National Council on Disability:

20 Years of Independence

National Council on Disability

July 26, 2004
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

National Council on Disability: 20 Years of Independence 

This report is also available in alternative formats and on NCD’s award-winning Web site 

(http://www.ncd.gov/). 

Publication date: July 26, 2004 

Voice: 202-272-2004 

TTY: 202-272-2074 

Fax: 202-272-2022 

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
ii
Dedication 

This report is dedicated to Americans with disabilities and their families, who contribute to their 

communities and the nation. 

iii
iv
Acknowledgments 

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. 

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Contents 

Introduction ..................................................................1

Origins, Initial Configuration, and First Steps: The Dusenbury Era .......................5

Toward Independence: The Parrino Era and the ADA Proposal .........................11

Challenges in Achieving Independence: NCD Under Chairperson Bristo .................25

The Current Council, Investing in Independence, Righting the ADA, and the 21st Century:

NCD Under Chairperson Frieden.............................................53

NCD Reports ................................................................75

Conclusion ..................................................................83

Appendix: Mission of the National Council on Disability .............................85

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viii
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 

1
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 awardwinning 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. 

2
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 

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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 

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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 

6
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 thenExecutive 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. 

7
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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

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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

10
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 

11
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. 

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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. 

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! 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. 

14
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 dependencyrelated 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 privatesector 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 foldout 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). 

15
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, 

16
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 

17
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 

18
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.” 

19
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. 

20
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. 

21
22
National Council on Disability Members and Staff 

During the Bristo Era 

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

Ramon Lessen, Executive Assistant

Janice Mack, Administrative Officer

Jamal Mazrui, Program Specialist

23
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

24
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 

25
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. 

26
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: 

27
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 

28
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 

29
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. 

30
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 

31
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, crossdisability 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 

32
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 

33
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 

34
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 

and implications of the Supreme Court’s ADA rulings (Supreme Court Decisions Interpreting 

the Americans with Disabilities Act), a summary of major federal laws prohibiting discrimination 

35
on the basis of disability (A Guide to Disability Rights Laws), and a paper on the implications of 

the Supreme Court’s ruling in Alexander v. Sandoval (The Sandoval Ruling). 

In addition, pursuant to its statutory duty to “make recommendations to ... officials of ... Federal 

entities” regarding “equal opportunity for all individuals with disabilities” and “achiev[ing] ... 

inclusion and integration into all aspects of society,” NCD supplied information in friend of the 

court (amicus curiae) briefs to the Supreme Court in four cases. First, in Olmstead v. L.C., NCD 

described how prohibiting unnecessary segregation and isolation of people with disabilities in 

various contexts, including state and local government facilities that provide treatment and 

habilitation services, was a central concern of the ADA proposal from its inception. Second, in 

Board of Trustees of the University of Alabama v. Garrett, NCD submitted an amicus curiae brief 

to the Supreme Court describing the extensive record of state and local governments in denying 

equal protection and due process to individuals with disabilities and the appropriateness of the 

ADA’s measures to address and remedy this inequity. NCD also recounted the 25 years of 

methodical congressional study, measured legislative steps, and finely tuned negotiation that led 

to the enactment of the ADA. 

In Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, the Supreme Court considered the 

breadth of the scope of protection afforded under the ADA. NCD filed an amicus curiae brief in 

which it contended that a narrow interpretation of the term “disability” in the ADA would exclude 

many people whom Congress intended to protect. Recognizing that discrimination on the basis of 

disability takes place in various ways against people with various types of disabilities, Congress 

had adopted an inclusive, three-prong definition of “disability.” NCD condemned as “draconian” 

and “erroneous” the “stereotypical view of disability” that would extend ADA protection only to 

those who “are so severely restricted that they are unable to meet the essential demands of daily 

life.” In Chevron U.S.A. Inc. v. Echazabal, NCD told the Supreme Court that the “direct threat to 

self” defense created by EEOC was “directly contrary to a plain and natural reading of the Act, 

and is inconsistent with the clearly expressed intent of Congress.” In NCD’s view, such a defense 

allows employers to unilaterally bar or dismiss from jobs qualified workers who do not pose a 

health or safety risk to others and whose purported risk to themselves may be based on 

speculative, paternalistic, and stereotypic assumptions by the employer. 

NCD also monitored developments in the education of students with disabilities and the 

implementation of IDEA, both before and after its prominent Back to School on Civil Rights 

report. IDEA, like the ADA, experienced a significant backlash that NCD fought at every 

opportunity. NCD offered input on proposed legislative and regulatory changes and advocated for 

optimal educational rights and opportunities for students with disabilities. It periodically issued 

formal reports on educational issues and the implementation of IDEA: Inclusionary Education for 

Students with Disabilities: Keeping the Promise (1994), Improving the Implementation of the 

Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children 

(1995), Discipline of Students with Disabilities: A Position Statement (1998), and Individuals 

with Disabilities Education Act Reauthorization: Where Do We Really Stand? (2002). Through 

these and other efforts, NCD maintained a high profile as an advocate for the educational rights of 

pupils with disabilities. 

36
D. Political Appointees with Disabilities 

Following recommendations from its 1996 report Achieving Independence: The Challenge for the 

21st Century, NCD for the first time began to convene meetings of political appointees with 

disabilities, who then collaborated on common issues. The appointees agreed to focus on a single 

issue—the employment of people with disabilities. This collaboration led to significant and 

positive results, such as the Ticket to Work and Work Incentives Improvement Act (TWWIIA) 

and an executive order creating the Presidential Task Force on the Employment of Adults with 

Disabilities. 

E. Ticket to Work and Work Incentives Improvement Act 

Both the National Summit on Disability Policy and the Achieving Independence report identified 

the need for legislation to create programs to “ensure a fundamental level of support for workingage adults with disabilities who are in economic need,” with the proviso that “[t]his support 

should lead to employment as the desired outcome whenever possible.” Such support would 

include services such as “housing, personal assistance services, assistive technology and 

vocational rehabilitation, that are necessary to ensure independent living and self-determination.” 

In Achieving Independence, NCD advanced the idea of “tickets” for beneficiaries, who would 

then be able to select services from a “broker” that would receive program funds for helping 

individuals find and keep a job—a concept that was particularly promoted by Council member 

Bonnie O’Day. 

Consumers and advocates expanded upon the employment recommendations from that report 

during a 1997 working conference. Most of the 40 conference participants were or had been 

Supplemental Security Income (SSI) recipients or Social Security Disability Insurance (DI ) 

beneficiaries, and all were knowledgeable about disability employment issues. The participants 

identified barriers to employment faced by individuals with disabilities and generated a series of 

proposals for overcoming those barriers. To find out what the rest of the disability community 

thought of the proposals, NCD took oral and written testimony from hundreds of individuals with 

disabilities, their families, and advocates in 13 hearings nationwide. 

In 1997, NCD expanded upon the “ticket” concept in its report Removing Barriers to Work: 

Action Proposals for the 105th Congress and Beyond. The report declared that 

Congress should create a “ticket” or “voucher” program that enables SSI recipients and DI 

beneficiaries to select and buy services leading to employment. Individuals should be 

allowed to choose from a wide array of service providers, including educational 

institutions, training facilities, job-coaching services, and assistive technology. 

NCD added that “[s]ervices covered by any voucher proposal should include the purchase of 

technology or equipment, tuition for college or vocational school, or other training and support 

37
needed to work. SSI recipients and DI beneficiaries should control the allocation of those 

vouchers.” 

The ticket concept was incorporated into concrete legislative proposals in the 105th Congress in 

the form of the proposed Ticket to Work and Economic Self-Sufficiency Act in the House and the 

Work Incentives Improvements Act proposal in the Senate, both of which gained the 

administration’s support and almost became law. The return-to-work bills captured the attention 

of people with disabilities, their families, and advocates across the country as news of them 

arrived by e-mail, fax, telephone, and letter. The progress made on this issue in the 105th 

Congress afforded a solid foundation for the passage of such legislation in the next Congress, and 

on December 17, 1999, President Clinton signed the TWWIIA. In addition to features designed to 

increase work incentives and opportunities for people with disabilities, the new law sought to 

reduce disincentives to working for SSI and DI recipients. TWWIIA reduced disincentives to 

working in two ways: by providing new opportunities for obtaining vocational services through 

the issuance of the “ticket to work” and by creating new ways to retain health insurance after 

leaving the benefit rolls. The Ticket to Work and Self-Sufficiency Program, which was 

established in Title I of the TWWIIA, modernized the disability employment services system by 

allowing SSI or DI beneficiaries to go to any public or private provider of their choice for 

vocational rehabilitation and other covered services. The program, administered by the Social 

Security Administration (SSA), became operational in January 2001. 

TWWIIA allowed people with disabilities to keep their Medicare coverage for four and a half 

years while still working; it also created a support system for them by developing one-stop shops 

where they can find employment and resolve benefit questions. According to SSA, the goal of 

TWWIIA is “to give disability beneficiaries the opportunity to achieve steady, long-term 

employment by providing them greater choices and opportunities to go to work if they choose to 

do so.” The legislation “removes barriers that previously influenced people’s choices between 

healthcare coverage and work.” NCD continued to work with administration officials to promote 

the vigorous and effective implementation of TWWIIA. In his “New Freedom Initiative” 

announced on February 1, 2001, President Bush included swift implementation of TWWIIA as a 

specific objective. 

F. Input into the Establishment of the President’s Task Force on the Employment of 

Adults with Disabilities. 

Another employment-related need identified by the National Summit on Disability Policy and 

reflected in Achieving Independence was that “the President should issue an executive order 

directing the Secretary of Labor to promote the employment of people with disabilities and to 

establish employment goals for people with disabilities.” In addition, the report stated that there 

should be an assessment of “our nation’s efforts to employ people with disabilities in the context 

of current and future labor market trends, both nationally and locally,” conducted by “the 

Secretary of Labor and the chairman of PCEPD [the President’s Committee on Employment of 

People with Disabilities], in conjunction with representatives from business, labor, people with 

38
disabilities and labor market economists,” culminating in “recommendations for maximizing the 

employment of people with disabilities.” 

Consistent with these recommendations, President Clinton signed an Executive Order on March 

13, 1998, that established the Presidential Task Force on the Employment of Adults with 

Disabilities (PTFEAD). PTFEAD’s mandate was to “evaluate existing federal programs to 

determine what changes, modifications, and innovations may be necessary to remove barriers to 

employment opportunities faced by adults with disabilities” and to review such issues as 

“reasonable accommodations, inadequate access to health care, lack of consumer-driven, longterm supports and services, transportation, accessible and integrated housing, 

telecommunications, assistive technology, community services, child care, education, vocational 

rehabilitation, training services, employment retention, promotion and discrimination, on-the-job 

supports, and economic incentives to work.” 

In the FY 2001 budget process, Congress provided funding for a new Office of Disability 

Employment Policy in the Department of Labor (DOL). The programs and staff of the former 

PCEPD were incorporated into this new office. NCD has been an active member of PTFEAD 

since its inception. 

G. International and Foreign Affairs Issues 

Another area addressed in Achieving Independence concerned international issues involving 

people with disabilities. The summit participants made several recommendations concerning 

social and economic development, foreign assistance, and the inclusion of people with disabilities 

in all aspects of foreign policy, and they recommended that U.S. foreign policy recognize the 

human and civil rights of people with disabilities. In 1995, the State Department designated NCD 

the official contact for disability issues in the U.S. government, and the United States Mission to 

the United Nations “advised that the contact point within the U.S. government for disabilities 

issues is the ... National Council on Disability.” As part of this role, NCD interacts with the 

special rapporteur of United Nations Commission for Social Development on disability matters. 

To meet these responsibilities, NCD developed and issued Foreign Policy and Disability (1996), 

which measured the extent to which U.S. disability rights laws are extended in international 

settings through the activities of three key U.S. foreign policy agencies: the State Department, the 

U.S. Agency for International Development (USAID), and the United States Information Agency 

(USIA). It examined the employment, accessibility, and outreach policies and programs of these 

agencies and the attitudes of their officials in light of U.S. disability rights law and democratic 

principles; its goal was to assess the effect of American foreign policy and programs on people 

with disabilities in the United States and abroad. The report’s major finding was that the United 

States did not have a comprehensive foreign policy on disability. It declared that “[t]hose 

responsible for creating and implementing U.S. overseas policies and programs generally lack 

awareness of disability issues, cannot articulate our national policies with respect to people with 

disabilities, do not incorporate the interests of people with disabilities into U.S. foreign policy 

39
objectives, and do not see the importance of U.S. disability advances and achievements for people 

with disabilities in other countries.” 

Among the major recommendations of the report were 

! creating a comprehensive foreign policy on disability to advocate for people with 

disabilities through activities at the international level; 

! extending U.S. disability law by legislation or executive order to include, without 

ambiguity, the international operations of the U.S. government; 

! employing domestic standards of nondiscrimination in U.S.-sponsored international 

activities; 

! training U.S. foreign affairs agencies and their contractors to plan for programmatic 

accessibility; and 

! establishing the principle that no U.S. international activity should have a lower standard 

of inclusion than its domestic correlate. 

