Achieving Independence: The Challenge
for the 21st Century A Decade
of Progress in Disability Policy Setting an Agenda for the Future
July 26, 1996
National Council on Disability
1331 F Street NW
Suite 1050
Washington, DC 20004-1107
(202) 272-2004 Voice
(202) 272-2074 TT
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The views contained in this report do not necessarily
represent those of the Administration, as this document has not
been subjected to the A-19 Executive Branch review process.
LETTER
OF TRANSMITTAL
July 26, 1996
The President
The White House
Washington, D.C. 20500
Dear Mr. President:
Today, as we commemorate the sixth anniversary of
the signing of the Americans with Disabilities Act (ADA), I am pleased
to submit to you the National Council on Disability's (NCD) report,
Achieving Independence: the Challenge for the 21st Century.
This is done in accordance with Section 401(b)(1) of the Rehabilitation
Act of 1973, as amended.
In 1986, NCD published Toward Independence: An
Assessment of Federal Laws and Programs Affecting People with Disabilities--With
Legislative Recommendations. That report provided careful analysis
and recommendations for improving federal laws and programs affecting
people with disabilities. Toward Independence has had a profound
impact on the way the country views people with disabilities and
brought the need for equal opportunity to the fore. Most notably,
ADA began as an NCD recommendation for a "comprehensive law requiring
equal opportunity for individuals with disabilities."
Achieving Independence is not "government as
usual." It calls for real change by and for real people. It is the
result of recommendations developed by a diverse group of 300 participants
at NCD's National Summit on Disability Policy, which took place
in Dallas, April 27-29, 1996. At this historic gathering, people
with disabilities representing the grassroots and national leaders
alike, developed recommendations that build on two major accomplishments
of the last decade--the passage of ADA and the empowerment of people
with disabilities, both of which embody your people first principles
of inclusion, independence, and empowerment.
In this era of social change, there is bipartisan
support for increasing the role of the citizen in government. This
report is a major step in that direction. NCD urges you to listen
to the voices of democracy. For only in so doing, can this nation
end its legacy of exclusion, dependence, and paternalism, and create
an America which values and empowers all of its people.
Sincerely,
Marca Bristo
Chairperson
NATIONAL COUNCIL
ON DISABILITY MEMBERS AND STAFF
Members
Marca Bristo, Chairperson
John A. Gannon, Vice Chairperson
Yerker Andersson, Ph.D.
Larry Brown, Jr.
John D. Kemp
Audrey McCrimon
Bonnie O'Day
Lilliam R. Pollo
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Hughey Walker
Kate P. Wolters
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Speed Davis, Executive Assistant to the Chairperson
Billie Jean Keith, Program Specialist
Jamal Mazrui, Program Specialist
Mark S. Quigley, Public Affairs Specialist and Editor
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Janice Mack, Administrative Officer
Amy Caplan, Office Clerk
ACKNOWLEDGMENTS
The National Council on Disability (NCD) wishes to
acknowledge and convey its sincere appreciation to the many individuals
and organizations that contributed to this report. We thank everyone
who participated in the National Summit on Disability Policy in
Dallas. All participants are listed in Appendix C. Without you,
this report would not have been possible. We particularly thank
the facilitators of the policy working groups who volunteered their
time to facilitate the groups and generously assisted in drafting
and reviewing the report. They are Linda Toms-Barker, Policy Coordination;
Gina McDonald, Civil Rights; Speed Davis, Education; Andy Imparato,
Employment; Tony Young, Social Security and Other Income Maintenance;
Peter Thomas, Health Insurance and Health Care; Alan Bergman, Long-Term
Services; Deborah Kaplan, Technology; Chris Palames, Housing; Marilyn
Golden, Transportation; and Bruce Curtis, International. We thank
the federal partners who participated in the Summit, provided technical
assistance and valuable background information, and reviewed this
report. They are Liz Savage, U.S. Department of Justice; Michael
Winter, U.S. Department of Transportation; Judith E. Heumann and
Howard Moses, U.S. Department of Education (DOED); Bob Williams,
U.S. Department of Health and Human Services; Susan Daniels and
Marie Strahan, Social Security Administration; Bonnie Milstein and
Betsy Julian, U.S. Department of Housing and Urban Development (HUD);
John Lancaster, President's Committee on Employment of People with
Disabilities (PCEPD); Andy Imparato, U.S. Equal Employment Opportunity
Commission; Larry Roffee, U.S. Architectural and Transportation
Barriers Compliance Board (the Access Board); Janet Looney, Office
of Management and Budget; and Sylvia Walker, PCEPD.
We thank Jane West for drafting this report and Carolyn
Osolinik of Mayer, Brown and Platt for generously volunteering her
technical assistance in drafting the report. We are grateful to
the many reviewers of the draft reports for their information, insights
and suggestions. They are Robert S. Ardinger, Ardinger Consultants
and Associates; Peter Blanck, University of Iowa; Dennis Cannon,
the Access Board; Mary Lou Breslin, Disability Rights Education
and Defense Fund (DREDF); Gerben DeJong, National Rehabilitation
Hospital Research Center; Martha Ford, the Arc; Bob Griss, Center
on Disability and Health; Bob Kafka, ADAPT (Americans for Disabled
Attendant Programs Today); Cheryl Kent, HUD; Mitchell LaPlante,
University of California at San Francisco; Ed Yelin, University
of California at San Francisco; Maureen McCloskey, Paralyzed Veterans
of American; Thea Spires; Rhonda Weiss, DOED; Robert Silverstein,
Senate Subcommittee on Disability Policy; Patrisha Wright, DREDF;
Warren Asher, Wilmer, Cutler and Pickering; Charlene Green, consultant;
Margaret Chmielewski, Michigan State University; Douglas Martin,
University of California at Los Angeles; Susan Webb, Arizona Bridge
to Independent Living; Laura Rauscher, Massachusetts Department
of Public Health; Rob Kilbury, Coalition of Citizens with Disabilities;
Helen Roth, OPTIONS for Independence; Gregg Vanderheiden, University
of Wisconsin; Margot Imdieke, Minnesota State Council on Developmental
Disabilities; Susan Sygall, Mobility International; Gene Chalberg,
University of Minnesota; and Mason Barney, Bowdoin College.
We thank Jacquie Sheehey, Patty Poston, Cindy Roman,
Gloria Allen, and Lauren Eyster of MacFadden and Associates, Inc.,
who assisted NCD in developing the National Summit on Disability
Policy. We thank the members of the advisory panel for the Summit,
who assisted us in its development as well as reviewing this report:
Nancy J. Bloch, National Association of the Deaf; Susanne Bruyere,
Cornell University; Justin Dart; Bill Frey, Disability Research
Systems, Inc.; Lex Frieden, Texas Institute for Rehabilitation and
Research; David Pfeiffer, Suffolk University; Jim Tuscher, Paraquad
and Jane West, consultant. We are grateful to the generous sponsors
of the Summit: Amalgamated Transit Union; American Airlines; Brinker
International; The Dole Foundation for People with Disabilities;
Hewlett-Packard; Howard University Research and Training Center;
JC Penney Company, Inc.; Kent Waldrep National Paralysis Foundation;
McDonald's USA; Mayer, Brown and Platt; Pathways Awareness Foundation,
and the Office of Special Education and Rehabilitative Services
of DOED.
We are most grateful to our own NCD Public Policy
Committee, who, under the energetic leadership of Audrey McCrimon,
guided the development of the Summit and the report from beginning
to end. Public Policy Committee members are John Kemp, Bonnie O'Day,
Shirley Ryan, and Ela Yazzie-King. We thank Billie Jean Keith, who
staffs the Committee.
TABLE OF CONTENTS
Executive Summary
Introduction
Disability Demographics
Independent Living, Disability Rights
and Disability Culture
Assessment of Disability Policy
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
International
In Closing
References
Appendix A: Recommendations
for the National Council on Disability
Appendix B: Emerging Issues
Appendix C: National Summit
on Disability Policy Participants
Appendix D: Remarks by
Marca Bristo at the National Summit on Disability Policy
Appendix E: Remarks by
Justin Dart at the National Summit on Disability Policy
Appendix F: Description
of the National Council on Disability
EXECUTIVE
SUMMARY
We have an outdated system of public policy
based on outdated attitudes toward people with disabilities.
