National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax

Lex Frieden, Chairperson
July 26, 2004

This report is also available in alternative formats and on NCD’s award-winning Web site (http://www.ncd.gov/).

The views contained in the report do not necessarily represent those of the administration, as this and all NCD reports are not subject to the A-19 executive branch review process.

National Council on Disability Members and Staff

Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas

Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio

Staff
Ethel D. Briggs, Executive Director

Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ed.D., Senior Research Specialist
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Geraldine Drake Hawkins, Ph.D., Program Analyst
Joan M. Durocher, Attorney Advisor
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk

Dedication

This report is dedicated to Americans with disabilities and their families, who contribute to their communities and the nation.

The National Council on Disability would like to thank Professor Robert L. Burgdorf Jr. of the David A. Clarke School of Law at the University of the District of Columbia for his assistance in drafting this report.

NCD would also like to thank NCD Chairperson Lex Frieden and former Chairpersons Joe Dusenbury, Sandra Swift Parrino, and Marca Bristo for their input.

Contents

Introduction

Origins, Initial Configuration, and First Steps: The Dusenbury Era

Toward Independence: The Parrino Era and the ADA Proposal

Challenges in Achieving Independence: NCD Under Chairperson Bristo

The Current Council, Investing in Independence, Righting the ADA, and the 21st Century:
NCD Under Chairperson Frieden

NCD Reports

Conclusion

Appendix: Mission of the National Council on Disability

Introduction

Twenty years ago, a minuscule advisory body in the Department of Education (ED), known then as the National Council on the Handicapped, was elevated to the status of an independent federal agency. The legislation that made what is now called the National Council on Disability (NCD) independent also gave it an ambitious agenda that greatly exceeded its size and modest resources. Among other duties, it was charged with reviewing all federal laws and programs affecting people with disabilities and assessing the extent to which those laws and programs encouraged the establishment of community-based services; promoted full integration in the community, schools, and the workplace; and contributed to the independence and dignity of people with disabilities. NCD was then directed to use this assessment to recommend legislative proposals to increase incentives and eliminate disincentives in federal programs. Finally, NCD was to present this information in a report to the President and Congress. To complete this imposing task, NCD’s 15 part-time Council members and its small staff were given two years.

These responsibilities were in addition to other ongoing, statutorily mandated duties such as establishing general policies for and overseeing research activities sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR); reviewing and evaluating federal rehabilitation programs; and advising the President, Congress, the Commissioner of Rehabilitation, the appropriate Assistant Secretary of ED, and the Director of NIDRR on the development of programs carried out under the Rehabilitation Act. In periodic revisions to NCD’s statutory mission, Congress has not only continued most of the original duties assigned to NCD but has added more. In 1992, for example, NCD was asked to “review and evaluate on a continuing basis new and emerging disability policy issues affecting individuals with disabilities at the federal, state, and local levels, and in the private sector, including the need for and coordination of adult services, access to personal assistance services, school reform efforts and the impact of such efforts on individuals with disabilities, access to health care, and policies that operate as disincentives for the individuals to seek and retain employment.”

Out of a profound sense of the importance of its mission, unwavering optimism about the future of Americans with disabilities, and perhaps, at times, an underestimation of the massive tasks it undertook, NCD has never shied away from its designated duties. NCD believes that this determination has produced an impressive body of accomplishments. In some ways, NCD has been a “mouse that roared.” NCD is aware that during its 20 years it has been fortunate in having highly capable Council members, officers, and staff as well as the consistent support of Congress and the various administrations it has served.

The period since 1984 has been an important one in the evolution of the status and rights of people with disabilities in the United States. Although the 1970s have been characterized as a shift “from charity to rights,” when individuals with disabilities sought to establish through court cases and protest actions that they were entitled to basic civil and human rights, the past two decades have seen equal opportunity, independent living, integration, and full participation—values specifically adopted in NCD’s statutory purpose—emerge as the official objectives of the Federal Government’s laws, programs, and policies. Such progress has placed NCD front and center in offering recommendations for achieving these objectives and for identifying ways in which current efforts are falling short.

NCD’s key contribution has been to serve as a focal point within the Federal Government for issues affecting people with disabilities. NCD fields thousands of telephone calls, e-mail messages, and letters each year from concerned individuals and organizations, and its award-winning Web site (www.ncd.gov) receives more than 4 million hits annually. NCD disseminates important disability-related information through its monthly NCD Bulletin, special mailings, articles, special reports, annual reports, brochures, position papers, alerts to other disability organizations, the Internet, and ongoing interaction with the news media.

No report of manageable size could cover all of NCD’s activities and products. Accordingly, this report describes only the highlights and mentions some of the Council’s most significant activities, publications, and initiatives. In doing so, the report must omit many significant NCD efforts. Just to cite two examples, the report does not attempt to describe the early and ongoing work that NCD has done to review and evaluate federal rehabilitation programs and to oversee and establish general policies for the research activities of NIDRR.

NCD believes that it has made a small but significant contribution to the evolution of American policy concerning individuals with disabilities. This report commemorates the high points and ongoing efforts of its 20 years of work as an independent federal agency, with a sense that much has been accomplished but much more remains to be done.

National Council on Disability Members and Staff
During the Dusenbury Era

Members
Joe S. Dusenbury, Chairperson
Justin Dart Jr., Vice Chairperson
Sandra Swift Parrino, Vice Chairperson

H. Latham Breunig, Ph.D.
Robert V. Bush
John S. Erthein
R. Budd Gould
Hunt Hamill
Marian N. Koonce
Carmine Lavieri
Michael Marge, Ed.D.
Nanette Fabray MacDougall
Roxanne S. Vierra
Henry Viscardi Jr.
Alvis Kent Waldrep Jr.

Staff
Harvey C. Hirschi, Executive Director
John A. Doyle, Acting Executive Director
Marilynne Gisin, Executive Assistant

Origins, Initial Configuration, and First Steps: The Dusenbury Era

A. Conceptual Sources

The concept of NCD existed at least as far back as 1972, when Congress introduced legislation to extend and expand the Vocational Rehabilitation program. The new provisions established (1) an Office for the Handicapped in the Department of Health, Education, and Welfare (DHEW) to analyze program operations, develop long-range projections for providing comprehensive services, encourage coordinated and cooperative planning, and promote scientific research to “bring about the full integration of handicapped individuals into all aspects of society”; (2) a National Advisory Council on Rehabilitation of Handicapped Individuals within DHEW to review the operation and administration of rehabilitation programs and provide policy advice to the Secretary of DHEW and the Commissioner of Rehabilitation Services; and (3) a National Commission on Transportation and Housing for Handicapped Individuals to identify and eliminate barriers to thee mobility of individuals with disabilities and to develop proposals to promote adequate transportation and housing for such individuals. After President Nixon twice vetoed the legislation due to budgetary and programmatic concerns, Congress eliminated the proposed agencies as part of a legislative compromise with the President.

Similar ideas emerged from meetings of the White House Conference on Handicapped Individuals in May 1977, the first major opportunity for people with disabilities to have a voice in shaping policy for people with disabilities. Among the recommendations adopted by the delegates were partially overlapping calls for the appointment of (1) a presidential spokesperson on the handicapped, who would make recommendations to the President and speak with “a high degree of authority to government agencies and the public on issues related to handicapped persons”; (2) a special advisor to the President for affairs of the handicapped, who would communicate directly with the President and cabinet members, ensure interdepartmental cooperation and coordination, and influence recommendations and legislative proposals; and (3) a President’s Ombudsman Council, which would “establish a direct channel for all handicapped concerns to the highest office.” The proposal for presidential spokesperson expressly declared that “he or she should be independent of any existing agency or department.”