Secretary of State Madeleine Albright acknowledged the significance of the Foreign Policy and 

Disability report when, in remarks to the International Leadership Forum for Women with 

Disabilities on June 16, 1997, she declared, 

Here in the United States, the Americans with Disabilities Act has made us a leader in 

promoting full participation by persons with disabilities. But a year ago, when NCD 

issued a report asking whether our foreign policy had a coherent approach to disability, 

the answer was no. This is not an acceptable answer and, fortunately, it is not an answer 

that will remain accurate for very long. 

Within a matter of weeks, USAID will be issuing a new policy and action plan on 

disability and development. That document will express the agency’s commitment to 

reach out and include persons with disabilities in its programs and place this issue 

prominently on our development agenda with governments that receive our aid. 

True to Secretary Albright’s words, on September 12, 1997, USAID issued its policy paper on 

disability, which affirmed the organization’s commitment to nondiscrimination against people 

with disabilities and described steps it would take to implement its policy on disability, which is 

“to promote the inclusion of people with disabilities both within USAID programs and in host 

countries where USAID has programs.” 

During the mid- to late 1990s, NCD worked with the State Department toward developing an 

official disability inclusion policy applicable to every major area of State Department operations. 

During the same period and continuing into the first years of the next decade, NCD met with 

40
representatives from the governments of Argentina, Great Britain, Japan, Saudi Arabia, Slovakia, 

Finland, New Zealand, Australia, and Germany. NCD also had discussions with organizations 

involved in international disability issues, including the United States Council on International 

Rehabilitation, the International Labor Organization, and the European Disability Forum, and 

participated in numerous international conferences such as USIA/Mobility International USA, the 

Inter-American Convention on Disabilities, the International Conference on Accessibility, the 

Global Workshop on Children with Disabilities, the International Leadership Forum for Women 

with Disabilities, the International Summit on Employment, the United Nations Conference on 

Human Settlements, the Third Paralympic Conference, the U.N. World Summit for Social 

Development, the European Union/U.S. conference on “Harnessing the Information Society to 

Raise Employment Levels for People with Disabilities,” and the Fifth World Assembly of 

Disabled Peoples’ International. 

Congress has periodically sought NCD’s advice on international disability issues. For example, 

during NCD’s fiscal year 2001 appropriations hearings, Representative John Porter’s questions to 

Vice Chairperson Kate Pew Wolters included inquiries about the status of people with disabilities 

internationally, and whether Congress was effective in helping people with disabilities 

“worldwide.” 

In January 1997, the State Department’s Permanent Mission to the Organization of American 

States (OAS) invited NCD to participate in the development of the U.S. Government’s comments 

on a draft “Inter-American Convention for the Elimination of All Forms of Discrimination by 

Reason of Disability.” The convention’s primary objective was to prohibit disability 

discrimination throughout the hemisphere. In response, NCD consulted with representatives of 

the State Department and DOJ to try to reach consensus on comment language. This process 

culminated in official comments on behalf of the U.S. government that were presented to the OAS 

Working Group on Disabilities on April 28, 1997. Thereafter, led by Council member Dr. Yerker 

Andersson with the legal/technical assistance of Robert Burgdorf Jr., NCD provided comments on 

successive drafts of the proposed convention. 

After some thorny issues had arisen over the ensuing months, OAS decided to convene a 

“Meeting of Experts to Examine the Draft Inter-American Convention” on March 3–4, 1998. 

NCD was part of the U.S. delegation at the meeting and contributed significantly to the 

discussions and drafting of alternative language, particularly concerning the definitions of 

disability and of discrimination on the basis of disability. Although the experts appeared close to 

consensus on many of the important issues, the political representatives of the member 

governments were unable to agree, and a replacement version of the convention was not adopted 

at that time. The draft convention remained stalled until April 30, 1999, when the Committee on 

Juridical and Political Affairs of OAS adopted a revised version. In July 1999, OAS ratified the 

Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons 

with Disabilities. The convention entered into force when it was ratified by at least six countries, 

but it is legally binding only in countries that have themselves ratified it. Although NCD has 

encouraged Congress to adopt the convention, it has yet to do so. 

41
In 1997, NCD established a consumer-oriented task force known as International Watch to share 

information on international disability issues and advise NCD’s International Committee on 

developing proposals to promote foreign policy consistency with the values and goals of the 

ADA. In October 2000, International Watch was reconstituted and formally chartered as a Federal 

Advisory Committee to NCD. International Watch has provided NCD with considerable 

information and expertise on issues affecting the rights of persons with disabilities abroad. With 

International Watch’s guidance, NCD issued its Summary of International Watch 

Recommendations for NCD Consideration and Action (2000), which addressed foreign policy and 

international disability issues. 

NCD also facilitated the beginning of a roundtable series on disability inclusion in foreign 

assistance programs that includes USAID, InterAction, the State Department, the World Bank, 

and various nongovernmental disability rights organizations. The roundtable series sought to 

identify and address issues that would encourage constructive engagement of the State 

Department and USAID on disability inclusion in their foreign assistance programs. The first 

such roundtable was held on February 11, 2002. 

Through International Watch, NCD has responded to a call from disability rights groups to 

promote an International Convention on the Human Rights of Persons with Disabilities. NCD 

served as a consciousness-raising force within the disability community in the convention’s early 

stages. On April 8, 2002, NCD convened a Summit on Human Rights and Disability that involved 

leaders and experts in the fields of disability and human rights as well as others with experience 

in treaty processes. Building on the summit, on June 12, 2002, NCD sponsored A Call for 

Worldwide Recognition of the Human Rights of People with Disabilities, a forum of U.S. 

grassroots disability organizations, to discuss their role in the development of an International 

Convention on the Rights of People with Disabilities. To describe to a broad audience the need 

for such a convention, what form it might take, and what it might accomplish, in 2002 NCD 

issued several documents, including An International Disability and Human Rights Convention: 

What You Need to Know About International Human Rights Law and Efforts to Gain Equality 

and Justice for People with Disabilities in the U.S. and Abroad; A Reference Tool: 

Understanding the Potential Content and Structure of an International Convention on the Human 

Rights of People with Disabilities; and a white paper, Understanding the Role of an International 

Convention on the Human Rights of People with Disabilities. Through these publications and 

through various formal and informal activities, NCD lent its strong support to the development of 

an International Convention on the Rights of People with Disabilities. 

H. Cultural Diversity 

A vital and ongoing concern of NCD is the lack of inclusion and other unmet needs of culturally 

diverse people with disabilities. NCD has found that key information related to the rights and 

services available to people with disabilities is not reaching a large segment of the population, 

especially members of culturally diverse populations and people living in rural communities. To 

address such concerns, NCD undertook a number of initiatives, studies, and outreach actions. 

42
In August 1997, NCD conducted a roundtable in Atlanta on outreach to minority and rural 

residents. More than 100 participants discussed the challenges and barriers minorities and rural 

residents with disabilities face to the full enjoyment of their rights and possible approaches for 

improving outreach to these groups. NCD published the findings in Outreach to Minorities with 

Disabilities and People with Disabilities in Rural Communities (1997). In January 1998, NCD 

conducted a public hearing in New Orleans on meeting the needs of children and youth with 

disabilities from minority and rural communities in Louisiana. In August 1998, NCD held a 

public hearing in San Francisco that focused on meeting the needs of people with disabilities from 

diverse cultural populations. Information from these three meetings helped inform NCD’s 1999 

report Lift Every Voice: Modernizing Disability Policies and Programs to Serve a Diverse 

Nation. The report presented an array of findings and recommendations for addressing barriers 

facing culturally diverse individuals with disabilities: employment, public accommodations, 

transportation, culturally competent service delivery, citizenship, resources, and accurate 

demographic data. The executive summary of this report was released at the White House Forum 

on Disability and Cultural Diversity that also celebrated the ninth anniversary of the passage of 

the ADA. The forum, convened by the White House and NCD with support from the Leadership 

Conference on Civil Rights, focused on how to improve outcomes in education, employment, and 

civil rights enforcement for people with disabilities from diverse cultural backgrounds. 

Judge Hughey Walker, NCD vice chairperson and chair of the Subcommittee on Cultural 

Diversity Issues, became concerned by growing evidence that the benefits won for the disability 

community under the ADA and other federal laws and programs were not reaching everyone 

equally. In response, Walker suggested a meeting to bring together people with disabilities from 

diverse cultures and members of national civil rights organizations to find common ground and 

generate action plans that could advance disability rights and civil rights reciprocally. Out of this 

suggestion, NCD hosted Think Tank 2000. The event, held May 18–20, 2000, in Washington, 

D.C., grew out of numerous reports prepared for NCD and testimony from citizens during 

stakeholder hearings in Jackson, Mississippi; San Francisco; Atlanta; and New Orleans. 

More than 70 people attended the meeting, including people with disabilities from diverse 

cultures, their supporters, and members of national civil rights organizations. Also present were 

national disability rights supporters such as Representative James Clyburn, chair of the 

Congressional Black Caucus; Representative Major Owens, who helped steer the ADA through 

the House; Bill Lann Lee, acting assistant U.S. attorney general for civil rights; Milton Little, vice 

president of the National Urban League; and Wade Henderson, executive director of the 

Leadership Conference on Civil Rights. Participants came from all areas of the country and 

included Native Americans, African Americans, Asian Americans and Pacific Islanders, Hispanic 

Americans/Latinos, and Caucasians. 

Think Tank 2000 participants were asked to formulate an action plan for working collaboratively 

on rights issues that are of mutual concern to the disability and civil rights communities. By the 

end of the meeting, participants had formed an organization, Leadership Coalition Unlimited; 

decided on their first action (creating a listserv to maintain communication among participants 

and other interested parties); and agreed to other prioritized actions that could create a critical 

43
mass of advocates for disability rights, civil rights, and human rights. The proceedings and 

outcomes of the event were summarized in Carrying on the Good Fight: Summary Paper from 

Think Tank 2000—Advancing the Civil and Human Rights of People with Disabilities from 

Diverse Cultures (2000). The report presented a collection of action steps to address the following 

priority areas: cultivating leadership development, removing educational barriers, providing equal 

opportunity and access to employment, upholding human rights and civil rights, and expanding 

voter registration and voter participation. 

Some of the strategies that came out of these meetings were decisions by the participants to 

! stay in touch and share information through a listserv; 

! develop an advocacy toolkit with attention to different cultural needs; 

! build coalitions from bottom to top, beginning in local communities; and 

! establish a leadership task force composed of people from traditional civil rights areas, 

public- and private-sector organizations, and the disability community. 

The next step was to incorporate the messages and concerns articulated at Think Tank 2000 into 

NCD’s overall civil and human rights agenda. NCD convened a second group in June 2000, the 

Civil Rights Retreat, to build on the Think Tank 2000 plan of action and the reports generated by 

NCD’s Disability Civil Rights Monitoring Project. The meeting was attended by experts from 

diverse cultural, professional, and disability backgrounds, and the attendees were charged with 

mapping out the elements of a 10-point Strategic Action Plan for more effective civil rights 

enforcement. 

The resulting strategy, which was published as Closing the Gap: A Ten-Point Strategy for the 

Next Decade of Disability Civil Rights Enforcement, represented a collective effort by people 

from diverse backgrounds to reach past their own community perspectives to understand and help 

each other on the road to full equality, affirming that power comes from unity. The proposed plan 

called for cooperation at all levels, from all public- and private-sector interest groups, including 

the administration; Congress; grassroots advocates; state and local government agencies; and 

education, business, religious, professional, and civic organizations. The plan presented an 

ambitious and wide-ranging strategy, addressing such issues as 

! working with and finding a common agenda with other human rights and civil rights 

activists; 

! forming cross-cultural coalitions of technical and information experts to develop 

multiformat, multilanguage information and training systems; 

! forming action coalitions to facilitate the election of disability-friendly national leaders; 

44
! seeking strong presidential leadership to give disability issues and the enforcement of 

disability rights laws high priority and high visibility within the administration; 

! promoting effective accountability of civil rights enforcement agencies, including 

increasing stakeholder involvement with monitoring and advisory groups; 

! mobilizing action coalitions across civil and human rights groups to design and carry out a 

comprehensive strategy for making legal resources available and securing successful court 

actions; 

! ensuring that forms of alternative dispute resolution result in settlements that are fair and 

consistent with the spirit and intent of the complainants’ legal rights; 

! countering negative media coverage and winning the media battle; 

! acknowledging and honoring persons who uphold the values of equality of opportunity 

and inclusion; and 

! engaging, identifying, training, and supporting new leaders with disabilities. 

NCD posted the plan for public input on its Web site and sought additional input through 14 

regional briefings that included outreach to people from diverse cultures. Feedback from 

community members included, for example, suggestions that training for grassroots groups, 

including youth and young adults in high school and college, should include information on civil 

rights and how to participate in local, state, and federal policy-making, and that young people 

should be encouraged to join older leaders to become effective self-advocates and leaders. 