Ed Roberts
World Institute on Disability
In 1986, the National Council on Disability (NCD)
issued Toward Independence, a report now considered a milestone
in the history of disability policy. It set the agenda for the decade,
proposing the enactment of the Americans with Disabilities Act (ADA).
The adoption of this law in 1990 was certainly the watershed event
for individuals with disabilities in the past decade.
Achieving Independence is a follow-up to Toward
Independence. Fueled by the collective empowerment and self-determination
of the disability community, it is proof of the impact of ADA. It
offers an assessment of the nation's progress in achieving equal
opportunity and empowerment in the last decade (1986-1996) and sets
the agenda for the next decade by offering more than 120 recommendations
for change.
A National Summit on Disability Policy
In keeping with the values of empowerment and consumer-directed
policy making, NCD decided to convene a summit of people with disabilities
to discuss how to achieve independence in the next decade. Over
1100 grassroots disability leaders from around the country were
asked to complete nomination forms for participation in the summit.
Three hundred participants were chosen on the basis of the following
criteria: disability and cross-disability representation; geographic
representation; ethnic, racial and other diversity; policy area
expertise and breadth of knowledge in disability policy. Eleven
policy areas were determined by NCD and the 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. These
are the policy areas that are addressed in this report.
Politicians in both the Congress and the administration
have increasingly called for "people first" government, for direct
participation by Americans in decision making. There is less interest
in hearing from intermediaries, such as professional advocates,
and greater interest in hearing the views and ideas of Americans
"outside the Beltway." The National Summit on Disability Policy
provided a forum for just such views--it was an event at which knowledgeable
people from around the country met to provide input directly into
the federal policy-making process.
With the sense of undertaking a complex and potentially
controversial challenge, NCD proceeded into this experiment in democracy.
From April 27 through April 29, 1996, people from each of the 50
states and the District of Columbia gathered in Dallas. People with
all types of disabilities were represented, as well as parents and
family members. About 20 percent of the participants were minorities,
including Native Americans, African Americans and Hispanic Americans.
Participants were from disability organizations, service-providing
organizations, academia, and federal, state, and local government.
Federal officials provided technical assistance and background information.
A special emphasis was placed on youth with disabilities. Twenty
young people with disabilities, aged 13-22, participated fully,
providing a glimpse of tomorrow's leadership and invigorating today's
dialogue.
NCD chairperson Marca Bristo and disability rights
leader Justin Dart opened the Summit, challenging participants to
be both practical and visionary. Led by volunteer facilitators chosen
from among the participants, Summit participants met in policy working
groups for three days. The groups brainstormed about their policy
areas, assessing the current state of affairs and debating how future
policy could best promote the goal of independence.
The recommendations in this report were generated
by these working groups and supplemented by suggestions from disability
leaders who could not attend the Summit. Although the working groups'
original recommendations were reviewed and amended by NCD, the recommendations
presented here remain true to the deliberations of the people who
attended the Summit and are thus reflective of the thinking of a
cross-section of disability leaders and people with disabilities
throughout the nation.
Summit participants had the opportunity to organize
additional groups to discuss topics that they believed were not
sufficiently addressed within the 11 policy areas defined by NCD
and the Summit Advisory Committee. Discussions of nine of the "emerging
issues" groups are summarized in Appendix B.
The experiment in Dallas proved to be a great success
of democracy in action. The diversity of the men and women who participated--in
terms of their disabilities, their ethnic/racial backgrounds, their
geographic homes, their ages, and their viewpoints--was remarkable.
To our knowledge, the only similar event that has occurred was the
1977 White House Conference on Handicapped Individuals, where people
from around the country assembled in Washington to determine recommendations
for disability policy. When provided with the opportunity to change
policy, people with disabilities are effective and thoughtful analysts
and contributors. NCD counts this event, in and of itself, as an
important outcome of the Achieving Independence initiative.
Conclusions
NCD draws the following conclusions about the current
state of disability policy as a result of dialogue at the Summit,
internal deliberations and a review and analysis of current law
and programs. These conclusions provide the basis for the recommendations
in the report.
1. Disability policy has made steady progress in the
last decade in empowering people with disabilities; however, this
progress is threatened, compromised, and often undermined by lack
of understanding and support in the Congress and among particular
segments of society.
The enactment of ADA and many other laws in the last
decade is evidence of considerable progress toward independence.
The sense of empowerment experienced by people with disabilities
is an important outcome of this policy progress. However, repeated
attacks on the fundamental liberty and freedom of people with disabilities
by those who do not understand the need for and the requirements
of disability rights laws challenge the progress of the past decade.
The media backlash against people with disabilities, fueled by special
interest segments of society, is evidence of the residue of stereotypes
about people with disabilities that remains pervasive in some quarters.
2. Most public policy affecting people with disabilities
does not yet promote the goals of ADA--equality of opportunity,
full participation, independent living, and economic self-sufficiency.
Public policy continues to send mixed messages to
people with disabilities, on the one hand stating independence as
a goal and on the other hand constructing significant obstacles
to its achievement. The recommendations in this report are intended
to change public policy so that it promotes the achievement of independence.
3. Most Americans with disabilities remain outside
the economic and social mainstream of American life.
Despite notable progress in the last decade, people
with disabilities continue to be less employed, less educated and
poorer than other Americans. Barriers to the tools of economic empowerment
remain significant. Minorities with disabilities are particularly
disadvantaged by barriers unique to them because of their dual-minority
status.
Overarching Themes of Recommendations
Most Americans will experience disability at some
point during their lives, either themselves or within their families.
Disability is not the experience of a minority of Americans. Rather,
like aging, it is an experience that will touch every American family.
Thus, creating an accessible and inclusive society is important
for all of us.
When Americans with disabilities achieve independence,
the benefits to society are compelling. People with disabilities
want to be employed, educated, participating, tax-paying citizens
living in the community and contributing to the economic and social
fabric of American life. Federal funds should be an investment in
those goals, an investment in independence, rather than a trap of
dependence.
The recommendations provided in this report are offered
in the context of balancing the national budget, with a priority
on investment in human capital. In the long run, investments in
the productivity and mainstream participation of people with disabilities
are essential to achieving a balanced budget, a maximally productive
society, and an America that is able to continue to provide economic
leadership in an increasingly competitive world marketplace.
The following are overarching themes of the recommendations
in this report.
1. Existing laws should be more vigorously enforced.
While they are aware of the dedicated commitment of
officials and employees at federal enforcement agencies, virtually
every policy working group at the Summit discussed the need for
greater enforcement of existing law. The lack of adequate resources
dedicated to enforcement limits the impact of disability laws. The
Congress and the administration must commit additional resources
to enforcement.
2. People with disabilities should direct policy and
decision making when they are affected by the outcome.
As the Summit in Dallas demonstrated, people with
disabilities are knowledgeable, effective decision makers. However,
policies are frequently developed and carried out with little involvement
of people with disabilities. Too often the outcome is that people
with disabilities have little choice about the services, programs,
supports or accommodations they may receive. Decisions have already
been made for them. The empowerment of choice is a key to achieving
independence.
3. Outreach and awareness campaigns
must be launched to educate the public about the human and societal
benefits of achieving independence for people with disabilities
and the important role that civil rights and community-based supports
play in promoting independence.
Most Americans do not understand the barriers faced
by people with disabilities, the concept of disability rights or
the need for disability rights laws. The backlash of the mid-1990s
is evidence of this lack of understanding and widespread misinformation.
Public understanding can prevent needless lawsuits and needless
mistakes, such as the construction of buildings without access.
Public support is critical to furthering the independence of people
with disabilities.
4. Incentives for the inclusion of people with disabilities
in all aspects of society must be further developed and implemented.
Disability policy must continue to open doors to full
participation. While business, industry, state and local government,
employers, and other sectors of society must meet their legal compliance
obligations, they should also be provided with incentives to go
beyond minimal compliance.
5. Principles of universal design should be universally
applied.
