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National Council on Disability: 20 Years
of Independence National Council
on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
Lex Frieden, Chairperson
July 26, 2004
This report is also available in alternative formats
and on NCD’s award-winning Web site (http://www.ncd.gov/).
The views contained in the report do not necessarily
represent those of the administration, as this and all NCD reports
are not subject to the A-19 executive branch review process.
National Council on Disability Members
and Staff
Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director
of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ed.D., Senior Research Specialist
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Geraldine Drake Hawkins, Ph.D., Program Analyst
Joan M. Durocher, Attorney Advisor
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Dedication
This report is dedicated to Americans with disabilities
and their families, who contribute to their communities and the
nation.
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.
Contents
Introduction
Origins, Initial Configuration,
and First Steps: The Dusenbury Era
Toward Independence: The Parrino
Era and the ADA Proposal
Challenges in Achieving Independence:
NCD Under Chairperson Bristo
The Current Council, Investing
in Independence, Righting the ADA, and the 21st Century:
NCD Under Chairperson Frieden
NCD Reports
Conclusion
Appendix: Mission of the National
Council on Disability
Introduction
Twenty years ago, a minuscule advisory body in the
Department of Education (ED), known then as the National Council
on the Handicapped, was elevated to the status of an independent
federal agency. The legislation that made what is now called the
National Council on Disability (NCD) independent also gave it an
ambitious agenda that greatly exceeded its size and modest resources.
Among other duties, it was charged with reviewing all federal laws
and programs affecting people with disabilities and assessing the
extent to which those laws and programs encouraged the establishment
of community-based services; promoted full integration in the community,
schools, and the workplace; and contributed to the independence
and dignity of people with disabilities. NCD was then directed to
use this assessment to recommend legislative proposals to increase
incentives and eliminate disincentives in federal programs. Finally,
NCD was to present this information in a report to the President
and Congress. To complete this imposing task, NCD’s 15 part-time
Council members and its small staff were given two years.
These responsibilities were in addition to other ongoing,
statutorily mandated duties such as establishing general policies
for and overseeing research activities sponsored by the National
Institute on Disability and Rehabilitation Research (NIDRR); reviewing
and evaluating federal rehabilitation programs; and advising the
President, Congress, the Commissioner of Rehabilitation, the appropriate
Assistant Secretary of ED, and the Director of NIDRR on the development
of programs carried out under the Rehabilitation Act. In periodic
revisions to NCD’s statutory mission, Congress has not only
continued most of the original duties assigned to NCD but has added
more. In 1992, for example, NCD was asked to “review and evaluate
on a continuing basis new and emerging disability policy issues
affecting individuals with disabilities at the federal, state, and
local levels, and in the private sector, including the need for
and coordination of adult services, access to personal assistance
services, school reform efforts and the impact of such efforts on
individuals with disabilities, access to health care, and policies
that operate as disincentives for the individuals to seek and retain
employment.”
Out of a profound sense of the importance of its mission,
unwavering optimism about the future of Americans with disabilities,
and perhaps, at times, an underestimation of the massive tasks it
undertook, NCD has never shied away from its designated duties.
NCD believes that this determination has produced an impressive
body of accomplishments. In some ways, NCD has been a “mouse
that roared.” NCD is aware that during its 20 years it has
been fortunate in having highly capable Council members, officers,
and staff as well as the consistent support of Congress and the
various administrations it has served.
The period since 1984 has been an important one in
the evolution of the status and rights of people with disabilities
in the United States. Although the 1970s have been characterized
as a shift “from charity to rights,” when individuals
with disabilities sought to establish through court cases and protest
actions that they were entitled to basic civil and human rights,
the past two decades have seen equal opportunity, independent living,
integration, and full participation—values specifically adopted
in NCD’s statutory purpose—emerge as the official objectives
of the Federal Government’s laws, programs, and policies.
Such progress has placed NCD front and center in offering recommendations
for achieving these objectives and for identifying ways in which
current efforts are falling short.
NCD’s key contribution has been to serve as
a focal point within the Federal Government for issues affecting
people with disabilities. NCD fields thousands of telephone calls,
e-mail messages, and letters each year from concerned individuals
and organizations, and its award-winning Web site (www.ncd.gov)
receives more than 4 million hits annually. NCD disseminates important
disability-related information through its monthly NCD Bulletin,
special mailings, articles, special reports, annual reports, brochures,
position papers, alerts to other disability organizations, the Internet,
and ongoing interaction with the news media.
No report of manageable size could cover all of NCD’s
activities and products. Accordingly, this report describes only
the highlights and mentions some of the Council’s most significant
activities, publications, and initiatives. In doing so, the report
must omit many significant NCD efforts. Just to cite two examples,
the report does not attempt to describe the early and ongoing work
that NCD has done to review and evaluate federal rehabilitation
programs and to oversee and establish general policies for the research
activities of NIDRR.
NCD believes that it has made a small but significant
contribution to the evolution of American policy concerning individuals
with disabilities. This report commemorates the high points and
ongoing efforts of its 20 years of work as an independent federal
agency, with a sense that much has been accomplished but much more
remains to be done.
National Council on Disability Members and
Staff
During the Dusenbury Era
Members
Joe S. Dusenbury, Chairperson
Justin Dart Jr., Vice Chairperson
Sandra Swift Parrino, Vice Chairperson
H. Latham Breunig, Ph.D.
Robert V. Bush
John S. Erthein
R. Budd Gould
Hunt Hamill
Marian N. Koonce
Carmine Lavieri
Michael Marge, Ed.D.
Nanette Fabray MacDougall
Roxanne S. Vierra
Henry Viscardi Jr.
Alvis Kent Waldrep Jr.
Staff
Harvey C. Hirschi, Executive Director
John A. Doyle, Acting Executive Director
Marilynne Gisin, Executive Assistant
Origins, Initial Configuration,
and First Steps: The Dusenbury Era
A. Conceptual Sources
The concept of NCD existed at least as far back as
1972, when Congress introduced legislation to extend and expand
the Vocational Rehabilitation program. The new provisions established
(1) an Office for the Handicapped in the Department of Health, Education,
and Welfare (DHEW) to analyze program operations, develop long-range
projections for providing comprehensive services, encourage coordinated
and cooperative planning, and promote scientific research to “bring
about the full integration of handicapped individuals into all aspects
of society”; (2) a National Advisory Council on Rehabilitation
of Handicapped Individuals within DHEW to review the operation and
administration of rehabilitation programs and provide policy advice
to the Secretary of DHEW and the Commissioner of Rehabilitation
Services; and (3) a National Commission on Transportation and Housing
for Handicapped Individuals to identify and eliminate barriers to
thee mobility of individuals with disabilities and to develop proposals
to promote adequate transportation and housing for such individuals.
After President Nixon twice vetoed the legislation due to budgetary
and programmatic concerns, Congress eliminated the proposed agencies
as part of a legislative compromise with the President.
Similar ideas emerged from meetings of the White House
Conference on Handicapped Individuals in May 1977, the first major
opportunity for people with disabilities to have a voice in shaping
policy for people with disabilities. Among the recommendations adopted
by the delegates were partially overlapping calls for the appointment
of (1) a presidential spokesperson on the handicapped, who would
make recommendations to the President and speak with “a high
degree of authority to government agencies and the public on issues
related to handicapped persons”; (2) a special advisor to
the President for affairs of the handicapped, who would communicate
directly with the President and cabinet members, ensure interdepartmental
cooperation and coordination, and influence recommendations and
legislative proposals; and (3) a President’s Ombudsman Council,
which would “establish a direct channel for all handicapped
concerns to the highest office.” The proposal for presidential
spokesperson expressly declared that “he or she should be
independent of any existing agency or department.”
B. Creation of the Council Within DHEW
In the 1978 amendments to the Rehabilitation Act of
1973, Congress added a new title to the Act that established a National
Council on the Handicapped within DHEW. The Council was made up
of 15 presidential appointees and was charged with establishing
general policies for, and reviewing the operation of, the newly
created National Institute of Handicapped Research, later to be
renamed the National Institute on Disability and Rehabilitation
Research (NIDRR). The Council also advised DHEW and the Commissioner
of Rehabilitation Services on rehabilitation policies and programs.
In addition, the Council was assigned many of the broader duties
that it would later retain as an independent federal agency. One
of its responsibilities involved reviewing and evaluating the effectiveness
of “all policies, programs, and activities” concerning
individuals with disabilities conducted or assisted by federal departments
and agencies. The Council was also charged with making recommendations
to the Secretary of DHEW, the Commissioner of Rehabilitation Services,
and NIDRR respecting ways to improve research and administration
of services, and with facilitating the implementation of programs
based upon research findings. As a specific work product, the Council
was directed to submit an annual report to the President, Congress,
and the Secretary of DHEW containing a statement of the current
status of research concerning people with disabilities in the United
States, a review of the activities of the Rehabilitation Services
Administration and NIDRR, and such recommendations as the Council
considered appropriate.
