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Toward Independence and the Vision of an ADA - Part 8

Analysis of Federal Programs, the Number of the People with Disabilities, and Thwarting the Suggestion that Jurisdiction Over All Federal Disability Matters Should Be Assigned to One Federal Agency

While work on other parts of the 1986 report continued, the information in the “priority listing” of the 45 largest federal programs providing assistance to persons with disabilities was analyzed and interpreted in light of other statistical information about people with disabilities and the Council’s examination of the operation of the programs. The results of such analysis led to general findings that were quite consistent with views Frank Bowe had expressed in his book Rehabilitating America, and recently documented by economist Dr. Monroe Berkowitz of Rutgers University in a major study of expenditures on disability programs.[1] Scrutiny of the data revealed several provocative facts. Two of those, which Lex referred to as the “one-third/one-third” findings, were that only about one-third of people with disabilities of working age in the U.S. were employed (a drastically low proportion); and that, despite popular misconceptions to the contrary, only one-third of people with a work disability of working age who were not working were on the federal dole. These results served to underscore the distressingly high non-employment rates of people with disabilities, and to dispel the widespread assumption that most non-working individuals with disabilities were receiving federal disability and income-support benefits. Other striking findings had to do with the size and nature of federal spending on disability. Toting up the outlays of all federal programs on disability services, programs, and benefits revealed that annual federal expenditures on disability amounted to a whopping 60 billion dollars – second only to defense among categories of federal spending. Of that figure, the Council’s compilation of federal programs disclosed that over 57 billion dollars were spent on public aid programs providing financial support for people with disabilities who were not self-supporting. Less than 3 billion federal dollars were being spent on education, rehabilitation, and other programs aimed at promoting opportunities, independence, and self-sufficiency for people with disabilities. All of these findings would need to be synthesized and incorporated in conclusions to be featured in the summary report.

Another part of the summary report on which work continued focused on statistical data about persons with disabilities in the United States. In the introductory sentence of the materials he had developed for the Council, Frank wrote: “Today there are 36 million Americans with disabilities.” He repeated that figure in a section he titled “Demographics.” From my work on Accommodating the Spectrum at the Civil Rights Commission and on the upcoming 1990 Census for the Council, I had developed considerable skepticism about estimates of the size of the population with disabilities. In Accommodating the Spectrum, I noted that there was no single repository of reliable data on the population with disabilities and that the available statistics are difficult to aggregate because of inconsistent methodologies and definitions.[2] I suggested that an “estimated range” of people with disabilities was about as good as one could do based on current statistical sources.[3] After joining the Council staff and getting assigned to work with other federal agencies, I learned even more about the limitations and deficiencies of statistics on disabilities. In my October 24 draft of the summary report, I included a section titled “The Population with Disabilities” that incorporated some statistical information from Frank’s materials, but I replaced his definitive endorsement of the 36 million figure with the following more measured and more accurate paragraph:

Various estimates place the number of Americans with disabilities between 20 million and 50 million persons, with a figure of 35 or 36 million being the most commonly quoted estimate. A precise and reliable overall figure is not currently available, due to differing definitions, divergent sources of data, and inconsistent survey methodologies, which together make it impossible to aggregate much of the statistical information that is available.

A particular challenge in reaching consensus in developing the topic papers and articulating recommendations had arisen from the view, discussed previously, of a small but vocal minority of the Council members that a paramount problem with federal programs serving people with disabilities is that they are too disjointedly scattered around the federal bureaucracy, and that the remedy would be to unify all programs and agencies relating to disability in a single super-agency, preferably at the cabinet level. The idea that a single entity should be responsible for emergency evacuation of people with disabilities, disability parking privileges and other access issues at federal buildings and parks, Social Security disability benefits, federal special education funding, public transportation accessibility standards, federal agency affirmative action for employment of workers with disabilities, enforcement of federal disability nondiscrimination requirements, independent living program supports, enforcement of accessible housing standards, HIV- and other disability-related research funding, airline and airport accessibility, television captioning services, accessibility of the internet, and numerous other federal activities and programs that affect individuals with disabilities, struck some of us, including me, as simplistic, unrealistic, and not thought through. While the notion of a single point of entry – a phone number or referral agency that people seeking federal services or programs might access to find out who to contact or where to go – might have gained some traction, the approach that these Council members were promoting was more fundamental and extreme. They believed that the crucial problem was that too many federal agencies were dealing with disability laws, programs, and services; and they wanted to correct this by amalgamating them all to provide a fully one-stop-shopping entity at the highest levels of the federal government.

