally, provisions such as the disabled access credit provide important tax incentives for small businesses which are prepared, consistent with the mandate of the ADA, to provide equipment that is needed to facilitate either employment of or access by individuals with disabilities. Since these three major provisions represent the most significant provisions for assistive technology, we shall focus on them in the succeeding sections. The Medical Care Expenses Deduction Medical care expenses are tax deductible if two conditions are met. (1) A taxpayer must have sufficient itemized deductions, under this and all other deduction categories, to warrant itemization rather than use of the standard deduction. (2) The portion of medical expenses that are deductible are those that exceed 7.5 percent of the taxpayer's adjusted gross income (AGI) for the year. Although the tax deductibility of medical care expenses appears to be widely known, the scope of this deduction seems to be far less well-appreciated. The tax code's definition of medical care expenses is far broader than many people's common notion of the term. We commonly think of medical care in terms of what doctors or dentists prescribe, treat or do; in terms of what health insurers will reimburse us for; or in terms of what television health reporters or public health officials discuss. Each of these is a valid measure in its own sphere, but the tax law uses its own definition and standards. These predicate definition and deductibility upon the nature and purpose of an expenditure. Section 213 (d) of the Internal Revenue Code defines medical care expenses as: "amounts paid for the diagnosis, cure, mitigation, treatment or prevention of disease or for the purpose of affecting any structure or function of the body..." Most of us would assume that this includes medical equipment such as oxygen tents, hospital beds or dialysis machines, but it includes a great deal more equipment than that. From the standpoint of assistive technology devices, the key words here are "mitigation" and "affecting any structure or function of the body." We do not use assistive devices to "diagnose," "treat" or "cure" disease; we do use them to "mitigate" functional impairments which limit various "functions" or "structures" of the body. Consistent with the wording of the statute, a number of rulings, by the Internal Revenue Service itself and from the US Tax Court, uphold (though without ever using the term) the inclusion of assistive technology within this definition. For example, rulings and cases establish the deductibility of: TDD'S for use by person with hearing impairments in using the telephone; hand controls and wheelchair lifts to facilitate the operation and use of a motor vehicle by people with physical and mobility disabilities; closed-caption decoders to make the audio portion of television broadcasts accessible; braille writing equipment; and comparable devices applicable to the range of physical, mobility and sensory impairments. It is obvious that the law cannot hope to keep up with the technology revolution. If we waited for revenue rulings or court cases dealing with each specific item, we would find ourselves falling further and further behind. Accordingly, as in any area of law, we must use the principles articulated in the precedent-setting decisions to extrapolate to other devices. For example, when the Internal Revenue Service ruled that closed-caption TV decoders are deductible, the rationale for its decision indicates that the same result would be reached on the deductibility of equipment used to receive "audio description." These services, by providing a narration of visual action for television viewers who cannot see the screen, play the same role for blind persons as the closed-caption presentation does for people who are deaf. It compensates for the inability to see the screen, just as the captioning does for the functional impairment of not being able to hear the audio. Regardless of the impairment in question, the key to the deductibility of assistive technology is the ability to understand, and if called upon to document, its role in mitigating a functional impairment of one or another function, system or organ of the body. Any disability reflects itself in some or other functional impairment. To be sure, there are nuances and pitfalls. It is not a simple matter of saying that one purchased this or that item, say a good chair, because it reduced back pain. With a device that is designed or modified specifically for use by a person with a disability, the claim of impairment mitigation will be relatively easy to sustain. After all, who would spend $3,000 for a braille-output device for a computer except someone who actually needed it, given that standard monitors run at only a fraction of this cost? It will help to have a physician's recommendation, and the purchaser may be required to prove the existence of the disability, as well as to explain exactly what the device does, but once the requisite facts and documentation are assembled, no valid basis for denying deductibility should exist. When we turn to off-the-shelf, standard devices that take on their assistive character by virtue of how and by whom they are used, our problem of proof becomes a bit more complex. With the nature of the device no longer sufficient to make its use obvious, we must be prepared to prove not only the truthfulness of our claim of functional impairment, but we also have to prove how the device in question mitigates the functional impairment or affects the structure or function in question. And we have to prove one thing more. Since the device could equally well be used by other people or by us for other purposes, we need to be able to show that mitigation of the impairment was our motive in purchasing it. Ordinary "personal use" items have been held medically deductible on numerous occasions, however. These include a reclining chair for a cardiac patient, a clarinet and lessons for an orthodontic patient, air-conditioners for people with respiratory disabilities and many others have been held deductible where the Internal Revenue Service believed the claims underlying their acquisition and use. The character of the equipment is never the issue. Its purpose and role is. Telephones have been held medically deductible where the evidence supported the taxpayer's contention that they were obtained or used solely to call a physician. In other cases where this claim was not supported by the evidence, they have been denied. In cases involving standard items such as the chair, the clarinet or the air-conditioner, medical evidence, in the form of a physician recommendation in connection with a particular diagnosis or treatment regimen, has played a key probative role. People with disabilities frequently meet their assistive technology needs with what we shall call "mixed systems." These are configurations that consist of a standard and a specially-designed or modified component, for example, computer systems which include a standard computer to drive a speech synthesizer, an augmentative communications device, an environmental control unit, or some other specialized peripheral or software. Although there should be no problem deducting the specialized peripheral or software, the ordinary computer presents a problem. From the definitional standpoint, the home computer is not assistive technology. In tax law parlance it is a "personal use" item. Proving that a personal use item is in fact a medical expense is often problematical. For one thing, it is not the computer that mitigates the functional disability, but the assistive component (the speech synthesizer for reading the screen, the augmentative communications device for effective communicative output) that allows the computer to be used. A good illustration of this reasoning is provided by the rules on automobiles. In the area of vehicle modifications, the add-on components attributable to mitigating the functional consequences of the disability are routinely deductible, but the cost of the basic car is not. Obviously, the individual with the disability could not use either component in the absence of the other, since the van would be inaccessible without the lift, while the lift or hand controls would have no practical use without the vehicle. The individual may be able to prove that the car would not have been bought but for the availability of these add-ons, but that does not make the car medically deductible. Nevertheless, some taxpayers have succeeded in deducting their entire mixed type computer systems. The taxpayer who would undertake to try this should be prepared to respond in the event of a tax audit. Prospects of success would be strongest in cases where the complete system represents an integrated and the only means for achieving a basic life function, such as communicating with others. The taxpayer who would deduct standard items, whether independently or as part of mixed systems, faces another problem of proof. Even if it can be shown that the standard device does play the requisite functional role, its nature leaves room for the question whether it has actually been procured for the stated purpose. You must be able to prove not only its potential but that it was actually and solely used for the specified purpose. Put another way, how can I demonstrate that I or my family wouldn't have bought a home computer anyway? After all, many families do! Like every other question of this kind, the answer depends upon the facts of the case. There are any number of ways the motive of the purchase might be proved. Perhaps the standard computer component of your assistive technology configuration was recommended by a rehabilitation engineer or by a physician? Perhaps the model of computer you chose was dictated by the interface requirements of your peripherals? Maybe you did not buy parts of the computer that a person without your disability would use (such as a blind person who does not purchase a standard monitor)? Hopefully, you can simply assert, because it is true, that no one else makes any material use of it but you? In such a case, the recommendation of a physician could conceivably have some evidentiary value, but physicians do not "prescribe" assistive technology. Nor would it necessarily be desirable to place assistive technology under the ambit of the medical profession, for this would significantly raise its costs and probably set back to the development of consumer-responsive models in the field. More to the point in these ambiguous situations is what people with disabilities can do directly. Taxpayers themselves play a major role in determining the scope of the law. By what they claim, and most important by what adverse decisions they appeal to the Tax Court they create the arguments and the opportunities for tax law provisions to be applied to new situations. Tax law provisions are not static. They are constantly being interpreted and applied, being broadened or narrowed in their scope. The issues are as much or more attitudinal and informational as they are legal. Hard as it may be to imagine in the aftermath of the ADA, there are still many people who cannot readily understand how obscure devices, not provided by physicians or other credentialed health care providers, could possibly be characterized as medical devices. For the potential of the tax law to be fully realized, people with disabilities need to do a great deal of what can best be called educational work. Much therefore depends upon the organization and cogency of one's analysis and presentation. So long as there are people, within the tax advisement and enforcement community no less than in society as a whole, who equate mitigation with medical improvement rather than with restoration of function by alternative means, our task will be harder than the law requires it to be. If a device is deductible under the health care rationale, the costs of its upkeep and maintenance are deductible as well. If the need for the technology ceases, so does the deductibility of its upkeep. An individual whose disability ceases is not required to repay tax benefits derived from the purchase of assistive devices while disabled, however. Likewise, if an assistive device is sold, the seller may be liable for tax on any profit (gain") that may accrue, but the "basis" or purchase price against which profit or loss is measured ordinarily need not be reduced by the amount of any tax subsidy involved in the original purchase. Technology Services For deductibility of assistive technology services as medical care, success is often possible if some recurrent difficulties are foreseen. Among assistive technology services, training would typically represent the most important example. Generally speaking, the medical deductibility of costs incurred for services is determined by the nature of those services and by the identity of the service provider. Thus, services provided by doctors, dentists, nurses, physical and occupational therapists, psychologists and other recognized health care professionals are routinely deductible, provided they are for the treatment of some problem, illness or the like. Fees paid for a half-hour's discussion of the state of medical research in this country would not be deductible, simply because paid to a physician. But the services of others, even including in some cases nonprofessionals, can be deductible, if their nature and purpose meets the medical care standard. With assistive technology training, we therefore face two hurdles. First, there