On August 11, 2000, the President issued Executive Order 13166, “Improving Access to Services 

for Persons with Limited English Proficiency (LEP).” Before the Executive Order was signed, 

NCD’s Web site was already using an automatic translation service known as Babel Fish, which 

translates Web pages to and from English, French, German, Italian, Portuguese, and Russian. 

After the Order was issued, NCD published its Implementation Plan for Executive Order 

13166—Improving Access to Services for Persons with Limited English Proficiency (2000), 

which was approved by DOJ. This plan enunciated NCD’s strategy for improving access to 

services for persons with limited English proficiency. 

On January 16, 2001, NCD chartered a Cultural Diversity Advisory Committee to provide advice 

and recommendations on issues affecting people with disabilities from culturally diverse 

backgrounds. The committee is charged with identifying issues, expanding outreach, infusing 

participation, and elevating the voices of underserved and unserved segments of the population. It 

also assists NCD in developing federal policy that addresses the needs and advances the civil and 

human rights of people from diverse cultures. 

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I. Outreach to Youth 

As a complement to its work on cultural diversity, NCD emphasized reaching out to young people 

and addressing the issues that affect them. In 1998 NCD released Grassroots Experiences with 

Government Programs and Disability Policy: Proceedings from a Public Hearing in New 

Orleans, Louisiana, which made recommendations on issues facing children with disabilities and 

their families from minority and rural communities in Louisiana. In 2000, NCD released 

Transition and Post-School Outcomes for Youth with Disabilities: Closing the Gaps to PostSecondary Education and Employment, which analyzed research on the status of transition, 

postsecondary education, and employment outcomes over the past 25 years for 14- to 22-yearolds with disabilities; identified what had worked and what should work in light of unmet needs 

and unserved populations; and presented recommendations for national, state, and local 

community action. 

In June 1999, NCD coordinated the National Leadership Conference for Youth with Disabilities, 

its third annual youth conference. The conference was sponsored by SSA, ED, the U.S. 

Department of Health and Human Services (HHS), PTFEAD, and the President’s Committee on 

Employment of People with Disabilities, with the Mitsubishi Electric America Foundation as the 

primary private sponsor. The conference, which brought together more than 125 young people, 

succeeded in its three primary aims: 

! serving as a forum for youth to learn from national disability leaders about national 

disability policy, civil rights, the public policy process and leadership, employment 

opportunities, and related programs available to them; 

! encouraging young people to identify barriers to their economic independence, provide 

input to the public policy process, and identify future programs to support economic 

independence and leadership among all youth with disabilities; and 

! creating solidarity and community among the participants, and building the confidence 

and resolve to take action. 

The success of the National Leadership Conference led to the development of the National Youth 

Leadership Network (NYLN). NYLN, which is supported by ED, DOL, HHS, SSA, and NCD, is 

a five-year, research-oriented project to involve 16- to 24-year-olds with disabilities in 

formulating and evaluating the programs and services that affect their lives. Its ultimate goal is to 

develop the next generation of leaders in the disability community. Under the aegis of NYLN, the 

National Leadership Conference for Youth with Disabilities has continued as an annual event. 

In January 2000, NCD formed a Youth Advisory Committee (YAC) to advise NCD on issues 

affecting the lives of children and youth. NCD sought such input to ensure that NCD’s activities 

and policy recommendations responded adequately to the needs of youth with disabilities, 

particularly regarding critical civil rights legislation such as IDEA. In November 2001, YAC 

released its first formal document, Speak Out: Youth and Young Adults with Disabilities. YAC 

46
has produced several other informative documents as well as providing ongoing input and 

perspectives on the Council’s activities. 

J. Assisted Suicide and the Value of the Lives of People with Disabilities 

In 1997, NCD took on a controversial issue when it decided to take a position on physicianassisted suicide. In its report Assisted Suicide: A Disability Perspective Position Paper, NCD

sought to present a coherent and principled stance on these issues drawn from the input and

viewpoints of individuals with disabilities. To arrive at its position, NCD examined the following

factors:

! Rights, services, and options 

! The reality and prevalence of discrimination 

! Deprivation of choices and the importance of self-determination 

! Others’ underestimation of life quality 

! The fallibility of medical predictions 

! Eschewing the medical model of disabilities 

! The impact of disability onset on emotional state and decision-making 

! The reality of living with pain and bodily malfunction 

! Divergent interests of those involved in assisted suicide decisions

After studying the effects of these factors, NCD found that the benefits of physician-assisted

suicide apply only to the small number of people who have an imminently terminal condition; are

in severe, untreatable pain; wish to commit suicide; and are unable to do so without a doctor’s

involvement. NCD recognized the substantial danger of permitting physician-assisted suicide,

including the already-prevalent pressure on people with disabilities to end their lives and the

insidious appropriation by others of the right to make that choice for them—compounded by the

growth of managed care and the rationing of health care services and financing. NCD also

described society’s devaluation of the lives of people with disabilities, noting the example of the

Netherlands, where people with disabilities experienced coercion and involuntary “euthanasia.”

NCD explained the difficulty of crafting adequate procedural safeguards, which inevitably would

place unacceptable control in the hands of medical and legal “experts,” and the many societal

barriers that continue to limit life choices for people with disabilities. The report declared that

“society should not be ready to give up on the lives of its citizens with disabilities until it has

made real and persistent efforts to give these citizens a fair and equal chance to achieve a

meaningful life.” Based on these realities, NCD opted to declare its opposition to physicianassisted suicide.

NCD’s position on this issue, which was shared by other national organizations such as the

National Council on Independent Living (NCIL), was widely publicized and quite influential. The

executive editor of the journal Issues in Law and Medicine, which reprinted NCD’s Position

Paper verbatim, wrote that the report “provides an invaluable disability perspective in opposition

to assisted suicide that still needs to be heard.”

47
The dangers of undervaluing the lives of people with disabilities were spotlighted some months 

later by Peter Singer, an ethics professor at Princeton University. In his book Practical Ethics, 

Singer argued that some people with disabilities have lives that are not worth living and that 

infants with disabilities may be killed ethically because they are not sentient beings. NCD decided 

to take on this deplorable viewpoint and joined Princeton Students Against Infanticide, Not Dead 

Yet, and others to protest Singer’s appointment. In remarks she delivered at a protest event at 

Princeton on April 17, 1999, Bristo condemned Singer’s stance in no uncertain terms: “Singer’s 

core vision, that the life of a person with a disability is worth less than the life of a person without 

a disability, and therefore it is okay to kill infants with disabilities if that is what the parent wants 

to do, amounts to a defense of genocide .... Condoning the murder of infants is wrong. Devaluing 

the life of a human because of her disability is discriminatory, hateful, and bigoted.” 

K. Other Issues 

Under the leadership of Chairperson Bristo, the Council became involved in a number of other 

issues—some new and some ongoing. NCD issued reports dealing with mental health issues, 

including Position Paper on Patients’ Bill of Rights Legislation (2001) and From Privileges to 

Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (2001). In 1997, NCD 

presented the first Justin Dart Freedom Award. The award, a bronze copy of Dart’s famous 

cowboy hat, was given to the Leadership Conference on Civil Rights for its critical role in 

supporting and assisting the passage of the ADA. 

For many years, NCD has recognized the harmful effects of discrimination based on individuals’ 

genetic information and has supported the creation of federal legislation prohibiting genetic 

discrimination as well as the enforcement of existing legislation that may prohibit certain types of 

genetic discrimination. NCD addressed genetic discrimination in several broader reports, 

including Achieving Independence: The Challenge for the 21st Century (1996), Promises to 

Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act (2000), and its 

1997 and 2000 Annual Reports. In 2002, NCD issued two publications focused solely on genetic 

discrimination. In its Position Paper on Genetic Discrimination Legislation, NCD recommended 

enacting new federal legislation to prohibit genetic discrimination. The report documented several 

considerations that supported the need for such legislation; they were presented under the 

following topic headings: 

! Recent Advances in Genetic Research Have Brought Increasing Potential for Genetic 

Discrimination 

! Genetic Discrimination Is a Historical and Current Reality 

! Genetic Discrimination Undermines the Purposes of Genetic Research and Testing 

! Genetic Test Information Has Little Value for Purposes of Making Employment Decisions 

and Insurance Decisions 

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! Existing Laws Are Insufficient to Protect Individuals from Genetic Discrimination 

The report concluded that “[i]n light of the inadequacies of federal and state law to address 

genetic discrimination issues, comprehensive federal legislation that specifically addresses these 

issues is necessary.” 

The report then listed certain principles that NCD believed were critical for guiding any federal 

legislation addressing genetic discrimination. NCD issued these legislative principles, in revised 

and edited form, in a separate document titled Principles for Genetic Discrimination Legislation. 

L. Perspectives of Chairperson Bristo 

When I finally made it through the yearlong confirmation process and was sworn in by Vice 

President Gore as chairperson of NCD, I remember being daunted by two things: NCD had been 

the birthplace of the ADA; how could we top that? And, no one with a disability had held this 

post before, a fact which carried with it a special responsibility. 

These two ideas profoundly shaped the Council’s vision, mission, and activities during my eightyear tenure. First, we did not try to “top” the ADA; rather, we worked to implement, defend, and 

monitor its enforcement. We recognized that the really difficult work lay ahead as we attempted 

to infuse the values embedded in the ADA into other areas of public policy. 

Second, as a person with a disability, I understood the absolute necessity of giving voice to the 

disability community in everything we did. This was made considerably easier by President 

Clinton, who appointed an activist Council of true disability rights leaders. Further, the record 

numbers of people with disabilities appointed by the President throughout government gave us 

access to trusted colleagues with whom we could collaborate. NCD convened the political 

appointees with disabilities, and together we worked on initiating the Ticket to Work and Work 

Incentives Improvement Act, creating the Presidential Task Force on Employment of Adults with 

Disabilities, forming the Office of Disability Employment Policy at DOL as well as many other 

policy initiatives. 

All of our work rested on the “nothing about us without us” approach to public policy. The 

historic summit in Dallas resulted in the report Achieving Independence, which served as our road 

map. Most of the rest of our work also cascaded out of that gathering of 300 of the nation’s most 

well-regarded leaders of the disability community. We gave voice to perspectives and 

constituents who too often have been left out of the policy equation, particularly youth, people 

from diverse cultural backgrounds, and members of the psychiatric survivor movement. 

Bringing to light the difficulties faced by people with disabilities is not always welcomed. I look 

back with pride and deep respect for my fellow Council members and staff who, undeterred by 

the criticism they bore for taking politically unpopular positions, epitomized the spirit of an 

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independent agency. Our civil rights enforcement series, Unequal Protection Under the Law, was 

controversial in its forthrightness, and, unfortunately, many of its core findings remain true today. 

The influence that NCD has had on our nation over the past 20 years has been profound. I know 

that my fellow Council members and I are proud to have played a part in shaping the policy 

agenda on behalf of people with disabilities. 

50
National Council on Disability Members and Staff 

During the Frieden Era 

Members

Lex Frieden, Chairperson

Patricia Pound, Vice Chairperson

Glenn B. Anderson, Ph.D., Vice Chairperson

Milton Aponte, J.D.

Robert R. Davila, Ph.D.

Barbara Gillcrist

Graham Hill

Joel I. Kahn, Ph.D.

Young Woo Kang, Ph.D.

Kathleen Martinez

Carol Novak

Anne M. Rader

Marco Rodriguez

David Wenzel

Linda Wetters

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

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52
The Current Council, Investing in Independence, Righting the ADA,

and the 21st Century: NCD Under Chairperson Frieden

In April 2002, President Bush named Lex Frieden, former executive director of NCD, to be its 

chairperson, and he was sworn in in September of that year. Frieden is senior vice president at 

The Institute for Rehabilitation and Research (TIRR) in Houston, director of TIRR’s Independent 

Living Research Utilization Program, and a professor of physical medicine and rehabilitation at 

Baylor College of Medicine. Under his leadership, NCD has continued many of the initiatives and 

directions begun under previous chairpersons and instituted a various new activities and 

initiatives. 

A. Transition to the Bush Administration and the President’s New Freedom Initiative 

Even before President Bush took office in January 2001, the outgoing Council sought to facilitate 

the transition to the new administration in regard to disability policy matters. During his 

presidential campaign, Bush had articulated several themes regarding his vision and objectives 

regarding persons with disabilities. These themes were ultimately crystallized in his New 

Freedom Initiative (NFI), in which he articulated a number of proposals addressing Americans 

with disabilities, including the following: 

C a commitment to end discrimination through strong, steadfast support for and 

enforcement of disability civil rights laws; 

C full workforce integration of Americans with disabilities; 

C expanded access to technology for Americans with disabilities to increase 

opportunities for productivity, full participation, and independent living; and 

C increased access into community life for Americans with disabilities by pursuing 

strong and coordinated implementation of the Olmstead decision. 

NCD decided to assist the incoming administration by translating these objectives into 

recommended actions based on NCD’s experience with federal disability policy issues. 