B. Creation of the Council Within DHEW

In the 1978 amendments to the Rehabilitation Act of 1973, Congress added a new title to the Act that established a National Council on the Handicapped within DHEW. The Council was made up of 15 presidential appointees and was charged with establishing general policies for, and reviewing the operation of, the newly created National Institute of Handicapped Research, later to be renamed the National Institute on Disability and Rehabilitation Research (NIDRR). The Council also advised DHEW and the Commissioner of Rehabilitation Services on rehabilitation policies and programs. In addition, the Council was assigned many of the broader duties that it would later retain as an independent federal agency. One of its responsibilities involved reviewing and evaluating the effectiveness of “all policies, programs, and activities” concerning individuals with disabilities conducted or assisted by federal departments and agencies. The Council was also charged with making recommendations to the Secretary of DHEW, the Commissioner of Rehabilitation Services, and NIDRR respecting ways to improve research and administration of services, and with facilitating the implementation of programs based upon research findings. As a specific work product, the Council was directed to submit an annual report to the President, Congress, and the Secretary of DHEW containing a statement of the current status of research concerning people with disabilities in the United States, a review of the activities of the Rehabilitation Services Administration and NIDRR, and such recommendations as the Council considered appropriate.

The first chairperson of the Council was Dr. Howard Rusk, a rehabilitation pioneer and founder of the Institute of Rehabilitation Medicine at New York University Medical Center. He was appointed by President Jimmy Carter on November 6, 1979. On May 1, 1980, President Carter appointed the remaining members: Elizabeth M. Boggs, Mary P. Chambers, Nelba R. Chavez, Jack G. Duncan, Nanette Fabray, Donald E. Galvin, Judith E. Heumann, John P. Hourihan, Thomas C. Joe, Odessa Komer, Edwin O. Opheim, J. David Webb, and Henry Williams. Primarily, staff was detailed from ED. When President Reagan took office in 1981, he replaced the existing Council with new members. On October 4, 1982, he selected as chairperson of the Council Joe Dusenbury, previously the commissioner of the South Carolina Vocational Rehabilitation Services and president of the National Rehabilitation Association.

C. Chairperson Dusenbury and the National Policy for Persons with Disabilities

After becoming chairperson, Joe Dusenbury appointed two vice chairpersons—Justin Dart and Sandra Swift Parrino—to help direct Council activities. The Council members turned immediately to the task of the annual report, and decided that they should develop 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 based on grassroots input. Accordingly, Justin Dart began conducting consumer forums around the country—the first of many such campaigns. Using his own funds, Dart traveled to every state to discuss disability policy and obtain feedback for the Council’s policy report. He met with more than 2,000 people, including people with disabilities and their parents, government officials, disability professionals, and other interested individuals. Among the most frequently cited problems forum participants described were discrimination and the inadequacy of laws to protect the rights of people with disabilities.

Dart and Dusenbury took the feedback from the public forums to heart in designing the NCD report, in which the spirit and content of human, civil, and disability rights are pervasive. People throughout the country reviewed various iterations of the document, ensuring that the final product was truly national in origin. Adopted by unanimous vote of the Council in August 1983, the National Policy for Persons with Disabilities built on the independent living philosophy: the pursuit of “maximum independence, self-reliance, productivity, quality of life potential and equitable mainstream social participation.” Although individuals must assume primary responsibility for their lives, the report said, the Federal Government had a critical role to play. The report identified 22 different policy areas in need of attention, including accessibility issues, employment, education, and research. Part of the government’s obligation, the report contended, 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.” As the report declared, “In matters of fundamental human rights, there must be no retreat.”

In a letter to the Council after receiving the National Policy, President Reagan declared:

The fact that so much care was taken to include the concerns of handicapped individuals across America makes this a valuable document. It will provide us with the guidance needed as we chart our course through the Decade of the Disabled and beyond. We must all work together to make sure that people with disabilities achieve the greatest possible access to our society, find maximum independence, and have the opportunity to develop and use their capabilities.

In addition to developing the National Policy, Chairperson Dusenbury, along with then-Executive Director Harvey Hirshi, advocated that the Council should be made an independent agency, so that it could exercise its judgment without bureaucratic interference and restraints. Congress granted this request in the 1984 amendments to the Rehabilitation Act, explaining 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.”

D. Perspectives of Chairperson Dusenbury

As I think back on my years on the Council, I give Ronald Reagan great credit for agreeing to appoint a group of unselfish and unwavering advocates for people with disabilities. I take full credit for choosing Justin Dart and Sandra Swift Parrino as vice chairpersons. Both were known for their persistence and supported the idea of a national policy on disability. We organized the Council into committees, and every member of the Council bought into the plan to involve the disabled community in the creation of a national policy statement. Justin Dart visited every state to get input. The Council put the statement together and took great pride in forwarding the statement to the White House. All members of Congress received copies.

Congress intended the Council to be independent, but some members of the administration wanted the Council to be an advisory body to ED, which at that time was itself in jeopardy. They refused to allow us much leeway, and it became apparent that the Council must become independent if it were to succeed in fulfilling the congressional mandate. Key members of the House and Senate from both political parties supported independence, and at our request they got the legislation passed.

The Council accomplished much during my time as chairperson, but I consider establishing the Council as an independent federal agency to be my greatest accomplishment.

National Council on Disability Members and Staff
During the Parrino Era

Members
Sandra Swift Parrino, Chairperson
Justin W. Dart Jr., Vice Chairperson
Hunt Hamill, Vice Chairperson
Kent Waldrep Jr., Vice Chairperson

Linda W. Allison
Ellis B. Bodron
H. Latham Breunig, Ph.D.
Larry Brown, Jr.
Robert V. Bush
Mary Ann Mobley Collins
Joe S. Dusenbury
John Erthein
Anthony H. Flack
R. Budd Gould
John A. Gannon
Theresa L. Gardner
Margaret C. Hager
Hunt Hamil
Marian N. Koonce
Carmine R. Lavieri
Leslie Lenkowsky, Ph.D.
John Leopold
Nanette Fabray MacDougall
Michael Marge, Ed.D.
Robert S. Muller
George H. Oberle, P.E.D.
Brenda Premo
Mary M. Raether
Shirley W. Ryan
Ann C. Seggerman
Harry J. Sutcliffe, D.D.
Joni Eareckson Tada
Roxanne S. Vierra
Henry Viscardi Jr.
Michael B. Unhjem
Helen W. Walsh
Phyllis Zlotnick

Staff
Andrew I. Batavia, Executive Director
Ethel D. Briggs, Executive Director
Lex Frieden, Executive Director
Paul G. Hearne, Executive Director
Harvey S. Hirschi, Executive Director

Frederick D. Bedell, Acting Executive Director
Betty Jo Berland, Research Specialist (on detail)
Edward P. Burke, Acting Executive Director
Christopher Button, Special Assistant (on detail)
Robert Burgdorf Jr., Research Specialist
Frances D. Curtis, Administrative Officer
John Doyle, Acting Executive Director
Andrea H. Farbman, Public Affairs Specialist
Marilynne Gisin, Executive Assistant
Billie Jean Hill, Program Specialist
Kathleen Roy Johnson, Children’s Specialist
Naomi Karp, Children’s Services Specialist (on detail)
Pat Laird, Staff Assistant
Fred Krause, Special Assistant to the Chairperson (on detail)
Janice Mack, Administrative Officer
Mark S. Quigley, Public Affairs Specialist
Katherine Seelman, Ph.D., Research Specialist
Harold W. Snider, Deputy Director
Norman Subotnik, Special Assistant (on detail)
B. E. Villanueva, Administrative Officer
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Deborah Shuck, Staff Assistant
Joyce Turner, Secretary
Lorraine Williams, Student Assistant

Toward Independence: The Parrino Era and the ADA Proposal

A. The Council as an Independent Federal Agency

The Council became an independent agency within the Federal Government on February 22, 1984. Although he had played a key role in bringing about the Council’s independence, Joe Dusenbury did not chair the agency in its new status. Before the Council realized its independence, President Reagan named one of the former vice chairpersons, Sandra Swift Parrino, to be the new chairperson.

In granting the Council independence, Congress recognized the potential for a centralized evaluation of a patchwork of disability programs as had been recommended by the White House Conference on Handicapped Individuals. Accordingly, the 1984 law that made the Council an independent agency also mandated that it produce a comprehensive analysis of federal disability programs and policy by February 1, 1986. To some extent, interested members of Congress viewed the 1986 report as a test of the Council’s mettle that would determine its future and continued funding. Chairperson Parrino felt that the Council’s reputation—indeed, its very existence—would depend largely on the reception the report received in the White House and on Capitol Hill.