is as yet no standardization of the professional credentials of those who provide it. This is one of the reasons why people who have obtained their training from noncredentialed disabled peers at independent living centers have had difficulty in deducting the fees or voluntary contributions they paid for this assistance. Closely related, the second hurdle is that of demonstrating the specialized (that is, the functional improvement objective) nature of the training. Particularly where the credentials of the trainer or the training facility are limited, emphasis must be placed on the nature of the training provided; but in all cases, whoever offers the training, its nature is what should qualify it for deductibility. Special Education To the degree that assistive technology devices and services are deductible in an educational context, this opportunity likewise derives from the medical expense provision of the law. With few exceptions not pertinent here, educational expenses are not tax deductible. But when goods or services used or provided within an educational setting can be characterized as "therapeutic" rather than "educational" in nature, deduction is permitted. For example, tuition for attendance at "special schools" has been held deductible where the purpose of attendance was primarily therapeutic. In today's special education settings, many families feel called upon to supplement the resources available under a child's Individualized Education Plan (IEP) with additional goods and services for which they pay. Where these involve assistive technology, they should usually be medically deductible if their purpose can be characterized as treating or overcoming the disability. Braille writing equipment or lessons in braille, braille books (to the extent their price exceeds that of equivalent print editions), assistive listening systems for use in the classroom, modified keyboards or other peripherals and software for accessing and using school computers or other equipment: these would be illustrative of the range of devices that would qualify. The line between these and educational expenses can be a difficult one to find, particularly when it comes to services. Training in the assistive devices would qualify, but remedial education services, even if arguably necessitated by the school's failure to provide accommodations that would facilitate learning, would raise a red flag. There is no requirement in the law that the family have exhausted all avenues for school system payment in order to claim the deduction. Nor does the sharing of financial responsibility between the school and the family in any way deprive the family of its deduction for the amount of its deductible expenditures. Earlier, we mentioned that the medical care deduction was important because it applied to assistive technology purchased for use in a number of spheres One major exception is employment. Fortunately, the law does provide important subsidy opportunities for the assistive technology needs to which we must respond in order to work. Impairment-related Work Expenses Added to the Internal Revenue Code in 1986, Section 67 (d) defines these as: "expenses of a handicapped individual...for attendant care services at the individual's place of employment and other expenses in connection with such place of employment which are necessary for such individual to be able to work..." For the definition of "handicapped individual" we are in turn referred to Section 190 (which deals with the architectural and transportation barrier removal deduction). Section 190 (b)(3) contents itself with telling us that the term includes but is not limited to people who are deaf and people who are blind. Because the impairment-related work expenses (IRWE) provision is a relatively new statute, not much interpretive guidance has yet been amassed. This limitation in our knowledge is compounded by some problems in the wording of the statute, such as the use of the words "attendant care services" to include readers and interpreters. Likewise, the references to "at" or "in connection with" the place of employment do not mean, as some have feared, that the goods or services in question must be used or provided only at the work site. Impairment-related goods or services utilized at the worker's home for work-related purposes would still qualify for the deduction. Finally, the words "necessary...!be able to work" do not mean that the goods or services be a condition for getting or keeping the job. It is enough that they contribute to satisfactorily performing one's work, and there is no requirement either that the employer have instructed you to get them or that the employer have first refused to pay. The IRWE statute makes no specific reference to expenses for goods, but the words "other expenses" should be read to include whatever may be appropriate, including assistive technology devices. To be deductible, goods or services must meet two conditions. (1) The item must be necessary for and actually used in one's work. (2) The goods or services must be impairment-related, that is, must be of a nature that would not be needed or used but for the functional impairment. IRWE's are an itemized deduction. This means, as with medical care, that in order to claim the deduction the taxpayer must be in a position to itemize. Of course, if an individual is self-employed, IRWE's would be included among business expenses that go into determining profit or loss. In that case, the IRWE's are reflected on Schedule C, so the taxpayer gets their benefit irrespective of the decision whether to itemize, and irrespective of the capacity to do so. Provided an employed person has enough itemized deductions, IRWE'S are not subject to any floor the way medical expenses are. If there is any question concerning a given device's impairment-relatedness, an important fall-back position should be noted. So long as the expense is work-related, it should also be deductible, like other unreimbursed employee business expenses, under the Miscellaneous Itemized Deductions (MID) provision of Section 67 (b). However, with MID's a 2% of AGI threshold does apply, meaning that the itemized deductions will be available only to the extent your MID's exceed that figure. The Disabled Access Credit Enacted several months after passage of the ADA in 1990, this provision (full name, Expenditures to Provide Access to Disabled Individuals) was designed to help small businesses offset economic hardship that might result from compliance with the new civil rights provisions. It also serves to encourage businesses to make accommodations that will afford individuals with disabilities greater access and opportunity, whether as employees (Title I of the ADA) or as customers (Title III). Set forth as Section 44 of the Code, the credit is available for 50% of "eligible access expenditures" incurred by a small business. The maximum amount of the credit is $5,000, computed as 50% of eligible expenses that exceed the firm's first $250 of such expenses, and up to a maximum of $10250 in any tax year. As a tax credit, rather than a deduction, its amount is subtracted, not from one's income as a deduction would be, but directly from the tax the firm would otherwise owe. This makes it considerably more valuable than a comparable deduction would be. A small business is defined as one with gross receipts for the year of under one million dollars, or, alternatively, as one that had thirty or fewer "full-time" employees during the year. The definition of "eligible access expenditures" clearly includes assistive technology. Subsection (c) defines eligible access expenses generally as amounts paid "for the purpose of enabling the eligible small business to comply with applicable requirements under the Americans with Disabilities Act..." It then goes on to enumerate specifically covered expenditures, among which are included: expenses: "to acquire or modify equipment or devices for individuals with disabilities" or "to provide...modifications, materials or equipment." Only costs that are "reasonable" and necessary for achieving the access goal are covered, but applicability of the credit does not depend upon any administrative or judicial order to comply with the ADA, or upon any finding or allegation of its violation. The credit seeks to encourage voluntary measures. With a statute as new as this, many questions remain to be answered, but one potential restriction upon the ability of businesses to provide whatever technology may be appropriate is suggested by the requirement of Subsection (c)(5) that, to be eligible for the credit, expenditures must meet standards prescribed by the Secretary of the Treasury in cooperation with the Architectural and Transportation Barriers Compliance Board. It is unlikely that the Treasury Department (of which the Internal Revenue Service is a part) will or can develop standards covering the myriad devices and configurations that technology, the ingenuity of business and consumers, or the flexibility of the ADA will yield. Nor is it entirely clear what such standards would require in application to various types of equipment. Regulations have not yet been issued, but the concern is that with assistive devices for which standards are not established, taxpayers may find it difficult to assess whether their proposed expenditures will qualify for the credit. There is a precedent for this standards-setting approach in Section 190 of the Code, which, in providing an up to $15,000 annual tax deduction for the removal by businesses of architectural and transportation barriers to the elderly and the handicapped, likewise predicates deductibility for each barrier removal expenditure upon its compliance with regulations to be issued by the Treasury. The regulations issued under Section 190 set standards in terms of: the required width of walkways, slope of ramps, height of drinking fountains, nature of warning signals or safety information, and so on. But recognizing the possibility that businesses would identify and seek to remove architectural barriers of a kind for which no standards had been set, the Section 190 regulations also contain a residual or "other" clause, allowing the deduction for the removal of other barriers in many cases. Pending the promulgation of regulations to implement Section 44, taxpayers have no real option but to assume that the scope of the ADA defines the scope of the credit. If an item of equipment meets the definition of an "accommodation," of a "modification" or of "auxiliary goods and services" under ADA, it must be deemed to comply with the requirements of the disabled access credit provision as well. While Section 44 should be amended, as discussed below, there is every reason to believe that expenditures for equipment that are intended to comply with the requirements of ADA and that have that effect will be granted the credit. Tax Strategy To say that technology is deductible under one or another rubric is still not to say when and under which provision its acquisition can garner the largest tax subsidy. For example, with medical care expenses, the 7.5% of AGI deductibility threshold introduces some strategic decisions. There is little point in buying assistive technology in a year when your health care costs, including the assistive device, will not exceed the 7.5%, if you have the option to make the purchase in another year when they will. Of course, we may not always have that choice for a variety of economic and personal reasons, but to the extent that we do, the bottom line implications of all strategic options must always be carefully weighed. An important element of strategy always consists in using the right forms and procedures. Medical care expenses are deducted on Schedule A to Form 1040. Impairment-related work expenses are also itemized deductions (except in the cases of self-employed people, as noted above), so also require the use of Schedule A. But with employee business expenses, including IRWE's, Form 2106 may also need to be filed. The disabled access credit is claimed on the business's return, but with it the Form 8826 must also be completed. Because this credit is one of a group of credits comprising the General Business Credit, some firms that elect to use it may also be obliged to file Form 3800. Recommendations To the degree that important opportunities for encouragement of assistive technology utilization through the tax system already exist, the first imperative is to ensure that information about these benefits is disseminated as widely as possible. Methods must be developed for making this information available to consumers and service providers. The mechanisms developed for doing this must be on-going, so that the technology community may be apprised promptly and accurately of relevant changes in or interpretations of the law. Of equal importance, the accounting and tax preparation communities must be further sensitized to the tax planning issues surrounding disability in general, assistive technology in particular. The tax preparation community is itself a diverse one. Successful outreach to this community will require collaborative efforts to develop professional training materials and programs that will sensitize practitioners to the nature of disability, to the role of technology in the lives of growing numbers of people with disabilities, and to the professional and personal appropriateness of confronting these questions with their clients. While the existence of salutary provisions is being made better known, simultaneous efforts to