Such an approach has a number of flaws. Extracting the disability-related functions from federal agencies would be a nightmare – probably an impossibility – organizationally, administratively, and politically. The disability super-agency would have to amass expertise, not only on disability, but on all the discrete, nearly infinite, areas of government activities, policies, and programs that have an impact on people with disabilities. And if the disability super-agency wanted to implement some change or innovation, say in housing, transportation, or emergency preparedness policy, the agency with jurisdiction over the particular subject matter (HUD, DOT, or FEMA) would still have to incorporate it into its sphere of authority and implement it (unless one imagines totally separate, i.e., segregated, systems of housing, transportation, education, parks, air transportation, government jobs, etc., just for individuals with disabilities operated under the authority of the super-agency – an approach that would not only be drastically undesirable from a disability policy perspective, but would be blatantly illegal and probably unconstitutional). And the attempt to remove all disability matters from the other federal agencies to unify them in a disability-dedicated entity would dramatically and disastrously reinforce a destructive premise that people with disabilities are so different from other people that all of their affairs should be handled separately by a special unit in the government.

In discussions with members of the Council, I tried to ward off, disparage, or redirect the single-agency-for-disability-matters idea, as diplomatically as I could. In private, I told Lex I thought it was a really bad idea. At another time, Lex had mentioned that a boy who had seen him coming out of an accessible bathroom, had, after Lex said hi, begun, shyly but with great curiosity, asking what it was like in that bathroom. It became clear to Lex that the boy considered the accessible bathroom to be a very mysterious, even scary, place. Lex went on to tell how he opened the door to the room and let the boy look around, after which the mystery was removed and the bathroom was no longer a big deal or source of unease to him, and he seemed more comfortable with Lex too. After telling the story, Lex had commented on the need to remove the sense of difference and mysteriousness from things related to disability. In my mind, the notion of putting all the disability programs in a separate agency would exaggerate and exacerbate the differentness between matters involving people with disabilities and those involving others. Lex seemed to agree that the disability super-agency idea was neither realistic nor wise. The question for him was how to deal with those Council members whose hearts and minds were adamant that it was the correct approach.

Seeking an independent perspective, Lex somehow got Dr. Helga Roth, a long-time authority on disability information services and federal disability programs who had headed up the Clearinghouse for the Handicapped in the Department of Education as well as the Handicapped Information Center in the National Institute on Disability and Rehabilitation Research, to agree to provide her analysis and thoughts on establishing a new high-level agency with jurisdiction over federal disability programs. Regarding a cabinet-level agency in which federal disability programs would be placed, she bluntly declared that “[t]he present structure of existing departments militates against such a concept.” She explained that “Federal Departments and agencies are mission and task oriented, not ‘population served’ oriented, e.g., education, housing, labor, transportation, environment, etc.,” because “this allows programs to be developed around the mission and development of ‘experts’ in these program areas.” She was more positive toward a lower-than-cabinet-level unit, an “Administration on Disabilities” in the Department of Health and Human Services, to play a coordinating role, similar to offices that currently played such a role in regard to what were called “vulnerable populations” such as children, youth, and families; elderly people; and native Americans.

One step toward redirecting the single-federal-disability-agency proposition had been accomplished when it was funneled into the Coordination topic paper. As the paper was being developed, I informed Council members about existing federal interagency entities, including an Interagency Coordinating Council (created by the same Rehabilitation Act amendments law that made the National Council independent) and the Interagency Committee on Handicapped Research, already charged with a coordinating function. The final Coordination paper would ultimately list nine federal interagency entities, plus the National Council itself, that addressed various aspects of coordination of disability programs and services. The Council members were also advised that an Administration on Disabilities had been proposed repeatedly over the years, but never established. The additional information did not, however, silence the voices on the Council of those who believed that the multiplicity of federal programs affecting people with disabilities was a travesty. They decided that the list of major programs the Council was developing did not drive home their point dramatically enough, so they called for a chart of all programs in the Executive Branch and the Congress that focused on some aspect of disability. The expectation was apparently that a graphic illustration of the multiplicity of such programs would incite a flood of indignation and generate a wave of calls for unification of the programs. There was no real opposition on the Council to the idea of a graphic representation of the information that had been compiled, and Lex agreed to the inclusion of such a chart in the report. The chart idea seemed to deflect the attention of the proponents of the cabinet-level-agency proposal away from pursuing the concept in the text and recommendations in the Coordination paper. Accordingly, the paper evolved into a less contentious, fairly straightforward piece in which the Council recognized that “coordination problems are creating major difficulties for persons with disabilities,” but noted that “[c]oordination is a complex issue that is not subject to simple approaches and solutions.” The topic paper then described coordinating efforts in the past and those that were currently in place, including the National Council itself, and then made a single recommendation, directed not at federal agencies themselves but at recipients of federal financial assistance – that Congress should require state and local agencies that receive federal grants to participate in the development of coordinated service delivery plans.

Continue on to Part 9: Pulling Together a Full Draft of the Report, Including a “Chart” of Federal Disability Programs

[1] Monroe Berkowitz, Disability Expenditures: 1970-1982 (Rutgers University, 1985).

[2] U.S. Comm'n on Civil Rights, Accommodating the Spectrum of Individual Abilities 10 (1983).

[3] Id. at 12.