The first chairperson of the Council was Dr. Howard
Rusk, a rehabilitation pioneer and founder of the Institute of Rehabilitation
Medicine at New York University Medical Center. He was appointed
by President Jimmy Carter on November 6, 1979. On May 1, 1980, President
Carter appointed the remaining members: Elizabeth M. Boggs, Mary
P. Chambers, Nelba R. Chavez, Jack G. Duncan, Nanette Fabray, Donald
E. Galvin, Judith E. Heumann, John P. Hourihan, Thomas C. Joe, Odessa
Komer, Edwin O. Opheim, J. David Webb, and Henry Williams. Primarily,
staff was detailed from ED. When President Reagan took office in
1981, he replaced the existing Council with new members. On October
4, 1982, he selected as chairperson of the Council Joe Dusenbury,
previously the commissioner of the South Carolina Vocational Rehabilitation
Services and president of the National Rehabilitation Association.
C. Chairperson Dusenbury and the National
Policy for Persons with Disabilities
After becoming chairperson, Joe Dusenbury appointed
two vice chairpersons—Justin Dart and Sandra Swift Parrino—to
help direct Council activities. The Council members turned immediately
to the task of the annual report, and decided that they should develop
an ambitious proposal for disability policy. They also decided that
if the report were to have any legitimacy, it needed to be the product
of a nationwide effort based on grassroots input. Accordingly, Justin
Dart began conducting consumer forums around the country—the
first of many such campaigns. Using his own funds, Dart traveled
to every state to discuss disability policy and obtain feedback
for the Council’s policy report. He met with more than 2,000
people, including people with disabilities and their parents, government
officials, disability professionals, and other interested individuals.
Among the most frequently cited problems forum participants described
were discrimination and the inadequacy of laws to protect the rights
of people with disabilities.
Dart and Dusenbury took the feedback from the public
forums to heart in designing the NCD report, in which the spirit
and content of human, civil, and disability rights are pervasive.
People throughout the country reviewed various iterations of the
document, ensuring that the final product was truly national in
origin. Adopted by unanimous vote of the Council in August 1983,
the National Policy for Persons with Disabilities
built on the independent living philosophy: the pursuit of “maximum
independence, self-reliance, productivity, quality of life potential
and equitable mainstream social participation.” Although individuals
must assume primary responsibility for their lives, the report said,
the Federal Government had a critical role to play. The report identified
22 different policy areas in need of attention, including accessibility
issues, employment, education, and research. Part of the government’s
obligation, the report contended, was “to develop a comprehensive,
internally unified body of disability-related law which guarantees
and enforces equal rights and provides opportunities for individuals
with disabilities.” As the report declared, “In matters
of fundamental human rights, there must be no retreat.”
In a letter to the Council after receiving the National
Policy, President Reagan declared:
The fact that so much care was taken to include the concerns of
handicapped individuals across America makes this a valuable document.
It will provide us with the guidance needed as we chart our course
through the Decade of the Disabled and beyond. We must all work
together to make sure that people with disabilities achieve the
greatest possible access to our society, find maximum independence,
and have the opportunity to develop and use their capabilities.
In addition to developing the National
Policy, Chairperson Dusenbury, along with then-Executive
Director Harvey Hirshi, advocated that the Council should be made
an independent agency, so that it could exercise its judgment without
bureaucratic interference and restraints. Congress granted this
request in the 1984 amendments to the Rehabilitation Act, explaining
that “the Council has not been able to meet congressional
intent for an independent body to advise on all matters in the Government
affecting handicapped individuals.”
D. Perspectives of Chairperson Dusenbury
As I think back on my years on the Council, I give
Ronald Reagan great credit for agreeing to appoint a group of unselfish
and unwavering advocates for people with disabilities. I take full
credit for choosing Justin Dart and Sandra Swift Parrino as vice
chairpersons. Both were known for their persistence and supported
the idea of a national policy on disability. We organized the Council
into committees, and every member of the Council bought into the
plan to involve the disabled community in the creation of a national
policy statement. Justin Dart visited every state to get input.
The Council put the statement together and took great pride in forwarding
the statement to the White House. All members of Congress received
copies.
Congress intended the Council to be independent, but
some members of the administration wanted the Council to be an advisory
body to ED, which at that time was itself in jeopardy. They refused
to allow us much leeway, and it became apparent that the Council
must become independent if it were to succeed in fulfilling the
congressional mandate. Key members of the House and Senate from
both political parties supported independence, and at our request
they got the legislation passed.
The Council accomplished much during my time as chairperson,
but I consider establishing the Council as an independent federal
agency to be my greatest accomplishment.
National Council on Disability Members and
Staff
During the Parrino Era
Members
Sandra Swift Parrino, Chairperson
Justin W. Dart Jr., Vice Chairperson
Hunt Hamill, Vice Chairperson
Kent Waldrep Jr., Vice Chairperson
Linda W. Allison
Ellis B. Bodron
H. Latham Breunig, Ph.D.
Larry Brown, Jr.
Robert V. Bush
Mary Ann Mobley Collins
Joe S. Dusenbury
John Erthein
Anthony H. Flack
R. Budd Gould
John A. Gannon
Theresa L. Gardner
Margaret C. Hager
Hunt Hamil
Marian N. Koonce
Carmine R. Lavieri
Leslie Lenkowsky, Ph.D.
John Leopold
Nanette Fabray MacDougall
Michael Marge, Ed.D.
Robert S. Muller
George H. Oberle, P.E.D.
Brenda Premo
Mary M. Raether
Shirley W. Ryan
Ann C. Seggerman
Harry J. Sutcliffe, D.D.
Joni Eareckson Tada
Roxanne S. Vierra
Henry Viscardi Jr.
Michael B. Unhjem
Helen W. Walsh
Phyllis Zlotnick
Staff
Andrew I. Batavia, Executive Director
Ethel D. Briggs, Executive Director
Lex Frieden, Executive Director
Paul G. Hearne, Executive Director
Harvey S. Hirschi, Executive Director
Frederick D. Bedell, Acting Executive Director
Betty Jo Berland, Research Specialist (on detail)
Edward P. Burke, Acting Executive Director
Christopher Button, Special Assistant (on detail)
Robert Burgdorf Jr., Research Specialist
Frances D. Curtis, Administrative Officer
John Doyle, Acting Executive Director
Andrea H. Farbman, Public Affairs Specialist
Marilynne Gisin, Executive Assistant
Billie Jean Hill, Program Specialist
Kathleen Roy Johnson, Children’s Specialist
Naomi Karp, Children’s Services Specialist (on detail)
Pat Laird, Staff Assistant
Fred Krause, Special Assistant to the Chairperson (on detail)
Janice Mack, Administrative Officer
Mark S. Quigley, Public Affairs Specialist
Katherine Seelman, Ph.D., Research Specialist
Harold W. Snider, Deputy Director
Norman Subotnik, Special Assistant (on detail)
B. E. Villanueva, Administrative Officer
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Deborah Shuck, Staff Assistant
Joyce Turner, Secretary
Lorraine Williams, Student Assistant
Toward
Independence: The Parrino Era and the ADA Proposal
A. The Council as an Independent
Federal Agency
The Council became an independent agency within the
Federal Government on February 22, 1984. Although he had played
a key role in bringing about the Council’s independence, Joe
Dusenbury did not chair the agency in its new status. Before the
Council realized its independence, President Reagan named one of
the former vice chairpersons, Sandra Swift Parrino, to be the new
chairperson.
In granting the Council independence, Congress recognized
the potential for a centralized evaluation of a patchwork of disability
programs as had been recommended by the White House Conference on
Handicapped Individuals. Accordingly, the 1984 law that made the
Council an independent agency also mandated that it produce a comprehensive
analysis of federal disability programs and policy by February 1,
1986. To some extent, interested members of Congress viewed the
1986 report as a test of the Council’s mettle that would determine
its future and continued funding. Chairperson Parrino felt that
the Council’s reputation—indeed, its very existence—would
depend largely on the reception the report received in the White
House and on Capitol Hill.
Congress called for the report to present a “priority
listing” of federal disability programs according to the number
of individuals served and the programs’ costs. To determine
whether the Federal Government was promoting dependence or independence
for people with disabilities, Congress also directed the Council
to assess the degree to which federal disability programs promote
or discourage the establishment of community-based services for
individuals with disabilities, their integration into the community,
schools, and the workplace; and their independence and dignity.