improve and clarify the law should be undertaken by the advocacy community. This effort must be undertaken on three interconnected levels: (1) Review of Current Laws. Our current body of tax law, accumulated as it has been over many years, reflects many different views of people with disabilities. Taken as a whole, our tax law, in its terminology as well as in its content, fails to embody a clear or consistent public policy. Certainly, public policy in connection with disability remains a complex, often elusive, frequently even contradictory matter. But with the emergence over recent years of a body of law that recognizes and aspires to enhance the independence and full participation in society of citizens with disabilities, the urgency and timeliness of a complete review of our tax laws and regulations has become increasingly apparent. There are many provisions in the law that inhibit, without intention to do so and often without significant revenue-collection justification, the goals of other laws and the implementation of evolving awarenesses at many levels. Even without any substantive changes in the law, such measures as clarification of inaccessible provisions or merely review of terminology could go far both to making the tax law more available to people with disabilities and their advisers, and to removing negative stereotypes to which the law inadvertently and unnecessarily subscribes. Among the provisions we have examined, several examples of what we mean can be found. For example, inasmuch as assistive technology already comes within the ambit of the medical care deduction, significant benefits could result from clarifying that "mitigation" includes appropriate rehabilitation services, including technology that restores function. Similarly, in the IRWE provision, the term "attendant care services" represents a less than ideal choice of nomenclature for use as the one specific example of the kinds of expenses contemplated by the statute. Such terminology hardly conveys the reality of what assistants do, and hardly projects the positive potential of individuals with disabilities in the work place that is, after all, the statute's reason for existence. If "attendant care services" were literally the only thing that those who drafted the statute meant to be deductible, that would be one thing. But since that is not what the statute has been interpreted to mean, would not a more accurate choice of terminology be useful to everyone? The shocking truth is that where the word "disability" occurs in the Internal Revenue Code, it more often occurs in the same sentence or paragraph as the word "death" (as in "expected to result in death or in disability") than in any other context. Apart from what is or is not deductible, this situation must change. Congress should, through one of its subcommittees or a special committee, or through the appointment of a commission charged with the task, review the entire corpus of the law to identify and remedy this and other comparably unfortunate provisions that have accrued over the years. While doing this, the need for substantive change should not be overlooked. (2) Revision of Key Code Provisions. The Code contains many provisions that adversely affect people with disabilities and their families. While some of these may have revenue implications sufficient to prevent their modification, and while others may need to be retained for the sake of consistency in the Code or for other technical or structural reasons, many others will be found to have no such justification. Several major law changes that would significantly benefit people with disabilities will be mentioned here. The first relates to the detrimental effects of using itemized deductions as the chief vehicle for individuals' deducting of assistive technology expenses. The requirement that people be able to itemize in order to claim their assistive devices results in the forfeiture of tax benefits by those who cannot itemize. If it is our intention to give a tax subsidy to assistive technology, might it not be advisable to do so in a way that does not condition the availability of the benefit upon so many variables unrelated to need? Typically, it is higher income taxpayers who itemize. This problem could be addressed by allowing taxpayers who do not itemize the option of claiming their assistive technology as "above-the-line" adjustments to income? Above-the-line deductions or adjustments are those that taxpayers can claim in the process of computing their adjusted gross incomes. Essentially, these adjustments represent the difference between gross and adjusted gross income. Although the majority of "deductions available through income adjustments are reserved for business, there are precedents in the law for granting this treatment to individuals. Most notably, in connection with employee business expenses (which would ordinarily be deductible as itemized deductions under the MID's category), certain employed performing artists are permitted to deduct some of their expenses in this way. If this same option were extended to the assistive technology expenses of workers with disabilities, they would be freed from the necessity to itemize in order to obtain the tax advantage. Every worker who incurred assistive technology expenses in order to work would thus be able to gain a tax benefit, provided only that their income (including where applicable joint income with a spouse) was sufficient to absorb the deduction. This could be accomplished by a simple amendment to Sec. 162 of the Code. Reform such as this would make tax benefits available to low-income people with disabilities who work. Bearing in mind that highly instrumental assistive technology purchases can often require fairly modest sums, this change would also ensure deductibility in these cases to a much greater extent than is now forthcoming, since taxpayers would no longer be required to have other deductions in order to benefit. People who attempt to deduct their assistive devices under the medical expense provision face another potential inequity. Frequently, people will need to buy technology after the onset of a disability, at a time when their income has been sharply reduced. Their objectives may be improvement of the quality of life, eventual return to work or both. But because income may be low, resources for the purchase of needed assistive technology will often have to be drawn from savings. It is such cases as this to which we refer in speaking of people with incomes inadequate to absorb these potential deductions. There is no deduction, because there is little or no adjusted gross income to be reduced. Even treating their assistive technology expenses as an income adjustment would not benefit these people. A solution may be found in the rules concerning when the expense can be deducted. Medical care expenses are ordinarily deductible in the year incurred. If an exception could be made for assistive technology, whereby the deduction could be either carried backward to higher earning previous years, and/or carried forward to prospective, higher-earning future years, people with disabilities who had the commitment and the courage to invest their savings in the technology they need would not be disadvantaged for their self-reliance. "Carryover," both forward and back, is a well-recognized principle of tax law, though again primarily in connection with the expenditures of businesses. The disabled access credit, by reason of its inclusion among the group of credits comprising the "general business credit," is itself subject to carryover in certain instances. Congress has already recognized the hardship that interruption of a career due to onset of a disability can cause. For example, the law provides for waiver of the "Section 72" penalty tax that ordinarily applies to premature withdrawal of certain retirement funds. If the withdrawal is necessitated by disability, the 10% "additional tax" will not be charged (Form 5329). Even if introduced on a limited basis, so as to apply only to people who have endured substantial loss of income owing to disability, such a carryover provision could significantly encourage the reintegration into society of many people who might otherwise face lives of idleness and unproductivity. A final recommendation harks back to the disabled access credit. This provision is profoundly important. Beyond the expanded use of assistive technology it will facilitate, the disabled access credit represents the first instance in which we are aware when a major piece of disability-legislation was perceived to have a tax law dimension. So that this precedent may be a positive one, it is especially crucial that the credit prove effective in advancing the goals of the ADA and in minimizing business apprehensions about the legislation. To ensure that the ADA credit will not be inadvertently interpreted in a manner that makes its scope narrower than that of the ADA, Section 44 of the Code should be amended to clarify that "intention" and "efficacy" should govern the qualification of expenses for the credit. These are not difficult standards to apply and enforce. By and large, they are the standards used throughout our tax system. While it is appropriate to vest the Treasury Department with the authority to determine the truthfulness of ADA-related claims, there seems little need or justification for imposing upon it the heavy burden of determining what "services, modifications, materials or equipment" satisfy the requirements of the ADA. Provided they are made with the intention of earning a profit, the expenses incurred by business firms are not denied deductibility, simply because the Internal Revenue Service regards them as evincing poor business judgment. So should it be with the ADA. (3) The final level of our recommendations concerns how the interests and aspirations of people with disabilities can be assured of attention as the tax code evolves in the years to come. It is easy to understand how the concerns of this population can be lost in the great debates over tax rates, capital gains and similarly momentous issues. One current tax policy debate exemplifies the crucial concerns that need to be taken into account. Much attention is currently being directed to the goal of restoring major incentives for "research and development" to the tax code. To be sure, anything that spurs the economy is good for everyone, but some far more specific issues are involved. One of the great issues facing our engineering and product design communities is that of "universal" or "accessible" design. To the degree that mainstream products can be designed in ways that make them usable by people with disabilities, the need for add-ons--and therefore, the costs of assistive technology--can be commensurately reduced. Many manufacturing and information-services companies, while professing commitment to the goal of universal or accessible design, go on to contend that the competitive exigencies of their industries and product lines make fulfillment of these commitments impractical. Inclusion in any new R and D credit of provisions making clear that accessible design research qualifies for the benefit could go a long way toward helping companies to implement these goals. Since passage of the landmark revisions of the Internal Revenue Code in 1986, a reformulation that was supposed to provide stability to the tax code for years to come, no fewer than four significant tax bills have been adopted into law. While each of these contained provisions that bear upon the burgeoning assistive technology field, what is perhaps even more striking are the linkages and opportunities that were overlooked. Meeting these opportunities will prove difficult, however, unless methods and strategies are developed to better determine the revenue implications of proposed changes. Many of the tax law changes that would benefit people with disabilities have the additional virtue of being "revenue positive" to the Federal treasury. In no area is this more true than that of assistive technology. Unfortunately, the exact amount of benefit, along with the time period within which it will accrue, are sometimes difficult to determine. This uncertainty is exacerbated by budgeting practices that require all tax revenue losses to be made up with increased funds from other sources. Regrettably, claims for the benefits to society from various measures proposed on behalf of people with disabilities have often been difficult to prove. In the tax debates of the years to come, it will be indispensable that forecasts be based on the most complete and accurate information possible. Congress should create a commission consisting of leading disability statisticians, advocates and tax policy officials, including appropriate representation from the Treasury Department, to review existing data collection and forecasting techniques in this area, to determine the kinds of reports that the Internal Revenue Service should develop and maintain on existing utilization of disability-related provisions of the law, and to ensure that when relevant tax policy issues come before Congress, adequate and comprehensive cost-benefit information will be available to the maximum extent possible. Such research should also include the systematic marshalling of data, and the evaluation of data collection methodologies, concerning reductions in governmental transfer payment expenditure attributable to existing or proposed tax law provisions. Conclusion Part and parcel of the technology revolution that has swept