Universal design involves developing and producing
products that are usable by people with a wide range of functional
capacity. Most families will experience disability in their lifetimes.
Ensuring that technology, housing, transportation and other aspects
of community life are designed to accommodate people with disabilities
will ensure a more inclusive and productive society for all Americans.
6. Systems, services, and supports for people with
disabilities must be further developed as a part of the mainstream
of community life.
Too often people with disabilities face unnecessary
barriers to full participation, such as employment, because the
supports they need to fully participate are not available to them.
Too often those supports are available only in segregated settings
or for those who are not working. Community-based services and supports
are critical to independence.
7. Accurate data about people with disabilities should
be regularly collected, analyzed and reported.
Policy development and implementation are inhibited
by a lack of statistical information about people with disabilities.
Regular reporting of statistics, such as employment rates, will
promote policy development, implementation and public understanding.
Without such data, people with disabilities and policy makers are
unable to accurately assess the nation's progress in meeting the
goals of ADA and achieving independence for people with disabilities.
The Challenge for the Future
People with disabilities are well aware of the tools
they need to achieve independence. 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.
INTRODUCTION
NCD undertook this examination and analysis
with awareness that the world has changed significantly in the past
decade--politically, socially and economically. Specifically, we
note four trends that served as a context for reflections about
the last decade in disability policy and discussions about the future
disability policy agenda.
First, technology has evolved to such a point that
the very nature of American life is changing. Americans increasingly
exchange information and messages by E-mail; we surf the Internet
for entertainment; we have conference calls by computer; we talk
on cellular telephones from our cars; we balance our budgets and
pay bills with computer programs. Computer literacy is becoming
a basic skill for elementary school children. Card catalogs at public
libraries are increasingly being replaced by on-line listings. The
future promises expanded utilization of the information superhighway
and the approaching obsolescence of routine hard-copy information
exchange and communication.
Second, work has changed. Corporate trends of downsizing,
merging and decreasing middle management have escalated. Job security
is limited. Rarely does an individual stay with the same job, or
career, for a lifetime. Benefits, such as health insurance and retirement
plans, are of greater concern as job changing increases. People
now expect to have several careers in a lifetime and must retrain
to be prepared and remain marketable. Fewer jobs require physical
labor and more require the provision of services. Self-employment
is increasingly an option as technology minimizes geographical barriers.
The workplace has become more flexible and more family-friendly
as flextime, family and medical leave, and day care have become
standard fare.
Third, the role of government is changing. Americans
are frustrated with the ever-increasing federal deficit and its
corollary--a large Federal Government. The current trend of a decreasing
federal role and a concomitant increasing state role is likely to
continue. The private sector may come to play a larger role in addressing
problems that used to be the domain of government. The nature of
government programs is increasingly being defined as one of "helping
individuals to help themselves" with a wariness about the potential
dependence that extended government support may engender and a hesitance
to intrude in private sector decision making.
Fourth, our world has increasingly become a global
community. No more are nations separated by geography and borders.
Mass telecommunications, the development of a global economy, and
increased interdependence bring the world's citizens closer together.
Domestic developments have international ramifications. This is
as true in the disability community as it is in other sectors of
society.
It is in the context of these general societal trends
that NCD embarked on an assessment of the progress made in the last
decade in disability policy and agenda setting for the future. The
goals of the Americans with Disabilities Act (ADA) and the principles
of independent living provided the touchstones for our deliberations
as we considered how they should guide disability policy into the
next millennium.
While this report addresses all people with disabilities,
it is important to point out some subgroups of the disability community
who continue to be disenfranchised. Minorities with disabilities,
including African Americans, Hispanic Americans, and Asian Americans,
face dual discrimination and a unique set of barriers compounded
by their membership in two minority groups. Likewise, women with
disabilities face dual barriers.
Native Americans with disabilities and Indian tribes
sometimes are not covered by the laws and programs described in
this report or are covered in part. Since tribal governments are
separate government entities, the application of federal law to
Indian tribes is unique and often unclear. For example, the extent
to which ADA applies to Indian tribes is still being determined.
Some disabilities are less acknowledged and less understood
than others. For example, people with multiple chemical sensitivities
have a particularly difficult time securing recognition for their
disability. Most people do not understand the chemical and environmental
barriers that preclude such persons' access to the most basic and
essential areas of life, such as housing and education.
NCD intends this report to address all people with
disabilities, no matter what their disabilities or their other characteristics.
People with disabilities are a diverse group of Americans with as
diverse a set of needs as any other group of Americans. The common
experience of disability is what defines us for the purposes of
this report.
This report is organized in the following manner.
Two background sections--Disability Demographics and Independent
Living, Disability Rights and Disability Culture--begin the report
to provide a context for the policy discussion and recommendations
that follow. Eleven discrete policy areas are then addressed, providing
an overview of progress in the last decade, current issues, a list
of significant relevant legislation enacted in the last decade,
and recommendations for the future. The report is intended to provide
a summary of each policy area rather than a comprehensive analysis.
Appendix A provides recommendations made by participants at the
National Summit on Disability Policy to NCD for NCD activities and
initiatives. A summary of discussions held about emerging issues
at the Summit appears in Appendix B. Other appendices list Summit
participants, give the text of remarks made by Marca Bristo and
Justin Dart at the Summit, and provide a description of NCD.
This report will reveal that while much progress has
been made in disability policy in the last decade, much remains
to be done to shape public policy so that it promotes the achievement
of independence for people with disabilities.
DISABILITY
DEMOGRAPHICS
Disability used to signal the end of active life.
Now it is a common characteristic of a normal lifespan. Sooner
or later it will occur in the lives of most people, surely in
the life of every family.
Justin Dart
"Fallacy and Truth About the ADA"
The Washington Post, July 18, 1995
Similarly deceptive is the now-popular figure
of "43 million people with a disability"...for it implies that
there are over 200 million Americans without a disability. We
in the independent living/disability rights movement have coined
the term TABS--Temporarily Able-Bodied. But the metaphor of being
but a banana-peel slip away from disability is inappropriate.
The issue of disability for individuals...is not whether but when,
not so much which one but how many and in what combination.
Irving K. Zola
"Disability Statistics, What We Count and What It Tells Us"
Journal of Disability Policy Studies,
Vol. 4, No. 2, 1993
Disability, like aging, is increasingly an artifact
of American society. Advances in public health, medical treatment,
and technology enable people to live longer lives. The longer one
lives, the more likely one is to develop a disability. Premature
infants who once would have died at birth now live. People injured
in car accidents, diving accidents, and war now survive, when once
they would have died. The increasing presence of people with disabilities
in society, like the increasing proportion of elderly people in
society, is a testament to the success of modern science.
As a group, people with disabilities are older, poorer,
less educated and less employed than people without disabilities.
The most widely accepted estimate of the number of people with disabilities
is 49 million non-institutionalized Americans (McNeil 1993). As
such, people with disabilities constitute the single largest minority
group identified in the United States, surpassing the elderly (about
33.2 million) and African Americans (about 32.7 million) (Bureau
of the Census 1995).
Data from the 1990 Census indicate that about 2.3
million residents of institutions have disabilities, most of these
residing in nursing homes. Others live in mental hospitals, correctional
institutions and mental retardation facilities. Mental disability
is the most frequent impairment cited among those living in institutions
(LaPlante 1991). In the last decade, the number of people with disabilities
who are homeless has increased, particularly those with mental disabilities.
The percentage of people with a disability increases
with age. While 5 percent of the population less than age 18 has
a disability, 84.2 percent of those age 85 and over have a disability.
Of those age 18-44, 13.6 percent have a disability, while of those
age 45-64, 29.2 percent have a disability (McNeil 1993). As the
baby boom generation advances in age, the number of people with
disabilities will likewise increase.
There are differences in the prevalence of severe
disability among races, ethnicity groups and sexes. For the population
aged 15-64, 7.4 percent of Whites had severe disabilities, compared
to 12.7 percent of African Americans, 11.7 percent of American Indians,
Eskimos or Aleuts, 9.1 percent of those from Hispanic origin and
4.5 percent of Asian or Pacific Islanders. Males had a disability
rate of 18.7 percent and a severe disability rate of 8.1 percent.