Accordingly, in January 2001, NCD issued Investing in Independence: Transition 

Recommendations for President George W. Bush. The report invited the new administration to 

draw on NCD’s research to learn how and where executive agencies can act to the maximum 

benefit of their constituents. Based on insights NCD had gained in the 1996 National Summit on 

Disability Policy, Think Tank 2000, the Civil Rights Retreat (2000), other meetings and forums 

NCD had conducted between 1996 and 2000, and the reports that drew on them, NCD offered the 

incoming President a series of recommendations to 

C advance the federal commitment to quality education for all children, including 

children and youth with disabilities, through strengthened compliance and 

enforcement of IDEA; 

53
C implement key recommendations identified by PTFEAD to significantly reduce the 

75 percent unemployment rate among individuals with disabilities; 

C ensure that general education, health, workforce development, housing, and other 

programs include appropriate services to individuals with disabilities (especially 

for cases in which the authority to develop service systems has been substantially 

returned to the states); 

C establish a system of health care that supports the needs of people with disabilities 

for continued work opportunities, prevention of secondary conditions, and longterm care supports that allow them to live in their homes or in the least restrictive 

environment; 

C take national and international steps to ensure access to technology and 

participation in the global technological economy; 

C preserve and enhance funding for programs that further inclusion, integration, 

independent living, and economic self-sufficiency of people with disabilities 

through the next decade under the goals and spending limits of the Balanced 

Budget Act; 

C encourage the adoption of universal design concepts and create timely guidance 

and mechanisms to ensure continuous improvements to accessibility in the 

environment (i.e., physical structures and pathways, transportation, and 

technology); and 

C establish a foreign policy that supports the goals of access, civil and human rights, 

inclusion, and poverty reduction for people with disabilities throughout the world. 

NCD expressed the belief that its recommendations were consistent with and incorporated 

President Bush’s NFI. 

Overall, the transition report called for the new President to exercise “strong leadership” to 

achieve a disability-friendly administration. The report noted President Bush’s campaign 

statement that “ending discrimination is just the beginning of full participation” and his promise 

that the NFI would “expand opportunities for people with disabilities to pursue the American 

dream.” NCD stated that its recent evaluations of the enforcement status of key civil rights laws 

(e.g., ADA, IDEA, and ACAA) indicated a need for comprehensive, cohesive federal leadership 

strategies for effective implementation. NCD recommended an interagency effort to coordinate 

the activities of federal enforcement agencies; provide continual and substantial input of 

disability, civil rights, and human rights communities into developing and monitoring the 

implementation of enforcement agency action plans; and establish a mechanism for citizen 

feedback and agency response to resolve concerns and achieve accountability. 

NCD also called upon the new administration to “oppose any legislative or judicial weakening of 

disability civil rights protections by Congress or the Courts,” and quoted then-Governor Bush’s 

statement in a June 21, 2001, interview with Business Week Online: 

Let me lay this principle out. No law should undermine the Americans with Disabilities 

Act. The ADA must stand. The ADA is a good law. I want your readers and followers to 

54
know that George W. Bush, the son of President Bush who signed the Americans with 

Disabilities Act, fully supports the ADA in spirit and in law. I would not do otherwise. 

There is a role to enhance the ADA: I want to make sure the law is fully complied with. 

The Federal Government has made a commitment to protecting civil rights. The ADA is a 

civil-rights legislation. 

NCD noted that in the same interview, Governor Bush said that in regard to the constitutionality 

of the ADA, he “believe[d] in the full force and effect of the ADA.” 

Thereafter, the report offered more specific recommendations for addressing numerous issues, 

presented under the broad headings of (1) strengthening compliance with disability civil rights 

laws, (2) cultural diversity, (3) increasing independent living, and (4) providing access to 

community living. NCD expressed its hope that the initiatives contained in the report would 

“offer the new administration opportunities to reinvigorate federal enforcement of disability, civil, 

and human rights laws so that more Americans with disabilities and their families can realize the 

dream of equal access to full participation in American society.” 

In February 2001, President Bush formally announced the NFI as part of his administration’s 

official policy, and he committed his administration to ensuring the rights and inclusion of people 

with disabilities in all aspects of American life. In the NFI, President Bush stated, “Too many 

Americans with disabilities remain outside the economic and social mainstream of Americans 

life.” 

By Executive Order 13217, issued on June 18, 2001, the President declared the commitment of 

the United States to community-based alternatives for people with disabilities and required the 

Attorney General; the Secretaries of HHS, ED, DOL, and HUD; and the Commissioner of SSA to 

work cooperatively with the states to ensure that the Olmstead v. L.C. decision would be 

implemented in a timely manner. 

In its Olmstead decision, the Supreme Court had ruled that in appropriate circumstances the ADA 

requires that people with disabilities be placed in a community-integrated setting whenever 

possible. The Court had concluded that “unjustified isolation,” for example, institutionalization 

when consulting physicians deem community treatment equally beneficial, “is properly regarded 

as discrimination based on disability.” The Executive Order directed federal agencies to work 

together to tear down the barriers to community living. As a result, various federal departments 

entered into joint efforts with states and others to provide elderly people and people with 

disabilities with the necessary supports to participate fully in community life. 

In its public policy education role, NCD has worked to disseminate information about the NFI to 

the disability community and to the families and colleagues of individuals with disabilities. In its 

advisory role to the administration and Congress, NCD has provided information and suggestions 

about concrete ways to achieve NFI objectives. 

55
B. Investing in Independence Studies 

Under Chairperson Frieden’s leadership, NCD has undertaken a new series of studies in response 

to the NFI that focus on such topics as consumer-directed health care, universal design (products 

designed to be usable by all people, to the greatest extent possible, without the need for 

adaptation or specialized design), implementation of the Olmstead decision, long-term services 

and supports, increasing the employment of Social Security beneficiaries, employment-related 

and return-to-work initiatives, tax incentives, delinquency prevention and juvenile justice, and 

American Indians and Alaska Natives with disabilities. These studies will comprise the Investing 

in Independence series. Through a targeted examination of key supports and resources, NCD will 

provide the President, Congress, and other federal agencies with practical information to shape 

federal policy development, refinement, and change consistent with the centerpiece initiatives 

presented in the NFI. 

The NFI contains strong, sound ideas but requires concrete Federal Government action and 

coordination as well as adequate congressional funding. Through its efforts, NCD hopes to help 

the administration fulfill the proposals presented in the NFI to ensure that all Americans have the 

opportunity to learn and develop skills, engage in productive work, choose where to live, and 

participate in community life. The first three studies in the Investing in Independence series were 

completed in 2003; they addressed the implementation of the Olmstead decision, American 

Indians and Alaska Natives with disabilities, and delinquency prevention and juvenile justice. 

The study of the implementation of the Olmstead decision exemplifies the type of assistance NCD 

has been and will be providing. The Supreme Court’s decision in Olmstead v. L.C. mandated 

systemic change with major implications for national and state-funded residential options for 

people with severe physical and mental disabilities. NCD’s study focused on evaluating Olmstead 

implementation in terms of (1) the extent of unnecessary institutionalization in the United States, 

(2) the continuing barriers to community placement, and (3) the resources and service models that 

facilitate community integration. The study looked at both the Federal Government’s 

implementation efforts and the strategies states and key stakeholders are using to develop 

consensus on a coordinated action plan, identify and commit the necessary resources for 

community-based service options, and sustain collaborative action toward creating real choice for 

people with disabilities living in institutions. The results of the study were issued in Olmstead: 

Reclaiming Institutionalized Lives, which was published on August 19, 2003. This unabridged 

online version included extensive information NCD had collected on individual states’ 

experiences in the planning and implementation of the Olmstead decision. On September 29, 

2003, NCD issued in both electronic and hard copy forms an abridged version of the report 

without the extensive state-by-state information. 

Overall, the report concluded that “progress to varying degrees has occurred in the 

implementation of the Olmstead decision,” but added that “given the many areas where progress 

has not yet been achieved,” further efforts were necessary to increase public awareness of 

Olmstead, to clarify the applications and implications of the decision to relevant entities, and to 

provide the resources necessary to encourage and ensure effective adherence to the decision’s 

56
spirit and intent. The report labeled the extent of unnecessary institutionalization of people with 

disabilities in the United States “daunting.” NCD found that “[r]esearch and experience have 

shown that the great majority of people who live in large congregate settings could be supported 

safely and effectively and enjoy a higher quality of life in a typical home in the community.” It 

also noted that longitudinal studies of community placement had documented these favorable 

outcomes and established that people with significant disabilities benefit most from community 

placement. 

With the advantages of home and community placements clear, the data regarding unnecessary 

institutionalization were troubling: 

Yet, 106,000 persons with developmental disabilities lived in public and private 

institutions and more than 1,300,000 elders and persons with disabilities lived in nursing 

facilities in the year 2000. In addition, data on the outcomes of consumer-directed mental 

health services and intensive case management models show that most of the 58,000 

persons currently confined in psychiatric institutions could be supported in their own 

homes in the community. The persons who fill the more than 800,000 licensed board and 

care beds in the United States could also live in the community. 

The report identified the single biggest barrier to community integration in the United States as 

the lack of affordable and accessible housing. It also found that housing subsidy programs for 

people with disabilities were inadequate because of systemic problems and disproportionate 

underfunding. Other significant barriers to community integration were the lack of meaningful 

collaboration between human services agencies and housing agencies, high unemployment rates 

among people with significant disabilities, the low wages and benefits that severely limit the 

availability of personal assistants and other direct-support professionals, the low reimbursement 

rates for community services, the lack of quality health care, and the absence of dependable 

transportation. The report added that “the institutional bias of the Title XIX (Medicaid) program, 

in which home- and community-based waiver-funded services and personal care are optional 

whereas nursing facility services are required and financial eligibility rules for institutional 

residents are more generous than those for people living in their own homes, greatly compounds 

the problem.” 

At the state level, the report catalogued specific examples of promising practices in the design, 

delivery, and financing of community services in such measures as the form and content of states’ 

Olmstead plans, overcoming incentives to unnecessary institutionalization, identification and 

transition of people with disabilities from institutions, the use of trusts and fine funds to finance 

transition costs and start-up of community services, housing strategies, single-point-of-entry 

systems, and initiatives to increase community integration beyond institutional closure. 

NCD presented a series of recommendations for the Federal Government, including the 

following: 

57
! HHS and the Centers for Medicare and Medicaid Services (CMS) should provide more 

explicit guidance on the implementation of Olmstead v. L.C. 

! CMS should determine whether the states are adequately identifying residents of 

Medicaid-funded and -certified facilities that can handle and benefit from community 

living. 

! HHS should refocus its Real Choice Systems Change grant program as a true system 

change project by shifting from funding demonstration projects to funding change that 

affects entire service systems. 

! HHS should require the states to identify all institutionalized people in the state and their 

need for community services. 

! CMS should use its waiver approval authority to require the states to minimize 

institutional bias in the choice between institutional and home- or community-based 

waiver services. 

! HHS should give federal financial assistance to states to provide small grants to people 

with disabilities for transition costs from institutions to community. 

In releasing the report, NCD Chairperson Lex Frieden commented, 

The Olmstead decision has become a powerful impetus for a national effort to increase 

community-based alternatives and eliminate unjustified institutional placements. 

Ultimately, only comprehensive amendments to Title XIX of the Social Security Act, 

similar to the amendments proposed in the Medicaid Community-based Attendant 

Services and Supports Act (MiCASSA), will overcome the institutional bias within the 

Medicaid program. Our nation will be much more prosperous when it makes real the right 

of people with disabilities to live in the most integrated setting. 

On August 1, 2003, NCD issued People with Disabilities on Tribal Lands: Education, Health 

Care, Vocational Rehabilitation, and Independent Living. The study examined research on issues 

that affect people with disabilities living in Indian Country. It was developed and guided to 

completion in collaboration with American Indian and Alaska Native (AI/AN) representatives of 

people with disabilities, their families, and tribal community leaders. The report discussed the 

perspectives of AI/AN people with disabilities, tribal leaders, and federal agency representatives 

identified as productive in meeting the needs of people with disabilities residing in tribal lands. It 

also included an assessment of and recommendations for improvements in government-togovernment (state to sovereign tribal to U.S. government) relationships needed for effective 

coordination across existing federally funded projects and programs. In addition, NCD developed 

a toolkit that provides resources for consumers; tribal communities; and people at state, local, and 

federal levels: Understanding Disabilities in American Indian and Alaska Native Communities: 

Toolkit Guide. 

58
The People with Disabilities on Tribal Lands report noted the unique needs of AI/AN 

populations: their rate of disabilities is disproportionately higher than that of all population 

groups, and this situation is compounded by factors such as high poverty, elevated school dropout 

rates, geographic isolation from state or local district rehabilitation and health care, and limited 

employment options. Overall, the study documented that AI/AN people with disabilities who live 

in tribal lands are not receiving the services to which they are entitled. Based on a review of the 

literature and interviews with tribal officials and federal program administrators, the report 

discussed barriers and challenges that hamper or prevent the development of meaningful 

government-to-government relationships regarding issues affecting people with disabilities in 

Indian Country. The study identified the following major barriers: fragmentation of services 

across federal agencies and offices; lack of federal staff knowledge of tribal sovereignty and the 

federal trust responsibility to AI/AN people; limited enforcement of laws protecting people with 

disabilities in tribal lands; lack of clarity about legal enforcement options; limited local tribal 

planning to protect and support people with disabilities; and lack of involvement of tribal leaders 

and tribal members in the design, development, and implementation of programs. 

