National Council on the Handicapped
The history of NCD dates to 1972, when Congress proposed an Office for the Handicapped as part of the Rehabilitation Act. Its purpose would be to review the programs of the Rehabilitation Services Administration (RSA) and evaluate and coordinate all federal programs affecting persons with disabilities. But Congress eliminated the Office in the compromise with President Nixon. The idea resurfaced in May, 1977, when delegates from every state gathered at the White House Conference on Handicapped Individuals. The participants reviewed federal disability policy and offered legislative recommendations. Among their conclusions was that the incoherence and intrinsic tensions of various disability policies required an agency to bring it to order. The Carter administration afforded Congress to take action. Congress passed legislation creating the National Institute of Handicapped Research (NIHR, now NIDRR), the Title VII independent living program, and the “projects with industries” program to assist disabled persons starting their own businesses. Congress also used the shift in political climate to implement the White House Conference’s recommendation by passing legislation that created NCD.
In addition to directing NCD to establish policies for NIHR and advise the RSA Commissioner about RSA policies, Congress charged NCD to “review and evaluate on a continuing basis all [federal] policies, programs, and activities” concerning persons with disabilities, and to report on its activities.3 NCD would be composed of fifteen presidential appointees, each serving three-year terms and with five new members each year. NCD could hire up to seven technical and professional staff, conduct hearings, and appoint advisory committees. It was housed in the Department of Health, Education, and Welfare (HEW).
NCD’s activities prior to 1984 are not well documented.4 But the skeletal framework for the ADA was laid in 1983. After President Ronald Reagan entered office in 1981, he decided to disband the existing council and appoint all new members. On October 4, 1982, he selected Joe Dusenbury, previously the Commissioner of the South Carolina Vocational Rehabilitation Services and President of the National Rehabilitation Association, as NCD Chairperson. NCD apparently had a mixed record, and the Education Department urged Dusenbury to submit a credible annual report, on time, to help improve NCD’s reputation.5 To help direct NCD activities, Dusenbury appointed two Vice-chairpersons: Justin Dart and Sandra Parrino. Dart was the only NCD member Dusenbury knew before joining NCD; they had worked together on the President’s Committee on the Employment of the Handicapped. NCD members turned immediately to the task of the report, and decided that, in meeting NCD duties, they should prepare an ambitious proposal for disability policy.
They also decided that if the report were to have any legitimacy, it needed to be the product of a nationwide effort. Thus began Justin Dart’s famous public forums. Authorized by Dusenbury and using his own funds, Dart traveled to every single state to discuss disability policy and obtain feedback for NCD’s policy report. Dart, who had contracted polio in his teens, went in his wheelchair and with his trademark cowboy hat. On this campaign he met with over 2,000 people, including persons and parents of persons with disabilities, government officials, and disability professionals. Among the most frequently-cited problems were discrimination and the inadequacy of laws to protect the rights of persons with disabilities.6 This was by no means Dart’s introduction to civil rights issues. On the contrary, Dart had become an impassioned advocate for the civil rights of African Americans as a student at the University of Houston, where he argued that black students should be allowed to attend the all-white university. By the 1980s, Dart viewed disability rights in a broader context of human rights and as a logical and necessary extension of the civil rights guaranteed for African Americans.
Dart and Dusenbury took the feedback obtained at public forums to heart in designing the NCD report, in which the spirit and content of human rights, civil rights, and disability rights are pervasive. Persons throughout the nation reviewed the various iterations of the document, so the final product was truly national in origin. Issued in August, 1983, the National Policy on Disability built on the independent living philosophy: pursuit of “maximum independence, self-reliance, productivity, quality of life potential and equitable mainstream social participation.” While individuals must assume primary responsibility for their lives, the report said, the Federal Government had a critical role to play. This included 22 different policy areas in need of attention, ranging from accessibility issues, to employment, education, and research. Part of the government’s obligation, contended the report, was “to develop a comprehensive, internally unified body of disability-related law which guarantees and enforces equal rights and provides opportunities for individuals with disabilities,” including integrating persons with disabilities into all existing civil rights legislation. “In matters of fundamental human rights,” the report declared in vintage Dart form, “there must be no retreat."7
This was not the first call for a comprehensive body of civil rights law protecting persons with disabilities. State and local governments throughout the nation were passing a multitude of laws and constitutional amendments—some amending civil rights legislation, others creating new disability-specific provisions.8 Others in the disability community had talked about it.9 The NCD report, however, was a powerful declaration that also had the backing of a federal agency.*
Unfortunately for NCD, the Reagan administration did not take well to the document. In fact, Dusenbury had to fund the printing and distribution of the document with private funds because the administration would not support it. NCD did not circulate the document widely, distributing it primarily to state and national legislators, and little action was taken by legislatures. Dusenbury subsequently drew the ire of the Reagan administration when he refused to support its introduction of legislation to disband the vocational rehabilitation program. Later that year, the White House asked Dusenbury to step down from the Chairmanship, under the pretext of instituting a one-year term for the Chairperson.10 In his place, Vice-chair Parrino became the Chairperson.