Representative Steve Bartlett (R-TX) appeared before
the Council on April 30, 1984, to explain the significance of the
challenge that lay ahead. “You are to advise Congress in a
whole new approach, a whole new concept,” he said, “on
how to decrease dependence and increase independence.” This,
Bartlett suggested, represented what the disability community knew
and what Congress was only reluctantly recognizing: “Sometimes
federal laws or provisions in federal laws are the worst enemy of
independence.” According to NCD’s minutes, Bartlett
emphasized that “Congress is not looking for more programs,
more maintenance grants, and larger appropriations.” Instead,
the Council should “look for ways to convert existing maintenance
dollars to help recipients achieve independence.” Patricia
Owens, associate commissioner for disability in the Social Security
Administration, reinforced this approach in an appearance before
the Council, saying, “The administration wants a program that
encourages people to return to work.” Disability policy therefore
involved more than just improving the lives of persons with disabilities;
curtailing dependence would also help minimize the federal cost
of disability. By reviewing federal programs, the Council’s
proposals might actually reduce government expenditures.
B. Initial Steps
The Council, although officially independent, remained
part of the Federal Government, subject to the administration, which
controlled its financial disbursements and supplied many of its
administrative needs, and to Congress, which controlled both its
statutory mission and its appropriations. The Council’s transformation
to independent agency status, however, heralded a decisive shift.
Congress had now prioritized recommendations concerning the entire
sweep of disability policy over such particularized responsibilities
as overseeing NIDRR. In addition, the Council’s new identity
as an independent think tank gave disability issues enhanced stature
as a major policy area. “For the first time, disability as
an issue is institutionalized, by statute, in the structure of the
Federal Government,” said John Doyle, who left his post with
the Senate Subcommittee on the Handicapped for six months to help
the Council in its transition. The actions of the disability community
were clearly gaining attention, and the themes of independence and
community integration were working their way into national policy
directives. The agency had truly become a “National Council”
on disability. (Although it was not until 1988 that the agency’s
name was changed from the National Council on the Handicapped to
the National Council on Disability, this report uses the acronym
NCD to describe the Council from its inception as an independent
federal agency.)
Chairperson Parrino welcomed the heightened responsibilities
for NCD. Under her leadership, the Council met quarterly to advance
its ambitious statutory responsibilities. Shortly before the Council
officially became independent, Parrino and Vice Chairperson Justin
Dart Jr. recruited Lex Frieden, an independent-living leader who
had founded the Independent Living Research Utilization Program,
to serve as the Council’s executive director. Frieden assumed
NCD’s reins in December 1984 and immediately turned to the
task of finding high-quality staff to support him. He hired Ethel
Briggs, who had extensive experience in vocational rehabilitation,
as an adult services specialist. (Years later—beginning in
April 1990—she would become NCD’s executive director.)
Attorney Robert L. Burgdorf Jr. filled the research specialist position,
and Naomi Karp, on detail from NIHR, joined the staff as children’s
services specialist. Joyce Turner was hired as secretary; then,
after a few months, Brenda Bratton assumed the job. Marilynne Gisin
continued in her previous role as executive assistant. Having acquired
independence, additional staff, and a $500,000 budget, NCD was now
able to face its growing responsibilities with increased zeal.
NCD’s quarterly meetings were held around the
country, often in conjunction with “consumer forums”
designed to solicit the views of those in the disability community.
Although NCD attended to the requirements to monitor NIDRR and RSA
and considered various initiatives raised by its members, it increasingly
turned its attention to preparing the 1986 report, which imposed
heightened work demands.
C. The Toward Independence Report
At the quarterly NCD meeting on January 23, 1985,
Chairperson Parrino declared that “the contribution of this
Council and its continued existence will rest almost entirely on
the content of our February 1986 Report to the President and how
it is judged by the president and the Congress.” She urged
NCD members to unite in a common purpose and pledge their support.
In April, recognizing that preparation for NCD meetings and consumer
forums dominated NCD’s time, Frieden convinced the Council
to clear the table and focus almost exclusively on the report.
As a foundation for developing the report, NCD had
made significant efforts to obtain grassroots input. As in 1982,
Justin Dart personally financed another series of public forums,
visiting every state to learn what issues were most important to
people with disabilities. The Council sought additional information
on the status and views of Americans with disabilities. At the time,
no substantive national survey data on people with disabilities
existed. Noting this gap, Council member Jeremiah Milbank suggested
a national poll of people with disabilities. With the assent of
the other NCD members, Milbank contacted the polling agency Louis
Harris and Associates, which agreed to conduct the study. NCD staff
and members, along with other experts in the disability community,
contributed to the development of the questions and structure of
the survey. The International Center for the Disabled (ICD), for
which Milbank served as Chairman of the Board, provided most of
the funding. Preliminary data and findings of the survey helped
inform NCD’s 1986 report. The final, official version of the
survey report, The ICD Survey of Disabled Americans:
Bringing Disabled Americans into the Mainstream, was published
in March 1986.
“The purpose of the survey,” explained
ICD Executive Director John Wingate, “was to obtain data on
disabled people’s experiences and attitudes that would provide
a clear information framework of NCD’s recommendations on
public policy for disabled people.” The nationwide survey
was based on 1,000 telephone interviews with a national sample of
noninstitutionalized persons with disabilities aged 16 and older.
Although other organizations had conducted surveys of people with
disabilities, this was the first comprehensive national survey that
solicited their own perceptions of their conditions, their obstacles,
and their quality of life. It provided solid data documenting the
extent of the problems faced by people with disabilities and unearthed
fruitful directions for policy development.
The Harris poll report presented a series of significant,
quantified findings about Americans with disabilities:
- 40 percent did not finish high school, compared
with 15 percent in the nondisabled population.
- 50 percent reported annual household incomes less
than $15,000, compared with 25 percent among the nondisabled population.
- 56 percent reported that disability prevented desired
levels of social and community participation.
- 49 percent identified lack of transportation as
a barrier to social and community participation.
- 67 percent aged 16 to 64 were not working; 66 percent
of those not working said they would like to be employed.
- 95 percent advocated increased public and private
efforts to educate, train, and employ people with disabilities.
- 74 percent supported implementing antidiscrimination
laws affording disabled people the same protections as other minorities.
Such findings documented what were previously subjective
assessments. The survey was a ringing endorsement of initiatives
to help Americans with disabilities find work and live independent
lives. The poll affixed numbers to real and pressing problems and
provided a sound foundation for NCD’s recommendations.
In June, NCD members held working sessions to determine
the focus of Council’s report. To make the scope of the report
manageable, Frieden and Burgdorf presented Council members with
a list of 41 potential topics and recommended that they choose 8
to 10 of them. Drawing on the issues addressed in the1983 National
Policy for Persons with Disabilities as well as the input
received at consumer forums, the Council pared down the list of
potential topics to 10: equal opportunity laws, employment, disincentives
to work under Social Security laws, prevention of disabilities,
transportation, housing, community-based services for independent
living, educating children with disabilities, personal assistant
services, and coordination of disability services and programs.
Council members noted that the first topic was consistently discussed
at the consumer forums and declared it to be of “central importance.”
However, to make the concept more palatable to a wider audience,
including the Reagan administration, Burgdorf recast the issue as
“equal opportunity laws” rather than as “civil
rights.”
After the Council members chose the 10 topic areas,
Frieden assigned staffers and a few consultants to develop detailed
papers on each of the topics; these papers were to document problems
and present draft recommendations for solutions to the President
and Congress. The topic papers were then presented to the Council
members for their feedback and revision. During 1985, NCD devoted
its consumer forums to soliciting feedback about the various topic
papers. In addition, Frieden regularly consulted with disability
organizations from around the country. The extensive, nationwide
outreach helped give the disability community a sense of ownership
of NCD’s activities and its upcoming report. By the end of
1985, NCD had crafted more than 400 pages of policy analyses that
it would ultimately publish as a detailed appendix to the 1986 report.
Because of logistical problems posed by meeting only four times
a year, much of the responsibility for designing the structure and
overall form of the report fell to Frieden and Burgdorf, under the
guidance of the Council’s officers.
In January 1986 Burgdorf, at Frieden’s direction,
synthesized the topic papers into a short, readable report presenting
45 recommendations to the President and Congress. Following NCD’s
statutory directive, the report included a “List of Federal
Programs Affecting Persons with Disabilities in Order of Expenditure,”
which was developed by NCD consultant Frank Bowe. One fact that
the list brought to light was that the annual federal expenditure
on disability benefits and programs was more than $60 billion, of
which more than $57 billion was going to public aid programs. Such
programs are premised on the dependency of the people who receive
benefits, in that eligibility is based on their inability to engage
in substantial gainful activity or their significantly low income.