Congress called for the report to present a “priority listing” of federal disability programs according to the number of individuals served and the programs’ costs. To determine whether the Federal Government was promoting dependence or independence for people with disabilities, Congress also directed the Council to assess the degree to which federal disability programs promote or discourage the establishment of community-based services for individuals with disabilities, their integration into the community, schools, and the workplace; and their independence and dignity.

Representative Steve Bartlett (R-TX) appeared before the Council 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, Bartlett suggested, represented what the disability community knew and what Congress was only reluctantly recognizing: “Sometimes federal laws or provisions in federal laws are the worst enemy of independence.” According to NCD’s minutes, Bartlett emphasized that “Congress is not looking for more programs, more maintenance grants, and larger appropriations.” Instead, the Council should “look for ways to convert existing maintenance dollars to help recipients achieve independence.” Patricia Owens, associate commissioner for disability in the Social Security Administration, reinforced this approach in an appearance before the Council, saying, “The administration wants a program that encourages people to return to work.” Disability policy therefore involved more than just improving the lives of persons with disabilities; curtailing dependence would also help minimize the federal cost of disability. By reviewing federal programs, the Council’s proposals might actually reduce government expenditures.

B. Initial Steps

The Council, although officially independent, remained part of the Federal Government, subject to the administration, which controlled its financial disbursements and supplied many of its administrative needs, and to Congress, which controlled both its statutory mission and its appropriations. The Council’s transformation to independent agency status, however, heralded a decisive shift. Congress had now prioritized recommendations concerning the entire sweep of disability policy over such particularized responsibilities as overseeing NIDRR. In addition, the Council’s new identity as an independent think tank gave disability issues enhanced stature as a major policy area. “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 with the Senate Subcommittee on the Handicapped for six months to help the Council in its transition. 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. The agency had truly become a “National Council” on disability. (Although it was not until 1988 that the agency’s name was changed from the National Council on the Handicapped to the National Council on Disability, this report uses the acronym NCD to describe the Council from its inception as an independent federal agency.)

Chairperson Parrino welcomed the heightened responsibilities for NCD. Under her leadership, the Council met quarterly to advance its ambitious statutory responsibilities. Shortly before the Council officially became independent, Parrino and Vice Chairperson Justin Dart Jr. recruited Lex Frieden, an independent-living leader who had founded the Independent Living Research Utilization Program, to serve as the Council’s executive director. 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 an adult services specialist. (Years later—beginning in April 1990—she would become NCD’s executive director.) Attorney Robert L. Burgdorf Jr. filled the research specialist position, and Naomi Karp, on detail from NIHR, joined the staff as children’s services specialist. Joyce Turner was hired as secretary; then, after a few months, Brenda Bratton assumed the job. Marilynne Gisin continued in her previous role as executive assistant. Having acquired independence, additional staff, and a $500,000 budget, NCD was now able to face its growing responsibilities with increased zeal.

NCD’s quarterly meetings were held around the country, often in conjunction with “consumer forums” designed to solicit the views of those in the disability community. Although NCD attended to the requirements to monitor NIDRR and RSA and considered various initiatives raised by its members, it increasingly turned its attention to preparing the 1986 report, which imposed heightened work demands.

C. The Toward Independence Report

At the quarterly NCD meeting on January 23, 1985, Chairperson Parrino declared that “the contribution of this Council and its continued existence will rest almost entirely on the content of our February 1986 Report to the President and how it is judged by the president and the Congress.” She urged NCD members to unite in a common purpose and pledge their support. In April, recognizing that preparation for NCD meetings and consumer forums dominated NCD’s time, Frieden convinced the Council to clear the table and focus almost exclusively on the report.

As a foundation for developing the report, NCD had made significant efforts to obtain grassroots input. As in 1982, Justin Dart personally financed another series of public forums, visiting every state to learn what issues were most important to people with disabilities. The Council sought additional information on the status and views of Americans with disabilities. At the time, no substantive national survey data on people with disabilities existed. Noting this gap, Council member Jeremiah Milbank suggested a national poll of people with disabilities. With the assent of the other NCD members, Milbank contacted the polling agency Louis Harris and Associates, which agreed to conduct the study. NCD staff and members, along with other experts in the disability community, contributed to the development of the questions and structure of the survey. The International Center for the Disabled (ICD), for which Milbank served as Chairman of the Board, provided most of the funding. Preliminary data and findings of the survey helped inform NCD’s 1986 report. The final, official version of the survey report, The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream, was published in March 1986.

“The purpose of the survey,” explained ICD Executive Director John Wingate, “was to obtain data on disabled people’s experiences and attitudes that would provide a clear information framework of NCD’s recommendations on public policy for disabled people.” The nationwide survey was based on 1,000 telephone interviews with a national sample of noninstitutionalized persons with disabilities aged 16 and older. Although other organizations had conducted surveys of people with disabilities, this was the first comprehensive national survey that solicited their own perceptions of their conditions, their obstacles, and their quality of life. It provided solid data documenting the extent of the problems faced by people with disabilities and unearthed fruitful directions for policy development.

The Harris poll report presented a series of significant, quantified findings about Americans with disabilities:

• 40 percent did not finish high school, compared with 15 percent in the nondisabled population.
• 50 percent reported annual household incomes less than $15,000, compared with 25 percent among the nondisabled population.
• 56 percent reported that disability prevented desired levels of social and community participation.
• 49 percent identified lack of transportation as a barrier to social and community participation.
• 67 percent aged 16 to 64 were not working; 66 percent of those not working said they would like to be employed.
• 95 percent advocated increased public and private efforts to educate, train, and employ people with disabilities.
• 74 percent supported implementing antidiscrimination laws affording disabled people the same protections as other minorities.

Such findings documented what were previously subjective assessments. The survey was a ringing endorsement of initiatives to help Americans with disabilities find work and live independent lives. The poll affixed numbers to real and pressing problems and provided a sound foundation for NCD’s recommendations.

In June, NCD members held working sessions to determine the focus of Council’s report. To make the scope of the report manageable, Frieden and Burgdorf presented Council members with a list of 41 potential topics and recommended that they choose 8 to 10 of them. Drawing on the issues addressed in the1983 National Policy for Persons with Disabilities as well as the input received at consumer forums, the Council pared down the list of potential topics to 10: equal opportunity laws, employment, disincentives to work under Social Security laws, prevention of disabilities, transportation, housing, community-based services for independent living, educating children with disabilities, personal assistant services, and coordination of disability services and programs. Council members noted that the first topic was consistently discussed at the consumer forums and declared it to be of “central importance.” However, to make the concept more palatable to a wider audience, including the Reagan administration, Burgdorf recast the issue as “equal opportunity laws” rather than as “civil rights.”

After the Council members chose the 10 topic areas, Frieden assigned staffers and a few consultants to develop detailed papers on each of the topics; these papers were to document problems and present draft recommendations for solutions to the President and Congress. The topic papers were then presented to the Council members for their feedback and revision. During 1985, NCD devoted its consumer forums to soliciting feedback about the various topic papers. In addition, Frieden regularly consulted with disability organizations from around the country. The extensive, nationwide outreach helped give the disability community a sense of ownership of NCD’s activities and its upcoming report. By the end of 1985, NCD had crafted more than 400 pages of policy analyses that it would ultimately publish as a detailed appendix to the 1986 report. Because of logistical problems posed by meeting only four times a year, much of the responsibility for designing the structure and overall form of the report fell to Frieden and Burgdorf, under the guidance of the Council’s officers.

In January 1986 Burgdorf, at Frieden’s direction, synthesized the topic papers into a short, readable report presenting 45 recommendations to the President and Congress. Following NCD’s statutory directive, the report included a “List of Federal Programs Affecting Persons with Disabilities in Order of Expenditure,” which was developed by NCD consultant Frank Bowe. One fact that the list brought to light was that the annual federal expenditure on disability benefits and programs was more than $60 billion, of which more than $57 billion was going to public aid programs. Such programs are premised on the dependency of the people who receive benefits, in that eligibility is based on their inability to engage in substantial gainful activity or their significantly low income. This finding provided an economic rationale for the report’s recommendations. In her cover letter transmitting the report to the President and congressional leaders, Chairperson Parrino indicated that, by following the Council’s recommendations, “current federal expenditures for disability can be significantly redirected from dependency-related approaches to programs that enhance independence and productivity of people with disabilities, thereby engendering future efficiencies in federal spending.”