Yet before Dusenbury stepped down (in spite of the Department of Education’s insistence that he have no direct contact with Congress), he and NCD Executive Director Harvey Hirshi lobbied Congress to make NCD an independent agency, so that it would not have its hands tied by the administration, particularly the Department of Education. Congress granted NCD its request in the 1984 amendments to the Rehabilitation Act, claiming that “the Council has not been able to meet congressional intent for an independent body to advise on all matters in the Government affecting handicapped individuals."11
NCD’s independence, however, also reflected Congress’s dissatisfaction with the agency’s operation. Some members of Congress had even advocated disbanding NCD. But others saw the potential for a centralized evaluation of a patchwork of disability programs as requested by the White House Conference on Handicapped Individuals.12 As a result, in addition to making NCD an independent agency, Congress issued a mandate that NCD produce a comprehensive analysis of federal disability programs and policy by February 1, 1986. It was “kind of a test” of NCD’s mettle, an ultimatum, and the future of NCD’s authorization hung in the balance.13 Congress demanded a “priority listing” of federal disability programs according to the number of individuals served and the costs of such programs. Congress also requested that NCD evaluate the degree to which federal disability programs “provide incentives or disincentives to the establishment of community-based services for handicapped individuals, promote the full integration of such individuals in the community, in schools, and in the workplace, and contribute to the independence and dignity of such individuals."14 Members of Congress wanted to know: was the Federal Government promoting dependence?
Congressman Steve Bartlett (R-TX) appeared before NCD on April 30, 1984, to explain the significance of the challenge that lay ahead. “You are to advise Congress in a whole new approach, a whole new concept,” he said, “on how to decrease dependence and increase independence.” This, he suggested, represented what the disability community knew and that Congress was only reluctantly recognizing: “Sometimes Federal laws or provisions in Federal laws are the worst enemy of independence."15 According to NCD’s minutes, Bartlett emphasized that “Congress is not looking for more programs, more maintenance grants, and larger appropriations.” Instead, NCD should “look for ways to convert existing maintenance dollars to help recipients achieve independence."16 Disability policy was therefore not only about improving the lives of persons with disabilities; curtailing dependence also helped minimize the federal cost of disability.17
By reviewing federal programs NCD might actually reduce government expenditures. Thus, while many were surprised by NCD’s subsequent actions, these goals for NCD substantially coincided with President Reagan’s philosophy. Although Republicans and the disability community might seem “strange bedfellows,” wrote Evan Kemp in a compelling Washington Post article, “their philosophical similarities are striking.” He explained: “Both have accused big government of stifling individual initiative. Both have advocated that only the truly needy should receive welfare and that others should be given the opportunity to work and to become self-reliant and responsible citizens.” As an example of excessive government, Kemp noted that Social Security benefits for people with disabilities had risen 400 percent in just seven years. If physically and mentally disabled persons became wholly or partially self sufficient, opined Kemp, there would be “more taxpayers and fewer tax users—the ultimate Reagan objective."18 Patricia Owens, Associate Commissioner for Disability in the Social Security Administration, reinforced this link at an appearance before NCD. “The Administration wants a program that encourages people to return to work,” reported NCD’s minutes.19 Motivations to improve the lives of persons with disabilities intertwined with attempts to reduce dependence on government and federal outlays. The subsequent work of NCD reflected this dual concern.
Although NCD now carried new independence, it remained substantively beholden to both the administration, which held the purse strings, and Congress, which controlled authorization and appropriations.20 Nevertheless, the establishment of NCD as an independent agency heralded a decisive shift. Congress now prioritized recommendations concerning the entire sweep of disability policy over such specific responsibilities as overseeing NIHR. And NCD’s new identity as an independent “think tank” gave increased stature to disability as a policy. “For the first time, disability as an issue is institutionalized, by statute, in the structure of the Federal Government,” said John Doyle, who left his post on the Senate Subcommittee on the Handicapped for six months to help NCD in its transition.21 The actions of the disability community were clearly gaining attention, and the themes of independence and community integration were working their way into national policy directives.
