Center for Workers with Disabilities

Remarks by Martin Gould, Ed.D.
Senior Research Specialist
National Council on Disability

The Road Behind: The Road Ahead

November 17, 2004

Good morning. Thank you for inviting NCD to be here today. NCD is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. It is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD is charged by Congress with monitoring federal statutes and programs pertaining to people with disabilities, and assessing the effectiveness of those programs in meeting the needs of people with disabilities. As part of its mission, NCD provides a voice in the Federal Government and to Congress for all people with disabilities in the development of policies and delivery of programs that affect their lives.

In 1996, NCD convened a summit of people with disabilities to discuss how to achieve independence in the next decade. Three hundred grassroots disability leaders were chosen to participate in the summit. From that summit, NCD committed to a policy research agenda for evaluating and reporting on the status of implementation and enforcement of key laws. This cycle of work ran from 1999 to 2003. During that As a result, NCD issued reports on the Air Carrier Access Act, Americans with Disabilities Act, Individuals with Disabilities Education Act, Section 504 of the Rehabilitation Act, Fair Housing Amendments Act, and Section 508 of the Rehabilitation Act as part of its Civil Rights Monitoring Initiative.

In 2001, NCD began a new cycle of policy research we refer to as “Investing In Independence.” The first set of studies in this new cycle dealt with the issue of delinquency prevention and juvenile justice, school vouchers, universal design and technology, and consumer-directed health care; we expect to release another report from the Investing In Independence series next month on the topic of ‘livable communities.’ A review of the status of evidence-based research and analyses in the abovementioned areas suggested a need for focused policy research on these issue areas as identified by a range of stakeholder groups, and NCD Board Members. Current NCD research includes: long-term services and supports, return-to-work, fiscal incentives and tax policy, and innovations in technology.

From our research we have learned that Americans with disabilities have made some gains from the development of a range of disability policies and programs these past 40 years. The current system, in fact, consists of hundreds of programs spread across nearly a dozen Federal departments with multiple funding streams. We have also learned that these policies and programs are responsible for some improvements in the quality of peoples’ lives, to some degree.

Over the years, questions have been raised whether these programs communicate with each other, whether they work at cross purposes, and to what degree they have achieved success. Not surprisingly, the General Accounting Office (GAO) has recently undertaken a comprehensive evaluation of the current "system" of federal disability policies and programs.

How did we manage to build such a rich public program environment? Can federal programs be more effective? Will the programs make significant differences in peoples’ lives? The topic I am addressing today I call The Road Behind: The Road Ahead.

The Road Behind

The development of our current federal disability policy framework for millions of Americans with disabilities dates back to the early 20 th century, starting with Workman's Compensation in the first decade and the Vocational Rehabilitation Act in 1920. A major milestone was the Social Security Act, which established federal old age benefits and grants to states for assistance to people who were elderly or blind, and to children with physical disabilities. While other policies and legislation were enacted after the Social Security Act of 1935, the bulk of our nation's disability policy framework has been put into place over the past 40 years.

The first generation of disability legislation occurred in the 1960s. In 1965, Social Security Amendments were passed, establishing Title XVIII (Medicare) and Title XIX (Medicaid) that provided hospital and medical insurance protection to persons with disabilities. In 1967, the Social Security Amendments established a Medicaid/Early Periodic Screening, Diagnosis and Treatment mandate for children under the age of 21 years. And in 1968, the Architectural Barriers Act (ABA) required access to facilities designed, built, altered, or leased with Federal funds. The ABA marked one of the first efforts to ensure access to the built environment.

The second generation of disability legislation occurred in the 1970s. For example, the passage of the Rehabilitation Act of 1973 provided the first major statutory expression in the form of Section 504, through which Congress prohibited discrimination toward qualified individuals with disabilities by recipients of federal funds. In 1975 the Developmental Disabilities Assistance and Bill of Rights Act stated that people with developmental disabilities have the right to appropriate services and treatment that maximize their development and take place in the "least restrictive environment." And, in 1975, the Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act (IDEA), granted children and youth with disabilities their constitutional right to "a free appropriate public education."

The third generation of disability legislation occurred in the 1980's. The major theme involved extending civil rights' antidiscrimination protections in areas of peoples' lives. In 1986, Congress passed the Air Carriers Access Act, which protects people with disabilities against discrimination by air carriers. In 1988, the Civil Rights Restoration Act amended Section 504 provisions and other legislation to cover not only direct recipients of Federal funds within an institution, university or business but the entire institution, university or business. The Fair Housing Amendments Act (FHAA) was also enacted in 1988, and extended civil rights protections for people with disabilities into the private housing sector.

The fourth generation of disability legislation in this country began during the 1990s. The major themes were consumer empowerment and individual choice. In 1990, Congress passed the Americans with Disabilities Act (ADA) under which it is illegal to discriminate against individuals with disabilities in both the public and private sectors: employment, access to public accommodations, transportation and telecommunications. Other legislative enactments in the 1990's include: the 1993 Family and Medical Leave Act, which granted employees leave under certain circumstances for medical reasons including care of a child, spouse, or parent with serious health conditions; the 1996 Telecommunications Act, which required manufacturers of telecommunications equipment and providers of telecommunications services to ensure that such equipment and services are accessible to and usable by people with disabilities; and, the 1999 Ticket to Work and Work Incentives Improvement Act, designed to provide SSI and SSDI beneficiaries with a "ticket" or voucher for services of their choice.

The Road Ahead

Notwithstanding the individual social policy and legislative achievements of the past 40 years on behalf of millions of Americans with disabilities, we need to establish a cohesive "disability" policy agenda in the post-election years. Let me be more specific.

We as a nation need to agree on national goals and a vision for the future, and then we need to establish the breadth of a disability policy framework to address that agreed-upon vision. Currently hundreds of individual federal programs, many with varying and different definitions of "disability," exist. There are dozens of individual federal funding streams with varying and different eligibility criteria for program access. There is a patchwork quilt of policy and program initiatives that change when Administrations turn over, or that are outmoded – some dating to the 1960s and 1970s -- and uncoordinated. There are no specific or concrete national goals for people with disabilities in a host of critical areas of life such as homeownership, employment, educational attainment, or fiscal security.

Once national goals, a vision, and objectives are set out, how can these frameworks be explained in a clear and unambiguous manner? We need to agree on the terminology to be used. In doing so, we need to attend to pressure not to carve out sub-groups by specious use of language. We need to rely on language that is not over-professionalized, but that everyone understands.

Finally, we need to determine and apply criteria to generate research, statistics, and other data by which to judge progress on national policy objectives and guide leadership's decision making. There is a need for a consistent, long-term set of objectives (related to the national goals and vision) which are practical in nature and in application (e.g., educational attainment and lifelong learning, social inclusion, asset development and wealth accumulation) that are relevant for all members of the population of Americans with disabilities.

We need to decide which groups or subgroups should be targeted for inclusion (e.g., foster children and youth who are currently not represented in national data sets), for which national objectives these subgroups should be included, and with which policy instruments these subgroups and objectives should be targeted (e.g., Presidential Executive Orders, 5- or 10-year demonstrations).

Conclusion

The landscape of American government is rich with disability policies and programs designed to address identifiable national issues, at least, over the past 40 years. Some of these policies and programs have worked well; some have not achieved the results intended. Based on GAO's scrutiny of federal policies and programs, Congress likely may begin a redesign and/or redefinition of the landscape. The ideas listed above offer one practical approach as GAO, Congress, and you begin to shape "The Road Ahead" for millions of Americans with disabilities.