society over the past two decades, the dramatic development of assistive technology is transforming the lives of people with disabilities, as well as the attitudes of society. As in any other area of our lives, the nation's body of tax laws has had an impact on this progress. That impact has been less dramatic than it might have been, due mainly to the relative inaccessibility of key provisions of the law. With expanded information dissemination, with attention to the ways our tax laws do or do not serve other public policy objectives, and with attention to technical and substantive law changes that are consistent with our values and goals, this positive potential of the law can continue to grow and to contribute. No matter how progressive and far-sighted, our tax system does not represent an answer to the assistive technology funding dilemma. It does represent one source among many that must be understood and expanded. Section Eleven: Universal Design as a Necessary Element for Reducing the Cost of Assistive Technology NATIONAL COUNCIL ON DISABILITY STUDY ON FINANCING ASSISTIVE TECHNOLOGY DEVICES AND ASSISTIVE TECHNOLOGY SERVICES FOR INDIVIDUALS WITH DISABILITIES Universal Design as a Necessary Element for Reducing the Cost of Assistive Technology by John De Witt De Witt & Associates, Inc. Glen Rock, New Jersey July, 1992 UNIVERSAL DESIGN AS A NECESSARY ELEMENT FOR REDUCING THE COST OF ASSISTIVE TECHNOLOGY BACKGROUND This paper is concerned with how design principles based upon examining the needs of individuals with functional limitations can increase accessibility and decrease the cost of financing specialized assistive technology. It concentrates upon those areas where public policy attention should be focused:  Understanding the essence of "universal design";  Examining how broadly its application can serve to reduce reliance upon public-sector funding for specialized assistive technology;  Critical paths toward the goal of universal design to reduce public expenditures. Universal design has become a popular phrase to use, especially within the assistive technology community. Everyone knows that it is a simplistic way of expressing an elementary concept with complex implications. Its fundamental premise is that when products, services and environments are designed to accommodate as broad a range of users as possible, there will be less need to produce them for individuals who function differently, for example, because of age, physical size,, or physical, sensory and cognitive ability. The goal is, in essence, design to include everyone. Universal design might more properly be expressed as "accessible" or "inclusive" design. The underlying goal of the principle is to always examine the broadest possible application of the design objective for the broadest range of individuals. In doing so, design concepts must be developed with an understanding of how individuals function in using a product, service or physical environment. By always striving to increase ease of use and convenience for the broadest possible range of individuals, the potential pool of users expands, marketability multiplies and cost is contained. Profitability is enhanced, public expenditures are stabilized or diminished. This is not to say that one size can fit all. Clearly many individuals require specialized equipment that is designed for a narrow base of users. No one would suggest that augmentative communications boards be built into every computer regardless of who might use them, or that every graphic image displayed on a TV set be encrypted, in some fashion, to automatically interpret every image for a potential blind viewer. Some devices and environments through which one travels (wayfinding)techniques will probably always be needed as dedicated assistive technology or a specialized accommodation to particular individuals. However, the extent to which accessibility to product, service and environmental use can be incorporated within basic designs, the less need there will be to dedicate funds for what can and should be generally accessible for most individuals. An example is the volume amplification control for a telephone. As a specialized product, costing about $40, it drains the resources of state-funded telecommunications equipment distribution programs. Built into the original design of a telephone, the cost is inconsequential. The technology is useful not alone to individuals who are hard of hearing, but equally to anyone using a telephone in a noisy environment. Telephones designed with the needs of hard of hearing individuals in mind, becomes an attractive feature for all hearing users as well. Public funds are now available to be applied toward a truly specialized piece of assistive technology, for example, an artificial larynx. Several proposals will be outlined later in this paper. First, some additional background should be helpful to frame them conceptually. In 1989, the following appeared in a major reference work: Improved design standards, better information, new products, and lower costs have made it possible for design professionals to begin designing all buildings, interiors and products to be usable by everyone. Instead of responding only to the minimum demands of laws which require a few special features for disabled people, it is possible to design most manufactured items and building elements to be usable by a broader range of human beings including children, elderly people, people with disabilities, and people of different sizes. This concept is called universal design. It is a concept that is now entirely possible and one that makes economic and social sense." Encyclopedia of Architecture, Design, Engineering and Construction, p.754. 1989. There are at least three domains within which the concept must be applied:  End-user products and services;  Building exterior sand interiors; and  Environments through which one travels (wayfinding). End-User Products and Services Product/service managers, designers and engineers are always concerned with their product's appearance and marketability, but all too often, without critical attention to function. Those involved with ergonomics deal with the fundamental issue of physical design and the human interface. In theory, if a product's design can be made easy, comfortable and convenient to use, it will attract a broad spectrum of buyers and satisfied users. Only recently have ergonomic/human factor engineers begun to understand the value of considering individuals with functional limitations in developing effective designs. Traditionally, product managers, designers and engineers have aimed to design for the "normal" human profile - not too tall or short, not too slim or stout, always with normal vision, hearing, speech and mental capacity, not to mention ability to move about, walk and manipulate the environment pretty much like every one else. Increasingly, designers and engineers are eager to incorporate universal design principles but are faced with a lack of useful performance specifications around which to design and fabricate. One of the major books used by the human factors community is Human Factors Handbook, by W. E. Woodson (McGraw-Hill, 1981). It is a vast accumulation of data on human size and performance variables. However, the basic source for the data were young males in military service of the United States. One can imagine the variables that never were captured: extremely short, problems with agility, extra large torso, vision and hearing outside standard military ranges, etc. The "handbook," too large to lift with one hand, is still commonly used. A similar volume is Human Scales (Henry Dreyfus & Company, 1990). It contains a compendium of tables that can be matched to female and male percentiles. In theory, many designers look to meet the needs of the 5th-percentile female to the 95th-percentile male. For example, a designer might look at the height of a 95th-percentile male and 5th-percentile female when seated in order to know how much tilt-angle is require on a PC monitor so both can see the screen from a specified distance without moving their head. In practice, the "mean" is frequently used. A "typical" 5'10" male and 5'4" female produce a "mean" person who is 5'7". It is possible that a design for the mean will serve very few individuals effectively. In fact, it should not be too difficult to design monitor tilt to accommodate the broadest possible range of individual preferences - standing up and looking down, seated and looking straight ahead, or lying on one's back and looking up! The boundaries of size and performance variables must be expanded. To the credit of Henry Dreyfus & Company, their tables now include individuals in wheelchairs. Yet the data on how a broad range of people really function are far from comprehensive. For example, what are the reach ranges of 95th percentile male 5th percentile and female sitting in a variety of wheelchairs with specified limitations of reach? Studies are needed to show the range of human performance. One such study is illustrative of the needed direction. In Boston, a group of males were measured for their ability to hear. A curve was developed showing "hearing thresholds" across a range of thresholds, by age for both frequency and amplitude. Designers of telephone products or public address systems can use such data to include a broad range of potential users. (Brant, L.J & Fosard, J.L. Age Changes in Pure-Tone Hearing Thresholds in a Longitudinal Study of Normal Human Aging in Journal of Acoustical Society of America. 1990.) In Japan, the data sources from the United States are so inadequate to meet the variables found in that country, that the Japanese government is sponsoring a major study. It will examine 180 different variables across a sample of 50,000 individuals. Building Exteriors and Interiors On May 5, 1992, the Architectural and Transportation Barriers Compliance Board (Access Board) issued its proposed Technical Assistance and Research Plan for Fiscal Years 1993-1997; Focus Issues and Americans With Disabilities Act Research Agenda. For the first year, 1993, the Access Board proposes to examine Universal Design. Projects will address the design of buildings and facilities throughout the lives of the people using them. Several points in the Request for Comments document are of interest. Buildings which accommodate all people through their life span can be achieved through the application of universal design principles in all phases of the environmental design process including programming, conceptual design, plan development, product specification, and design documentation. Building programs should incorporate information about the variety of building users and their abilities. People with disabilities and older people can be expected to be among employees, customers, and visitors to a facility. This knowledge, along with information about the functional limitations of these populations, can guide designers in making important decisions about building access in conceptual design and plan development stages, and in integrating universal design features in a sensitive manner. For example, accessible entrances are needed by the 10% of the adult population that has difficulty with stairs, but they also benefit virtually everyone. While an entrance to a building can be made accessible in many ways, some are more consistent with the building form than others. Access standards permit ramps, lifts, or walks which meet the specifications set out in the standards. Ramps, which are perhaps most commonly used, are not ideal for many people, and lifts may malfunction, leaving many people with disabilities unable to enter or exit. In most situations, proper sitting and adjustment of footings can produce level entrances. When site or design constraints conflict, level entrances can be provided through the creative use of bridges to high ground, overhead walks, or exterior elevator towers which can be shared by more than one building. From the perspective of cost and efficiency, universal design has many advantages:  The elimination of the need to make future structural modifications to accommodate the changing needs of people as they age.  The elimination of special, duplicative, and more costly elements to accommodate the needs of people with disabilities. For example, if a building is sited and designed properly to allow for an entry at grade level, it is not necessary to construct a ramp; and the use of appropriate available lavatories and hardware eliminates the use of more costly "handicapped" lavatory and hospital hardware commonly used.  