For females, the corresponding rates were 20.2 percent and 11 percent
(McNeil 1993).
Education
People with disabilities have a lower level of educational
attainment than people without disabilities. While improvements
in the last decade have been documented, a gap between people with
and without disabilities remains in terms of both high school and
college graduation. For example, only 14 percent of people without
disabilities, but 34 percent of people with disabilities, have less
than a high school education (Yelin 1996).
The dropout rate for high school students with disabilities
decreased from 27.4 percent to 22.4 percent between 1986-87 and
1991-92. Between 1984-85 and 1991-92, the percentage of students
with disabilities completing high school rose from 55 percent to
64 percent (U.S. Department of Education [DOED] 1994).
Few students with disabilities go on to postsecondary
school; however, the number is increasing. One study found that
when students with disabilities had been out of high school 3 to
5 years, fewer than one-third had enrolled in postsecondary education
programs, less than half the rate of youth in general (DOED 1993).
However, in 1991 almost 9 percent of college freshmen were students
with disabilities, whereas in 1978 less than 3 percent were students
with disabilities (DOED 1995a).
Among people with disabilities, minorities are less
educated than non-minorities. For example, while 30.7 percent of
Whites with disabilities have less than a high school education,
43.3 percent of minorities have less than a high school education
(Yelin 1996).
Income Status
People with disabilities are poorer than people without
disabilities. In January 1995, 30 percent of people with work disabilities
had incomes below the poverty level, compared with 10.2 percent
of the working-age population without work disabilities. Of those
with severe work disabilities, 35.8 percent had incomes below the
poverty level (LaPlante et al. 1996).
While the average family income for all families in
1995 was $46,478, it was only $28,067 for families of people with
disabilities. Among families with disabilities, those who were White
had an average family income of $30,216, while those who were minorities
had an average family income of $20,587 (Yelin 1996).
Employment
People with disabilities are twice as likely as people
without disabilities to be unemployed. In 1995, 10.1 percent of
the population aged 16-64, or 16.9 million people, had a work disability.
Of these, 11.4 million had a severe work limitation and were not
participating in the labor force, with a cost to society of about
$150 billion (LaPlante 1995). People with disabilities who are minorities
are less likely to be employed than people with disabilities who
are not minorities.
Among people with disabilities, those who are minorities
are less likely to be working than those who are White. While 31.2
percent of Whites with disabilities were employed in 1995, only
19 percent of non-Whites were working (Yelin 1996).
According to polls of 1000 people with disabilities
taken in 1986 and again in 1994, there was virtually no change in
the proportion of people with disabilities who are working. Both
polls found about two-thirds of working-age people with disabilities
not working. Somewhat fewer adults with disabilities were working
full-time in 1994 (20 percent) than in 1986 (24 percent) (Lou Harris
and Associates 1986, 1994). This lack of increase in the employment
rate of people with disabilities persists despite an increase in
their overall education level.
Note: As this report went to press, the President's
Committee on Employment of People with Disabilities notified NCD
that it would soon release new employment figures for people with
disabilities that are more encouraging than the information cited
above. These figures are based on a new survey by the Census Bureau.
INDEPENDENT
LIVING, DISABILITY RIGHTS AND DISABILITY CULTURE
In its broadest implications, the independent
living movement is the civil rights movement of millions of Americans
with disabilities. It is the wave of protest against segregation
and discrimination and an affirmation of the right and ability
of persons with disabilities to share fully in the responsibilities
and joys of our society.
Ed Roberts
1977
The dignity of risk is the heart of the independent
living movement. Without the possibility of failure, the disabled
person lacks true independence and the ultimate mark of humanity,
the right to choose.
Gerben DeJong
1983
The key force behind a rethinking of policy toward
persons with disabilities has been the independent living movement.
Judith E. Heumann
"Building Our Own Boats"
1993
For generations, society has viewed people with
disabilities as citizens in need of charity. Through ignorance
we tolerated discrimination and succumbed to fear and prejudice.
But our paternalistic approach did no more to improve the lives
of people with disabilities than labor laws restricting women
in the workplace did to protect women. Today we are shedding these
condescending and suffocating attitudes--and widening the door
of opportunity for people with disabilities....People with disabilities
are here today to remind us that equal justice under the law is
not a privilege but a fundamental birthright in America.
Senator Ted Kennedy, during the
Senate's passage of ADA
July 13, 1990
America's mission was and still is to take diversity
and mold it into a cohesive and coherent whole that would espouse
virtues and values essential to the maintenance of civil order.
There is nothing easy about that mission. But it is not Mission
Impossible.
Former Representative Barbara Jordan
1993
A hallmark of the past decade has been the growth
of the disability rights movement and the independent living philosophy.
Just as civil rights movements for African Americans and women propelled
political, social and legal changes in society, so too has the disability
rights movement.
During the 1960s and 1970s people with disabilities
began to organize themselves to gain greater access to society and
to challenge widely held stereotypic beliefs and attitudes about
them. Influenced by the antiwar movement of the 1960s, the Black
civil rights movement of the 1960s and the feminist movement of
the 1970s, disability leaders began to articulate an agenda and
engage in activities to promote their civil rights. Although there
is no one defining event marking the birth of the independent living
movement, the determination of a group of students with disabilities
to attend the University of California at Berkeley in the 1960s
is often considered the pivotal effort that began the disability
rights movement. Those students were led by Ed Roberts, at the time
a young man with significant disabilities who was determined to
go to college (Shapiro 1993).
Other people with disabilities began organizing groups
around the nation. For example, in 1971, Judith E. Heumann formed
a group called Disabled in Action to advocate for disability rights
in New York. Grassroots organizations in communities around the
country organized to seek community-based services that supported
their independence in lieu of institutions and services that fostered
dependence. In Washington, a national coalition--the American Coalition
of Citizens with Disabilities--was formed to monitor and influence
legislation.
Independent Living Philosophy and Services
The three cornerstones of the independent living philosophy
are consumer sovereignty, self-reliance, and political and economic
rights. The philosophy rejects the supremacy of professionals as
decision makers and views disability as an interaction with the
society and the environment rather than as a medical condition or
physical or mental impairment (DeJong 1979). Essential features
of the independent living service model include consumer control,
a cross-disability emphasis (inclusion of people with all types
of disabilities--mental, physical, sensory), a community-based and
community-responsive approach, peer role modeling, provision of
a wide range of services, a community advocacy orientation and open
and ongoing access to services (Lachat 1988).
Beginning in 1978, funding for independent living
services was authorized through Title VII of the Rehabilitation
Act. These funds were authorized to promote the development of service
programs operated by and for people with disabilities. In 1979,
10 independent living center were funded throughout the country.
Today there are over 200 centers throughout the states, providing
information and referral services, peer counseling, independent
living skills training, and individual and systems advocacy (Smith,
Frieden and Richards 1995).
The Disability Rights Perspective
The disability rights perspective views people with
disabilities as a minority group that has been subject to discrimination
and unfair treatment--in legal terms, a class of people. It stands
in contrast to a charitable perspectives which views people with
disabilities as unfortunate and deserving of pity and care. Likewise,
it stands in contrast to a medical model, which views people with
disabilities as needing to be "cured." It also stands in contrast
to a rehabilitation perspective, which views people with disabilities
as needing experts and professionals who can provide services to
enhance the functioning of the individual. During the 1980s, the
disability rights perspective has become the dominant perspective
adopted by leaders of the disability community and reflected in
their approach to public policy. One commentator has described the
evolution of regard for people with disabilities as moving from
"caste to class" (Disability Rights and Education Defense Fund 1981).
The tenets of other civil rights perspectives apply
to the disability rights perspective. The defining aspect of the
perspective is that people with disabilities, as a group, have been
subject to pervasive and persistent discriminatory treatment. The
remedy for such treatment is a prohibition against discrimination,
protection of civil rights, and heightened empowerment of people
with disabilities. Beginning with the passage of Section 504 of
the Rehabilitation Act of 1973, people with disabilities were acknowledged
by the Congress as a class of people subject to pervasive discrimination.