The report provided recommendations in each of five major categories: 

! fulfilling the federal trust responsibility to AI/AN tribes and the national mandate for the 

elimination of discrimination against people with disabilities; 

! ensuring meaningful consultation with and involvement of people with disabilities and 

tribal leaders; 

! providing tribes with better access to federal resources and funded programs; 

! developing cultural competence within federal agencies and increasing agencies’ 

interaction with tribes; and 

! including disability issues among tribal priorities and federal initiatives in tribal 

communities. 

A major conclusion of the study was that “effective collaboration among sovereign tribal 

governments and federal and state programs is key to successfully addressing the issues and needs 

of tribal members with disabilities and descendants living in Indian Country. AI/AN people with 

disabilities and advocates must be invited to the table for key conversations regarding application 

of disability policies, initiatives, and program development and resource allocation.” As NCD 

stated, “Unless and until this government-to-government collaboration occurs, AI/AN people with 

disabilities will continue to remain locked out of the protections and services guaranteed to all 

Americans with disabilities.” 

On May 1, 2003, NCD published Addressing the Needs of Youth with Disabilities in the Juvenile 

Justice System: The Status of Evidence-Based Research, which evaluated the status of key 

policies and programs that affect children and youth with disabilities, who have often been 

59
overlooked by service and research programs. This study grew out of NCD’s awareness that 

children and youth with disabilities have increasingly become overrepresented in the juvenile 

justice system and that a significant proportion of youth in the juvenile justice system have 

education-related disabilities and are eligible for special education and related services under 

IDEA. The study identified a tremendous gap in empirically based knowledge about children and 

youth with disabilities, especially those who are either at risk of delinquency or involved in the 

juvenile justice system. This information vacuum leaves behind a spectrum of largely unanswered 

questions involving distinct sets of policy issues ranging from the potentially conflicting 

philosophies underlying existing laws to what is known about effective prevention, intervention, 

and delinquency management strategies and efforts to ensure that the rights and needs of children 

and youth with disabilities are addressed. In response to this information gap, the report 

recommended “research that focuses on establishing the true prevalence of youth with disabilities 

of different types among at-risk populations in schools and across all stages of the juvenile justice 

system; the needs/services gap, including compliance with disability law; the causes of 

overrepresentation, where it exists, of youth with disabilities in the juvenile justice system, 

especially correctional facilities; and effective systems-level and program-level approaches, 

including federal laws, for addressing the needs of these youth, including particular attention to 

the types of programming most effective for youth from diverse racial/ethnic and cultural 

backgrounds.” 

Other major recommendations in the report were the following: 

! identifying a range of strategies to enforce and promote compliance with federal disability 

law as it relates to children and youth with disabilities who are at risk of delinquency; 

! increasing funding and resources to schools and the juvenile justice system to ensure that 

youth with disabilities receive appropriate services; 

! designating a single federal agency whose sole focus is to ensure that the rights and needs 

of youth with disabilities entering or in the juvenile justice system are addressed; and 

! undertaking a comprehensive assessment, including research studies, to determine the 

most effective programs and policies in schools, communities, and the juvenile justice 

system while ensuring that a balanced approach is taken to funding diverse programs and 

policies. 

In its letter transmitting the report to President Bush, NCD expressed the hope that “your 

administration can use the findings and recommendations from this research study to help shape 

the scope and direction of future federal initiatives designed to tackle delinquency prevention and 

juvenile justice,” and offered NCD’s assistance in working with federal agencies and other 

stakeholders inside and outside the government to devise strategies for delinquency prevention 

and juvenile justice that work. 

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In addition to these three completed reports, the study of employment-related and return-to-work 

initiatives, under way at the time this report goes to press, illustrates the information NCD intends 

to provide through its Investing in Independence initiative. NCD has undertaken an examination 

of the way SSA is administering its SSI and DI programs and, in particular, its efforts to heighten 

its focus and effectiveness on transitioning beneficiaries to work. This study is designed to 

address the following questions: 

! What are the evidence-based practices that promote the return to work of working-age 

beneficiaries of the DI and SSI programs? 

! What policy changes are needed, given recent trends in program participation and 

employment? 

! Are there proven and documented practices that work best for some populations of people 

with disabilities and not others? 

! Which factors ensure that documented and evidence-based practices could be adapted or 

adopted by SSA and other entities that seek to ensure the employment of people with 

disabilities? 

In 2005, NCD plans to evaluate the effectiveness of labor market interventions in addressing the 

employment of people with disabilities. The high number of people with disabilities who are 

unemployed or underemployed has been a chronic problem in the United States. The Federal 

Government has had to take a multifaceted approach (e.g., legislation, rehabilitation, employment 

programs, and work incentives) to increase the number of active labor market measures that are 

directed at the problems of unemployment and underemployment. In some instances, the Federal 

Government has partnered with businesses and industries in using various labor market 

interventions. The Federal Government and the private sector believe that these interventions will 

be instrumental in helping people with disabilities gain employment or improve their employment 

earnings potential. NCD is interested in determining the accuracy of these claims; the 

effectiveness of the different interventions and programs in place; the subgroups of people with 

disabilities who would benefit the most; and the roles, expectations, experiences, benefits, and 

level of employer satisfaction. This NCD study will examine the effectiveness of the 

aforementioned types of labor market interventions on increasing the employment of people with 

disabilities in the United States. 

Similarly, NCD intends to evaluate the current use of tax incentives for businesses and places of 

public accommodation as well as personal federal tax provisions of particular interest to people 

with disabilities. This study will evaluate the ability of business incentives and other provisions 

such as individual exemptions and deductions to encourage increased opportunity and 

accessibility. It will also make recommendations for increasing availability, awareness, and use of 

these incentives. The study will evaluate the extent to which tax credits, personal exemptions 

(such as medical deductions and the standard deduction available for individuals who are blind), 

and other financial incentives have been or could be used to increase access to employment, 

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housing, transportation, health care, long-term services, and technology. A recent General 

Accounting Office report found that tax credits have had a limited effect on the employment of 

people with disabilities, noting that a very small proportion of corporate and individual taxpayers 

with a business affiliation use the tax credits that are available to encourage the hiring, retention, 

and accommodation of workers with disabilities and that information on the effectiveness of 

incentives is limited and inconclusive. It is probable that there is an equal lack of information and 

understanding of financial incentives that promote a range of independent living activities. NCD 

will seek information on the extent to which these incentives reduce society’s costs. The study 

will examine the implications of expanding tax credits or deductions and assess whether better 

coordination of government efforts, clarification of tax incentive provisions, and increased 

outreach and education would increase usage. 

In March 2004, NCD awarded a contract to the National Disability Institute, a program of the 

National Cooperative Bank Development Corporation, to conduct a research study examining 

critical issues surrounding the configuration, financing, and delivery of long-term services and 

supports financing and systems reform. This research will focus on (1) current level(s) and type(s) 

of involvement by the Federal Government in a range of systems and financing for long-term 

services and supports, (2) current and projected future needs for long-term services and supports 

among people with disabilities and the elderly, (3) gaps in long-term services and supports, (4) 

key features of future financing and systems reforms for long-term care, (5) locales that have 

incorporated indicators of cohesive and comprehensive reform into their policy and service 

systems, (6) major challenges and barriers that locales face in moving toward financing and 

systems reform for cohesive and comprehensive long-term services and supports, and (7) 

promising policy levers and policy changes. Through this research, NCD will focus its attention 

and resources on an impending crisis in American domestic policy. 

Through such studies, NCD expects to provide the administration and Congress with concrete 

information and suggested approaches for making disability policy decisions and achieving 

maximum community integration for Americans with disabilities. 

NCD has also stood ready to speak up in favor of measures that would further the implementation 

of the NFI. Thus, NCD commended the administration for its proposed New Freedom Initiative 

Medicaid Demonstrations Act of 2003, which would help Americans with disabilities transition 

from nursing homes or other institutions into community-based living settings. NCD noted that in 

its 2002 report National Disability Policy: A Progress Report it had recommended that people 

with disabilities have appropriate input into the allocation of funds in CMS’s budget to assist with 

demonstration projects and a range of community-based activities throughout the life of the 

initiative. In NCD’s view, the administration’s 2003 proposals reflected NCD’s recommendations 

by addressing barriers to home- and community-based care under Medicaid. The legislation 

would address a number of important issues vital to a person’s ability to live in the community 

through the following proposed demonstration projects: Money Follows the Individual 

Rebalancing Demonstration, Demonstration on Respite for Caregivers of Adults, Demonstration 

on Respite for Caregivers of Children with Substantial Disabilities, Demonstration to Address 

Shortages of Community Direct Care Workers, and Demonstration of Home and Community62
Based Alternatives to Psychiatric Residential Treatment Facilities for Children. In addition, the 

bill contains proposed changes that would give states the option of providing Medicaid home- and 

community-based services for up to 90 days while final Medicaid eligibility is being determined 

and that would remove disincentives for people with disabilities to return to work by protecting 

the Medicaid health insurance coverage of spouses, if those spouses also have a disability. 

NCD Chairperson Frieden declared, 

NCD applauds the President’s new legislative proposal, which will help eliminate many 

barriers to full participation in community life for people with disabilities. NCD supports 

the President’s commitment to changing policies that unnecessarily confine people with 

disabilities to living in institutions. Helping people with disabilities who want to live in 

their own homes by providing community-based programs that foster independence and 

community participation is good public policy. Congress should act quickly to enact this 

proposal. 

C. Monitoring Enforcement and Reauthorization Input 

Despite having shifted its primary focus from studying the federal implementation and 

enforcement of civil rights laws to addressing more broadly those federal policies and programs 

that advance the independence, integration, and the full participation of people with disabilities in 

society, NCD has also continued its civil rights monitoring efforts. In February 2003 NCD issued 

Rehabilitating Section 504, a study of federal enforcement of Section 504 of the Rehabilitation 

Act of 1973. The report focused on the enforcement activities of five key federal agencies: ED, 

DOL, HHS, the State Department, and DOJ. NCD found that although the Federal Government 

consistently asserted its strong support for the civil rights of people with disabilities, the federal 

agencies charged with enforcement and policy development under Section 504 had, to varying 

degrees, lacked any coherent and unifying national leadership, coordination, accountability, and 

funding. NCD research documented the following kinds of deficiencies: 

Agencies have not maintained consistency in their Section 504 programs’ operational 

leadership and have given a low priority to the enforcement of Section 504, and there are 

significant differences in their enforcement efforts. 

[N]one of the agencies examined for this report [has] initiated funding terminations to 

enforce Section 504 against grantees that violate the law. 

Agencies have given low priority to collecting and analyzing Section 504 program data, 

and there are major differences in their data efforts. None of the agencies [has] developed 

information systems that comprehensively collect, aggregate, or summarize detailed 

information about complaints or compliance reviews and their outcomes. 

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Agencies have not received and have not been able to devote sufficient funding and 

resources to their Section 504 programs. 

All five agencies, with the exception of the Department of State, have invested significant 

resources in providing written and verbal technical assistance to their grant recipients. 

Rehabilitating Section 504 provided recommendations for addressing the shortcomings that had 

hindered Section 504 compliance and enforcement. Among the suggested strategies and 

approaches, NCD recommended that the Federal Government conduct periodic and thorough 

Section 504 self-evaluations, improve the collection and dissemination of data about Section 504 

enforcement efforts, bolster DOJ resources and guidance to federal agencies on Section 504 

enforcement, and apply successful practices in Section 504 technical assistance and enforcement 

used by federal agencies. 

In January 2003, NCD began monitoring the 2003 reauthorization of five laws important to 

people with disabilities: Temporary Assistance for Needy Families (TANF), the Workforce 

Investment Act (WIA), IDEA, the Transportation Equity Act, and the Higher Education Act 

(HEA). During 2003, NCD published TANF and Disability—Importance of Supports for Families 

with Disabilities in Welfare Reform and forwarded it to the congressional committees handling 

TANF reauthorization. On March 11, 2004, NCD released an op-ed article on the reauthorization 

of the TANF program, in which it declared, 

It will be important that the new law establish policies that reflect both the intention and 

desire of people with disabilities to work and the reality that some individuals may have 

significant work circumstances requiring long-term assistance. 