The building will more efficiently serve the needs of all users. For example, when eliminating separate "handicapped" entrances through the design of one serving the needs of all users, the need to duplicate supporting elements and services such as providing two sets of informational and directional signage and security service is eliminated. While the concept is relatively simple, integration of the concept of universal design into the practice of architecture and design, and into the construction of buildings and facilities and vehicles, is much more complex and difficult. It involves changing the way people think about design. It involves changing model building codes and accessibility standards and it involves mainstreaming the concept of designing for everyone. As the above quotation from the Access Board indicates, increased attention must be given to changing the way we conceive of design. Integration of building interior and exterior elements into a cohesive framework is essential if accessibility costs are to be minimized. AT the same time, the inevitable connection between structural elements within a building and the products and services applied to the building's use cannot, must not be overlooked. Environments Through Which One Travels (Wayfinding) Wayfinding in complex indoor and outdoor environments poses challenges to master planners, program planners, architects, designers and engineers. The proliferation of roads, transportation facilities, single-use and multi-faceted buildings and structures increasingly extends within large cities, suburban and rural communities. Yet, there are imperatives to protect and nurture our natural and built environments. Our outdoor and indoor landscape needs to remain as uncluttered as possible while allowing people to easily find their way through it. An analogous human imperative also exists to acknowledge that national, cultural and physical diversity is one of our nation's greatest strengths. If diversity is to be celebrated and equal opportunity offered to everyone, innovative wayfinding solutions are critical to this promise. No longer can we permit individuals with disabilities to feel loss of independence due to artificial barriers in moving through environments. The explosion of technology, undreamed of even ten years ago, can provide exciting new ways to solve wayfinding challenges. Still, the exercise of plain old common sense and imagination is equally crucial. Wayfinding should envision:  Extending the known boundaries of this primarily visual art beyond environmental graphics to embrace a coordinated matrix of wayfinding components;  Incorporating creative strategies that take advantage of visual, auditory, spoken and tactile clues that may be used by everyone in one or more combinations;  Acknowledging and building upon each individual's physical, sensory, cognitive and language needs or abilities. Traditional wayfinding has generally concentrated upon moving people through spaces by the creative application of visual signage, symbols and color. For many individuals, because of visual, auditory, cognitive or language differences, alternative forms are increasingly important. Designers, architects and engineers can no longer model for a standard young male adult, 5'10", 170 pounds, 20/20 vision, normal hearing, and full mental capacity, who happens to speak English. Inclusive design embraces a much broader range of individual differences. Limited design results in accentuating differences in a way that excludes many individuals from full and independent participation in the programs, services and facilities of our modern society. The cost of assisting individuals with disabilities through outdoor and indoor environments can be reduced through the creative application of universal design principles. Proposals The proposals made here are fundamental to the ultimate goal of integration of individuals with disabilities into all aspects of our society. To achieve this goal, a reformation in our concepts of inclusiveness and a corresponding renaissance in design will be required. It will take many years, probably generations. This author, for one, is optimistic about the results. The benefits to everyone will be:  easier and more comfortable access to our environment, facilities, goods and services; and  a reduction in public financing of the cost for special assistance and technologies currently required to meet the needs of individuals with disabilities. There are three basic elements to the proposals regarding universal design. Each is key; the positive impact of any one is tied to implementation of all three. 1)Fund, through both public and industrial participation, an ergonomic-demographic study of human performance characteristics specifically targeted to individuals with functional limitations in areas such as audition, vision, speech, motion, sensation, cognition, environmental sensitivity, etc. The study should be conducted by a consortium of public and private entities and funded jointly by each. Since the study will benefit all industries which produce or develop a wide variety of products and services, no single industry or firm should maintain proprietary control over the project. Individuals and organizations knowledgeable in ergonomics, functionally-related disability statistics and product/service design should be directly involved in formulation of the study team and development of its scope, methodology, data collection, analysis and report generation. Individuals with each of the functional limitations mentioned above, who also have knowledge of one or more study elements, should be brought in as contributors to the study team. Every attempt should be made to build upon the existing body of knowledge, expanded and refined to incorporate the limits of performance suitable to individuals with functional limitations. Team members should draw upon any existing models (Woodson or Dreyfus, for example) and upon other sources (Acoustical Society, Japanese study, World Institute on Disability's Blue Ribbon Panel Report, Laying the Foundation, etc.). 2)Extend, in Federal legislation, the concept of accessibility to goods and services provided by commercial facilities and public entities, such coverage not to be limited to building/facility interiors and exteriors, but to the general environment within which every one must make their way (wayfinding). Much of the current body of Federal law incorporates the concept of accessibility to programs, services,facilities and some products for individuals with disabilities. However, virtually all of them envision the use of assistive technology devices and services as a means to achieving the goal of accessibility. Almost nothing in the Technology-Related Assistance Act or the Rehabilitation Act addresses the need for applying universal design principles. For example, Section 508 of the Rehabilitation Act requires access to electronic office equipment by individuals with disabilities, but its implementation focuses almost entirely upon finding ways to help Federal agencies learn about and purchase peripheral products that will enable an individual with a disability to use what would otherwise be inaccessible. Emphasis should be placed upon encouraging, or requiring, equipment design that demands as few assistive technology peripherals as practicable. Similar examples can be cited in state-mandated telecommunications equipment distribution programs. In these, states should be encouraged to fund any telephone product, specialized or not, that serves an individual's need. Note the discussion of a volume amplification handset, above. An even stronger case could be made for certain durable medical equipment. If encouraged to do so, manufacturers of grab bars could, and should, design them to be attractive, durable and relatively inexpensive as a general household product. On the contrary, the more rugged (durable) they appear, the more likely they are to be funded by public or private insurance, even though the cost is higher than it should otherwise be. 3)Enable the Architectural and Transportation Barriers Compliance Board to expand its mandate beyond the artificial barrier of physical structures to include goods and services, and the wayfinding environment. The Board should assist American business and industry to develop guidelines for accessibility that embody the principles of universal design drawing upon the ergonomic-demographic study, above. In conjunction with both public and private entities, the Board should engage in a process to define appropriate methods for measuring how human performance, as reported by the ergonomic-demographic study team, can be effectively translated into design guidelines. However, the guidelines, rather than being prescriptive, should foster creative approaches to universal design principles. Simultaneously, publicly-funded R&D should be mandated to foster projects that apply principles of universal design. Private industry should be encouraged, and in some instances mandated, to consider how new goods and services can be easily used by as broad as range of individuals as possible. For example, the fields of telecommunications and computing, consumer electronics, educational technologies, information services, to mention but a few, can no longer be permitted to engage in research, design and manufacture of products and services that exclude individuals with functional limitations because no consideration was given to their inclusion. Those who conceive, design, fabricate or market goods and services to the general public must be required to address as broad a range of users as possible. These proposals do not envision that all individuals with all types of limitations must be served by every product or service without the use of any further peripheral component or human assistance. Neither do these proposals envision that an unreasonable burden be applied, to either technical feasibility or economic viability. However, implementation of these proposals does envision that individuals with functional limitations must be included within the design framework. As a matter of public policy, inclusiveness in design is equally important as a civil right as it currently is for access to employment, places of public accommodation and public entities for their programs and services. The age of Universal Design is now. Section Twelve: Summary of Issues Raised at the Three Regional Public Forums NATIONAL COUNCIL ON DISABILITY A STUDY ON FINANCING OF ASSISTIVE TECHNOLOGY DEVICES FOR INDIVIDUALS WITH DISABILITIES Summary of Suggestions From Three Regional Public Forums March 18, 1992 Contractor: United Cerebral Palsy Associations, Inc. 1522 K Street N.W., Suite 1112 Washington, D.C. 20005 The National Council on Disability conducted three regional public forums on the financing of assistive technology for individuals with disabilities. Forums were held in Los Angeles, California, March 21 - 22, 1991; Portland, Maine, July 11 - 12, 1991; and Minneapolis, Minnesota, October 17 - 18, 1991. Over 100 individuals, including parents of children with disabilities, individuals with disabilities, professionals, government representatives, and national and regional experts testified from twenty-six states. Witnesses presented over 200 suggestions, based on their personal and professional experiences, on the financing and acquisition of assistive technology for children, adults and senior citizens with disabilities. The following pages provide a framework of the issues and suggestions presented at the forums. TABLE OF CONTENTS Page I Information Resources/Outreach/Education and Training.............1 II Service Delivery Issues...........................................3 IIIImproved Funding of Assistive Technology and Related Services..............................................5 IV Justification Standards/Criteria..................................7 V Special Populations I: Minority/Rural Outreach...................8 VI Special Populations II: Elderly Individuals and Technology.......8 VII Universal Design/Integrated Accessibility Design................9 VIII Telecommunications.............................................10 IX Technology and Long-term Care Facilities.........................12 X Alternative Solutions/Innovative Programs........................13 I. Information Resources/Outreach/Education and Training It is difficult for consumers and their families to learn what technology is available. There is no single professional or agency which knows all of the assistive technology available. Information is sometimes difficult to find, and often inconsistent from source to source. Further, many geographic areas lack any qualified and informed professionals at all. The lack of vendors, and that fact that many vendors favor specific brands of technology adds to a consumer's ignorance of available technology options. (Witness, NCD Public Forum: Portland, Maine; July, 1991) The lack of awareness of appropriate technology and effective funding strategies includes individuals with disabilities and their families, as well as professionals, educators and funding/claims agents. Physicians, often responsible for prescribing various assistive technology devices, in general have very little knowledge about the options. There is a reluctance to allow persons an opportunity to learn how to use a device, particularly persons with mental retardation. This difficulty may lie not with the technology but in assessing the need for it. The dilemma in assessing technology is that people aren't accustomed to looking at technology and translating its usefulness into information about an individual child. (Witness, NCD Public Forum: Minneapolis, Minnesota; October, 1991) Suggestions: Information Resources and Outreach 1. Conduct extensive outreach and information dissemination to the general public, including major national, regional and local campaigns to educate the public about the existence of assistive technology, its benefits to numerous individuals of all ages, individuals rights by to technology and related services law, as well as methods of acquisition. Assure that information is made accessible to individuals with sensory impairments. Include efforts to see the use of assistive technology in mainstream commercial advertisements. (See also, V and VI: Special Populations.) 