Based on its assessment of federal laws and programs, NCD drew three general conclusions:

1. Approximately two-thirds of working-age people with disabilities do not receive Social Security or other public assistance income.
2. Federal disability programs overemphasize income support and underemphasize initiatives for equal opportunity, independence, prevention, and self-sufficiency.
3. Federal policy should emphasize programs that encourage and assist private-sector efforts to promote opportunities and independence for individuals with disabilities.

At the suggestion of Council member Jeremiah Milbank Jr., the report also featured a large fold-out chart portraying key federal programs serving people with disabilities and their corresponding legislative committees. The chart illustrated the pervasiveness and complexity of federal programs affecting people with disabilities. The core of the report addressed the 10 topic areas NCD had selected. Each section presented a brief overview of the problems being addressed and then laid out NCD’s recommendations, followed by a succinct rationale and explanation that represented a distillation of the more detailed explanation and commentary provided on each topic. The 45 recommendations represented the best current ideas on addressing problems in each topic area.

The report’s primary recommendation was for the advancement of equal opportunity laws for people with disabilities. Although Congress had previously enacted some narrow antidiscrimination laws protecting people with disabilities, the report noted that such laws paled in comparison to federal measures prohibiting race and gender discrimination. NCD therefore proposed that Congress “enact a comprehensive law requiring equal opportunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap.” The proposal also delineated what such a law should entail. NCD member Kent Waldrep even suggested a name for such a law—the Americans with Disabilities Act (ADA).

The report’s title, Toward Independence, echoed the subtitle of a book by disability rights advocate and NCD consultant Frank Bowe, Rehabilitating America: Toward Independence for Disabled and Elderly People. The title therefore not only reflected NCD’s statutory mandate to assess the extent to which federal programs “contribute to the independence and dignity” of individuals with disabilities but also signified NCD’s endorsement of the independent living philosophy that had emerged within the disability community. NCD viewed facilitating independence through equal participation as the overriding objective of its recommendations.

Ethel Briggs worked with the staff at the U.S. Government Printing Office (GPO) to ensure that Toward Independence and its large appendix would be printed in a timely fashion and would be included in GPO’s Catalog of U.S. Government Publications.

NCD officially presented Toward Independence, accompanied by letters of transmittal, to President Reagan, Vice President and President of the Senate George H. W. Bush, and Speaker of the House James C. Wright on February 1, 1986. NCD also scheduled a press release for January 28, 1986. On that day, however, media attention was focused on the explosion of the space shuttle Challenger. The Challenger tragedy also caused the cancellation of another scheduled Council function: a meeting with President Reagan to present the report in person. Consequently, Vice President Bush and White House adviser Boyden Gray met with Parrino, Dart, Milbank, and Frieden. The Vice President displayed considerable interest in NCD’s report. A scheduled 10-minute photo-op evolved into a substantive discussion that lasted nearly an hour. Mr. Bush recounted his personal experience with the disabilities of family members. He also showed himself to be familiar with the content of the report, talking about education and equal opportunity laws in detail. The meeting ended with the Vice President’s promise that he would pass the report along to President Reagan.

Although NCD’s planned press conference and meeting with President Reagan were canceled, the agency’s third public relations event went on as planned: a reception on Capitol Hill, where many members of Congress gathered to accept the report. Senator Lowell Weicker, Senator Paul Simon, Representative Steve Bartlett, and Representative Major Owens, among others, offered remarks. NCD ultimately distributed more than 20,000 copies of Toward Independence to legislators, government officials, disability advocates, and disability organizations. As NCD Executive Director Paul Hearne, Frieden’s successor, observed in 1988, NCD’s preparation of Toward Independence and instigation of the ICD Survey helped “put the Council on the map.”

Although the report was completed on time, Frieden had hired Frank Bowe to write another report in case the staff report was not completed by the deadline established by Congress.

D. From Toward Independence to On the Threshold and the Draft ADA

In fall 1986, Congress amended the statutory provisions governing NCD. It clarified NCD’s overall mission as follows: “The purpose of the National Council is to promote the full integration, independence, and productivity of handicapped individuals in the community, schools, the workplace and all other aspects of American life.” It also gave NCD a specific directive to issue by January 30, 1988, and annually thereafter, a report to the President and the Congress “on the progress that has been made in implementing the recommendations contained in ... Toward Independence.” Frieden assigned Dr. Andrea Farbman, NCD’s public affairs specialist, the lead responsibility for developing the 1988 report. The report, On the Threshold of Independence, was issued on January 29, 1988, beating the statutorily imposed deadline by one day.

On the Threshold examined the reception given to the Toward Independence report and summarized recent statistical data, including information derived from the 1986 Harris poll and a second such poll of employers. The report then reviewed the 10 topic areas addressed in Toward Independence and described accomplishments or significant developments in each area.

NCD found that about 80 percent of the 45 recommendations offered in Toward Independence had been either partially or fully accomplished. On the Threshold noted, however, that although “[m]any doors to independence have been opened, others remain closed or only partially opened.” Despite the apparent progress, a glaring exception was the Council’s primary recommendation to enact a comprehensive federal law prohibiting discrimination on the basis of disability. Congress had not responded at all to this recommendation.

After seeing no progress on the ADA recommendation for nearly a year, Council members became impatient. They concluded that the only way to overcome legislative inertia was for NCD to take the lead. At one point, Chairperson Parrino asked Burgdorf whether he could draft such a law for the Council; he responded that he would welcome the opportunity. The framework for such a law was already sketched out in some ways. In 1984, Burgdorf and Chris Bell had published a “statutory blueprint” for such a law in the American Bar Association’s Mental and Physical Disability Law Reporter. In Toward Independence, Burgdorf had expanded on the blueprint by specifying various elements that the law should include. Early in 1987, Burgdorf began drafting an ADA bill. In the ensuing months, NCD members reviewed draft after draft of the proposal. By August 1987, they had accepted an internal draft of the bill and began circulating it to various stakeholders and disability rights experts for their input, and, it was hoped, their support.

NCD’s initial plan was to hand over its ADA proposal to some supportive member or members of Congress who could then claim responsibility for having drafted the legislation. This approach bogged down, however, when legislators, unsure of the breadth of support for the ADA proposal, were reluctant to take the forefront. As the press deadline for the 1988 report neared, the Council decided to include the ADA draft in On the Threshold. Once it was featured prominently in the report, the text of the ADA legislative proposal attracted the attention of grassroots members of the disability community, who asked their organizations and their congressional representatives to take a position in favor of it.

For congressional sponsorship, Parrino turned first to Senator Weicker, who was one of the disability community’s greatest supporters in the Senate and with whom NCD had a longstanding relationship. Early in 1987, during a meeting with Parrino, Weicker had indicated a willingness to support disability rights legislation if NCD drafted a proposal. After On the Threshold of Independence came out, he agreed to sponsor the bill. For the ADA to succeed, Weicker emphasized that the bill would have to be introduced simultaneously in both houses of Congress. He recommended that NCD contact Representative Tony Coelho, a high-ranking member of the House leadership who had epilepsy and had encountered discrimination firsthand. Chairperson Parrino and Council member Roxanne Vierra met with Coelho, who agreed to sponsor the legislation in the House. After NCD made some revisions to the legislation at the suggestion of the members of Congress and of Washington disability groups, Weicker and Coelho introduced the Americans with Disabilities Act bills in April 1988.

In his April 28, 1988, introductory remarks, Senator Weicker called the legislation “historic,” and said that it “will establish a broad-scoped prohibition of discrimination and will describe specific methods by which such discrimination is to be eliminated.” He compared the conditions faced by people with disabilities to those faced by minorities in the 1960s. Congress had responded by enacting civil rights laws that prohibited discrimination because of race or national origin in access to public accommodations, use of transit, employment opportunities, services of state and local governments, and housing. “Yet, today,” Weicker noted, “it is not unlawful for these same establishments to exclude, mistreat, or otherwise discriminate against people because of their disabilities.” He contended that discrimination on the basis of disability was “just as intolerable as other types of discrimination that our civil rights laws forbid.” The following day, Representative Coelho joined Weicker by introducing an identical bill to the floor of the House of Representatives. Civil rights for persons with disabilities had entered the national legislative agenda.