Chairperson Parrino accepted the heightened responsibilities for NCD eagerly and passionately.22 She was a longtime advocate for people with disabilities based on her experience in raising a child with a major physical disability. In Briarcliffe Manor, New York, Parrino had become a leading spokesperson for parents of persons with disabilities and helped obtain improved transportation and voting accessibility for disabled persons. Under her leadership, NCD met its statutory requirements by holding four quarterly meetings each year. These public meetings rotated around the country, and often met in conjunction with “consumer forums” designed to solicit the views of persons in the disability community. Although NCD attended to the requirements to monitor NIHR, RSA, and explored the ideas of its various members, it increasingly turned its attention to satisfying Congress’s mandate to prepare a report, which imposed heightened work demands. This required hiring new staff.
Parrino and Dart recruited Lex Frieden, who initially agreed to serve for two years as Executive Director. Frieden had founded the Independent Living Research Utilization Program, an independent living technical assistance program, in 1977, and had earned great respect within the independent living community. In the early 1980s, he worked closely with Dart on the Texas Governor’s Committee for the Employment of the Handicapped. And in 1984, coincidentally, he testified before Congress to promote a blue-ribbon panel to evaluate federal programs, which culminated in NCD’s mandate. Meeting that requirement was precisely the kind of task-directed job Frieden relished.
Frieden assumed NCD’s reins in December, 1984, and immediately turned to the task of finding high quality staff to support him. He hired Ethel Briggs, who had extensive experience in vocational rehabilitation, as Adult Services Specialist. Attorney Robert Burgdorf filled the Research Specialist position. Burgdorf had actually sought out the job when he heard of NCD’s new responsibilities. He had devoted much of his career to promoting disability rights, and saw this as an opportunity to continue his campaigns.23 Naomi Karp joined Frieden as Children’s Services Specialist (on detail from NIHR), and Brenda Bratton became Secretary. Having acquired independence, additional staff, and a $500,000 budget, NCD was now able to face its growing responsibilities with increased zeal.
*NCD members at the time were: Joe S. Dusenbury, Chairperson; Sandra Swift Parrino, Vice-chairperson; Justin Dart, Vice-chairperson; Latham Breunig, Robert V. Bush, John Erthein, Budd Gould, Hunt Hamill, Marian N. Koonce, Carmine R. Lavieri, Nanette Fabray MacDougall, Michael Marge, Roxanne S. Vierra, Henry Viscardi, and Alvis Kent Waldrep.
3. Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments of 1978, Public Law, 95-602, 95th Cong., 2nd sess., § 401(4).
4. Minutes of the National Council on the Handicapped date from 1984 onward. The only report available prior to 1984 is the 1983 report, National Policy for Persons with Disabilities.
5. Joe Dusenbury, interview, March 3, 1997.
6. Michael Marge, interview. December 27, 1997.
7. National Council on the Handicapped, National Policy for Persons with Disabilities (August 1983).
8. See, for example, U.S. Commission on Civil Rights, Civil Rights Issues of Handicapped Americans: Public Policy Implications (Washington, D.C.: [1980]), especially the state statutes printed as exhibits.
9. Robert Burgdorf, interview, February 19, 1997.
10. Dusenbury, interview.
11. U.S. Senate Committee on Labor and Human Resources, Senate Report No. 98-168, to accompany S. 1340, May 23, 1983, reprinted in 1984 USCCAN, p. 32.
12. Lex Frieden, interview, December 28, 1997.
13. Frieden, interview, December 27, 1997.
14. Rehabilitation Amendments of 1984, Public Law 98-221, 98th Cong., 2nd sess., § 142(b).
15. NCD Minutes, April 30–May 2, 1984, p. 6.
16. Ibid.
17. Frank Bowe made this argument in Rehabilitating America: Toward Independence for Disabled and Elderly People (New York: Harper & Row, Publishers, 1980).
18. Evan J. Kemp, Jr., “Stop ‘Caring for’ the Disabled,” The Washington Post, June 7, 1981.
19. NCD Minutes, August 12–14, 1985, pp. 2–4.
20. Frieden, interview, December 27, 1997.
21. NCD Minutes, April 30–May 2, 1984, p. 3.
22. Sandra Parrino was not available to participate in an interview for this project.
23. Burgdorf, for example, joined with Christopher G. Bell to author the comprehensive analysis of “reasonable accommodation” in disability rights policy for the U.S. Commission on Civil Rights, Accommodating the Spectrum of Individual Abilities.
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