This finding provided an economic rationale for the report’s
recommendations. In her cover letter transmitting the report to
the President and congressional leaders, Chairperson Parrino indicated
that, by following the Council’s recommendations, “current
federal expenditures for disability can be significantly redirected
from dependency-related approaches to programs that enhance independence
and productivity of people with disabilities, thereby engendering
future efficiencies in federal spending.”
Based on its assessment of federal laws and programs,
NCD drew three general conclusions:
- Approximately two-thirds of working-age people
with disabilities do not receive Social Security or other public
assistance income.
- Federal disability programs overemphasize income
support and underemphasize initiatives for equal opportunity,
independence, prevention, and self-sufficiency.
- Federal policy should emphasize programs that
encourage and assist private-sector efforts to promote opportunities
and independence for individuals with disabilities.
At the suggestion of Council member Jeremiah Milbank
Jr., the report also featured a large fold-out chart portraying
key federal programs serving people with disabilities and their
corresponding legislative committees. The chart illustrated the
pervasiveness and complexity of federal programs affecting people
with disabilities. The core of the report addressed the 10 topic
areas NCD had selected. Each section presented a brief overview
of the problems being addressed and then laid out NCD’s recommendations,
followed by a succinct rationale and explanation that represented
a distillation of the more detailed explanation and commentary provided
on each topic. The 45 recommendations represented the best current
ideas on addressing problems in each topic area.
The report’s primary recommendation was for
the advancement of equal opportunity laws for people with disabilities.
Although Congress had previously enacted some narrow antidiscrimination
laws protecting people with disabilities, the report noted that
such laws paled in comparison to federal measures prohibiting race
and gender discrimination. NCD therefore proposed that Congress
“enact a comprehensive law requiring equal opportunity for
individuals with disabilities, with broad coverage and setting clear,
consistent, and enforceable standards prohibiting discrimination
on the basis of handicap.” The proposal also delineated what
such a law should entail. NCD member Kent Waldrep even suggested
a name for such a law—the Americans with Disabilities Act
(ADA).
The report’s title, Toward
Independence, echoed the subtitle of a book by disability rights
advocate and NCD consultant Frank Bowe, Rehabilitating America:
Toward Independence for Disabled and Elderly
People. The title therefore not only reflected NCD’s
statutory mandate to assess the extent to which federal programs
“contribute to the independence and dignity” of individuals
with disabilities but also signified NCD’s endorsement of
the independent living philosophy that had emerged within the disability
community. NCD viewed facilitating independence through equal participation
as the overriding objective of its recommendations.
Ethel Briggs worked with the staff at the U.S. Government
Printing Office (GPO) to ensure that Toward
Independence and its large appendix would be printed in a
timely fashion and would be included in GPO’s Catalog
of U.S. Government Publications.
NCD officially presented Toward
Independence, accompanied by letters of transmittal, to President
Reagan, Vice President and President of the Senate George H. W.
Bush, and Speaker of the House James C. Wright on February 1, 1986.
NCD also scheduled a press release for January 28, 1986. On that
day, however, media attention was focused on the explosion of the
space shuttle Challenger. The Challenger
tragedy also caused the cancellation of another scheduled Council
function: a meeting with President Reagan to present the report
in person. Consequently, Vice President Bush and White House adviser
Boyden Gray met with Parrino, Dart, Milbank, and Frieden. The Vice
President displayed considerable interest in NCD’s report.
A scheduled 10-minute photo-op evolved into a substantive discussion
that lasted nearly an hour. Mr. Bush recounted his personal experience
with the disabilities of family members. He also showed himself
to be familiar with the content of the report, talking about education
and equal opportunity laws in detail. The meeting ended with the
Vice President’s promise that he would pass the report along
to President Reagan.
Although NCD’s planned press conference and
meeting with President Reagan were canceled, the agency’s
third public relations event went on as planned: a reception on
Capitol Hill, where many members of Congress gathered to accept
the report. Senator Lowell Weicker, Senator Paul Simon, Representative
Steve Bartlett, and Representative Major Owens, among others, offered
remarks. NCD ultimately distributed more than 20,000 copies of Toward
Independence to legislators, government officials, disability
advocates, and disability organizations. As NCD Executive Director
Paul Hearne, Frieden’s successor, observed in 1988, NCD’s
preparation of Toward Independence and
instigation of the ICD Survey helped “put the Council on the
map.”
Although the report was completed on time, Frieden
had hired Frank Bowe to write another report in case the staff report
was not completed by the deadline established by Congress.
D. From Toward Independence
to On the Threshold and the Draft ADA
In fall 1986, Congress amended the statutory provisions
governing NCD. It clarified NCD’s overall mission as follows:
“The purpose of the National Council is to promote the full
integration, independence, and productivity of handicapped individuals
in the community, schools, the workplace and all other aspects of
American life.” It also gave NCD a specific directive to issue
by January 30, 1988, and annually thereafter, a report to the President
and the Congress “on the progress that has been made in implementing
the recommendations contained in ... Toward
Independence.” Frieden assigned Dr. Andrea Farbman,
NCD’s public affairs specialist, the lead responsibility for
developing the 1988 report. The report, On
the Threshold of Independence, was issued on January 29, 1988,
beating the statutorily imposed deadline by one day.
On the Threshold examined
the reception given to the Toward Independence
report and summarized recent statistical data, including information
derived from the 1986 Harris poll and a second such poll of employers.
The report then reviewed the 10 topic areas addressed in Toward
Independence and described accomplishments or significant
developments in each area.
NCD found that about 80 percent of the 45 recommendations
offered in Toward Independence had been
either partially or fully accomplished. On
the Threshold noted, however, that although “[m]any
doors to independence have been opened, others remain closed or
only partially opened.” Despite the apparent progress, a glaring
exception was the Council’s primary recommendation to enact
a comprehensive federal law prohibiting discrimination on the basis
of disability. Congress had not responded at all to this recommendation.
After seeing no progress on the ADA recommendation
for nearly a year, Council members became impatient. They concluded
that the only way to overcome legislative inertia was for NCD to
take the lead. At one point, Chairperson Parrino asked Burgdorf
whether he could draft such a law for the Council; he responded
that he would welcome the opportunity. The framework for such a
law was already sketched out in some ways. In 1984, Burgdorf and
Chris Bell had published a “statutory blueprint” for
such a law in the American Bar Association’s Mental
and Physical Disability Law Reporter. In Toward
Independence, Burgdorf had expanded on the blueprint by specifying
various elements that the law should include. Early in 1987, Burgdorf
began drafting an ADA bill. In the ensuing months, NCD members reviewed
draft after draft of the proposal. By August 1987, they had accepted
an internal draft of the bill and began circulating it to various
stakeholders and disability rights experts for their input, and,
it was hoped, their support.
NCD’s initial plan was to hand over its ADA
proposal to some supportive member or members of Congress who could
then claim responsibility for having drafted the legislation. This
approach bogged down, however, when legislators, unsure of the breadth
of support for the ADA proposal, were reluctant to take the forefront.
As the press deadline for the 1988 report neared, the Council decided
to include the ADA draft in On the Threshold.
Once it was featured prominently in the report, the text of the
ADA legislative proposal attracted the attention of grassroots members
of the disability community, who asked their organizations and their
congressional representatives to take a position in favor of it.
For congressional sponsorship, Parrino turned first
to Senator Weicker, who was one of the disability community’s
greatest supporters in the Senate and with whom NCD had a longstanding
relationship. Early in 1987, during a meeting with Parrino, Weicker
had indicated a willingness to support disability rights legislation
if NCD drafted a proposal. After On the Threshold
of Independence came out, he agreed to sponsor the bill.
For the ADA to succeed, Weicker emphasized that the bill would have
to be introduced simultaneously in both houses of Congress. He recommended
that NCD contact Representative Tony Coelho, a high-ranking member
of the House leadership who had epilepsy and had encountered discrimination
firsthand. Chairperson Parrino and Council member Roxanne Vierra
met with Coelho, who agreed to sponsor the legislation in the House.
After NCD made some revisions to the legislation at the suggestion
of the members of Congress and of Washington disability groups,
Weicker and Coelho introduced the Americans with Disabilities Act
bills in April 1988.
In his April 28, 1988, introductory remarks, Senator
Weicker called the legislation “historic,” and said
that it “will establish a broad-scoped prohibition of discrimination
and will describe specific methods by which such discrimination
is to be eliminated.” He compared the conditions faced by
people with disabilities to those faced by minorities in the 1960s.