E. NCD’s Role in Passage of the ADA

Although in many ways the ADA’s introduction in Congress amounted to passing the baton from NCD to congressional sponsors and the disability community, NCD’s role did not end there. At several stages, current and former NCD members and staff persons played significant roles in moving the legislation ahead. Although NCD could present legislative proposals and justify its recommendations by offering “technical information,” federal law at the time prevented employees of federal agencies from personally lobbying members of Congress. In lieu of formal lobbying, NCD members made presentations in their hometowns and in their professional circles. Chairperson Parrino met extensively with officials in the White House and helped pave the way for favorable action on the ADA by the Bush administration. She also presented important congressional testimony on several occasions.

The ADA was introduced too late in the 100th Congress to have any serious chance of passage. The most that could be hoped for was to have congressional hearings to focus attention on the discrimination encountered by people with disabilities and to highlight the need for legislation to address the problem. These hopes were fulfilled on September 27, 1988, when Chairperson Parrino testified at a joint congressional hearing. The senators and representatives present for the hearing congratulated Parrino and the Council for developing the ADA bill.

In November 1988, NCD issued Implications for Federal Policy of the 1986 Harris Survey of Americans with Disabilities. The report examined the Harris poll results in detail and made 31 policy recommendations based on the data collected in the poll. The report found that the responses documented the existence of discrimination in the job market and workplace, in educational opportunities, in access to public buildings and public bathrooms, in transportation, in insurance, and in social person-to-person contacts. NCD also noted that “[t]he survey found great support for legal protection against discrimination on the basis of disability,” with 75 percent of participants responding in favor of such protection. The report also found that 68 percent of Americans with disabilities were unaware of the limited civil rights protection that was then available to them. Such data buttressed NCD’s conviction that the ADA was needed; accordingly, NCD made a strong recommendation: “Congress should enact the Americans with Disabilities Act of 1988 to establish a strong and clear requirement of equal opportunity for individuals with disabilities, parallelling the civil rights protections afforded other minorities and women.”

When the 100th Congress expired without either house acting on the ADA legislation, various efforts were begun to prepare the legislation for enactment during the next Congress. One such initiative was Representative Major Owens’ Congressional Task Force on the Rights and Empowerment of Americans with Disabilities, which sought to gather evidence on the extent and nature of discrimination on the basis of disability. The chairperson of the Task Force was former NCD Vice Chairperson Justin Dart, its coordinator was former NCD Executive Director Lex Frieden, and Sandra Swift Parrino was a member.

Before reintroducing the ADA legislation in the 101st Congress, congressional supporters, in consultation with national disability consumer organizations, revised the proposal, adding specificity and some policy compromises. The revised ADA bills were introduced in the new Congress on May 9, 1989, with Senator Tom Harkin as the sponsor in the Senate and Representative Coelho as the sponsor in the House of Representatives. Eventually, both houses passed the legislation, and, after two joint conference committees to reconcile differences between the Senate and House, the House approved the final version of the bill on July 12, 1990, and the Senate followed suit on July 13, 1990.

When President Bush signed the ADA into law on July 26, 1990, Parrino and Dart were next to him on the dais. Many former and current members and staff of NCD were among the more than 3,000 spectators who gathered on the South Lawn of the White House for the signing ceremony. In his signing statement and remarks, the President described how as Vice President he had “personally accepted” the Toward Independence report, credited NCD for its role in developing the ADA, and specifically acknowledged both Dart and Parrino. He praised the ADA as an “historic new civil rights Act . . . the world?s first comprehensive declaration of equality for people with disabilities.”

F. International Advocacy

Chairperson Parrino and Executive Director Ethel D. Briggs represented the United States at many international meetings, including the Meeting of Experts in Finland and China. The Standards for Equalization of Opportunities for Persons with Disabilities were drafted at the meeting in Finland. NCD represented the United States at the United Nations Center for Social Development in Vienna several times. In 1990, 1991, and 1992, Parrino was a delegate at the Third Committee on Social Development at the United Nations. In 1991, the People’s Republic of China invited NCD to assist it in its efforts to help people with disabilities. As the request of the government of Czechoslovakia, NCD was invited to conduct the Eastern European Conference on Disabilities for participants from Czechoslovakia, Hungary, and Poland.

G. Perspectives of Chairperson Parrino

I was chairperson of NCD from 1983 to 1993, beginning with a minuscule budget, one staff member, and a one-room office in the basement of the Department of Education’s Switzer Building. The outstanding members of NCD took on the herculean task of meeting their obligations and fulfilling their federal mandate. Kent Waldrep served superbly as vice chairperson for my entire tenure, and I am deeply indebted to him for his insight, loyalty, and commitment. We all learned quickly how difficult it can be serving two masters, the President who appointed us and the Congress to whom we had to report to for our budget.

The Council was made up of a handful of disability activists appointed by the President and confirmed by the Senate. Every member who served during this time was either a person with a disability, the parent or spouse of a person with a disability, or a career professional in the field of disability; thus, all had firsthand experience with living with a disability in America.

With the help of Senator Lowell Weicker and others, NCD became an independent federal agency in 1984 under a new congressional mandate. This new status gave the Council the legitimacy and stature to define disability policy in America. Weicker staff member John Doyle was “loaned” to NCD for six months to get the Council up and running, and he did a superb job.

Despite a small budget and limited staff, NCD conducted public hearings and consumer forums across the country aimed at getting input from people with disabilities and effectively reviewing all federal laws and programs affecting persons with disabilities. Council member Justin Dart traveled across the country to discuss disability issues with consumers. The information gathered from these hearings and forums enabled Council members and Executive Director Lex Frieden to conclude that equal opportunity laws were urgently needed to protect the rights of people with disabilities and create a level playing field.

Another important achievement was the now famous Harris poll, the first-ever survey of people with disabilities. In 1986, Council member Jeremiah Milbank Jr. conceived the idea of the Harris poll and arranged independent financing for this groundbreaking survey. The Council brought in consumer advisors to work with Council members and staff on the survey.

In 1986, the Council presented to the President and Congress its landmark report Toward Independence, which recommended an equal opportunity law as a top priority. The legislation was then formulated by Council members and put into draft form by Robert Burgdorf Jr.

After receiving no feedback from Congress or the administration on the proposed antidiscrimination law, the Council began to develop a strategy to move its agenda forward. That agenda began with my visit to Senator Weicker in 1987 asking him to be the chief sponsor in the Senate of what was then called the Americans with Disabilities Act of 1986. Council member Roxanne Vierra and I paid a similar visit to Representative Tony Coelho and asked him to be the chief sponsor of the ADA in the House. The ADA legislation was dropped into the Senate and the House of Representatives in April 1988.

In 1988, the Council successfully influenced Congress to authorize and appropriate funds to create a nationwide Disability Prevention Program at the Centers for Disease Control. This effort was organized by Council member Michael Marge. This success led the agency to write the Disability Prevention Act of 1991 (the Silvio O. Conte Disabilities Act).

In addition to its mandated duties, NCD organized several important consumer advisory groups to work in the areas of civil rights, minorities, Native Americans, primary and secondary disability prevention, and personal attendant care.

I was honored to serve as chairperson of NCD under Presidents Reagan and Bush and privileged to work with the dedicated and gifted members of the Council, who are the unsung heroes of this celebration. This Council was the driving force behind the creation and passage of the ADA. On July 26, 1990, I was present on the podium at the White House ceremony when President Bush signed the ADA into law. I represented the Council members and staff who had worked so diligently on behalf of all Americans with disabilities.