While the TANF program is not specifically directed towards individuals with disabilities, 

research data indicate far-reaching effects of this program on people with disabilities. The 

General Accounting Office numbers are startling—over 40 percent of TANF recipients 

have at least one physical or mental impairment or they have a child with a disability, and 

eight percent of TANF families have both an adult and a child with a disability. TANF’s 

work requirements and lifetime limits to benefits, which are key elements of welfare 

reform, pose challenges for state and local agencies as they attempt to address the unique 

needs of families with individuals with a disability. These challenges must be directly 

addressed in the reauthorization of TANF if welfare reform is to be meaningful for a large 

number of TANF recipients. If TANF is to truly help people with a disabilities fulfill their 

potential and move to work, the proper supports must be in place and continue as they exit 

the TANF program. 

NCD sent a letter to the congressional committees with jurisdiction over WIA reauthorization, 

particularly addressing the reauthorization of the Vocational Rehabilitation Act. NCD also sent 

letters to the congressional committees with jurisdiction over IDEA reauthorization regarding (1) 

NCD’s responses to H.R.1350, the House version of IDEA reauthorization, and NCD’s 

recommendations for IDEA reauthorization; (2) the proposed use of vouchers for students with 

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disabilities in the Parental Choice Act, along with a policy paper NCD had issued in 2003, School 

Vouchers and Students with Disabilities; and (3) effective implementation and enforcement of 

IDEA. NCD provided oral and written testimony at a joint hearing of the House Committee on 

Transportation and Infrastructure and the House Committee on Education and the Workforce on 

“Coordination of Human Services Transportation.” 

During 2003, NCD also completed a study of access to higher education for people with 

disabilities, People with Disabilities and Postsecondary Education, which included 

recommendations for reauthorization of the HEA. It provided a summary of the paper to the 

congressional committees with jurisdiction over the reauthorization of the HEA. In March 2004, 

NCD followed up by issuing a Higher Education Act Fact Sheet to assist Congress in its 

deliberations. NCD also published Students with Disabilities Face Financial Aid Barriers (2003) 

to highlight the difficulties facing some students with disabilities in paying for college and 

graduate school. 

D. The “Righting the ADA” Initiative 

In fall 2002, NCD took its special responsibility as originator of the ADA and its ongoing 

statutory mission to monitor the ADA’s implementation to a new level. The Council inaugurated 

a major initiative to suggest remedial approaches to address serious problems created by court 

decisions interpreting and applying the ADA. Spurred by concerns expressed at a series of 

meetings with ADA stakeholders, NCD became increasingly troubled by a series of Supreme 

Court decisions that take restrictive and antagonistic approaches to the ADA, with the result that 

the civil rights of people with disabilities have been significantly diminished. NCD’s initiative, 

which eventually was called “Righting the ADA,” documents and explains the problems that such 

decisions create, ultimately seeking to advance legislative proposals to reverse their impact. The 

initiative began with the development of a series of policy briefing papers published on NCD’s 

Web site that explain the problematic aspects of the Supreme Court decisions and describe their 

negative implications. To date, 19 such papers have been issued under the title Policy Brief 

Series: Righting the ADA Papers; they are found on the NCD Web site at 

http://www.ncd.gov/newsroom/publications/policybrief. Several more papers will be added to the 

series, and more may become necessary, depending on future Supreme Court rulings on the ADA. 

The series of briefs will culminate in a comprehensive report that will present legislative 

proposals and options for remedying the damaging effects of the Supreme Court’s decisions. 

NCD also issued several other reports that, while they were not formally part of the Righting the 

ADA series, provided additional information regarding ADA enforcement and implementation. In 

2003 NCD issued a paper discussing a pending ADA case that could have major ramifications on 

the efficacy and breadth of the ADA—Tennessee v. Lane: The Legal Issues and the Implications 

for People with Disabilities. Also in 2003, NCD issued Application of the ADA to the Internet 

and the Worldwide Web, which incorporates both NCD’s ongoing interest in technology issues 

and its ADA monitoring function. 

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E. International Efforts and the U.N. Convention 

NCD has continued to play a leading role in seeking to promote foreign policy consistency with 

the values and goals of the ADA and the NFI. NCD has been designated by the State Department 

as the official liaison with the special rapporteur on disability at the United Nations and as a 

representative to the Third Committee on Social Development and Human Rights regarding the 

development of U.S. foreign policy on disability issues. In September 2003, NCD issued Foreign 

Policy and Disability: Legislative Strategies and Civil Rights Protections To Ensure Inclusion of 

People with Disabilities. The report was a follow-up to NCD’s 1996 Foreign Policy and 

Disability report, which identified barriers to access for people with disabilities in U.S. foreign 

assistance programs. In the 2003 report, NCD concluded that the inclusion of people with 

disabilities in U.S. foreign policy will occur only when specific legislation is enacted to achieve 

that purpose. The report reviewed a number of models that Congress has adopted for linking 

human rights and foreign policy that could be adapted to ensure the inclusion of people with 

disabilities. In particular, the report recommended that Congress amend the Foreign Assistance 

Act to (1) ensure the inclusion of people with disabilities in all U.S. programs by requiring every 

U.S. agency operating abroad to operate in a way that is accessible and inclusive of people with 

disabilities, (2) establish a disability advisor at the State Department, and (3) create an office on 

Disability and Development at USAID. 

The report was released at a very well attended event on Capitol Hill that featured a press 

conference and briefing. Speakers at the press conference included Senator Tom Harkin, 

Representative Jim Langevin of the Bipartisan Disabilities Caucus, and NCD member Kathy 

Martinez. The featured speakers at the briefing included, in addition to NCD members Milton 

Aponte and Kathy Martinez, Eric Rosenthal of Mental Disability Rights International and Arlene 

Kanter of Syracuse University School of Law, who had helped write the report for NCD. 

Following up on the report, NCD staff met with several congressional offices, including the staff 

of Representatives Doug Bereuter, Diane Watson, and Amory Houghton and Senator Richard 

Shelby to discuss the report and proposals to incorporate disability language into the Iraq and 

Afghanistan reconstruction/appropriation bills. NCD also met with Senator Harkin’s staff to 

follow up on the report’s recommendation of a Millennium Challenge Account, which would 

establish a new development agency and would tie development assistance to countries that 

demonstrate performance in specified areas. 

NCD’s report and follow-up helped precipitate an amendment to the Foreign Operations 

appropriations bill to require that, in determining a country’s eligibility for funds, the Millennium 

Challenge Account include as one of its criteria the country’s commitment to providing 

opportunities for people with disabilities. When Senator Harkin offered this amendment, he asked 

that the executive summary from NCD’s report, along with the report transmittal letter from Lex 

Frieden, be read into the Congressional Record. The Millennium Challenge Act of 2003 was 

enacted as Title II of the Consolidated Appropriations Act, 2004 (Pub. L. 108-199); it established 

the Millennium Challenge Corporation (MCC). A provision of the Act (Sec. 607(b)(1)(B)) 

establishes that one of the criteria for a country’s eligibility for funds through the Millennium 

Challenge Account is “respect [for] human and civil rights, including the rights of people with 

66
disabilities.” Later language requires that eligibility determination “be based, to the maximum 

extent possible, upon objective and quantifiable indicators of a country’s demonstrated 

commitment to the criteria in subsection (b).” 

Another section of the Consolidated Appropriations Act (Section 587) added a new provision 

with the heading “Disability Access.” It requires the Administrator of USAID to “seek to ensure 

that programs, projects, and activities administered by USAID in Afghanistan comply fully with 

USAID’s Policy Paper: Disability issued on September 12, 1997.” It directs the Administrator to 

submit by December 31, 2004, a report to the Appropriations Committee describing how the 

needs of people with disabilities were met in the development and implementation of USAID 

programs, projects, and activities in Afghanistan. In addition, the act requires the Administrator, 

in consultation with other appropriate departments and agencies, the Architectural and 

Transportation Barriers Compliance Board, and nongovernmental organizations with expertise in 

the needs of people with disabilities, to develop and implement, within 180 days of enactment of 

the Act, appropriate standards for access for people with disabilities for construction projects 

funded by USAID. 

Title II of the Emergency Supplemental Appropriations Act for Defense and for the 

Reconstruction of Iraq and Afghanistan, 2004, titled “Iraq and Afghanistan Reconstruction and 

International Assistance,” contains a provision that requires the Administrator of the Coalition 

Provisional Authority to “seek to ensure that programs, projects and activities funded under this 

heading, comply fully with USAID’s Policy Paper: Disability issued on September 12, 1997.” In 

accordance with the new statutory requirements, the requests for proposal (RFPs) for Iraq 

reconstruction have begun to contain the following language under “Special Contract 

Requirements”: 

B. COMPLIANCE WITH UNITED STATES AGENCY FOR INTERNATIONAL 

DEVELOPMENT (USAID) DISABILITY POLICY MEMORANDUM 

The contractor shall follow the guidance provided in the United States Agency for 

International Development (USAID) Disability Policy Paper, dated September 12, 1997. 

The objectives of the USAID policy on disability are: (a) to enhance the attainment of 

United States foreign assistance program goals by promoting the participation and 

equalization of opportunities of individuals with disabilities in USAID policy, country-and 

sector strategies, activity designs and implementation; (b) to increase awareness of issues 

of people with disabilities both within USAID programs and in host countries; c) to 

engage other U.S. government agencies, host country counterparts, governments, 

implementing organizations and other donors in fostering a climate of nondiscrimination 

against people with disabilities; and (d) to support international advocacy for people with 

disabilities. 

Another major recommendation to Congress and the administration in the 2003 Foreign Policy 

and Disability report was to support the drafting of a new U.N. Convention on the Rights of 

67
People with Disabilities in the spirit of the ADA and other civil rights laws that would promote 

the full inclusion of people with disabilities in society. This recommendation reiterated a position 

in favor of such a convention that NCD had announced in September 2001. Under Chairperson 

Frieden’s leadership, the Council has taken an increasingly visible and important role in 

facilitating U.S. support and involvement in the development of a convention. In February 2003, 

NCD cosponsored (with the U.S. International Council on Disabilities, the World Bank, and 

Yoshiko Dart) a meeting in Washington, D.C., to provide up-to-date information to the disability 

community on the development of a United Nations convention on the rights of people with 

disabilities and efforts to promote a disability-inclusive foreign assistance policy in the United 

States. On May 8, 2003, Representative Tom Lantos introduced H. Cong. Res. 169, expressing 

the belief of Congress that the United States should play a leading role in drafting a U.N. 

convention that affirms the rights of people with disabilities. The bill was cosponsored by 

Representatives Henry Hyde (R-IL) and Jim Langevin; it was referred to the House Committee on 

International Relations. Representative Lantos’s office asked for NCD’s comments on the 

resolution. In its advisory role to Congress, NCD recommended that Resolution 169 be supported 

as drafted. 

On June 12, the House Committee on International Relations passed Resolution 169 by 

unanimous consent. 

The convention was discussed before a U.N. ad hoc committee in June 2003. On June 16, the first 

day of the ad hoc meeting, NCD Chairperson Lex Frieden and former NCD member John D. 

Kemp were guests on Voice of America’s “Talk to America,” a daily international call-in talk 

show. The show focused on the importance of a U.N. convention for the human rights of people 

with disabilities. On June 24, Frieden conducted a news conference at the U.N. to focus attention 

on such a convention. During the press conference, Frieden said, “Many countries still require the 

guidance of international compacts to ensure the human rights of people with disabilities. NCD 

further believes that, as the world evolves into a global society, it is important to have meaningful 

international standards and structures in place to protect people with disabilities from 

discrimination and abuse.” 

In October 2003, NCD issued UN Disability Convention—Topics at a Glance: History of the 

Process, which summarized the process of trying to develop the convention and provided an 

update on recent developments. Frieden, in his joint roles as chairperson of NCD and president of 

Rehabilitation International, moderated a panel discussion on the importance of the U.N. 

convention on the human rights of people with disabilities during the 2003 observance of 

International Day of Disabled Persons on December 3 at U.N. headquarters in New York City. On 

January 21, 2004, NCD sent a letter to House Majority Leader Tom DeLay requesting his 

assistance in scheduling Resolution 109 for a vote as soon as possible. NCD expressed its view 

that “it would well serve the people of the United States to be involved in this historic process and 

ensure that this Convention is consistent with the Americans with Disabilities Act and the U.S. 

Constitution. The United States is a leader on disability around the world. We must continue to 

show our leadership through U.S. support and involvement in the proposed Convention so as to 

protect, preserve, and enforce the rights of people with disabilities everywhere.” 

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On March 30, 2004, the U.S. Congressional Human Rights Caucus held a briefing on the U.N. 

Convention on the Human Rights of People with Disabilities. NCD member Kathy Martinez was 

among those testifying. Other witnesses included Ambassador Luis Gallegos, Permanent 

Representative of Ecuador to the United Nations and Chair of the U.N. Ad Hoc Committee 

drafting the convention; Richard Thornburgh, former U.S. Attorney General and vice chairman of 

the World Committee on Disability; and Alan Reich, president of the National Organization on 

Disability and chairman of the World Committee on Disability. 