Congress had responded by enacting civil rights laws that prohibited
discrimination because of race or national origin in access to public
accommodations, use of transit, employment opportunities, services
of state and local governments, and housing. “Yet, today,”
Weicker noted, “it is not unlawful for these same establishments
to exclude, mistreat, or otherwise discriminate against people because
of their disabilities.” He contended that discrimination on
the basis of disability was “just as intolerable as other
types of discrimination that our civil rights laws forbid.”
The following day, Representative Coelho joined Weicker by introducing
an identical bill to the floor of the House of Representatives.
Civil rights for persons with disabilities had entered the national
legislative agenda.
E. NCD’s Role in Passage of the ADA
Although in many ways the ADA’s introduction
in Congress amounted to passing the baton from NCD to congressional
sponsors and the disability community, NCD’s role did not
end there. At several stages, current and former NCD members and
staff persons played significant roles in moving the legislation
ahead. Although NCD could present legislative proposals and justify
its recommendations by offering “technical information,”
federal law at the time prevented employees of federal agencies
from personally lobbying members of Congress. In lieu of formal
lobbying, NCD members made presentations in their hometowns and
in their professional circles. Chairperson Parrino met extensively
with officials in the White House and helped pave the way for favorable
action on the ADA by the Bush administration. She also presented
important congressional testimony on several occasions.
The ADA was introduced too late in the 100th Congress
to have any serious chance of passage. The most that could be hoped
for was to have congressional hearings to focus attention on the
discrimination encountered by people with disabilities and to highlight
the need for legislation to address the problem. These hopes were
fulfilled on September 27, 1988, when Chairperson Parrino testified
at a joint congressional hearing. The senators and representatives
present for the hearing congratulated Parrino and the Council for
developing the ADA bill.
In November 1988, NCD issued Implications
for Federal Policy of the 1986 Harris Survey of Americans with Disabilities.
The report examined the Harris poll results in detail and made 31
policy recommendations based on the data collected in the poll.
The report found that the responses documented the existence of
discrimination in the job market and workplace, in educational opportunities,
in access to public buildings and public bathrooms, in transportation,
in insurance, and in social person-to-person contacts. NCD also
noted that “[t]he survey found great support for legal protection
against discrimination on the basis of disability,” with 75
percent of participants responding in favor of such protection.
The report also found that 68 percent of Americans with disabilities
were unaware of the limited civil rights protection that was then
available to them. Such data buttressed NCD’s conviction that
the ADA was needed; accordingly, NCD made a strong recommendation:
“Congress should enact the Americans with Disabilities Act
of 1988 to establish a strong and clear requirement of equal opportunity
for individuals with disabilities, parallelling the civil rights
protections afforded other minorities and women.”
When the 100th Congress expired without either house acting on the
ADA legislation, various efforts were begun to prepare the legislation
for enactment during the next Congress. One such initiative was
Representative Major Owens’ Congressional Task Force on the
Rights and Empowerment of Americans with Disabilities, which sought
to gather evidence on the extent and nature of discrimination on
the basis of disability. The chairperson of the Task Force was former
NCD Vice Chairperson Justin Dart, its coordinator was former NCD
Executive Director Lex Frieden, and Sandra Swift Parrino was a member.
Before reintroducing the ADA legislation in the 101st
Congress, congressional supporters, in consultation with national
disability consumer organizations, revised the proposal, adding
specificity and some policy compromises. The revised ADA bills were
introduced in the new Congress on May 9, 1989, with Senator Tom
Harkin as the sponsor in the Senate and Representative Coelho as
the sponsor in the House of Representatives. Eventually, both houses
passed the legislation, and, after two joint conference committees
to reconcile differences between the Senate and House, the House
approved the final version of the bill on July 12, 1990, and the
Senate followed suit on July 13, 1990.
When President Bush signed the ADA into law on July
26, 1990, Parrino and Dart were next to him on the dais. Many former
and current members and staff of NCD were among the more than 3,000
spectators who gathered on the South Lawn of the White House for
the signing ceremony. In his signing statement and remarks, the
President described how as Vice President he had “personally
accepted” the Toward Independence
report, credited NCD for its role in developing the ADA, and specifically
acknowledged both Dart and Parrino. He praised the ADA as an “historic
new civil rights Act . . . the world?s first comprehensive declaration
of equality for people with disabilities.”
F. International Advocacy
Chairperson Parrino and Executive Director Ethel D.
Briggs represented the United States at many international meetings,
including the Meeting of Experts in Finland and China. The Standards
for Equalization of Opportunities for Persons with Disabilities
were drafted at the meeting in Finland. NCD represented the United
States at the United Nations Center for Social Development in Vienna
several times. In 1990, 1991, and 1992, Parrino was a delegate at
the Third Committee on Social Development at the United Nations.
In 1991, the People’s Republic of China invited NCD to assist
it in its efforts to help people with disabilities. As the request
of the government of Czechoslovakia, NCD was invited to conduct
the Eastern European Conference on Disabilities for participants
from Czechoslovakia, Hungary, and Poland.
G. Perspectives of Chairperson Parrino
I was chairperson of NCD from 1983 to 1993, beginning
with a minuscule budget, one staff member, and a one-room office
in the basement of the Department of Education’s Switzer Building.
The outstanding members of NCD took on the herculean task of meeting
their obligations and fulfilling their federal mandate. Kent Waldrep
served superbly as vice chairperson for my entire tenure, and I
am deeply indebted to him for his insight, loyalty, and commitment.
We all learned quickly how difficult it can be serving two masters,
the President who appointed us and the Congress to whom we had to
report to for our budget.
The Council was made up of a handful of disability
activists appointed by the President and confirmed by the Senate.
Every member who served during this time was either a person with
a disability, the parent or spouse of a person with a disability,
or a career professional in the field of disability; thus, all had
firsthand experience with living with a disability in America.
With the help of Senator Lowell Weicker and others,
NCD became an independent federal agency in 1984 under a new congressional
mandate. This new status gave the Council the legitimacy and stature
to define disability policy in America. Weicker staff member John
Doyle was “loaned” to NCD for six months to get the
Council up and running, and he did a superb job.
Despite a small budget and limited staff, NCD conducted
public hearings and consumer forums across the country aimed at
getting input from people with disabilities and effectively reviewing
all federal laws and programs affecting persons with disabilities.
Council member Justin Dart traveled across the country to discuss
disability issues with consumers. The information gathered from
these hearings and forums enabled Council members and Executive
Director Lex Frieden to conclude that equal opportunity laws were
urgently needed to protect the rights of people with disabilities
and create a level playing field.
Another important achievement was the now famous Harris
poll, the first-ever survey of people with disabilities. In 1986,
Council member Jeremiah Milbank Jr. conceived the idea of the Harris
poll and arranged independent financing for this groundbreaking
survey. The Council brought in consumer advisors to work with Council
members and staff on the survey.
In 1986, the Council presented to the President and
Congress its landmark report Toward Independence,
which recommended an equal opportunity law as a top priority. The
legislation was then formulated by Council members and put into
draft form by Robert Burgdorf Jr.
After receiving no feedback from Congress or the administration
on the proposed antidiscrimination law, the Council began to develop
a strategy to move its agenda forward. That agenda began with my
visit to Senator Weicker in 1987 asking him to be the chief sponsor
in the Senate of what was then called the Americans with Disabilities
Act of 1986. Council member Roxanne Vierra and I paid a similar
visit to Representative Tony Coelho and asked him to be the chief
sponsor of the ADA in the House. The ADA legislation was dropped
into the Senate and the House of Representatives in April 1988.
In 1988, the Council successfully influenced Congress
to authorize and appropriate funds to create a nationwide Disability
Prevention Program at the Centers for Disease Control. This effort
was organized by Council member Michael Marge. This success led
the agency to write the Disability Prevention Act of 1991 (the Silvio
O. Conte Disabilities Act).
In addition to its mandated duties, NCD organized
several important consumer advisory groups to work in the areas
of civil rights, minorities, Native Americans, primary and secondary
disability prevention, and personal attendant care.
I was honored to serve as chairperson of NCD under
Presidents Reagan and Bush and privileged to work with the dedicated
and gifted members of the Council, who are the unsung heroes of
this celebration. This Council was the driving force behind the
creation and passage of the ADA. On July 26, 1990, I was present
on the podium at the White House ceremony when President Bush signed
the ADA into law. I represented the Council members and staff who
had worked so diligently on behalf of all Americans with disabilities.