Members
Marca Bristo, Chairperson
John A. Gannon, Vice Chairperson
Hughey Walker, Vice Chairperson
Kate P. Wolters, Vice Chairperson

Yerker Andersson, Ph.D.
Dave N. Brown
Larry Brown Jr.
Edward Correia
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O’Day. Ph.D.
Lilliam Rangel-Diaz
Debra L. Robinson
Shirley W. Ryan
Gerald S. Segal
Michael B. Unhjem
Rae Unzicker
Ela Yazzie-King

Staff
Ethel D. Briggs, Executive Director

Speed Davis, Executive Assistant to the Chairperson
Andrew J. Imparato, General Counsel and Director of Policy
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ph.D., Senior Research Specialist
Allan W. Holland, Chief Financial Officer
Kathleen A. Blank, Program Specialist
Julie Carroll, Attorney Advisor
Geraldine Drake Hawkins, Ph.D., Program Analyst
Joan M. Durocher, Attorney Advisor
Lois T. Keck, Ph.D., Research Specialist
Billie Jean Keith, Program Specialist
Ramona Lessen, Executive Assistant
Janice Mack, Administrative Officer
Jamal Mazrui, Program Specialist
Moira Shea, Senior Legislative and Economic Advisor (on detail)
Pam O’Leary, Sign Language Interpreter
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk

Challenges in Achieving Independence: NCD Under Chairperson Bristo

In May 1994, President Clinton named Marca Bristo—the founder of Access Living, Illinois’ first independent living center—chairperson of NCD. NCD was entering its second decade as an independent federal agency. Its agenda in the previous decade had centered primarily on the policy proposals presented in the National Policy for Persons with Disabilities and Toward Independence. The first years of the 1990s were largely dominated by the enactment of the ADA and its various sections, the issuance of regulations to implement it, and early enforcement efforts. The early 1990s also produced an ADA backlash similar to that during the initial implementation of the Civil Rights Act in the 1960s. The principal expression of this backlash was found in the charge of some opponents that the ADA constituted an unfunded mandate. This, of course, revealed a fundamental misunderstanding of the ADA’s nature. The ADA is, at its core, civil rights legislation grounded in the freedoms guaranteed in the Bill of Rights. As such, the rights and freedoms codified in the ADA should not be subject to a debate on their cost any more than the rights of women, minorities, or religious groups would be. This fact was recognized in 1994 in the Senate debate regarding unfunded mandates.

NCD took the lead in countering this backlash by organizing a group of disability leaders and political appointees with disabilities. Part of the strategy included a media response team to share negative media portrayals and respond to each story. NCD also determined that it would visit every state, the District of Columbia, and the U.S. Virgin Islands to hear directly from consumers and those involved in ADA implementation about the degree to which the law has affected their quality of life. Through this serious and substantial outreach effort, the NCD hoped to determine whether, and how much, the ADA had changed the nature of American culture. Has a society in which people with disabilities historically did not have equal opportunities, were excluded, and were kept in dependency become a society in which people with disabilities have equal opportunities, are included, and are empowered both socially and economically? NCD also attempted to understand the nature of complaints lodged by critics of the ADA within the context of the actual life experiences of people with disabilities covered under the Act.

NCD’s 1995 report Voices of Freedom: America Speaks Out on the ADA concluded that the ADA was beginning to create positive and, at times, dramatic changes in the lives of people with disabilities. The backlash began to subside, and under Chairperson Bristo’s leadership, NCD undertook a number of ambitious initiatives.

A. The National Summit on Disability Policy

A priority of the new Council was a comprehensive reassessment of disability policy based on the input and perspectives of leaders in the disability community. Accordingly, NCD decided to host the National Summit on Disability Policy. The summit, attended by 300 disability leaders from every state and the District of Columbia, took place from April 27 to April 29, 1996, in Dallas. People with a variety of disabilities and their families attended. About 20 percent of the participants were members of culturally diverse populations, including Native Americans, African Americans, Asian Americans, and Hispanic Americans. Participants represented disability organizations, service-providing organizations, academia, and federal, state, and local governments. Federal officials provided technical assistance and background information. The summit placed special emphasis on youth with disabilities; 20 people aged 13–22 participated fully, providing a glimpse of tomorrow’s leadership and invigorating the dialogue. Attendees assessed the status of disability policy and ADA enforcement in 1996.

Led by volunteer facilitators chosen from among the participants, summit participants met in policy working groups for three days. They were asked to address 11 policy areas chosen by NCD and a Summit Advisory Committee after a review of the topics addressed in Toward Independence and the priorities reported by the President’s Committee on Employment of People with Disabilities in Operation People First. The groups brainstormed their policy areas, assessing the current state of affairs and debating how future policy could best promote the goal of independence.

The summit was an example of democracy in action. Reminiscent in some ways of the 1977 White House Conference on Handicapped Individuals, the summit offered knowledgeable people from around the country the opportunity to provide direct input into the federal policy-making process. The attendees proved themselves effective and thoughtful analysts and contributors. The recommendations generated by the working groups were supplemented by suggestions from disability leaders who could not attend the summit and were reviewed and fine-tuned by NCD. The result was more than 120 recommendations in the 11 designated areas of disability policy.

B. The Achieving Independence Report

Out of the results of the National Summit on Disability Policy, NCD developed the report Achieving Independence: The Challenge for the 21st Century. The report assessed the nation’s progress in achieving equal opportunity and empowerment between 1986 and1996 and presented recommendations that set an agenda for the next decade.

Based on the summit, NCD drew three broad conclusions about the state of disability policy in America:

1. Disability policy has made steady progress over the decade in empowering people with disabilities; however, this progress is threatened, compromised, and often undermined by a lack of understanding and support in the Congress and among particular segments of society.
2. Most public policy affecting people with disabilities does not yet promote the goals of ADA—equality of opportunity, full participation, independent living, and economic self-sufficiency.
3. Most Americans with disabilities remain outside the economic and social mainstream of American life.

In response to the shortcomings of current disability policy, NCD identified the following overarching themes that underpin the specific recommendations presented in the report:

1. Existing laws should be more vigorously enforced.
2. People with disabilities should direct policy and decision-making when they are affected by the outcome.
3. Outreach and awareness campaigns must be launched to educate the public about the human and societal benefits of achieving independence for people with disabilities and the important role that civil rights and community-based supports play in promoting independence.
4. Incentives for the inclusion of people with disabilities in all aspects of society must be further developed and implemented.
5. Principles of universal design should be universally applied.
6. Systems, services, and supports for people with disabilities must be further developed as a part of the mainstream of community life.
7. Accurate data about people with disabilities should be regularly collected, analyzed, and reported.

After presenting disability demographics and discussing some basic concepts of independent living, disability rights, and disability culture, the body of the report presented an assessed disability policy in 11 areas: policy coordination, civil rights, education, employment, Social Security and other income maintenance, health insurance and health care, long-term services in the community, technology, housing, transportation, and international issues. In each of these areas, the report presented specific recommendations. Summit participants also had the opportunity to organize additional groups to discuss emerging issues or issues not sufficiently included in the 11 policy areas. The discussions of nine of these groups were summarized in an appendix to the report: multiple chemical sensitivities, complementary medicine, Native Americans, crossover between health care and long-term services, targeted versus integrated managed care, research, disability culture, physician-assisted suicide, and genetics issues.

In discussing future challenges, Achieving Independence sounded an optimistic note:

Advances in policy, science and technology are available to support independence as never before. The challenge of achieving independence is a challenge of mustering the political will to move forward. Progress requires a dedicated commitment from all sectors of society—policy makers, people with disabilities and their allies, state and local government officials, nonprofit organizations, the private sector and the media. The achievement of independence for people with disabilities is a test of the very tenets of our democracy. It is a test we can pass.

C. The Disability Civil Rights Monitoring Project

One of the primary themes to emerge from the National Summit on Disability Policy was the need for stronger and more consistent enforcement of federal civil rights laws for people with disabilities. In fact, the overarching recommendation from the summit was that existing civil rights laws should be more vigorously enforced. The participants recommended that NCD should

• work with the responsible federal agencies to develop strategies for greater enforcement of existing disability civil rights laws “consistent with the philosophy of” the ADA; and
• continue working “toward elimination of contradictory laws, regulations and programs [and] promote coordination and commonality of goals across agencies.”

In response to these recommendations, NCD launched a policy initiative in 1997 called the Disability Civil Rights Monitoring Project. In carrying out this monitoring effort, NCD undertook in-depth studies of federal enforcement of disability civil rights laws in the areas of education, equal opportunity, ADA, employment, public accommodations, housing, air travel, and Internet technology.

NCD initially focused on the Federal Government’s compliance, enforcement, and public information efforts regarding the ADA, Part B of the Individuals with Disabilities Education Act (IDEA), the Air Carrier Access Act of 1986 (ACAA), Section 504 of the Rehabilitation Act, and the Fair Housing Act as amended by the Fair Housing Amendments Act of 1988. NCD selected the Disability Rights Education and Defense Fund to conduct an assessment and to develop a draft report on federal enforcement of the ADA, Part B of IDEA, and the ACAA. For the Fair Housing Act, NCD contracted with the National Fair Housing Alliance and the Bazelon Center for Mental Health Law. Based on the material developed by these contractors, NCD produced reports that came to be referred to collectively as the Unequal Protection Under Law series.