The Americans with Disabilities Act (ADA) affirmed this view. Disability
policy has increasingly acknowledged that--like race, ethnicity,
gender, and age--disability is a characteristic that invites discrimination.
The notion of disability rights is a relatively new
concept, yet to be widely understood by the public. While people
generally acknowledge racism and sexism as realities to be challenged,
discrimination against people with disabilities often goes unperceived.
Furthermore, paternalistic acts and attitudes toward people with
disabilities are often expected and accepted, when in fact they
are acts and attitudes of discrimination and should be so labeled.
Many organizations have evolved over the last couple
of decades to promote and defend the rights of people with disabilities
such as the Disability Rights Education and Defense Fund, Americans
for Disabled Attendant Programs Today, the National Council on Independent
Living, the National Association of Protection and Advocacy Systems,
the National Parent Network on Disabilities and the Consortium for
Citizens with Disabilities, which is based in Washington and comprises
over 100 national organizations.
The Disability Vote
With 35 million voting-age Americans, the disability
community constitutes a significant voting bloc. The impression
of the disability community as a silent and overlooked minority,
a "sleeping giant," is changing. Data from a study of the 1988 presidential
election strongly suggest that George Bush gained votes among voters
with disabilities because of his outreach efforts. It is likely
that the disability vote helped win the election for President Bush
(National Organization on Disability 1996). Disability rights advocates
are currently working aggressively within both major political parties
to attract the disability vote for the next presidential election.
Efforts are under way within the disability community to register
people with disabilities to vote.
Disability Culture
The past decade has witnessed the evolution of the
notion of what some have described as disability culture, a corollary
to the self-identification of people with disabilities as a minority
group. As people with disabilities have increasingly come to identify
with each other, and to express themselves artistically through
graphic arts, performing arts and participation in the cultural
life of society as a whole, they have increasingly identified their
own cultural affiliation, which, as with other minority groups,
may mitigate the effects of social devaluation. A function of disability
culture is a celebration of the uniqueness of disability and a sense
of belonging in a world that is often rejecting. Key aspects of
disability culture have been identified as unique communication,
disability humor, a sense of shared history in society, evolving
language and symbols, a common worldview, and shared strategies
for surviving and thriving (Gill 1995).
Disability Studies
As the disability community has grown, its researchers
and academics have sought to develop a home in academia. In much
the same way that the civil rights movement for African Americans
generated departments of African American studies and the feminist
movement generated departments of women's studies, the disability
community has promoted the notion of developing disability studies
as a discrete area of academic inquiry. The field of disability
studies, described as the study of the lived cultures and experiences
of individuals with disabilities, is in its early stages of development.
ASSESSMENT
OF DISABILITY POLICY
Policy Coordination
We must forge a national disability policy that
is based on three simple creeds--inclusion, not exclusion; independence,
not dependence; and empowerment, not paternalism.
President Bill Clinton
1996
...an exclusively special needs approach to disability
is inevitably a short-run approach. What we need are more universal
policies that recognize that the entire population is "at risk"
for the concomitants of chronic illness and disability....Without
such a perspective we will further create and perpetuate a segregated,
separate but unequal society--a society inappropriate to a larger
and older "changing needs" population.
Irving K. Zola
"Universalizing a Disability Policy"
1989
The Americans with Disabilities Act (ADA) is the most
comprehensive policy statement ever made in American law about how
the nation should address individuals with disabilities. Built on
the principles of equal opportunity, full participation, independent
living and economic self-sufficiency, the law reflects the disability
community's convictions and determination to participate as first
class American citizens and to direct their own futures.
Yet little progress has been made in ensuring that
the various federal programs for people with disabilities are grounded
in the principles of ADA. People with disabilities receive conflicting
messages from national disability policy. While national policy
promotes employment, national policy does not ensure access to health
insurance unless an individual with a disability is not working.
While full participation in the community is a national goal, many
people with disabilities can receive the support services they need
only if they live in segregated settings. While the Federal Government
spends about $175 billion per year on people with disabilities,
most of this amount continues to support dependence rather than
independence. Decisions about the services people with disabilities
will receive continue to remain largely in the hands of service
providers, rather than people with disabilities.
Progress in ensuring that people with disabilities
are considered and included in generic policy areas has begun. For
example, there has been a concerted effort to ensure that the National
Information Infrastructure will be accessible to and usable by people
with disabilities. President Clinton's AmeriCorps program explicitly
included people with disabilities as both volunteers and recipients
of volunteer services. Yet national employment and labor policy,
as well as foreign policy, have done little to acknowledge people
with disabilities.
The Federal Level
There are multiple federal programs for people with
disabilities, administered by different federal agencies. The programs
differ in their eligibility criteria and foci, depending on their
purposes and their target populations. The largest federal disability
programs are Social Security and Medicaid/Medicare.
Disability programs are distributed through a number
of committees and subcommittees in Congress that rarely consult
with each other during policy development. For example, in the Senate
the $63 billion Social Security programs and the $43 billion Medicaid
and Medicare programs are under the jurisdiction of the Committee
on Finance. The Subcommittee on Disability Policy of the Committee
on Labor and Human Resources has jurisdiction over vocational rehabilitation,
special education and ADA. Yet there is no mechanism for these committees
to jointly address the conflicts or promote coordination of the
disability policies under their respective jurisdictions.
The current climate in Washington is one of consolidation,
downsizing, block grants and performance partnerships. Legislation
intended to consolidate vocational rehabilitation with other federal
employment programs was introduced and almost enacted in 1995. Congress
is considering transforming the Medicaid entitlement into a state
block grant.
While consolidation offers increased flexibility in
service delivery, it also brings the risk of loss of services altogether
as potential recipient groups are left to battle for a fair share
at the state level. Many people with disabilities believe they may
lose funding and services under state block grants, as they are
often put in a position of competing with other groups who have
historically been more successful in staking their claims at the
state level.
The State Level
Much of the consolidation impetus has been generated
by states that are frustrated trying to implement so many federal
programs with disparate requirements. State programs generally reflect
the categorical nature and complexity of programs at the federal
level. There is no single point of entry or access point for people
with disabilities to receive information or services.
A number of states have attempted to address these
problems by consolidating programs at the state level. The state
of Wisconsin developed a county-administered program, the Community
Options Program, designed and funded to divert and relocate people
with significant disabilities from institutions. The state of Oregon
enacted legislation authorizing the state to set up a comprehensive
health and social service system for people with disabilities.
A recent report examined the states' experiences in
administering disability programs and recommended the consideration
of consolidation at the federal level with a strong consumer and
community focus. A set of consumer-centered values was recommended
to drive reform with a common intake process and a consumer-centered
individualized plan for each customer who receives services under
the consolidated system (Scully, Snow and Riley 1995).
The Customer's Perspective
The customer with disabilities seeking services faces
a maze of programs, requirements and bureaucratic obstacles. Separate
intake systems and eligibility determination processes are frustrating
and wearing. Furthermore, even after being determined to be eligible
by an agency or service provider, the customer is empowered with
little leverage to participate in decisionmaking about the services
she or he will receive. Duplication and conflict are commonplace.
A customer in one state was reported to have 12 different case managers
(Scully, Snow and Riley 1995).
Waiting lists are another common problem. Rarely do
states provide services to all eligible recipients in any service
area. For example, state vocational rehabilitation agencies now
use an order-of-selection process because the demand for their services
is so much greater than their resources. Lack of adequate resources
is usually the explanation for waiting lists.
Data Collection
Lack of detailed and current data about people with
disabilities remains an obstacle to effective policy development
and analysis. Major national surveys do not routinely collect or
report data about people with disabilities the way they collect
and report data about other protected groups, such as women, the
elderly, and racial and ethnic minorities. Disability statistics
lag well behind many areas of health and social statistics. There
is neither a national survey that regularly gathers information
about the nation's population with disabilities nor an agreed-upon
definition of disability. Data about people with disabilities are
often gathered from survey questions that were not intended for
this purpose. Survey questions often reflect a medical orientation
to disability rather than an independent living orientation. The
major national surveys used are the National Health Interview Survey
(NHIS), the Survey of Income and Program Participation and the Current
Population Survey.