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
Ramona Lessen, Executive Assistant
Janice Mack, Administrative Officer
Jamal Mazrui, Program Specialist
Moira Shea, Senior Legislative and Economic Advisor (on detail)
Pam O’Leary, Sign Language Interpreter
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Challenges in Achieving
Independence: NCD Under Chairperson Bristo
In May 1994, President Clinton named Marca Bristo—the
founder of Access Living, Illinois’ first independent living
center—chairperson of NCD. NCD was entering its second decade
as an independent federal agency. Its agenda in the previous decade
had centered primarily on the policy proposals presented in the
National Policy for Persons with Disabilities
and Toward Independence. The first years
of the 1990s were largely dominated by the enactment of the ADA
and its various sections, the issuance of regulations to implement
it, and early enforcement efforts. The early 1990s also produced
an ADA backlash similar to that during the initial implementation
of the Civil Rights Act in the 1960s. The principal expression of
this backlash was found in the charge of some opponents that the
ADA constituted an unfunded mandate. This, of course, revealed a
fundamental misunderstanding of the ADA’s nature. The ADA
is, at its core, civil rights legislation grounded in the freedoms
guaranteed in the Bill of Rights. As such, the rights and freedoms
codified in the ADA should not be subject to a debate on their cost
any more than the rights of women, minorities, or religious groups
would be. This fact was recognized in 1994 in the Senate debate
regarding unfunded mandates.
NCD took the lead in countering this backlash by organizing
a group of disability leaders and political appointees with disabilities.
Part of the strategy included a media response team to share negative
media portrayals and respond to each story. NCD also determined
that it would visit every state, the District of Columbia, and the
U.S. Virgin Islands to hear directly from consumers and those involved
in ADA implementation about the degree to which the law has affected
their quality of life. Through this serious and substantial outreach
effort, the NCD hoped to determine whether, and how much, the ADA
had changed the nature of American culture. Has a society in which
people with disabilities historically did not have equal opportunities,
were excluded, and were kept in dependency become a society in which
people with disabilities have equal opportunities, are included,
and are empowered both socially and economically? NCD also attempted
to understand the nature of complaints lodged by critics of the
ADA within the context of the actual life experiences of people
with disabilities covered under the Act.
NCD’s 1995 report Voices
of Freedom: America Speaks Out on the ADA concluded that the
ADA was beginning to create positive and, at times, dramatic changes
in the lives of people with disabilities. The backlash began to
subside, and under Chairperson Bristo’s leadership, NCD undertook
a number of ambitious initiatives.
A. The National Summit on Disability Policy
A priority of the new Council was a comprehensive
reassessment of disability policy based on the input and perspectives
of leaders in the disability community. Accordingly, NCD decided
to host the National Summit on Disability Policy. The summit, attended
by 300 disability leaders from every state and the District of Columbia,
took place from April 27 to April 29, 1996, in Dallas. People with
a variety of disabilities and their families attended. About 20
percent of the participants were members of culturally diverse populations,
including Native Americans, African Americans, Asian Americans,
and Hispanic Americans. Participants represented disability organizations,
service-providing organizations, academia, and federal, state, and
local governments. Federal officials provided technical assistance
and background information. The summit placed special emphasis on
youth with disabilities; 20 people aged 13–22 participated
fully, providing a glimpse of tomorrow’s leadership and invigorating
the dialogue. Attendees assessed the status of disability policy
and ADA enforcement in 1996.
Led by volunteer facilitators chosen from among the
participants, summit participants met in policy working groups for
three days. They were asked to address 11 policy areas chosen by
NCD and a Summit Advisory Committee after a review of the topics
addressed in Toward Independence and
the priorities reported by the President’s Committee on Employment
of People with Disabilities in Operation People
First. The groups brainstormed their policy areas, assessing
the current state of affairs and debating how future policy could
best promote the goal of independence.
The summit was an example of democracy in action.
Reminiscent in some ways of the 1977 White House Conference on Handicapped
Individuals, the summit offered knowledgeable people from around
the country the opportunity to provide direct input into the federal
policy-making process. The attendees proved themselves effective
and thoughtful analysts and contributors. The recommendations generated
by the working groups were supplemented by suggestions from disability
leaders who could not attend the summit and were reviewed and fine-tuned
by NCD. The result was more than 120 recommendations in the 11 designated
areas of disability policy.
B. The Achieving Independence
Report
Out of the results of the National Summit on Disability
Policy, NCD developed the report Achieving
Independence: The Challenge for the 21st Century. The report
assessed the nation’s progress in achieving equal opportunity
and empowerment between 1986 and1996 and presented recommendations
that set an agenda for the next decade.
Based on the summit, NCD drew three broad conclusions
about the state of disability policy in America:
- 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.
- 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.
- 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:
- Existing laws should be more vigorously enforced.
- People with disabilities should direct policy
and decision-making when they are affected by the outcome.
- 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.
- Incentives for the inclusion of people with disabilities
in all aspects of society must be further developed and implemented.
- Principles of universal design should be universally
applied.
- Systems, services, and supports for people with
disabilities must be further developed as a part of the mainstream
of community life.
- Accurate data about people with disabilities should
be regularly collected, analyzed, and reported.
After presenting disability demographics and discussing
some basic concepts of independent living, disability rights, and
disability culture, the body of the report presented an assessed
disability policy in 11 areas: policy coordination, civil rights,
education, employment, Social Security and other income maintenance,
health insurance and health care, long-term services in the community,
technology, housing, transportation, and international issues. In
each of these areas, the report presented specific recommendations.
Summit participants also had the opportunity to organize additional
groups to discuss emerging issues or issues not sufficiently included
in the 11 policy areas. The discussions of nine of these groups
were summarized in an appendix to the report: multiple chemical
sensitivities, complementary medicine, Native Americans, crossover
between health care and long-term services, targeted versus integrated
managed care, research, disability culture, physician-assisted suicide,
and genetics issues.
In discussing future challenges, Achieving
Independence sounded an optimistic note:
Advances in policy, science and technology are available
to support independence as never before. The challenge of achieving
independence is a challenge of mustering the political will to move
forward. Progress requires a dedicated commitment from all sectors
of society—policy makers, people with disabilities and their
allies, state and local government officials, nonprofit organizations,
the private sector and the media. The achievement of independence
for people with disabilities is a test of the very tenets of our
democracy. It is a test we can pass.
C. The Disability Civil Rights Monitoring Project
One of the primary themes to emerge from the National
Summit on Disability Policy was the need for stronger and more consistent
enforcement of federal civil rights laws for people with disabilities.
In fact, the overarching recommendation from the summit was that
existing civil rights laws should be more vigorously enforced. The
participants recommended that NCD should
- work with the responsible federal agencies
to develop strategies for greater enforcement of existing disability
civil rights laws “consistent with the philosophy of”
the ADA; and
- continue working “toward elimination of
contradictory laws, regulations and programs [and] promote coordination
and commonality of goals across agencies.”
In response to these recommendations, NCD launched
a policy initiative in 1997 called the Disability Civil Rights Monitoring
Project. In carrying out this monitoring effort, NCD undertook in-depth
studies of federal enforcement of disability civil rights laws in
the areas of education, equal opportunity, ADA, employment, public
accommodations, housing, air travel, and Internet technology.
NCD initially focused on the Federal Government’s
compliance, enforcement, and public information efforts regarding
the ADA, Part B of the Individuals with Disabilities Education Act
(IDEA), the Air Carrier Access Act of 1986 (ACAA), Section 504 of
the Rehabilitation Act, and the Fair Housing Act as amended by the
Fair Housing Amendments Act of 1988. NCD selected the Disability
Rights Education and Defense Fund to conduct an assessment and to
develop a draft report on federal enforcement of the ADA, Part B
of IDEA, and the ACAA. For the Fair Housing Act, NCD contracted
with the National Fair Housing Alliance and the Bazelon Center for
Mental Health Law. Based on the material developed by these contractors,
NCD produced reports that came to be referred to collectively as
the Unequal Protection Under Law series.
On March 18, 1999, NCD produced its first report in
the series, Enforcing
the Civil Rights of Air Travelers with Disabilities: Recommendations
for the Department of Transportation and Congress. The ACAA
prohibits discrimination against people with disabilities in the
provision of air transportation services and is enforced by the
U.S. Department of Transportation (DOT). It applies to most domestic
U.S. carriers and airports as well as the contractors they employ
who serve the public. Overall, NCD found that “although things
have improved since ACAA was passed in 1986, people with disabilities
continue to encounter frequent, significant violations of the statute
and regulations. When they complain, they encounter an enforcement
effort that is both inconsistent and limited in scope.” The
report identified deficits both in the statute itself and in DOT’s
enforcement activities. It was sharply critical of DOT’s performance,
declaring that “ACAA implementation and enforcement efforts
over the past 12 years have been so lacking in several essential
areas as to constitute nonenforcement.” It identified “an
extreme lack of resources” as having undermined “DOT’s
capacity to develop and maintain a credible enforcement program
or to adequately support ACAA implementation.” The report
declared flatly that “DOT’s budget and staff for ACAA
enforcement are drastically inadequate.”