On March 18, 1999, NCD produced its first report in the series, Enforcing the Civil Rights of Air Travelers with Disabilities: Recommendations for the Department of Transportation and Congress. The ACAA prohibits discrimination against people with disabilities in the provision of air transportation services and is enforced by the U.S. Department of Transportation (DOT). It applies to most domestic U.S. carriers and airports as well as the contractors they employ who serve the public. Overall, NCD found that “although things have improved since ACAA was passed in 1986, people with disabilities continue to encounter frequent, significant violations of the statute and regulations. When they complain, they encounter an enforcement effort that is both inconsistent and limited in scope.” The report identified deficits both in the statute itself and in DOT’s enforcement activities. It was sharply critical of DOT’s performance, declaring that “ACAA implementation and enforcement efforts over the past 12 years have been so lacking in several essential areas as to constitute nonenforcement.” It identified “an extreme lack of resources” as having undermined “DOT’s capacity to develop and maintain a credible enforcement program or to adequately support ACAA implementation.” The report declared flatly that “DOT’s budget and staff for ACAA enforcement are drastically inadequate.”

To correct the deficiencies it had identified, NCD made 30 recommendations. In addition to better funding and increased involvement of people with disabilities in DOT’s policy-making and rule-making processes, the report offered specific recommendations for structural, administrative, policy, and regulatory improvements in ACAA enforcement activities. The report also concluded that, in part because DOT’s regulation and enforcement mechanism was so weak, an effective private right of action for violations of the ACAA was especially important: “If ACAA’s nondiscrimination mandate is to be realized, the disability community will have to use private right of action to create effective incentives.” Accordingly, NCD recommended that Congress should amend the ACAA to

• establish a statutory private right of action and permit the award of attorney’s fees and compensatory and punitive damages to successful plaintiffs;
• authorize the Access Board, in consultation with the Federal Aviation Administration (FAA), to develop standards for accessible cabin interiors and for any equipment related to air travel access, including boarding assistance equipment;
• expand DOT’s authority to conduct public education activities geared to consumers with disabilities and the general public, conduct regular ACAA compliance monitoring with the airlines, levy fines when an individual informal complaint investigation indicates that a violation has occurred, and to impose civil penalties for findings of pattern and practice violations; and
• include foreign air carriers operating in the U.S. travel market and using U.S. airport facilities within the scope of the law and its implementing regulation.

The second report growing out of the Disability Civil Rights Monitoring Project, Back to School on Civil Rights, was issued on January 25, 2000, and addressed enforcement of IDEA. Overall, NCD found that “federal efforts to enforce the law over several administrations have been inconsistent, ineffective, and lacking any real teeth.” It found that states had failed to ensure compliance with the core civil rights requirements of IDEA at the local level and that children with disabilities and their families were far too often required to file complaints to ensure compliance with the law. It took the Federal Government to task for “fail[ing] to take effective action to enforce the civil rights protections of IDEA when federal officials determine that states have failed to ensure compliance with the law.” Also, despite recent improvements, ED’s “formal enforcement of IDEA has been very limited.”

After reviewing ED’s monitoring reports of states between 1994 and 1998, NCD found that

• Every state was out of compliance with IDEA requirements to some degree; in the sampling of states studied, noncompliance persisted over many years.
• Notwithstanding federal monitoring reports documenting widespread noncompliance, enforcement of the law is the burden of parents who too often must invoke formal complaint procedures and due process hearings, including expensive and time-consuming litigation, to obtain the appropriate services and supports to which their children are entitled under the law. Many parents with limited resources are unable to challenge violations successfully when they occur. Even parents with significant resources are hard-pressed to prevail over state education agencies (SEA) and local education agencies (LEA) when they or their publicly financed attorneys choose to be recalcitrant.
• The Department of Education has made very limited use of its authority to impose enforcement sanctions such as withholding of funds or making referrals to the Department of Justice, despite persistent failures to ensure compliance in many states.
• ED has not made known to the states and the public any objective criteria for using enforcement sanctions, so that the relationship between findings of noncompliance by federal monitors and a decision to apply sanctions is not clear.

Back to School on Civil Rights presented an array of recommendations to the President and Congress to advance a more aggressive, credible, and meaningful federal approach to enforcing IDEA. Key among these recommendations was that Congress should amend IDEA to create a complaint-handling process administered by the Department of Justice (DOJ) to address systemic violations; provide DOJ with independent authority to investigate and litigate IDEA cases; and require ED and DOJ to consult with students with disabilities, their parents, and other stakeholders to develop objective criteria for defining “substantial noncompliance,” the point at which a state that fails to ensure compliance with IDEA’s requirements is referred to DOJ for legal action. The report also recommended that ED

• establish and use national compliance standards and objective measures for assessing state progress toward better performance outcomes for children with disabilities and for achieving full compliance with IDEA, and
• develop a range of enforcement sanctions to be triggered by specific indicators and measures indicating a state’s failure to ensure compliance.

The report also proposed that an amount equal to 10 percent of any increase in funding under Part B of IDEA should be allocated to DOJ and ED to enhance enforcement, complaint handling, and technical assistance infrastructure.

The third report generated by the Disability Civil Rights Monitoring Project, Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act, was released on June 27, 2000. This report addressed federal compliance, enforcement, technical assistance, and public information activities for Titles I through IV of the Americans with Disabilities Act. It examined DOJ’s ADA enforcement activities, the Equal Employment Opportunity Commission (EEOC), DOT, and the Federal Communications Commission. For each agency, the report reviewed

• complaint processing methodologies and their outcomes,
• proactive compliance activities,
• regulatory and policy development activities,
• litigation activities and the focus and impact of litigation choices,
• administrative organization for enforcement,
• staff training for ADA enforcement,
• technical assistance activities and public information aimed at covered entities and at people with disabilities, and
• leadership in addressing key issues of ADA interpretation and enforcement as new issues surface and in response to the interests and needs of the disability community.

The report also discussed the ADA technical assistance activities of three additional agencies: the Architectural and Transportation Barriers Compliance Board (Access Board), NIDRR, and the President’s Committee on the Employment of People with Disabilities.

NCD found that although the Executive Branch had consistently asserted strong support for the civil rights of people with disabilities, the federal agencies charged with enforcement and policy development under the ADA had been overly cautious, reactive, and lacking any coherent and unifying national strategy. The report observed that enforcement efforts took a case-by-case approach rather than an approach based on compliance monitoring and a cohesive, proactive enforcement strategy. In addition, enforcement agencies had not consistently taken leadership roles in clarifying frontier or emergent issues—issues that, even after nearly 10 years of enforcement experience, continue to be controversial, complex, unexpected, and challenging. NCD attributed some of the leadership and enforcement deficiencies noted in the report to the bureaucratic culture of particular agencies, which have hewed to their traditional mission and circumspectly defined their constituency. In some circumstances, the agencies feared taking positions on new or controversial issues or were too concerned about the potential backlash of a strong position. In sum, NCD took the agencies to task for providing “halting, reactive leadership.”

A critical finding of the report was that many of the shortcomings in federal enforcement of the ADA were inexorably tied to chronic underfunding and understaffing of the responsible agencies. These factors, combined with undue caution and a lack of coherent strategy, undermined enforcement of the ADA in its first decade. As a result, in some areas the destructive effects of discrimination continued without sufficient challenge, and the weak enforcement environment contributed to problematic federal court decisions unjustly narrowing the scope of the ADA’s protections. The body of the report detailed the deficiencies of each agency’s enforcement processes and activities. In all, the report presented 69 formal findings regarding ADA enforcement and made 104 recommendations for improving ADA enforcement.

Among the overarching recommendations in Promises to Keep were the following:

• DOJ should provide robust and assertive leadership for ADA implementation and develop a strategic vision and plan for ADA enforcement across the Federal Government.
• DOJ, DOT, EEOC, and the Title II referral agencies should strengthen methods for the timely and effective enforcement of the ADA.
• Federal enforcement agencies should engage in more outreach, training, and collaboration with the disability community.
• DOJ, EEOC, and the other federal agencies charged with ADA enforcement should promote proactive messages for media coverage of the ADA.