F. Other Activities, Pending Issues, and the Future 

NCD continued to devote attention to mental health issues and services. In September 2002, it 

issued The Well Being of Our Nation: An Inter-Generational Vision of Effective Mental Health 

Services and Supports. The report examined some of the root causes of the mental health crisis 

and sought to “connect the dots” concerning the dysfunction of a number of public systems that 

are charged with providing mental health services and supports for children, youth, adults, and 

seniors. One of the most significant findings of the report was that children and youth who 

experience dysfunction at the hands of mental health and educational systems are much more 

likely to become dependent on failing systems that are supposed to serve adults. Similarly, adults 

whose mental health service and support needs are not met are very likely to become seniors who 

are dependent on failing public systems of care. In this way, hundreds of thousands of children, 

youth, adults, and seniors experience poor services and poor life outcomes, literally from cradle to 

grave. While recognizing that no single antidote exists for the current dysfunction of the public 

mental health system, the report declared that “visionary leadership, adequate funding and 

expansion of proven models (including consumer-directed programs) are essential ingredients.” 

Most important, the report called for “a dramatic shift in aspirations for people with psychiatric 

disabilities.” 

Along with holding the meetings and issuing the reports on AI/AN people with disabilities, 

discussed above, NCD engaged in other activities related to diversity and participation by 

culturally diverse populations. In 2003, it issued a revised and updated version of Language 

Assistance Plan for Implementation of Executive Order 13166—Improving Access to Services for 

Persons with Limited English Proficiency. Also in 2003, NCD created a Cultural Diversity 

Initiative (CDI). Guided by NCD’s Cultural Diversity Advisory Committee, the CDI consists of 

three related projects designed to promote within federal agencies public awareness, advocacy, 

networking, policy-making, and research about people with disabilities from diverse cultures. The 

CDI’s primary goal is to provide definitive information about promising practices for successful 

outreach to people with disabilities from diverse cultures in relation to their rights and 

opportunities under various civil rights laws. A secondary goal is to promote capacity-building 

among federal agencies for integrating issues that affect people with disabilities from diverse 

cultures into the federal agenda. Immediate benefits include contributing to the knowledge base 

and understanding among federal agencies about how to meaningfully include people with 

disabilities from diverse cultures in agency activities. 

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The three separate but interrelated projects of the CDI are research, the development of a 

“toolkit,” and a national forum. The research aspect of the CDI involved reviewing existing 

literature on outreach to people with disabilities from diverse cultures, including social marketing 

and outreach efforts by federal agencies and nonprofit organizations. This effort resulted in the 

publication of Outreach and People with Disabilities from Diverse Cultures: A Review of the 

Literature. The toolkit project aims to develop specific resources federal agencies can use to 

enhance their outreach to people with disabilities from diverse cultures. This toolkit will include 

fact sheets on federal disability policies; information on designing and managing strategic 

outreach initiatives; and models of promising outreach policies, programs, and products. 

The “Outreach for All Forum” was designed to bring about face-to-face dialogue among people 

with disabilities, their advocates, and federal officials. Its purpose was to give life to the idea of 

grassroots-government collaboration and to prompt communication about outreach approaches 

and practices. On July 28, 2003, NCD hosted the forum in Washington, D.C., as a working 

meeting that brought together people from various cultures across the country with senior 

officials from nine federal agencies and one White House initiative. Sixty people spent a full day 

in work sessions that focused on finding ways to create a two-way street for people with 

disabilities who come from diverse communities and government agencies that have a 

responsibility for providing appropriate services and for supporting empowerment and movement 

toward full participation in society. 

The participants were an array of people with and without identified disabilities, including youth. 

NCD also brought to the table government officials from ED, HHS, HUD, DOJ, DOL, DOT, 

SSA, FCC, EEOC, and the White House Initiative on Asian and Pacific Islanders with 

Disabilities. The forum was further enriched by diverse heritages among many of the federal 

agency representatives who were also people with disabilities. 

During the forum work sessions, participants developed recommendations for the cultural 

diversity resource toolkit and for an outreach road map of suggested actions beyond the forum. 

Among the recommendations were calls for (1) a presidential order clarifying the need and role 

for federal agencies around outreach as national demographics shift and (2) interagency efforts to 

address ways the Federal Government can provide more accessible programs and services 

through seamless, culturally sensitive, and simplified processes. The results of the proceedings 

were summarized in Outreach for All Forum Summary Paper: Paths to Support Individual 

Empowerment of People with Disabilities from Diverse Cultures. 

Work on many of the issues described in previous sections of this report continues. The Investing 

in Independence series, a key initiative of the current Council, is still in its early stages; various 

critical studies are under way or in the planning stages. NCD is also in the process of developing 

a pivotal report as part the “Righting the ADA” initiative; it will document and explain the 

problems created by negative ADA decisions of the Supreme Court and present legislative 

proposals to reverse their impact. Such proposed legislation will seek to return the ADA to its 

original course by (1) reinstating the scope of protection the Act affords, (2) restoring certain 

previously available remedies to successful ADA claimants, and (3) repudiating or limiting 

70
certain inappropriate and harmful defenses that have been grafted onto the carefully crafted 

standards of the ADA. NCD will continue to monitor and respond to future significant court 

decisions as they arise. In April 2004 NCD published an RFP for a study of ADA’s impact on 

people with disabilities and the effects of the Supreme Court’s ADA decisions on them. This 

study will provide additional information, data, and guidance for the continuing development and 

promotion of the “Righting the ADA” initiative. 

In January 2004, NCD issued Improving Federal Disability Data and revisited an issue that has 

been an ongoing concern of the Council since its inception—getting better data on disabilities 

from the U.S. Census process. The report stressed the importance of having accurate data: 

Census data are used by educators, policymakers, and community leaders and directly 

affect funding for many programs critical to individuals with disabilities, including 

programs for health care, transportation, employment training, and housing. Federal, state, 

and county governments use Census information to guide the annual distribution of 

hundreds of billions of dollars in critical services and supports. 

NCD observed, however, that Census efforts regarding disability data remain inadequate: “While 

there have been some improvements in the use of a few disability questions and interview 

methodology in the Decennial Censuses for the past 30 years, those improvements have been 

small and incremental.” Among the major recommendations were that (1) Congress should 

legislatively require an official and accurate enumeration of Americans with disabilities through 

the Decennial Census and through related national Census-like efforts such as the American 

Community Survey, (2) the Census Bureau should immediately revise Census questions for the 

Year 2010 Census (and the American Community Survey) to reflect the ADA definition of 

disability, and (3) the Bureau of Labor Statistics (BLS) should finish with all due haste its 

redesign of disability employment questions for the BLS Current Population Survey. NCD will 

continue to push for Federal Government agencies to obtain and disseminate better data on 

disabilities. 

NCD expects to continue playing a major role in advocating for a U.N. Convention on the Rights 

of People with Disabilities in the hope of helping the U.N. embrace the fundamental objectives of 

independence, integration, equality, and full participation of people with disabilities. 

G. Perspectives of Chairperson Frieden 

Having served as the executive director of NCD at its inception as an independent agency and 

now having the privilege of serving as its chairperson, I have what might be called a long view of 

Council history. 

The Council plays a unique role in reviewing, recommending, and implementing policies 

affecting the lives of people with disabilities. I am proud to observe that since its founding, the 

Council has maintained its steadfast commitment to ensuring equal opportunity for people with 

71
disabilities and improving their quality of life. The Council has never compromised its 

independence, and it has routinely and respectfully sought the diverse views of all sectors of the 

disability community. 

The Council continues to receive approbation for its role in conceiving the ADA. Less visible has 

been the extent of the Council's influence on other very important disability issues. Without 

question, Council efforts over the past 20 years have had a profound effect on the ability of 

people with disabilities to be full participants in the American way of life. 

For two decades, the Council has brought issues affecting the lives of people with disabilities to 

the attention of public policymakers, produced dozens of insightful reports, and generated scores 

of well-conceived and well-received recommendations for the consideration of legislators and 

administrators. It has served four presidents and their administrations; Congress; and, most 

important, people with disabilities, their families, and advocates throughout our great land. 

NCD has been well served by its members—some of them high-profile heroes of the disability 

rights and independent living movements as well as numerous others who are less well-known but 

equally heroic, committed, and knowledgeable members of our community. The Council's 

effectiveness may also be attributed to another factor: richness in diversity. Throughout its 

history, NCD has been characterized by diversity among its members and staff—diverse 

disability types, races, economic backgrounds, experiences, and areas of expertise. The Council 

has always been one of the most broadly representative units of government. 

The Council’s job will never be done. Despite improvements in our laws and policies, and despite 

the progress that we as a nation have made, we have many troublesome challenges yet to face. 

People with disabilities face great challenges in their search for employment and economic selfsufficiency. We are struggling to secure adequate health care and rehabilitation. Housing and 

transportation, fundamental to living independently, remain difficult to obtain and are largely 

unavailable in some areas of the country. Personal assistance is vital for maintaining the health, 

mobility, and productivity of many people with disabilities, yet we cannot ensure the provision of 

these services to most people in our communities who need them. Mental health services, like 

other disability services, are badly fragmented, and, in large part, they are built upon outdated 

paradigms that foster dependence rather than independence. These are among the challenges 

faced by people with disabilities every day, and it is the Council's duty to see that they remain 

before the President and his administration, Congress, and the public at large. 

I predict the Council will have an even more important role in future events than it has had in the 

past. Our society faces many new questions about the implications of disability in regard to 

changing demographics, expanding knowledge of human processes and genetics, breakthrough 

discoveries in science and technology, and the changing role of America in the global society. 

The opportunities and uncertainties that these changes are bringing call for even greater 

thoughtfulness and leadership from the Council. NCD members and staff are working now to 

address these challenges and opportunities, and it will continue to do so in the future. 

72
I have the honor and privilege of serving with 14 very dedicated members, and we are fortunate to 

be working with an equally dedicated staff. Our work together has been productive, and we are in 

the process of developing many important recommendations for improving the status and the 

quality of life of people with disabilities as well as helping President Bush bring to life the vision 

that he has conveyed in the New Freedom Initiative. 

To paraphrase the late Justin Dart, who, I am pleased to say, also served as a Council member, we 

are with you, we are part of you, we love you. Together, we shall achieve our goals of 

independent living, economic self-sufficiency and prosperity, and full participation in society. 

73
74
NCD Reports 

In addition to the numerous meetings, discussions, consultations, comments, briefings, press 

events, awards, conferences, and various other activities in which NCD has engaged, NCD has 

generated a huge quantity of documents over the past 20 years. NCD’s award-winning Web site 

makes available a large selection of different kinds of written products, including news releases, 

media advisories, articles, presentations, speeches, testimony, audiovisual broadcasts, 

correspondence, “NCD in the News” updates, and monthly issues of the NCD Bulletin. This 

section does not attempt to recount or summarize all these diverse documents, although they are 

often significant and informative. What follows is a list of the principal reports issued by NCD. 

The papers issued as part of the Righting the ADA series are listed separately. 

National Council on Disability Publications 

1984 

National Policy for Persons with Disabilities—Executive Summary 

1986 

Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with 

Disabilities—With Legislative Recommendations 

1988 

On the Threshold of Independence 

Implications for Federal Policy of the 1986 Harris Survey of Americans with Disabilities 

1989 

The Education of Students with Disabilities: Where Do We Stand? 

1991 

The Impact of Exemplary Technology-Support Programs on Students with Disabilities 

1992 

Wilderness Accessibility for People with Disabilities: A Report to the President and the Congress 

of the United States on Section 507(a) of the Americans with Disabilities Act 

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1993 

Furthering the Goals of the Americans with Disabilities Act Through Disability Policy Research 

in the 1990s: Summary of Proceedings 

Meeting the Unique Needs of Minorities with Disabilities: A Report to the President and the 

Congress 

ADA Watch—Year One: A Report to the President and the Congress on Progress in Implementing 

the Americans with Disabilities Act 

Progress in Advancing the Status of People with Disabilities Around the World: The Work of the 

United States Delegation to the Thirty-Third Session of the Commission for Social Development 

of the United Nations 

Serving the Nation’s Students with Disabilities: Progress and Prospects 

Sharing the Risk and Ensuring Independence: A Disability Perspective on Access to Health 

Insurance and Health-Related Services 

Study on the Financing of Assistive Technology Devices and Services for Individuals with 

Disabilities 

1994 

Inclusionary Education for Students with Disabilities: Keeping the Promise 

Making Health Care Reform Work for Americans with Disabilities: Summary Information on Five 

“Town Meetings” on Health Care Reform 

1995 

Disability Perspectives and Recommendations on Proposals to Reform the Medicaid and 

Medicare Programs 

Voices of Freedom: America Speaks Out on the ADA 

Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools 

Work for All of America’s Children 

The Americans with Disabilities Act: Ensuring Equal Access to the American Dream 

1996 

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Access to the Information Superhighway and Emerging Information Technologies by People with 

Disabilities 

Foreign Policy and Disability 

Achieving Independence: The Challenge for the 21st Century 

Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools 

Work for All of America’s Children—Supplement 

Guidance from the Graphical User Interface (GUI) Experience: What GUI Teaches About 

Technology Access 

Cognitive Impairments and the Application of Title I of the Americans with Disabilities Act 

