Richard Scotch noted in 1999 that Americans with disabilities have made significant gains in the development of a range of disability policies and programs in the previous 30 years. In that paper presented at a Mary Switzer seminar, Scotch examined the assumptions underlying disability programs. His analysis also focused on three themes that have provided direction to and impacted disability policy development and implementation: (1) the nature of disability identity; (2) the implications of a universal concept of disability, and (3) how these themes interact with, and are impacted by "generic" social policy. As Scotch points out, American government has been compelled to classify and publicly support an evolving set of programs and benefits which require certification of group membership (i.e., disability) based on policies which are not necessarily mainstream. The current system consists of literally hundreds of disconnected programs spread across nearly a dozen Federal departments. These programs rarely communicate with each other, often work at cross purposes, and have limited success. As a result, the General Accounting Office (GAO) has recently undertaken a comprehensive evaluation of the current "system" of federal disability policies and programs, presumably to offer Congress information and recommendations for overall improvement.

This commentary briefly notes the evolution and aims of America's disability policy agenda, and offers a strategy or framework to make those policies and programs more coherent.

The Road Behind

At the federal level, The development of our current disability policy framework for millions of Americans with disabilities can be dated 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 subsequent to the Social Security Act of 1935, the foundation and 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 marks 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 disability rights movement and leaders with their 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. Section 504 was followed by other disability legislation that incorporated a civil rights orientation. As another example, 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." It established a system of "protection and advocacy" services in each state to advocate for people with developmental disabilities and represent their rights. Additionally, in 1975, the Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act (IDEA), granted children with disabilities their constitutional right to "a free appropriate public education."

The third generation of disability legislation occurred in the 1980's, and 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. The Civil Rights Restoration Act, which extends the antidiscrimination coverage of prior civil rights legislation, was enacted 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 enacted in 1988, and extended civil rights protections for people with disabilities into the private housing sector. The law had a number of disability-specific provisions, including the requirement that "reasonable efforts" be made when needed to secure and enjoy housing.

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). The ADA holds that 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, which was designed to provide Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) beneficiaries with a "ticket" or voucher for rehabilitation and/or employment services of their choice, and was also intended to eliminate disincentives to work in Social Security provisions.

The Road Ahead

Notwithstanding the individual social policy and legislative achievements of the past 40 years or so on behalf of millions of Americans with disabilities, we need to establish a cohesive "disability" policy agenda in the coming 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 or specialized, 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 others begin to shape "The Road Ahead" for millions of Americans with disabilities.

References:

Scotch, R. (1999, September). Disability Policy: An eclectic overview. Paper prepared for presentation at the Mary Switzer Memorial Seminar, Michigan State University, East Lansing, Mich. www.mswitzer.org/sem99/papers/scotch.html.