In August 1994, NCD members and staff began meeting with representatives of the disability community and officials of Microsoft Corporation to discuss access to Windows-based software for people with disabilities, especially people with severe visual impairments.

As a result of that meeting, in 1995 NCD established Tech Watch, a community-based, cross-disability consumer task force on technology. The 11-member task force, under the leadership of NCD member Bonnie O’Day, advised NCD on issues relating to emerging technology legislation and helped monitor compliance with civil rights legislation, such as Section 508 of the Rehabilitation Act of 1973, as amended.

With the advice of Tech Watch, NCD issued The Accessible Future, the fourth report generated by the Disability Civil Rights Monitoring Project, on June 21, 2001. The report addressed the status of federal enforcement of key laws—the ADA, Section 255 of the Telecommunications Act of 1996, and Section 508 of the Rehabilitation Act, as amended—and how such enforcement relates to electronic and information technology (E&IT), particularly the Internet, the World Wide Web, and select information/transaction machines. NCD observed that access to such information and technology developments is “a double-edged sword that can release opportunities or sever essential connections” for people with disabilities.

An overriding principle recognized in the report was that access to electronic and information technology is a civil right. Measuring federal implementation against this standard, NCD concluded from documentary and empirical research that individual leadership and commitment on the part of federal agency officials and staff was the primary reason for their relative success, particularly internally, in implementing pro-accessibility measures. The report documented various steps agencies have taken to enhance E&IT accessibility that are worthy of emulation. Among the major findings of the report were the following:

• The adverse and predictable results of E&IT inaccessibility on the lives of people with disabilities constitute discrimination, albeit unintentional, where technology that could substantially reduce the disparity exists but is not used.
• Existing civil rights laws appropriately take costs into account in determining whether particular E&IT-oriented accommodations or accessibility strategies are too costly. But they do so in ways that accentuate the size and visibility of such costs while concealing the costs of access denial.
• The current legal framework for E&IT accessibility is actually a patchwork of laws covering certain categories of technology in some settings, other categories in other settings, but nowhere reflecting an overview or comprehensive assessment of either the issues or the solutions.
• Without partnership with government and consumers, the marketplace is not well suited to redressing the E&IT access gap on its own. Normal competitive pressures do not operate to encourage fully accessible design of mainstream E&IT products, although the latent demand for such devices is considerable.
• Changes in technology and in the interpretation of all civil rights laws emanating from the courts will require the rethinking of both our definition of E&IT and our approach to advocacy on behalf of its heightened accessibility.

The report presented an assortment of concrete recommendations calculated to help “to make the electronic bridge to the 21st century available to all Americans.”

The release of The Accessible Future was highly publicized and generated numerous articles and editorials about electronic and information technology access for people with disabilities. The report has proven to be highly influential. It is one of the most frequently downloaded reports on the NCD Web site. The report was translated into Spanish by the Spanish government.

Both before and after the report’s release, NCD worked in various concrete ways to get the Federal Government, private industry, and consumers to join forces to increase access to E&IT for people with disabilities. In addition to meeting with Microsoft, for example, NCD staff met with staff at the Congressional Office of Compliance to help ensure that full coverage of the ADA and the Rehabilitation Act is extended to all instrumentalities of Congress, including the Government Printing Office, General Accounting Office, Library of Congress, and other congressional offices. NCD recommended that all congressional offices and instrumentalities comply with Section 508 of the Rehabilitation Act of 1973, which requires accessibility of the Federal Government’s electronic and information technology. Subsequently, the Congressional Office of Compliance voted to approve a motion that all Web sites maintained by instrumentalities of Congress must comply with Section 508. Accordingly, the Government Printing Office, using information provided by NCD, began revising 30,000 archived Web pages to comply with Section 508 accessibility standards.

Even before the release of The Accessible Future, NCD had addressed the role of technology and initiatives for making technological systems and tools accessible to people with disabilities in such reports as Access to the Information Superhighway and Emerging Information Technologies by People with Disabilities (1996), Guidance from the Graphical User Interface (GUI) Experience: What GUI Teaches About Technology Access (1996), Access to Multimedia Technology by People with Sensory Disabilities (1998), and Federal Policy Barriers to Assistive Technology (2000). In May 1997, following NCD’s recommendations to improve accessibility of graphical user interface systems (such as systems using icons and a mouse), Microsoft Corporation released a long-awaited technology called Active Accessibility, which standardized the way Windows applications communicate with adaptive equipment such as the screen reader programs used by blind people. This new technology was a response to the crisis people with disabilities, particularly visual disabilities, were facing because of the rapid deployment of graphical user interfaces. NCD encouraged Microsoft to incorporate accessible technology into its future Windows operating systems and other related applications. In the fall of 1997, IBM and Sun Microsystems made public commitments to make Java-based applications accessible to people with disabilities. NCD encouraged technology vendors to incorporate accessibility into the design stage of their products.

At the formal event marking the release of The Accessible Future in 2001, representatives of Microsoft, Hewlett Packard, Compaq, Motorola, and Cingular Wireless endorsed the goal of making their technology accessible to people with disabilities. Each company described concrete examples of the progress made in improving the accessibility of its products and services. These examples included, most notably, Microsoft’s release of Windows 2000, which included an accessibility wizard that allowed users to customize the operating system to meet their needs, and Office XP, which featured basic speech recognition capabilities.

On November 6, 2001, NCD issued the fifth report resulting from the Disability Civil Rights Monitoring Project, Reconstructing Fair Housing. It examined the U.S. Department of Housing and Urban Development’s (HUD’s) efforts to enforce provisions of the Fair Housing Amendments Act of 1988 (FHAA) and Section 504 of the Rehabilitation Act that prohibit discrimination on the basis of disability. Overall, NCD’s findings revealed that HUD’s enforcement efforts had been underfunded and understaffed and lacked a consistent strategy and direction.

The study disclosed that in the late 1990s HUD had lost control of its own enforcement process, with investigations taking nearly five times as long as Congress mandated and with scarcely 100 cases per year concluding with findings of discrimination. NCD observed that enforcement of civil rights laws had been hampered by the failure of Congress and HUD to provide the level of resources that effective enforcement requires. Inconsistent and inadequate funding has caused various problems for HUD, particularly in staffing and special enforcement initiatives. In NCD’s view, however, a larger problem was HUD’s failure to provide consistent national leadership and management of the fair housing enforcement process. As a result, NCD found, “the promises of the fair housing laws have been empty for many Americans, with and without disabilities.”

The report presented 102 detailed findings and made 86 recommendations for improvement of HUD’s administrative enforcement and compliance activities. The report broadly summarized the recommendations as falling into the following major categories:

• The administration, HUD, and Congress must improve the enforcement of disability rights guaranteed by FHAA and Section 504 of the Rehabilitation Act, ensure compliance by federal grantees, and make enforcement of disability rights laws a priority.
• The administration, HUD, and Congress must ensure that current and future HUD budgets are increased so that adequate resources are devoted to enforcing housing-related civil rights laws and ensuring compliance by federal grantees.
• HUD must provide better guidance on the meaning of housing-related disability civil rights laws, including the FHAA and Section 504, and must dramatically improve its collection of data about enforcement and compliance activities.
• HUD must improve its identification and dissemination of best practices concerning education, enforcement, and compliance activities.
• The administration, Congress, and HUD (including its Office of Disability Policy and National Consumer Advisory Committee) must work together to regain public trust in governmental enforcement and compliance activities.

NCD outlined the overall challenges facing HUD in improving its efforts as follows:

As detailed in this report ... much more needs to be done. HUD needs to work continuously with its various stakeholders to ensure that management and program reforms recommended in this report are implemented. HUD needs to work alongside NCD as part of this process. HUD also needs to ensure that its work in this regard incorporates the knowledge generated by the Interagency Council on Community Living, as well as the groundbreaking work being conducted around the Olmstead Initiative by the Department of Health and Human Services. It is time to restructure fair housing.

During Chairperson Bristo’s tenure, NCD engaged in numerous other activities as part of its Disability Civil Rights Monitoring Project. These included issuing a summary of the holdings