2. Create national and regional clearinghouses with toll-free phone numbers, and information networks to serve parents, children, professionals, manufacturers, vendors and funding sources' personnel alike. Regional and national single points of contact, including lending libraries, would greatly facilitate the entire maze of information and reduce fears. Included contact information about these centers in the outreach efforts described above. 3. Create equipment demonstration and loan centers that can facilitate the ability to assess equipment, relative to an individual consumer's particular needs and desires. These loan centers could provide assessment services, while allowing an individual to borrow and "test" a particular device in real-life situations. This serves to eliminate the common problem of wasted funds and time on the purchase of inappropriate equipment. 4. Create "funding managers" and/or "funding coordinators" at the state and/or program level. These individuals should be formally trained, working to assist individuals and their families in piecing together the puzzle of available funding options, serving as a central resource and advisor on funding issues. (See also, II, 2). 5. Encourage and financially support the establishment of support groups. Support groups will facilitate people sharing valuable information and informal technical assistance and advice, which is not available through health care professionals, in determining technology needs and securing funding for assistive technology. Education and Training of Professionals 6. Create expert assessment teams, each with a particular specialty and expert perspective (i.e., one physical therapist, one speech therapist, one occupational therapist, etc.) which can help consumers identify useful assistive technology. The use of teams would help to overcome the current difficulty of assistive technology expanding and changing so quickly that no single person who conducts assessments can be fully informed of all that is currently available to the consumers they advise. 7. Training must be targeted to parents and school staff about how technology can work for a child, by identifying needs that can be translated into IEP goals. Capacity must be expanded to properly assess the need for assistive technology. Educate professionals and consumers on how to translate the usefulness of appropriate technology to individual learning goals and objectives. 8. Training and education of professionals, including physicians, special education teachers and therapists is critical, particularly in areas where shortages of qualified professionals exist. Incentives should be offered to entice qualified individuals to receive the additional training they may need to work with people with disabilities in the assessment, identification, and utilization of assistive technology. Also, establish funding as an incentive for training for interpreters for the deaf and hearing impaired to advance their skills. Provide incentives for teachers to enter deaf education programs and stipends to provide training for teachers in this, and related fields. 9. Professionals and physicians need continued information and training on available assistive technology and appropriate applications in different environments, and the ways to write documentation necessary to fund technology. Many requests for funding of assistive technology are denied simply because the documentation is insufficient or weak. Professionals and physicians need training to eliminate this unnecessary type of denial. 10. Mandate training initiatives regarding assistive technology for certain professionals from a federal level as a requirement for all relevant state agencies. Establish credentialing and licensing for assistive technology specialists. This will help to insure that consumers of assistive technology are receiving the appropriate equipment and the appropriate training. Education and Training of Policy Makers and Advocates for Systems Change 11. Develop a networking system and/or legal database for Protection and Advocacy and Client Assistance Programs to access what other attorneys and advocates are doing around the country. Especially helpful would be the strategies and legal arguments that they have found to be successful. Develop and maintain as a function of this network and/or database a national list of experts on the appropriate use and financing of assistive technology, to assist advocacy agencies and legal service agencies at hearings and in court. Encourage these experts to work on a pro bono basis. 12. Vocational Rehabilitation staff, special education and school administration personnel, and public insurance personnel need more education about assistive technology, especially assistive technology that enables persons with disabilities to lead more independent and productive lives, and achieve full integration in the school, workplace, home and community. 13. Persons with disabilities should serve in an advisory capacity on the review boards of private insurance companies and state agencies. It would also be beneficial for medical professionals and rehabilitation engineers to serve on the review boards, as well. The presence of these experts will help to educate others on the review boards about the value and uses of assistive technology. Mandate that individuals serving on the review boards who set up eligibility requirements for funding of assistive technology have training in the uses of assistive technology. 14. Foster relationships between people who use assistive technology and charitable organizations. The multifaceted goals of these interactions include: direct service funding, general education, and influence on the public policy and perception surrounding assistive technology. Incorporate discussion about the usage and value of technology for persons with disabilities at the professional curriculum level. Include information about education in the least restrictive environment is required by law and that assistive technology can help achieve this objective. II.Service Delivery Issues There are an abundance of inconsistencies between and within various agencies, leading to an extraordinary amount of confusion and frustration for individuals with disabilities and their families. (Witness, NCD Public Forum: Los Angeles, California, March, 1991) Suggestions: Clarification and Consistency of Policies and Programs 1. The rampant inconsistencies within and between agencies in different geographic areas and even within a single agency need to be eliminated. Clear cut application and documentation guidelines, requirements and criteria for eligibility, and appeals procedures need to be expressly defined and maintained within clear timelines. 2. Clarification of guidelines and requirements must be made within the health care, educational and rehabilitation systems so that refusal on the basis that "someone else" should be funding a particular device or service can be eliminated. This will also eliminate the need to apply for coverage simply to receive a denial so that other funding can be obtained. Coordination of Service Delivery 3. Interagency agreements must be established to improve and increase coordination between agencies, especially funding sources. Establishment of a single point of contact to serve as a coordinator for each of the varying agencies in the state would be helpful. (See also I, 4). Encourage the coordination and pooling of resources from individual agencies versus the "payor of last resort syndrome". Also, improve coordination between assistive technology dealers and public and private insurance providers. 4. There should be regional or national coordination of funding sources so that persons with disabilities who are entitled to money or other services could be registered as eligible as early as birth. Consumer-Driven Service Delivery 5. Create a consumer-driven system, so that consumers will have more control and decision making power over their own lives. 6. Policies need to be more consumer-responsive and realistic, and should recognize that the assistive technology needs of individuals with disabilities are ongoing and changing, particularly for children with disabilities. Also, arbitrary and unreasonable time restrictions should be eliminated. For instance, the requirement in some programs that five years must pass before the consumer can update a piece of technology. 7. Federal and state policies which do not reinforce creative funding options, responsive to the unique needs of different individuals and families, should be revised or eliminated. 8. Encourage school districts to establish an open, friendly, consumer-responsive environment toward the use and funding of assistive technology--as an important, crucial step in helping to fulfill the potential of each student. Service Delivery to Children 9. Encourage the financing of assistive technology as early in a child's life as possible. If a child enters the school system already using assistive technology, convincing the school board to fund new devices is much easier. Furthermore, the earlier a child begins using assistive technology the sooner he or she will be able to achieve his or her potential. 10. Technology paid for under the students IEP must be available to follow the youngster home at the end of the day, the week, or even the summer. The educational value of a device is not limited to a classroom. Furthermore, as a youngster moves through the school system his or her specialized assistive technology must go with them. 11. Assessment and diagnosis of a child's capabilities and needs should be conducted by a multi-disciplined team of professionals, educators, therapists and family members, all of whom would be knowledgeable about the range of assistive technology options available. Emergency Systems/Safety Concerns 12. Establish mandatory closed captioning of all television programming, and real-time captioning of all live events and emergency broadcasts. Mandate the use of flashing light alarms in all public buildings with visual instruction provided. III. Improving Funding of Assistive Technology and Related Services There is a lack of funds across all funding sources, public and private. Even those systems which work better than others are subject to the limits of their funding supply, and claims which may otherwise be eligible for funding are often rejected due to the lack of funds. (Witness, NCD Public Forum: Los Angeles, California; March, 1991) Suggestions: Legislative Changes 1. Legislative changes are needed to guarantee adequate funding under existing laws for the provision of assistive technology, such as the Individuals with Disabilities Education Act, Tech Act, Vocational Rehabilitation and various state laws, such as the state of California's Low-Incidence funding program. Existing entitlements in schools and the workplace should be clarified and enforced. 2. There should be clear entitlements to assistive technology as a basic civil right in the home, classroom, workplace, and community. 3. Legislation--federal and state, needs to be enacted to mandate private insurer coverage of assistive technology. 4. It should be mandated by law that the costs of evaluations, training on equipment, repair and maintenance should be included in any and all funding for assistive technology. 5. Public education funding, including at the state level, needs to be more flexible in allowing children to use equipment at home, and take equipment with them when they move or graduate. Legislative mandates and increased funding would facilitate this. 6. There are numerous potential cases of individuals who could benefit from assistive technology, who are denied their requests. Very few of those cases come to the attention of Protection and Advocacy Systems and Client Assistance Programs. More funding is needed for the Protection and Advocacy Systems to better serve individuals with disabilities who have been denied assistive technology, and at the program level to allow administrators, such as vocational rehabilitation counselors, the programmatic funding to take on such cases. Medicaid 7. Require states to acknowledge the Rehabilitation Purpose of Medicaid in medical needs determinations. 8. Declare that "exclusion lists" of durable medical equipment are inconsistent with the Medicaid amount, duration and scope mandates. 9. Declare that augmentative communication devices and services are covered by Medicaid in a broader definition of "medical necessity." 10. Declare that persons "dually eligible" for Medicaid and Medicare are entitled to full Medicaid payment of their durable medical equipment needs. 11. Eliminate barriers to independence for recipients of nursing, home health, and personal care services. Special Education 12. Develop a review/accountability mechanism to ensure that school districts consider and include assistive technology as a part of the IEP drafting and review processes. 13. Clearly state a federal policy regarding integrated programs including the role of assistive technology as a support for integration. 14. Require school districts to recognize that least restrictive environment is a state-wide consideration. 15. Declare that schools cannot restrict technology to school property or to school sessions. 16. Develop review/accountability mechanisms to ensure that school districts and state vocational rehabilitation agencies engage in transition planning. Vocational Rehabilitation 18. State an operational definition of rehabilitation engineering including the services that are covered, how evaluations will be conducted, and how evaluation data will be used in decision making. 