There has been considerable discussion in the last
decade about the limitations of these databases and the need for
a database specifically designed to answer policy- relevant questions
about people with disabilities. One outcome of this discussion has
been the creation of the most comprehensive national survey on disability
ever undertaken in this country--the 1994/1995 Disability Survey,
a supplement to the NHIS. Questions for this survey were extensively
reviewed by the federal disability community, advocacy groups, and
academics. In addition, the questionnaire was voluntarily tested
by people with disabilities and their families. It is intended to
address key policy questions, including why employment among people
with disabilities is so low and why the Supplemental Security Income
(SSI) and Social Security Disability Insurance (SSDI) rolls have
experienced so much growth. Survey results should be released in
1997.
There are currently no plans to repeat this survey
later. It is scheduled as a one-time, snapshot event; thus it does
not appear to be a vehicle for examining trends over time in employment,
income, and other areas important to monitoring the status of people
with disabilities.
Little improvement in data collection about people
with disabilities has been evident in the last decade. The limited
availability of data about people with disabilities continues to
thwart policy analysis and promote an "out of sight, out of mind"
viewpoint.
Recommendations
During the last decade, public policy discussions
have increasingly focused on enhancing the consistency and coordination
of programs and policies for people with disabilities. Even though
discrepancies and conflicting purposes remain the rule rather than
the exception, efforts are under way at both federal and state levels
to bring consistency and coordination to benefits and services.
However, the goals established by ADA do not yet drive policies
that affect people with disabilities, nor are they used to drive
budget and spending priorities and allocations. In most states,
people with disabilities seeking services from the many service
systems are still too often frustrated by the maze they must negotiate
to try to meet their needs.
Goals of ADA
1. All federal agencies involved with policies or programs
that affect people with disabilities should ensure that such policies
and programs promote the goals of ADA. In cases where there is conflict,
changes should be initiated, including drafting legislative proposals
if required.
All policies and programs should support empowerment,
independence, economic self-sufficiency, full participation and
equal opportunity. Many programs and policies continue to present
obstacles to the achievement of these goals rather than creating
opportunities.
Coordination and Collaboration
2. The Federal Government and the Congress should develop
mechanisms to ensure consistency, collaboration and coordination
among federal agencies that administer policies that affect people
with disabilities and among Congressional committees with jurisdiction
over policies and programs that affect people with disabilities.
The goal of such mechanisms should be to ensure that
programs and policies interact in such a manner as to promote independence
for people with disabilities rather than to create obstacles. Such
mechanisms, which may be interagency committees in the case of the
Federal Government, should also work to avoid duplication and to
maximize use of existing resources.
3. Federal agencies should work to reduce the redundancy
and duplication imposed upon people with disabilities when they
are seeking to participate or are participating in programs or services
and should seek to maximize customer satisfaction with entry into,
participation in, and exit from programs and services.
The Federal Role
4. If the Federal Government grants greater authority
to states, it must retain responsibility and authority for ensuring
rights and protections; standards for eligibility for supports,
benefits, and services; and meaningful outcomes for people with
disabilities.
Full Participation in the Community
5. Congress should revise federal laws and agencies
should revise regulations (and require or encourage states to do
the same) to ensure that all supports and services are provided
to all people with disabilities in the most inclusive setting. Revisions
should foster independence and interdependence rather than dependence.
A national clearinghouse of successful approaches should be established
and supported.
Consumer Control
6. Congress and the President should ensure that people
with disabilities are significantly involved in the development,
direction and implementation of policies that affect them.
Policy development continues to take place without
the participation and involvement of people with disabilities. Sometimes
people with disabilities are involved in a minor or token fashion.
People with disabilities must play the central role in directing
policy that is critical to their empowerment.
7. Congress, in consultation with NCD, should a) establish
a policy that people with disabilities and their families will control
resources necessary to obtain services and supports of their choice
and b) hold states accountable for implementing this policy.
Such a policy should include the provision of guidance
and support in assisting people with disabilities and their families
in making informed choices. Self-advocacy training, focusing on
skills, should be authorized. The customer service principle so
common in the private sector, with a focus on customer satisfaction,
should be paramount. Marketing and outreach strategies should be
used to inform potential consumers of the services and supports
that are available.
Equity
8. Congress and the administration should establish
equitable policies that address the needs of all people with disabilities
(including appropriating funds as needed to include those with emerging
disabilities and recently recognized disabilities) regardless of
disability diagnosis or label, age, gender, ethnic/cultural background,
religion, familial status or sexual orientation.
Outreach to those who are often underrepresented is
critical to ensure equitable access for all people with disabilities,
no matter what their disability and no matter what their race, ethnicity,
or other characteristics.
Functional Need, Not Diagnosis or Label
9. Congress and the administration should base policies
and services for people with disabilities on needs rather than on
disability categories or labels.
The needs of people with disabilities change over
time and are a function of the interaction between disability-related
limitations and environmental factors. Some supports and services
should be made available regardless of personal resources while
others might be means tested. Individuals should not be required
to impoverish themselves to have access to publicly funded supports.
Accountability
10. All federal and state government agencies should
ensure that all of their communications are available in accessible
formats and that they portray people with disabilities in a manner
that is consistent with the empowerment and inclusion goals of ADA.
Data Collection and Analysis
11. The administration should ensure that all federal
statistical activities that include data collection and reporting
for other groups, such as minorities and women, include the category
of people with disabilities, using a definition based on ADA.
Federal agencies that sponsor research and data collection
that affect people with disabilities should reevaluate the economic
assumptions that are implied in typical cost-benefit analysis in
light of the new disability paradigm embodied by ADA. The Federal
Government should review existing surveys that have questions related
to disability and update those questions so that they reflect the
paradigm of disability embodied in ADA. All federal agencies conducting
surveys should ensure that people with disabilities are the respondents,
rather than using proxies. This will require alternate formats,
adaptation of telephone surveys for people with cognitive impairments,
training of surveyors in how to interview people with particular
needs, etc.
12. The Federal Government should design and carry
out a recurring longitudinal study (with a design comparable to
that of the Survey of Income and Program Participation) that routinely
collects and reports data that are relevant to the goals of ADA
and the disability community.
The Federal Government should sponsor methodological
analysis and development that will develop new measures and survey
questions appropriate to the new paradigm of disability as reflected
in ADA.
13. The Federal Government and the Congress should
ensure that questions about disability are adequately included in
the 2000 census.
14. All federal agencies should promote further analysis
of existing data related to people with disabilities, particularly
data from the 1994-95 Disability Supplement to the National Health
Interview Survey.
Tribal Governments and Indigenous Peoples
15. Federal and state governments should invest resources
in working with tribal governments and indigenous people with disabilities
to ensure that all policies affecting people with disabilities are
culturally appropriate and extend beyond the federal or state government
to include tribal governments.
Many federal policies, such as ADA, were not developed
in conjunction with tribal governments; thus their applicability
to indigenous people and tribal governments is still being delineated.
In the future, Congress and federal and state governments should
work together to ensure appropriate applicability of disability
laws to tribal governments and Native Americans.
Civil
Rights
Discrimination occurs in every facet of our lives.
There is not a disabled American alive today who has not experienced
some form of discrimination. Of course, this has very serious
consequences. It destroys healthy self-concepts and slowly erodes
the human spirit.
I. King Jordan
President, Gallaudet University
1989
As a former mental patient (who now prefers to
use the term psychiatric survivor) who has been active for many
years in the movement to develop self-help and empowerment, I
have seen the crippling effect that stigma has on people who carry
the mental illness label....Indeed, this prejudice may be the
most powerful barrier that persons with psychiatric labels face,
keeping us out of the mainstream in the same way that the lack
of ramps hampers people in wheelchairs from fully participating
in community life.
Judi Chamberlin
"Psychiatric Disabilities and the ADA"
1993
Today's legislation brings us closer to that
day when no Americans will ever again be deprived of their basic
guarantee of life, liberty and the pursuit of happiness....This
historic act is the world's first comprehensive declaration of
equality for people with disabilities.
President George Bush
Statement at the signing ceremony for ADA
July 26, 1990
America is reaping the benefits of a more inclusive
society. Employers have a larger pool of qualified workers. Businesses
are opening doors to new customers. State and local governments
are enjoying broader citizen participation. Most important, individuals
are being judged not by their disabilities, but by their abilities.
