A User’s Perspective on Federal Disability Data

by Martin Gould, Ed.D.
Director of Research and Technology
National Council on Disability
at the
American Statistical Association- August 2006

Good morning. Thank you for having the National Council on Disability (NCD) here today on this panel. NCD is an independent federal agency making recommendations to the President and Congress on issues affecting in excess of 51 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.

NCD’s authorizing legislation requires that we use extant data to inform our federal policy research, legal analysis, and program evaluations.  In a very real sense, our work as an advisory body for Congress and the White House depends directly on the quality and availability of federal agencies’ data collections.

Based on our use of federal agencies’ data and information over the years 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 policies and related programs spread across nearly a dozen Federal departments with multiple funding streams. We have tried to learn that these policies and programs are responsible for improvements in the quality of peoples’ lives.

Over the years, questions have been raised by NCD and others - e.g., Government Accountability Office - whether these policies and programs have achieved success. Can programs be more effective? Will the policies make significant differences in peoples’ lives? Is our system of federal disability policies and programs designed to effectively address current conditions in the lives of our citizens?  Do we have the data to allow our leaders to make informed decisions?

To try to answer these questions, NCD looks to use federal data. Increasingly, we have been asking for more and better federal disability data and information particularly as the policies and programs become more complex - e.g., in the area of long-term services and supports which cuts across health, transportation, housing, personal assistance, nutrition, and other areas; or in the area of livable communities which interweaves regional planning and infrastructure development activities with quality-of-life initiatives for individuals. Unfortunately, the more we try to address more cross-cutting and complex issues like LTSS or livable communities or consumer-directed health care, or determine the results of federal disability programs, the more we learn that there is little or no federal or state data available.

How did we get to this point?

Twentieth Century Policies

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. However, 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.

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. We also saw, for example, the passage of the Education of All Handicapped Children Act in 1975.

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. 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 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.

Twentieth Century Data

The nature of federal disability data developed during this period of time. For many of the programs, administrative data have been at the heart of an agency’s information base. This is no surprise, of course, since many of the disability programs in the 60s, 70s, 80s and 90s were designed to apportion resources, monies, and/or supports to local governments for eligible participants (e.g., SSI, SSDI, special education). But the growth in the numbers of such programs over the years has created a patchwork quilt of federal disability data and research. And in far too many instances, there is an inability to address cross-cutting issues (e.g., LTSS, delinquency prevention, livable communities) because of this history.

The simple fact is, other than the mandated administrative program data for key federal disability programs (e.g., Veteran’s Administration data requirements, SSA data requirements, OSERS data requirements), there are few if any Congressionally authorized and mandated disability data requirements..particularly of a longitudinal nature. For instance, even the Decennial Census (and the ACS in its stead) does not operate from a legislative mandate and fiscal appropriation to ensure an accurate enumeration of tens of millions of Americans with disabilities. As a result, the amount of space devoted to disability data items on the Census (and now the ACS) remains static.

This is so, despite the increasing amount of federal resources expended each years by our government for hundreds of federal disability programs and initiatives – i.e., in excess of $200 billion federal dollars per year.

Twenty-First Century Needs

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 and data 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 and data 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 federal research, statistics, and data - including survey data - by which to judge progress on national policy objectives, guide leadership's decision-making and funding efforts, and manage America’s resources in the face of changing demographics. 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; and for some, we just don ‘t have the data to make an informed judgment. Some have accurate and continuous data strategies to support their implementation; many still do not. Based on GAO's scrutiny of federal disability 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 implement new data strategies that will shape the future for millions of Americans with disabilities, their families, and their communities.

Thank you for listening.