19. Develop a review/accountability mechanism to ensure that states provide rehabilitation engineering services in Individualized Written Rehabilitation Plans. IV. Justification Standards/Criteria The justification standards for assistive technology required by all funding sources, public and private, are overly restrictive, and serve as the most prevalent barrier to the funding of assistive technology services and devices. Private and public insurers' demand for proof of "medical necessity," combined with public education's requirement of "educational necessity" are standards that do not respond adequately to the needs of users. (Witness, NCD Public Forum: Los Angeles, California; March, 1991) State Medical Assistance Programs or Medicaid have no specific guidelines for the type or amount of documentation needed for any of their criteria except the criteria of medical necessity. This allows the state to keep asking for additional information. The residents' right to appeal a denial of service is not activated as there has been no denial. The communication has all been between the professionals, the supplier and the medical assistance program. The resident is often left in the dark during the prior authorization process. The vast majority of controversies involve disputes over whether a "life skill" is really a medical necessity. (Witness, NCD Public Forum: Minneapolis, Minnesota; October, 1991) Suggestions: 1. The medical necessity requirement for funding by both private and public insurers of assistive technology needs to be altered to a standard that responds to the need to improve function for enhanced productivity and independence. 2. The public school funding streams' restrictive definition of "educational necessity" must be broadened to a more functional model, allowing for the transfer of equipment out of the schools and increased benefit from assistive technology usage. 3. Funding agency personnel need to be educated on the benefits of assistive technology, both functionally and fiscally. 4. There is a need for legislative and regulatory clarifications that the important purpose of the Medical Assistance programs is to ameliorate the effects of a disability, including rehabilitation and assistive technology. 5. There is a need to specify in regulation or statute the specific documentation necessary to establish medical or functional necessity to meet a rehabilitation objective, and a reasonable timeline for application review and approval. These requirements should be coordinated across funding sources so they do not conflict with one another across programs. 6. The accountability of physicians, payors and providers needs to be increased so that appeals are not required to determine an explanation for denial, and payors and physicians are held more accountable for their recommendations. This should be mandated by law. V. Special Populations I: Minority/Rural Outreach There are specific barriers faced by individuals of minority background or cultural diversity who are in need of information about assistive technology. These special obstacles include: language barriers, lack of informed medical advisors, and little exposure to other individuals using assistive technology. (Witness, NCD Public Forum Minneapolis, Minnesota; October, 1991) Suggestions: 1. Develop and mandate outreach programs specifically for individuals of minority background or cultural diversity. This outreach should include written materials produced at a low reading level, as well as materials and promotions in Spanish and other languages. Information should be disseminated via community resources, such as churches, medical clinics, social service agencies, etc. Information should include visual demonstrations of people of color using assistive technology. 2. The unique cultural attitudes on disability and specific cultural needs involved in providing assistive technology service delivery to individuals of minority groups should be studied, and taken into consideration in outreach and service delivery. 2. Increase the number of minority administrators in funding agencies and on funding review boards. 3. Develop a mobile traveling assistive technology demonstration center to reach home-bound individuals and consumers in rural areas. VI. Special Populations II: Elderly Individuals and Technology Comprehensive public rehabilitation programs for older person are widely unavailable because they are not yet perceived as priority or urgent needs. While general knowledge of disabling conditions and appropriate rehabilitation services among federal policy makers is evident, limited specific knowledge of the economic and social benefits and costs of such programs frustrate the growth of that sense of priority and urgency. (Witness, NCD Public Forum Minneapolis, Minnesota; October, 1991) Suggestions: 1. Specifically targeted outreach efforts should be made to older Americans, demonstrating the benefits of assistive technology. Many older Americans do not see themselves as disabled, and do not understand or consider the benefits of assistive technology. These individuals need to be informed of the benefits, as well as their rights to assistive technology. 2. Interdisciplinary research data must be collected on disabling conditions and rehabilitation services. To date, most health data collection has focused primarily on single points in time rather than transitions and change throughout a lifetime. National and state data collection efforts should be revised to measure and collect information longitudinally in order to monitor pathology, improvement functional limitation, disability and prevalence over time. 3. Government should take an active role in sponsoring rigorous research on issues such late-life onset of chronic disabling conditions; the relative cost, benefits and dynamics of rehabilitation strategies, including assistive devices; and the social and economic barriers to seeking assistance for disabling conditions. Usage of assistive technology, particularly home adaptions, could lead to increased independence and financial savings for many older Americans. 4. Health and social support professionals must be trained to understand issues related to disability and aging. Incentives must be offered for professionals to seek this training and pursue a career in geriatrics. 5. The public must be informed about issues related to aging and disability, and encouraged to express their concerns and needs to policy makers at federal, state and local levels. 6. The federal government should create incentives through waivers, special funding or other means to encourage states to establish policy level coordination mechanisms between agencies responsible for serving people with disabilities, and agencies serving the elderly, to maximize meet the long term care needs of all people with disabilities. VII. Universal Design/Integrated Accessibility Design Assistive technology is an economic issue for American business and public institutions. Integrated accessibility implies the principle of inclusion--consumers with disabilities as part of the general consumer market. (Witness, NCD Public Forum Portland, Maine; July, 1991) Suggestions: 1. The consideration of assistive technology must be moved out of the medical/rehab model and into an integration model. Integration of people with disabilities into the social and economic fabric of our society is good for everyone. Assistive technology will play a central roll in this development. 2. American business should be provided incentives to increase the accessibility of their products and services. Products, services and their underlying technologies should be designed and deployed with persons with disabilities in mind. If a task is made easier for a person with a disability, those without disabilities also often find the same task easier for them. For assistive technology which becomes integrated in general market products and services, the cost to American business is generally less than one percent, either for design or manufacturing. The increased sales of accessible products to all consumers including those with disabilities will always exceed incremental cost by virtue of greater volume of purchases or use. 3. Reduce the need for assistive technology by dedicating research monies to encourage accessibility of the environment as a whole. For example, if computer software is designed to be accessible for use on the general market a consumer would not need to purchase specially designed software to access the regular software programs. No attention has yet been made to the accessibility of many office electronics, such as facsimile, answering machines, photocopiers, and business telephone systems with voice, data and video integration. VIII.Telecommunications Emerging telecommunications are designed in a way that requires an ever greater number of functional abilities. Since every human ability defines a human disability more and more, people with disabilities can expect to be excluded from telecommunications access, unless, through public policies, and the industry, in its product designs, take action to build electronic curb cuts into all products and services. (Witness, NCD Public Forum Minneapolis, Minnesota; October, 1991) Suggestions: 1. Equivalent access for all people with the full range of current and emerging telecommunications technology is not only possible, but imperative if individuals with disabilities are to take command of their lives and live them more fully. 2. People with Text Telephones have little assurances that they can communicate with government offices, even those listed as having Text Telephones. Government workers are often untrained in Text Telephones use and hang up the phone because they do not recognize the sound of a Text Telephone Call. 911 operators do not recognize a Text Telephone call. There are non-technical barriers to access to telecommunications. Equipment training for all individuals and attitudinal barriers need to be addressed. Hearing 3. The incorporation of Text Telephone access ports or keyboards, hearing aid compatible handset, volume controls for handsets and speakers, and the simultaneous use of visual information to supplemental audio information, will enhance use of telephones and other telecommunications products and services. Development of text-to-speech and voice carryover technologies will also enhance use. Simultaneously, text-to-speech will enhance use for those with speaking-related disabilities. Visual 4. The incorporation of synthetic speech, large print with simple serif fonts and high contrast, tactile markings used to create a frame of reference, and the simultaneous use of audible information to supplemental visual information, will enhance use of telephones and other telecommunications products and services. Development of text-to-speech directories for telephone networks, shopping malls; or the incorporation of descriptive-video services on TV, cable or videotext systems, will increase access. Simultaneously, use of text-to-speech will assist persons with language-related disabilities. Mobility 5. For persons with upper-extremity limitation, incorporating light handsets which are natural to grip and hold; or keys, switches and controls with sufficient concavity, size, spacing, force and slip co-efficient, will enhance use. Development of speech-to-text features, for no-hands use, will increase access. Simultaneously, components with "good" tactile qualities will enhance use for blind/low vision users. Speech-to-text will enhance use for persons with limitations in speaking, as well as many with perceptual, memory or sequencing limitations. 6. For persons with lower-extremity limitations, incorporating components which are within line of sight and reach from a "sitting" height; spaces such as public telephone sites which will accommodate a variety of wheelchair designs, or work-shelf areas for placing writing materials, will enhance use. A work space will enhance use for a Text Telephone user. Development of easy to manipulate cordless telephones will enhance use for consumers with other limitations in mobility or speed. Although many of these accommodations appear to be architectural rather than technical, they are important areas to address. Speech 7. Incorporating options for text-to-speech technology; increase volume output and hands-free operation with use of an operator-style headset/transmitter will enhance use. Continuing and improved training of telecommunications personnel having contact with the public will enhance their communication with persons who stutter, have soft or other speech-related disabilities. Simultaneously, improved and attitude modification, will enhance communication with some consumers with cognitive disabilities. Cognitive Processing 8. An individual with a learning disability frequently benefits from redundant presentations. A telephone with a visual call progress display has increased functionality. Add synthetic speech verification of dialpad keys being pressed, as an option, and functionality is increased even further. Limitations in memory or sequencing are also being addressed in much the same manner. Simultaneously, audio or visual features enhance use for blind/low vision or deaf and hard of hearing consumers. IX. Technology and Long-term Care Facilities Persons with multiple and severe disabilities are among the least frequently targeted for movement from inappropriate nursing facility placements into community settings. The equipment being used in facilities is often in extremely poor condition. Lack of understanding of the difference modest assistive devices can make and the knowledge of the many options that are readily available to individuals with disabilities is a great failure in the existing service delivery systems for individuals in state facilities. Many persons receiving Medicaid waiver services who could benefit from assistive technology do not receive it. Adaptive and assistive devices are included in only a minority of states' waiver plans for ICF/MR-eligible individuals although such devices are requested in almost three-fourths of the states' waiver applications to serve persons with mental retardation and related conditions inappropriately placed in nursing homes. (Witness, NCD Public Forum Minneapolis, Minnesota; October, 1991). Suggestions: 1. Comprehensive, practical training on the appropriate and practical uses of assistive technology should be required for licensing of all long-term care facilities. Training should show possibilities and applications of simple and sophisticated technologies. Training must include facility staff and consumers. 