To correct the deficiencies it had identified, NCD made 30 recommendations.
In addition to better funding and increased involvement of people
with disabilities in DOT’s policy-making and rule-making processes,
the report offered specific recommendations for structural, administrative,
policy, and regulatory improvements in ACAA enforcement activities.
The report also concluded that, in part because DOT’s regulation
and enforcement mechanism was so weak, an effective private right
of action for violations of the ACAA was especially important: “If
ACAA’s nondiscrimination mandate is to be realized, the disability
community will have to use private right of action to create effective
incentives.” Accordingly, NCD recommended that Congress should
amend the ACAA to
- establish a statutory private right of action
and permit the award of attorney’s fees and compensatory
and punitive damages to successful plaintiffs;
- authorize the Access Board, in consultation with
the Federal Aviation Administration (FAA), to develop standards
for accessible cabin interiors and for any equipment related to
air travel access, including boarding assistance equipment;
- expand DOT’s authority to conduct public
education activities geared to consumers with disabilities and
the general public, conduct regular ACAA compliance monitoring
with the airlines, levy fines when an individual informal complaint
investigation indicates that a violation has occurred, and to
impose civil penalties for findings of pattern and practice violations;
and
- include foreign air carriers operating in the
U.S. travel market and using U.S. airport facilities within the
scope of the law and its implementing regulation.
The second report growing out of the Disability Civil
Rights Monitoring Project, Back
to School on Civil Rights, was issued on January 25, 2000, and
addressed enforcement of IDEA. Overall, NCD found that “federal
efforts to enforce the law over several administrations have been
inconsistent, ineffective, and lacking any real teeth.” It
found that states had failed to ensure compliance with the core
civil rights requirements of IDEA at the local level and that children
with disabilities and their families were far too often required
to file complaints to ensure compliance with the law. It took the
Federal Government to task for “fail[ing] to take effective
action to enforce the civil rights protections of IDEA when federal
officials determine that states have failed to ensure compliance
with the law.” Also, despite recent improvements, ED’s
“formal enforcement of IDEA has been very limited.”
After reviewing ED’s monitoring reports of states
between 1994 and 1998, NCD found that
- Every state was out of compliance with IDEA
requirements to some degree; in the sampling of states studied,
noncompliance persisted over many years.
- Notwithstanding federal monitoring reports documenting
widespread noncompliance, enforcement of the law is the burden
of parents who too often must invoke formal complaint procedures
and due process hearings, including expensive and time-consuming
litigation, to obtain the appropriate services and supports to
which their children are entitled under the law. Many parents
with limited resources are unable to challenge violations successfully
when they occur. Even parents with significant resources are hard-pressed
to prevail over state education agencies (SEA) and local education
agencies (LEA) when they or their publicly financed attorneys
choose to be recalcitrant.
- The Department of Education has made very limited
use of its authority to impose enforcement sanctions such as withholding
of funds or making referrals to the Department of Justice, despite
persistent failures to ensure compliance in many states.
- ED has not made known to the states and the public
any objective criteria for using enforcement sanctions, so that
the relationship between findings of noncompliance by federal
monitors and a decision to apply sanctions is not clear.
Back to School on Civil Rights
presented an array of recommendations to the President and Congress
to advance a more aggressive, credible, and meaningful federal approach
to enforcing IDEA. Key among these recommendations was that Congress
should amend IDEA to create a complaint-handling process administered
by the Department of Justice (DOJ) to address systemic violations;
provide DOJ with independent authority to investigate and litigate
IDEA cases; and require ED and DOJ to consult with students with
disabilities, their parents, and other stakeholders to develop objective
criteria for defining “substantial noncompliance,” the
point at which a state that fails to ensure compliance with IDEA’s
requirements is referred to DOJ for legal action. The report also
recommended that ED
- establish and use national compliance standards
and objective measures for assessing state progress toward better
performance outcomes for children with disabilities and for achieving
full compliance with IDEA, and
- develop a range of enforcement sanctions to be
triggered by specific indicators and measures indicating a state’s
failure to ensure compliance.
The report also proposed that an amount equal to 10
percent of any increase in funding under Part B of IDEA should be
allocated to DOJ and ED to enhance enforcement, complaint handling,
and technical assistance infrastructure.
The third report generated by the Disability Civil
Rights Monitoring Project, Promises
to Keep: A Decade of Federal Enforcement of the Americans with Disabilities
Act, was released on June 27, 2000. This report addressed federal
compliance, enforcement, technical assistance, and public information
activities for Titles I through IV of the Americans with Disabilities
Act. It examined DOJ’s ADA enforcement activities, the Equal
Employment Opportunity Commission (EEOC), DOT, and the Federal Communications
Commission. For each agency, the report reviewed
- complaint processing methodologies and their
outcomes,
- proactive compliance activities,
- regulatory and policy development activities,
- litigation activities and the focus and impact
of litigation choices,
- administrative organization for enforcement,
- staff training for ADA enforcement,
- technical assistance activities and public information
aimed at covered entities and at people with disabilities, and
- leadership in addressing key issues of ADA interpretation
and enforcement as new issues surface and in response to the interests
and needs of the disability community.
The report also discussed the ADA technical assistance
activities of three additional agencies: the Architectural and Transportation
Barriers Compliance Board (Access Board), NIDRR, and the President’s
Committee on the Employment of People with Disabilities.
NCD found that although the Executive Branch had consistently
asserted strong support for the civil rights of people with disabilities,
the federal agencies charged with enforcement and policy development
under the ADA had been overly cautious, reactive, and lacking any
coherent and unifying national strategy. The report observed that
enforcement efforts took a case-by-case approach rather than an
approach based on compliance monitoring and a cohesive, proactive
enforcement strategy. In addition, enforcement agencies had not
consistently taken leadership roles in clarifying frontier or emergent
issues—issues that, even after nearly 10 years of enforcement
experience, continue to be controversial, complex, unexpected, and
challenging. NCD attributed some of the leadership and enforcement
deficiencies noted in the report to the bureaucratic culture of
particular agencies, which have hewed to their traditional mission
and circumspectly defined their constituency. In some circumstances,
the agencies feared taking positions on new or controversial issues
or were too concerned about the potential backlash of a strong position.
In sum, NCD took the agencies to task for providing “halting,
reactive leadership.”
A critical finding of the report was that many of
the shortcomings in federal enforcement of the ADA were inexorably
tied to chronic underfunding and understaffing of the responsible
agencies. These factors, combined with undue caution and a lack
of coherent strategy, undermined enforcement of the ADA in its first
decade. As a result, in some areas the destructive effects of discrimination
continued without sufficient challenge, and the weak enforcement
environment contributed to problematic federal court decisions unjustly
narrowing the scope of the ADA’s protections. The body of
the report detailed the deficiencies of each agency’s enforcement
processes and activities. In all, the report presented 69 formal
findings regarding ADA enforcement and made 104 recommendations
for improving ADA enforcement.
Among the overarching recommendations in Promises
to Keep were the following:
- DOJ should provide robust and assertive
leadership for ADA implementation and develop a strategic vision
and plan for ADA enforcement across the Federal Government.
- DOJ, DOT, EEOC, and the Title II referral agencies
should strengthen methods for the timely and effective enforcement
of the ADA.
- Federal enforcement agencies should engage in
more outreach, training, and collaboration with the disability
community.
- DOJ, EEOC, and the other federal agencies charged
with ADA enforcement should promote proactive messages for media
coverage of the ADA.
In August 1994, NCD members and staff began meeting
with representatives of the disability community and officials of
Microsoft Corporation to discuss access to Windows-based software
for people with disabilities, especially people with severe visual
impairments.
As a result of that meeting, in 1995 NCD established
Tech Watch, a community-based, cross-disability consumer task force
on technology. The 11-member task force, under the leadership of
NCD member Bonnie O’Day, advised NCD on issues relating to
emerging technology legislation and helped monitor compliance with
civil rights legislation, such as Section 508 of the Rehabilitation
Act of 1973, as amended.
With the advice of Tech Watch, NCD issued The
Accessible Future, the fourth report generated by the Disability
Civil Rights Monitoring Project, on June 21, 2001. The report addressed
the status of federal enforcement of key laws—the ADA, Section
255 of the Telecommunications Act of 1996, and Section 508 of the
Rehabilitation Act, as amended—and how such enforcement relates
to electronic and information technology (E&IT), particularly
the Internet, the World Wide Web, and select information/transaction
machines. NCD observed that access to such information and technology
developments is “a double-edged sword that can release opportunities
or sever essential connections” for people with disabilities.