President Bill Clinton
July 18, 1995
ADA has made me feel like a real American!
Gregory Dougan
Voices of Freedom
National Council on Disability
1995
Throughout history, people with disabilities have
been subject to prejudice, stereotyping and discrimination (Mayerson
1982; DREDF 1981). Beliefs about the inferiority of people with
disabilities have offered justification for their subordination
in the same way that erroneous but widely held beliefs resulted
in the oppression of women and African Americans. Disability policy,
like policy for other oppressed groups, has both guided and reflected
changes in attitudes over time. Over the last century disability
policy has evolved from an orientation of care and charity to an
orientation of medical treatment and rehabilitation to its current
orientation of empowerment and civil rights. The growth and determination
of the disability rights movement, like those of other civil rights
movements, have generated numerous civil rights laws over the last
25 years, beginning with Section 504 of the Rehabilitation Act of
1973 prohibiting discrimination against people with disabilities
when federal funds are involved. Other legislation built on this
foundation to expand the antidiscrimination mandate--the Voting
Accessibility for the Elderly and Handicapped Act of 1984, the Air
Carriers Access Act of 1986, the Fair Housing Amendments Act of
1988, and the most comprehensive civil rights legislation to date
for people with disabilities, ADA.
The Americans with Disabilities Act
People with disabilities are now protected by comprehensive
antidiscrimination legislation comparable to that for women, racial
and ethnic minorities and the elderly. Modeled after the Civil Rights
Act of 1964, ADA has contributed significantly to equal opportunity
for people with disabilities. With a legal prohibition against discrimination
and enforceable sanctions established, people with disabilities
have begun to experience the empowerment of first-class American
citizenship and the benefits of full participation. Enactment of
ADA was the key recommendation made by NCD in its landmark report
of 1986, Toward Independence.
The benefits of ADA have been documented in detail
elsewhere (Blanck 1994a, 1994b, 1996; Gostin and Beyer 1993; NCD
1995; U.S. General Accounting Office 1994; West 1991, 1996a, 1996b).
People with disabilities have experienced increased access to many
environments and services, including town halls, public libraries,
child care centers, courthouses, retail stores, restaurants, hotels,
parks, 911 emergency services, university programs and telecommunications
services. Employment opportunities have increased with the provision
of reasonable accommodations. Students with learning disabilities
can receive additional time to take the SAT. Applicants with visual
impairments can take the bar exam in large-print versions. People
who are blind or deaf can serve as jurors. People with mobility
impairments are traveling independently, some after years of staying
at home being imprisoned by the lack of access to the environment
and society.
People with disabilities feel differently about themselves
as a result of ADA. They are empowered and more confident in approaching
employers or entering public places. They are traveling places they
have never been before, shopqing in stores they never had access
to, and attending dramatic arts and musical performances at theaters
that used to exclude them. They are experiencing the pride of independence
and the satisfaction of full participation.
Following the passage of ADA, people with disabilities
have increasingly come to identify themselves as a minority group
and to be identified as a minority group in public policy. The Harris
polls of people with disabilities revealed a 14 percent increase
in the number of individuals feeling a sense of common identity
with other people with disabilities between 1986 and 1994 (Lou Harris
and Associates 1986, 1994). The last decade has also witnessed a
broadening of the disability community. People with HIV and AIDS
now identify with the disability community. The presence of people
with mental illness advocating for themselves has grown notably.
ADA is creating positive changes in American society
and culture, enhancing the national tradition of celebrating diversity
among our citizens. Notions of accessibility, accommodation and
universal design are increasingly becoming a part of how America
does business. People without disabilities can look forward to a
more accessible society as they age. Businesses have reported unexpected
positive impacts as they have expanded their markets and tapped
new employee pools.
Programs and Services Supporting Civil Rights for People
with Disabilities
Key federal programs that advocate for and protect
the rights of people with disabilities have grown steadily over
the last decade. The Protection and Advocacy Systems and their affiliate
programs (Client Assistance Programs, Protection and Advocacy for
Individuals with Mental Illness, Protection and Advocacy for Individual
Rights, Protection and Advocacy for Technology) are active in every
state serving over 600,000 individuals annually. Centers for Independent
Living are also active in every state promoting effective implementation
of the law. In addition, there has been an increase in participation
in disability rights litigation by members of the private bar and
legal services organizations. State and local laws and ordinances
barring discrimination on the basis of disability have facilitated
compliance with ADA.
The Federal Government has supported the provision
of technical assistance to both entities covered by ADA and people
with disabilities whose rights are protected by the law. Technical
assistance centers in every region of the country, called Disability
and Business Technical Assistance Centers, answer questions, provide
training and develop and disseminate materials.
Ongoing Discrimination
Despite the remarkable progress in civil rights, people
with disabilities still encounter discrimination frequently, and
access cannot be taken for granted. Between July 26, 1992, and March
31, 1996, 63,000 employment discrimination complaints were filed
with the Equal Opportunity Commission. Discrimination complaints
have been filed by people with disabilities in virtually all areas
covered by ADA, including education, transportation, state and local
government services, public accommodations and telecommunications.
In 1994, 30 percent of working-age people with disabilities indicated
they had encountered job discrimination, up 5 percent from 1986
(Lou Harris and Associates 1994). People with disabilities continue
to report obstacles in housing, transportation, education and access
to public accommodations. People who are deaf and hard of hearing
cite ongoing communication access barriers.
While ADA has had some impact on the provision of
health insurance, its comprehensive antidiscrimination mandate does
not address many health insurance practices. Preexisting-condition
exclusions, underwriting practices, and caps on benefits continue
to negatively affect people with disabilities and disadvantage them
in both access to health care and access to private health insurance
policies. In addition, people who are deaf have noted considerable
difficulty in gaining communication access to health care providers
through the provision of sign language interpreters.
People who are perceived to be "mentally ill" are
frequently subject to legal interventions applied only to them on
the basis of the label of "mental illness." Such interventions would
not be tolerated if applied to people without the label of mental
illness. Such interventions include forced treatment, involuntary
commitment, forced or coerced medication and substantial limitations
on personal freedom imposed by the judicial system.
Federal Enforcement
Every relevant agency of the Federal Government has
initiated activities to implement ADA in good faith and in keeping
with the spirit of the law. However, the Federal Government has
yet to use its full authority to enforce the law. Both Republican
and Democratic administrations have requested additional funds from
the Congress for ADA enforcement, yet such funds have not been forthcoming.
Without the infusion of additional resources, federal agencies will
remain unable to use their full authority to enforce the law. With
a 20 percent increase in workload resulting from the enactment of
ADA, the Equal Employment Opportunity Commission (EEOC) is slow
in processing complaints. The Department of Justice (DOJ) is not
investigating all the complaints it receives and the Department
of Transportation (DOT) is unable to track the complaints it receives
(West 1995). People with disabilities have repeatedly urged the
Federal Government to play a stronger role in enforcement (NCD 1994;
PCEPD 1994).
Despite the technical assistance provided by the Federal
Government, many covered entities and people with disabilities are
unaware of the requirements of the law. For example, a 1994 survey
found that only 40 percent of people with disabilities were aware
of the law (Lou Harris and Associates 1994). Outreach to small businesses
and people from ethnic and racial minorities with disabilities is
lacking (West 1994).
The Backlash
Just as other disenfranchised groups have experienced
backlashes against their efforts to empower themselves, so too have
people with disabilities. Although some in the media have taken
the time to understand the issues and provide fair and balanced
coverage, unfortunately, too often the media have highlighted "fringe"
ADA cases and characterized ADA as an example of government overregulation.
People with disabilities have often been portrayed as malingerers,
using ADA as a mechanism to avoid responsibility. People with disabilities
see ADA as a ticket into the workforce, into the marketplace and
into the community, not as a route to avoid responsibility. This
basic message is rarely communicated by the press.
Key Legislation in the Past Decade
The Voting Accessibility for the
Elderly and Handicapped Act of 1984 (P.L. 98-435) requires
that registration and polling places for federal elections be accessible
to people with disabilities.