2. Through specialized use of Medicaid waiver funds, other states could be encouraged to develop projects similar to SPICE in Illinois (see Appendix D, p. 99). Additionally, state agencies could have a better appreciation of the important role that assistive technology plays in the lives of persons with disabilities. This could translate into improved access to funding for equipment and devices. 3. An important role for the government could be to support the creative use of Medicaid dollars to fund a combination of equipment and personal attendant services, which could eliminate the need for costly institutional care. 4. Greater accountability must be demanded of facilities when receiving public dollars to provide care for persons with multiple and severe disabilities. There must be some definition of basic assistive technology needs which institutions must address in order to continue participating in the Medicaid program. 5. The question of who pays for assistive technology when a person lives in a nursing home must be settled. The idea that nursing homes should be expected to finance assistive technology for all residents within a pre-determined capped per-diem is not feasible, regardless of the rate setting methodology used. Residents should be eligible to participate in any program which helps to finance assistive technology for individuals. Artificial eligibility criteria based on age or residence should not be tolerated. X. Alternative Solutions/Innovative Programs State funding sources often require that equipment must be rented only, not bought, in order to be state funded. This results in tremendous waste, as the amount individuals pay in rent over the years often exceeds the actual cost of the equipment. Equipment which is returned by one individual can then be rented out to another individual, again making the total which the state collects far excessive to the actual cost of the device. State agencies typically do not have enough devices available for rent, or varieties and specific features are unavailable. Repairs and maintenance are not usually covered. For states which allow individuals to purchase equipment, there is often little or no opportunity for the individual to "borrow" the equipment for a pre-purchase trial period in order to test its suitability. Furthermore, the scarce number of vendors (virtually none in certain rural areas) often means there is no opportunity to make comparisons of different devices or even to learn the existence of several different types of similar equipment on the market. (Witness, NCD Public Forum: Minneapolis, Minnesota; October, 1991) Suggestions: Funding Alternatives 1. States which currently rent equipment should offer low interest or no-interest loan programs so that individuals can purchase and own their own equipment. States should investigate, evaluate and encourage alternative funding programs for assistive technology. 2. The federal government should offer tax incentives through the IRS for individuals, agencies and companies to purchase assistive technology. 3. Create incentives for manufacturers, banks and foundations who can organize funding partnerships among themselves and increase the number of funding sources, including loan programs, available outside of state agency funding sources. 4. Federal and state government should provide grant "seed" funding to encourage public libraries to develop assistive technology access programs. Funding could be made available to local agencies for assisting consumers in purchasing the assistive devices needed. The nature of the funds could be either grants or loans. Funds could cover the cost of initial equipment, staff training and support. Libraries should be encouraged to employ a person solely responsible for the planning and direction of these services. Local grant funding could be sought in order to begin the new service and integrate the service into the mainstream of public libraries. 5. Encourage states to develop a voucher program for individuals with a disabilities, and allow the individuals to determine which technology services or devices provide the best use of their voucher. 6. Create a government program that offers manufacturers of assistive technology financial subsidies to cover research and development costs, the same way that the government subsidizes research and development for the military. This would ultimately lower the costs of assistive technology to the consumers. Access to Information 7. Develop statewide or regional tracking systems and consortia for purchased and used assistive technology, particularly for children, who outgrow devices frequently. Recycle assistive technology, pool resources and share materials, equipment and expertise. These same regional or state networks or consortia could offer equipment loan banks, allowing individuals to "borrow" devices and equipment. These networks could offer demonstration labs, training and assessment as a centralized resource for the area they serve. 8. Support funding for an independent computer-based technology selection system that brings together persons with disabilities, clinicians who prescribe technology, government, and private insurers who pay for technology, allowing all parties to cooperate in selecting and paying for the most appropriate, cost-effective technologies. An example of such an alternative is ECRI. 9. The state should sponsor periodic assistive technology conventions to spread information about available equipment. Enhanced Service Delivery 10. States should purchase equipment with maintenance agreements. All funding of devices should include funds for maintenance and repairs for the life of the equipment. 11. Implement a system for training and follow-up for consumers after the acquisition of assistive technology. This will insure that the ultimate benefit is achieved from the device. 12. Mandate that vendors allow consumers trial or test periods before purchasing assistive technology at no charge to the consumer. 13. Usership vs. Ownership: With "usership," a person with disabilities has the ability to use and receive the benefit of assistive technology as the individual's needs change. This allows for aging to be factored in, changes in technology, and advancements in technology. The concept of "usership" of assistive technology should be carefully explored including how it is working in other countries (i.e. England) where their is a system of socialized medicine. Alternative Systems Change Solutions 14. Congress should consider technology-related assistance as a cross-agency imperative. The need for assistive technology does not stop at the end of an educational process, nor when the work day is done. 15. Select an agency at the national level that can organize and coordinate the regulation of similar assistive technology services within each state, thereby standardizing services across the country. 16. When assistive technology is required for any purpose, education, employment, or personal independence, its delivery should be provided and funded apart from the usual provider stream. Let technology specialists assist the consumer with overall needs assessment, evaluation, selection, purchase, maintenance, upgrading or replacement as needed. A separate entity should be established however, which will bridge over other agencies for the provision of technology-related assistance. Funds currently appropriated to individuals agencies would be concentrated in a single Technology-Related Assistance Administration. 17. A case management model should be used which is consumer-driven, so the interaction between technology, personal assistance services and environmental support could be integrated and managed by the consumer when appropriate. This allows for a range of options to address a range of individual needs. *Note that: Congress has already recognized that the individual with a disability is in the best position to identify the appropriate auxiliary aid in a given context. -- See 28 CFR Sec. 39.160(b) and the ADA Conference Report No. 101-116, which states that the "expressed choice" of an individual with a disability for an effective accommodation shall be given "primary consideration"; and -- HHS' Office for Civil Rights also has a long-standing policy granting a "presumption favoring the hearing-impaired individual's self-assessed need" for a particular type of auxiliary aid. (Memorandum from Roma J. Stewart, Director, Office for Civil Rights, dated April 21, 1980). ** American Bankers Association, Americans with Disabilities Act: Alert for CEOs; Credit Union National Association, Newswatch: April 30, 1990; April 22, 1991. *** e.g., employment, human interest. **** For example, General Motors offers assistance in vehicle modification. See brochure attached. Also, Volkswagen which was not part of this survey, offers purchasers needing hand controls or a lift, a rebate to help offset its cost. *****hereafter "cosigner" or "cosigners" ******See especially "unqualified applicant," "poor credit history," "inadequate income" and "inadequate collateral." *******"minor," "under 21," "noncitizen," "nonresident," "recent grad," "if applicant is member/cardholder": 1 each ********Total exceeds base size due to multiple responses. The sum of: accept/require, 48 (94%); categoric/unconditional not accept, 2 (4%); and no response, 1 (2%) equals the base of 51 (100%). ********* Total exceeds base size due to multiple responses. The sum of: accept, 43 (84%); categorically not accept, 6 (12%) and do not know, 2 (4%) equals the base of 51 (100%). ********* Base of respondents (51) reduced by: lenders categorically not accepting cosigners (2) or categorically not accepting mitigating circumstances (6), adding back one which appears in both categories. ********* A similar loan program in the state of Maine was not mentioned by any respondent. ********* "Opened secondary market to affordable housing," and "more affordable rates for all": 1 each ********* "ABLE" state program in North Dakota with special qualifications and reduced rates. ********* "FDIC," "auditors, "Office of Thrift Supervision": 1 each ********* Texas law prohibits: home equity loans (except to pay taxes or for home improvements) and first mortgage refinancings (except for remaining loan balance). * "something like SBA/Guaranteed Student Loans" and "minority business/Housing programs": 1 each * NEW PROGRAM UNDER DEVELOPMENT: relaxed lending criteria, demonstrated understanding of obligation, ability & desire to repay.  FOR ASSISTIVE TECHNOLOGY DEVICES: Relaxed: income standard, credit criteria, discounted loan rate, no late fees.  1ST TIME BUYER PROGRAM FOR VEHICLE MODIFICATION (brochure attached): - Up to $1,000 reimbursed for modifications; - financing of full cost including modifications.  BASIC LOAN PROGRAM: Provides loans to low income individuals for basic human needs (includes assistive technology). Exceptions for: - limited credit history; - credit problems (with good explanations); - length of employment/residency - income level. Applicant must qualify - cosigner not allowed (if cosigner required, then regular loan program). **Appeals process, independent of lender, for borrowers whose applications are rejected.  Credit counselling & copy of credit report to consumer. *** because of accessibility modifications (loan was still made). **** No lender wants to make loan with expectation that the funds will be recovered through repossession. ***** See The Wall Street Journal article dated January 28, 1992, copy attached. ******from the Greek "tele" meaning "far away," communications over a long distance. *******"Universal Service" means "...so as to make available, so far as possible, to all the people of the United States, a rapid, efficient, Nation-wide and world-wide wire and radio communications service with adequate facilities at reasonable charges..." (Communication Act of 1934, 42 USC, Section 151 Purposes). ********From the Foreword in Telecommunications and Persons with Disabilities: Laying the Foundation - A Report of the First Year of The Blue Ribbon Panel on National Telecommunications Policy. World Institute on Disability. 1991. p. iii. ********* De Witt, J., Mendelsohn, S. 1989. Market Study of State Distribution Programs for Specialized Telecommunications Equipment. Glen Rock, NJ: Private client study. ********* See Attachment A--Functional Limitations in the Use of Telecommunications. in Telecommunications and Persons With Disabilities: Laying the Foundation. Oakland, CA: World Institute on Disability. 1991.