1997 

National Disability Policy: A Progress Report (July 26, 1996–October 31, 1997)

Removing Barriers to Work: Action Proposals for the 105th Congress and Beyond

Outreach to Minorities with Disabilities and People with Disabilities in Rural Communities 

Equality of Opportunity: The Making of the Americans with Disabilities Act 

Impact of the Welfare Reform Legislation on Legal Immigrants with Disabilities

Assisted Suicide: A Disability Perspective Position Paper

1998 

National Disability Policy: A Progress Report (November 1, 1997–October 31, 1998)

Grassroots Experiences with Government Programs and Disability Policy

Discipline of Students with Disabilities: A Position Statement

Reorienting Disability Research

Brief Amicus Curiae of the National Council on Disability in Support of Respondents

Access to Multimedia Technology by People with Sensory Disabilities

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1999 

Lift Every Voice: Modernizing Disability Policies and Programs to Serve a Diverse Nation 

Implementation of the National Voter Registration Act by State Vocational Rehabilitation 

Agencies 

Annual Report to the President and Congress, Volume 19, Fiscal Year 1998 

Enforcing the Civil Rights of Air Travelers with Disabilities: Recommendations for the 

Department of Transportation and Congress 

2000 

Implementation Plan for Executive Order 13166—Improving Access to Services for Persons with 

Limited English Proficiency 

Transition and Post-School Outcomes for Youth with Disabilities: Closing the Gaps to PostSecondary Education and Employment 

Carrying on the Good Fight: Summary Paper From Think Tank 2000—Advancing the Civil and 

Human Rights of People With Disabilities From Diverse Cultures 

Closing the Gap: A Ten-Point Strategy for the Next Decade of Disability Civil Rights 

Enforcement 

Brief Amicus Curiae of the National Council on Disability in Support of Respondents 

Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities 

A Guide to Disability Rights Laws 

New Paradigms for a New Century: Rethinking Civil Rights Enforcement 

Federal Policy Barriers to Assistive Technology 

National Disability Policy: A Progress Report (November 1, 1998–November 19, 1999) 

National Council on Disability, Summary of International Watch Recommendations for NCD 

Consideration and Action 

2001 

Action Strategies for Effective Coalitions 

Reconstructing Fair Housing 

78
Brief Amicus Curiae of the National Council on Disability in Support of Respondents, Toyota v. 

Ella Williams 

The Sandoval Ruling

The Accessible Future

National Disability Policy: A Progress Report, November 1999–November 2000

Position Paper on Patients’ Bill of Rights Legislation

Inclusive Federal Election Reform

Applied Leadership for Effective Coalitions

Investing in Independence: Transition Recommendations for President George W. Bush

Annual Performance Report to the President and Congress—Fiscal Year 1999

Back to School on Civil Rights

From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves

2002 

The Well Being of Our Nation: An Inter-Generational Vision of Effective Mental Health Services 

and Supports 

An International Disability and Human Rights Convention: What You Need to Know About 

International Human Rights Law and Efforts to Gain Equality and Justice for People with 

Disabilities in the U.S. and Abroad 

A Reference Tool: Understanding the Potential Content and Structure of an International 

Convention on the Human Rights of People with Disabilities 

National Disability Policy: A Progress Report, December 2000–December 2001 

Individuals with Disabilities Education Act Reauthorization: Where Do We Really Stand? 

White Paper—Understanding the Role of an International Convention on the Human Rights of 

People with Disabilities 

Annual Performance Report to the President and Congress Fiscal Year 2001 

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Supreme Court Decisions Interpreting the Americans with Disabilities Act 

Supreme Court Decisions Interpreting the Americans with Disabilities Act (chart) 

Position Paper on Genetic Discrimination Legislation 

Principles for Genetic Discrimination Legislation 

Brief Amicus Curiae of the National Council on Disability in Support of Respondents, Chevron 

U.S.A. Inc. v. Mario Echazabal 

2003 

UN Disability Convention—Topics at a Glance: History of the Process 

Outreach and People with Disabilities from Diverse Cultures: A Review of the Literature 

Students with Disabilities Face Financial Aid Barriers 

Olmstead: Reclaiming Institutionalized Lives (unabridged online version) 

People with Disabilities and Postsecondary Education—Position Paper 

Foreign Policy and Disability: Legislative Strategies and Civil Rights Protections To Ensure 

Inclusion of People with Disabilities 

Tennessee v. Lane: The Legal Issues and the Implications for People with Disabilities 

Olmstead: Reclaiming Institutionalized Lives (abridged version) 

Understanding Disabilities in American Indian and Alaska Native Communities: Toolkit Guide 

People With Disabilities on Tribal Lands: Education, Health Care, Vocational Rehabilitation, 

and Independent Living 

National Disability Policy: A Progress Report, December 2001–December 2002 

Application of the ADA to the Internet and the Worldwide Web 

Addressing the Needs of Youth with Disabilities in the Juvenile Justice System: The Current 

Status of Evidence-Based Research 

School Vouchers and Students with Disabilities 

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TANF and Disability—Importance of Supports for Families with Disabilities in Welfare Reform 

Rehabilitating Section 504 

Language Assistance Plan for Implementation of Executive Order 13166—Improving Access to 

Services for Persons with Limited English Proficiency 

2004 

Improving Educational Outcomes for Students with Disabilities 

Higher Education Act Fact Sheet 

Improving Federal Disability Data 

Policy Brief Series: Righting the ADA Papers 

2002 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 1, The 

Americans with Disabilities Act 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 2, A Carefully 

Constructed Law 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 3, Significance 

of the ADA Finding that Some 43 Million Americans Have Disabilities 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 4, Broad or 

Narrow Construction of the ADA 

2003 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 5, Negative 

Media Portrayals of the ADA 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 6, Defining 

“Disability” in a Civil Rights Context: The Courts’ Focus on Extent of Limitations as Opposed to 

Fair Treatment and Equal Opportunity 

The Americans with Disabilities Act Policy Brief Series: Righting the ADA—No. 7, The Impact of 

the Supreme Court’s ADA Decisions on the Rights of Persons With Disabilities 

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Policy Brief Series: Righting the ADA—No. 8, The Implications of the Supreme Court’s Decision 

in Board of Trustees of the University of Alabama v. Garrett 

Policy Brief Series: Righting the ADA—No. 9, Chevron v. Echazabal: The ADA’s “Direct Threat 

to Self” Defense 

Policy Brief Series: Righting the ADA—No. 10, Reasonable Accommodation After Barnett 

Policy Brief Series: Righting the ADA—No. 11, The Role of Mitigating Measures in the 

Narrowing of the ADA’s Coverage 

Policy Brief Series: Righting the ADA—No. 12, The Supreme Court’s ADA Decisions and Per Se 

Disabilities 

Policy Brief Series: Righting the ADA—No. 13, The Supreme Court’s ADA Decisions Regarding 

Substantial Limitation of Major Life Activities 

Policy Brief Series: Righting the ADA—No. 14, The Supreme Court’s ADA Decisions Regarding 

the Not-Just-One-Job Standard 

Policy Brief Series: Righting the ADA—No. 15, The Supreme Court’s Decisions Discussing the 

“Regarded As” Prong of the ADA Definition of Disability 

Policy Brief Series: Righting the ADA—No. 16, The Supreme Court’s Decisions Regarding 

Validity and Influence of ADA Regulations 

Policy Brief Series: Righting the ADA—No. 17, The Supreme Court’s Rejection of the “Catalyst 

Theory” in the Awarding of Attorneys’ Fees and Litigation Costs 

Policy Brief Series: Righting the ADA—No. 18, The Supreme Court’s Refusal to Permit Punitive 

Damages in Private Lawsuits Under Section 202 of the ADA 

Policy Brief Series: Righting the ADA—No. 19, The Supreme Court’s Kirkingburg Decision and 

the Impact of Federal Safety Regulations in ADA Cases 

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Conclusion 

With the emergence of the disability rights and independent living movements, NCD has 

attempted to live up to its statutory mandate to be a voice within the Federal Government for 

“policies, programs, practices, and procedures that 

! guarantee equal opportunity for all individuals with disabilities, regardless of the nature or 

severity of the disability; and 

! empower individuals with disabilities to achieve economic self-sufficiency, independent 

living, and inclusion and integration into all aspects of society.” 

It has also sought to fulfill its role as the only federal agency charged with addressing, analyzing, 

and making recommendations on issues of public policy that affect people with disabilities 

regardless of age, disability type, perceived employment potential, economic need, functional 

ability, veteran status, or other individual circumstance. 

The preceding pages highlight much of what NCD has contributed to public policy concerning the 

ways that people with disabilities are treated and affected by government programs and activities. 

NCD is proud of its accomplishments and looks forward to helping people with disabilities 

achieve the American dream—a future that entails equal opportunity, self-sufficiency, inclusion, 

integration into all aspects of society, and a full measure of independence. 

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Appendix

Mission of the National Council on Disability

Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency with 15 members 

appointed by the President of the United States and confirmed by the U.S. Senate. The overall 

purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal 

opportunity for all individuals with disabilities regardless of the nature or significance of the 

disability and to empower individuals with disabilities to achieve economic self-sufficiency, 

independent living, and inclusion and integration into all aspects of society. 

Specific Duties 

The current statutory mandate of NCD includes the following: 

• Reviewing and evaluating, on a continuing basis, policies, programs, practices, and 

procedures concerning individuals with disabilities conducted or assisted by federal 

departments and agencies, including programs established or assisted under the 

Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities 

Assistance and Bill of Rights Act, as well as all statutes and regulations pertaining to 

federal programs that assist such individuals with disabilities, to assess the effectiveness 

of such policies, programs, practices, procedures, statutes, and regulations in meeting the 

needs of individuals with disabilities. 

• Reviewing and evaluating, 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 act as disincentives for individuals 

to seek and retain employment. 

• Making recommendations to the President, Congress, the Secretary of Education, the 

director of the National Institute on Disability and Rehabilitation Research, and other 

officials of federal agencies about ways to better promote equal opportunity, economic 

self-sufficiency, independent living, and inclusion and integration into all aspects of 

society for Americans with disabilities. 

• Providing Congress, on a continuing basis, with advice, recommendations, legislative 

proposals, and any additional information that NCD or Congress deems appropriate. 

• Gathering information about the implementation, effectiveness, and impact of the 

Americans with Disabilities Act of 1990 (ADA) (42 U.S.C. § 12101 et seq.). 

• Advising the President, Congress, the commissioner of the Rehabilitation Services 

Administration, the assistant secretary for Special Education and Rehabilitative Services 

within the Department of Education, and the director of the National Institute on 

85
Disability and Rehabilitation Research on the development of the programs to be carried 

out under the Rehabilitation Act of 1973, as amended. 

• Providing advice to the commissioner of the Rehabilitation Services Administration with 

respect to the policies and conduct of the administration. 

• Making recommendations to the director of the National Institute on Disability and 

Rehabilitation Research on ways to improve research, service, administration, and the 

collection, dissemination, and implementation of research findings affecting persons with 

disabilities. 

• Providing advice regarding priorities for the activities of the Interagency Disability 

Coordinating Council and reviewing the recommendations of this council for legislative 

and administrative changes to ensure that such recommendations are consistent with 

NCD’s purpose of promoting the full integration, independence, and productivity of 

individuals with disabilities. 

• Preparing and submitting to the President and Congress an annual report titled National 

Disability Policy: A Progress Report. 

International 

In 1995, NCD was designated by the Department of State to be the U.S. government’s official 

contact point for disability issues. Specifically, NCD interacts with the special rapporteur of the 

United Nations Commission for Social Development on disability matters. 

Consumers Served and Current Activities 

Although many government agencies deal with issues and programs affecting people with 

disabilities, NCD is the only federal agency charged with addressing, analyzing, and making 

recommendations on issues of public policy that affect people with disabilities regardless of age, 

disability type, perceived employment potential, economic need, specific functional ability, 

veteran status, or other individual circumstance. NCD recognizes its unique opportunity to 

facilitate independent living, community integration, and employment opportunities for people 

with disabilities by ensuring an informed and coordinated approach to addressing the concerns of 

people with disabilities and eliminating barriers to their active participation in community and 

family life. 

NCD plays a major role in developing disability policy in America. In fact, NCD originally 

proposed what eventually became the ADA. NCD’s present list of key issues includes improving 

personal assistance services, promoting health care reform, including students with disabilities in 

high-quality programs in typical neighborhood schools, promoting equal employment and 

community housing opportunities, monitoring the implementation of the ADA, improving 

assistive technology, and ensuring that those persons with disabilities who are members of 

diverse cultures fully participate in society. 

Statutory History 

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NCD was established in 1978 as an advisory board within the Department of Education (P.L. 95-

602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed NCD into an 

independent agency. 

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National Council on Disability Media Mail 

1331 F Street, NW, Suite 850 US Postage Paid 

Washington, DC 20004 Permit No. G-279 

Official Business ADDRESS SERVICE REQUESTED 

Penalty for Private Use, $300 
20 Years of Independence • National Council on Disability • July 26, 2004