An overriding principle recognized in the report was
that access to electronic and information technology is a civil
right. Measuring federal implementation against this standard, NCD
concluded from documentary and empirical research that individual
leadership and commitment on the part of federal agency officials
and staff was the primary reason for their relative success, particularly
internally, in implementing pro-accessibility measures. The report
documented various steps agencies have taken to enhance E&IT
accessibility that are worthy of emulation. Among the major findings
of the report were the following:
- The adverse and predictable results of E&IT
inaccessibility on the lives of people with disabilities constitute
discrimination, albeit unintentional, where technology that could
substantially reduce the disparity exists but is not used.
- Existing civil rights laws appropriately take
costs into account in determining whether particular E&IT-oriented
accommodations or accessibility strategies are too costly. But
they do so in ways that accentuate the size and visibility of
such costs while concealing the costs of access denial.
- The current legal framework for E&IT accessibility
is actually a patchwork of laws covering certain categories of
technology in some settings, other categories in other settings,
but nowhere reflecting an overview or comprehensive assessment
of either the issues or the solutions.
- Without partnership with government and consumers,
the marketplace is not well suited to redressing the E&IT
access gap on its own. Normal competitive pressures do not operate
to encourage fully accessible design of mainstream E&IT products,
although the latent demand for such devices is considerable.
- Changes in technology and in the interpretation
of all civil rights laws emanating from the courts will require
the rethinking of both our definition of E&IT and our approach
to advocacy on behalf of its heightened accessibility.
The report presented an assortment of concrete recommendations
calculated to help “to make the electronic bridge to the 21st
century available to all Americans.”
The release of The Accessible
Future was highly publicized and generated numerous articles
and editorials about electronic and information technology access
for people with disabilities. The report has proven to be highly
influential. It is one of the most frequently downloaded reports
on the NCD Web site. The report was translated into Spanish by the
Spanish government.
Both before and after the report’s release,
NCD worked in various concrete ways to get the Federal Government,
private industry, and consumers to join forces to increase access
to E&IT for people with disabilities. In addition to meeting
with Microsoft, for example, NCD staff met with staff at the Congressional
Office of Compliance to help ensure that full coverage of the ADA
and the Rehabilitation Act is extended to all instrumentalities
of Congress, including the Government Printing Office, General Accounting
Office, Library of Congress, and other congressional offices. NCD
recommended that all congressional offices and instrumentalities
comply with Section 508 of the Rehabilitation Act of 1973, which
requires accessibility of the Federal Government’s electronic
and information technology. Subsequently, the Congressional Office
of Compliance voted to approve a motion that all Web sites maintained
by instrumentalities of Congress must comply with Section 508. Accordingly,
the Government Printing Office, using information provided by NCD,
began revising 30,000 archived Web pages to comply with Section
508 accessibility standards.
Even before the release of The
Accessible Future, NCD had addressed the role of technology
and initiatives for making technological systems and tools accessible
to people with disabilities in such reports as Access
to the Information Superhighway and Emerging Information Technologies
by People with Disabilities (1996), Guidance
from the Graphical User Interface (GUI) Experience: What GUI Teaches
About Technology Access (1996), Access
to Multimedia Technology by People with Sensory Disabilities
(1998), and Federal
Policy Barriers to Assistive Technology (2000). In May 1997,
following NCD’s recommendations to improve accessibility of
graphical user interface systems (such as systems using icons and
a mouse), Microsoft Corporation released a long-awaited technology
called Active Accessibility, which standardized the way Windows
applications communicate with adaptive equipment such as the screen
reader programs used by blind people. This new technology was a
response to the crisis people with disabilities, particularly visual
disabilities, were facing because of the rapid deployment of graphical
user interfaces. NCD encouraged Microsoft to incorporate accessible
technology into its future Windows operating systems and other related
applications. In the fall of 1997, IBM and Sun Microsystems made
public commitments to make Java-based applications accessible to
people with disabilities. NCD encouraged technology vendors to incorporate
accessibility into the design stage of their products.
At the formal event marking the release of The
Accessible Future in 2001, representatives of Microsoft,
Hewlett Packard, Compaq, Motorola, and Cingular Wireless endorsed
the goal of making their technology accessible to people with disabilities.
Each company described concrete examples of the progress made in
improving the accessibility of its products and services. These
examples included, most notably, Microsoft’s release of Windows
2000, which included an accessibility wizard that allowed users
to customize the operating system to meet their needs, and Office
XP, which featured basic speech recognition capabilities.
On November 6, 2001, NCD issued the fifth report resulting
from the Disability Civil Rights Monitoring Project, Reconstructing
Fair Housing. It examined the U.S. Department of Housing and
Urban Development’s (HUD’s) efforts to enforce provisions
of the Fair Housing Amendments Act of 1988 (FHAA) and Section 504
of the Rehabilitation Act that prohibit discrimination on the basis
of disability. Overall, NCD’s findings revealed that HUD’s
enforcement efforts had been underfunded and understaffed and lacked
a consistent strategy and direction.
The study disclosed that in the late 1990s HUD had
lost control of its own enforcement process, with investigations
taking nearly five times as long as Congress mandated and with scarcely
100 cases per year concluding with findings of discrimination. NCD
observed that enforcement of civil rights laws had been hampered
by the failure of Congress and HUD to provide the level of resources
that effective enforcement requires. Inconsistent and inadequate
funding has caused various problems for HUD, particularly in staffing
and special enforcement initiatives. In NCD’s view, however,
a larger problem was HUD’s failure to provide consistent national
leadership and management of the fair housing enforcement process.
As a result, NCD found, “the promises of the fair housing
laws have been empty for many Americans, with and without disabilities.”
The report presented 102 detailed findings and made
86 recommendations for improvement of HUD’s administrative
enforcement and compliance activities. The report broadly summarized
the recommendations as falling into the following major categories:
- The administration, HUD, and Congress must
improve the enforcement of disability rights guaranteed by FHAA
and Section 504 of the Rehabilitation Act, ensure compliance by
federal grantees, and make enforcement of disability rights laws
a priority.
- The administration, HUD, and Congress must ensure
that current and future HUD budgets are increased so that adequate
resources are devoted to enforcing housing-related civil rights
laws and ensuring compliance by federal grantees.
- HUD must provide better guidance on the meaning
of housing-related disability civil rights laws, including the
FHAA and Section 504, and must dramatically improve its collection
of data about enforcement and compliance activities.
- HUD must improve its identification and dissemination
of best practices concerning education, enforcement, and compliance
activities.
- The administration, Congress, and HUD (including
its Office of Disability Policy and National Consumer Advisory
Committee) must work together to regain public trust in governmental
enforcement and compliance activities.
NCD outlined the overall challenges facing HUD in
improving its efforts as follows:
As detailed in this report ... much more needs
to be done. HUD needs to work continuously with its various stakeholders
to ensure that management and program reforms recommended in this
report are implemented. HUD needs to work alongside NCD as part
of this process. HUD also needs to ensure that its work in this
regard incorporates the knowledge generated by the Interagency
Council on Community Living, as well as the groundbreaking work
being conducted around the Olmstead Initiative by the Department
of Health and Human Services. It is time to restructure fair housing.
During Chairperson Bristo’s tenure, NCD engaged
in numerous other activities as part of its Disability Civil Rights
Monitoring Project. These included issuing a summary of the holdings
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 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.
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 working-age 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 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 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, long-term 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 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 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.
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.
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 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;
- 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.
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 Post-Secondary 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-year-olds
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 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 physician-assisted 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 physician-assisted 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.”
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 (2000). 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
- 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 eight-year 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 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.
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
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:
- a commitment to end discrimination through
strong, steadfast support for and enforcement of disability civil
rights laws;
- full workforce integration of Americans with disabilities;
- expanded access to technology for Americans with
disabilities to increase opportunities for productivity, full
participation, and independent living; and
- 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
- advance the federal commitment to quality
education for all children, including children and youth with
disabilities, through strengthened compliance and enforcement
of IDEA;
- implement key recommendations identified by PTFEAD
to significantly reduce the 75 percent unemployment rate among
individuals with disabilities;
- 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);
- establish a system of health care that supports
the needs of people with disabilities for continued work opportunities,
prevention of secondary conditions, and long-term care supports
that allow them to live in their homes or in the least restrictive
environment;
- take national and international steps to ensure
access to technology and participation in the global technological
economy;
- 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;
- 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
- 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 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.
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 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:
- 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-to-government (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.
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 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.
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, 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 Community-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.
- 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 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. 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.
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
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 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.”
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.
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 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 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 self-sufficiency. 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.
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.
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
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
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
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 Post-Secondary 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
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
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
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
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
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.
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 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
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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