The Air Carriers Access Act of 1986
(P.L. 99-435) prohibits discrimination against persons with
disabilities by all air carriers.
The Handicapped Children's Protection
Act of 1986 (P.L. 99-372) overturned a Supreme Court decision
and clarified that courts may award attorneys' fees to parents who
prevail in administrative or judicial proceedings brought under
the Individuals with Disabilities Education Act (IDEA). Awards under
IDEA were authorized so that they are parallel to those authorized
under other civil rights laws.
The Civil Rights Restoration Act
of 1987 P.L. 100-259) amended Section 504 and other antidiscrimination
laws to overturn the Supreme Court Grove City College v. Bell
decision, clarifying that the phrase "program or activity" was intended
to apply to an entire institution of which any component or part
was receiving federal funds.
The Protection and Advocacy for
Individuals with Mental Illness Act of 1986 (P.L. 99-319)
authorizes advocacy on behalf of people with mental illness, focusing
on freedom from abuse and neglect in institutions and for a period
of time after discharge from such facilities.
The Fair Housing Amendments Act
of 1988 (P.L. 100-430) amended the Fair Housing Act of 1968
to extend the protections afforded by the legislation to people
with disabilities, adding disability to race, color, religion, sex
and national origin as a prohibited basis for discrimination. This
legislation represented the first extension of legislation prohibiting
discrimination on the basis of disability into the private sector,
paving the way for ADA.
The Americans with Disabilities
Act of 1990 (P.L. 101-336) prohibits discrimination on the
basis of disability in employment, state and local government services,
transportation, public accommodations and telecommunications.
The Revenue Reconciliation Act of
1990 (P.L. 101-508) includes a provision called the "access
credit" that enables small businesses to claim credit against taxes
for half of the first $10,000 of eligible costs of complying with
ADA.
The Developmental Disabilities Act
Amendments of 1990 (P.L. 101-496) authorize Protection and
Advocacy Systems in every state.
The Civil Rights Act of 1991 (P.L.
102-166) reversed nine U.S. Supreme Court decisions that
restricted the protections available to covered workers in employment
discrimination cases and authorized compensatory and punitive damages
under Title V of the Rehabilitation Act of 1973 and ADA.
The National Voter Registration
Act of 1993 (P.L. 103-31) requires states to provide enhanced
voter registration services through driver's license, public assistance
and disability agencies.
The Telecommunications Act of 1996
(P.L. 104-104) requires telecommunications manufacturers
and service providers to ensure that equipment is designed, developed
and fabricated to be accessible to and usable by individuals with
disabilities, if this is readily achievable.
Recommendations
While there has been considerable policy development
in the area of civil rights for people with disabilities in the
last decade, enforcement, education and empowerment are lagging.
Expansion in some areas is needed. In particular, minorities with
disabilities face multiple and unique forms of discrimination and
disadvantage that restrict full participation.
Enforcement
1. Congress and the President must take action to ensure
that all civil rights laws affecting individuals with disabilities
are more vigorously upheld, implemented and enforced. Such measures
would not only include significantly increased funding dedicated
to enforcement of disability laws by DOJ, EEOC and other relevant
federal agencies, but would also empower and encourage state attorneys
general, state and local governments, public interest and legal
services organizations, and members of the private bar to provide
the means to redress discrimination against individuals with disabilities.
DOJ and EEOC are currently backlogged with numerous
complaints from individuals with disabilities seeking to assert
and exercise their rights under ADA. DOJ routinely returns complaints
to complainants, saying that the Department is unable to investigate
due to a lack of resources. Enforcement controlled and funded by
a limited segment of the Federal Government cannot alone be expected
to reverse the history of unequal treatment, pervasive discrimination
and unjust stereotypical assumptions that have oppressed individuals
with disabilities for decades. More expansive efforts are required
in addition to increased effort by the Federal Government to see
that all civil rights laws affecting individuals with disabilities
are fully enforced.
The affirmative action requirements of Section 501
and Section 503 of the Rehabilitation Act that apply to the Federal
Government and federal contractors should be fully implemented.
Such implementation should not include the common practice of singling
out only certain disabilities for such efforts. NCD is opposed to
the practice of targeting one or two specific disabilities. Instead,
the entire class of people with disabilities should be included
in affirmative action programs.
DOJ should more vigorously enforce the National Voter
Registration Act, ensuring that people with disabilities are provided
with voter registration services at appropriate locations.
NCD should regularly convene forums to develop strategies
that would guide enforcement.
Strengthening Civil Rights Laws
2. Congress should retain current civil rights laws
ensuring that standards promulgated under ADA are not lowered and
should, where necessary, enact legislation to strengthen current
civil rights laws so that
a) a private right of action is guaranteed to redress
all violations;
b) employment and other contracts may not be construed
to waive or supersede procedural safeguards and remedies contained
in law;
c) violators of civil rights laws are subject to
liability for compensatory and punitive damages in all cases,
with or without the intervention of the Federal Government;
Federal agencies violating Section 504 of the Rehabilitation
Act and other disability rights laws should be liable for compensatory
and punitive damages.
d) collection of costs and full attorneys' fees is
authorized without statutory limitation;
e) affirmative action is required for all individuals
with disabilities, including those working in the private sector;
The persistent high level of unemployment and underemployment
of people with disabilities warrants the application of affirmative
action as a policy remedy. This recommendation would expand the
existing affirmative action requirements for the Federal Government
and federal contractors to the private sector. Even those who are
not proponents of affirmative action acknowledge that it can have
a positive impact on increasing the employment rate of a particular
group of people. Affirmative action requirements should not include
quotas, reverse discrimination or preferences for unqualified individuals.
f) public communications and telecommunications law
is expanded to include the provision of captioning and audio description
for all materials available to the public;
g) consistent standardized universal building codes
are developed, implemented and required, at the level of standards
promulgated under ADA or a higher level;
h) discrimination on the basis of genetic information
is prohibited using the standards currently used to prohibit discrimination
on the basis of disability.
Medical Directives and Personal Choice
3. The Federal Government should act to protect children
and adults with disabilities by ensuring that "do not resuscitate"
and "no cardiopulmonary resuscitation" orders and similar medical
directives are carried out in a manner consistent with the standards
of nondiscrimination set out in civil rights and other statutes.
This policy should in no way limit the rights of adults with disabilities
to make their own personal choices and to exercise unrestricted
control regarding medical orders and treatment for themselves. Individuals
with disabilities who are considering such medical directives or
limitations on their own treatment should, however, be provided
with complete information on the ramifications of their decisions
and the full range of community support and medical resources available
to them.
Implementation
4. The Federal Government should encourage state, tribal,
county and municipal governments; regulatory agencies; territorial
and regional authorities; public licensing agencies; public schools;
zoning boards; accreditation groups; and private organizations and
entities to adopt disability policies, standards and requirements
that are consistent with ADA to help eliminate discrimination and
ensure equality of opportunity, full participation, independence,
and inclusion.
Nondiscrimination, independence, and inclusion should
be the norms throughout the United States, and ADA provides a minimum
national standard. Individual litigation based on federal law is
not and should not be the only means for effective elimination of
discrimination and the implementation of the civil rights of people
with disabilities. For example, for certain industries and activities
compliance audits could be a condition of licensing permission for
public fund-raising. In other cases, violations of nondiscrimination
standards would be a basis for revocation of professional licenses
or disbarment of a corporation.
Technical Assistance
5. Congress should appropriate significant funds to
agencies responsible for enforcing civil rights laws so that they
can develop and fund innovative collaborative efforts and partnerships
of traditional and nontraditional entities to ensure the effective
implementation of ADA. Agencies should collect information and develop
a database about effective implementation strategies.
6. The Congress and relevant federal agencies should
ensure that organizations funded to provide technical assistance
and training related to ADA, including the Disability Business and
Technical Assistance Centers, are controlled by people with disabilities.
Additional funds should be appropriated to expand such technical
assistance.
Technical assistance can be an effective tool to avoid
litigation. After six years of the provision of technical assistance,
effective models can be identified and expanded. Standards for technical
assistance should be developed by an interagency disability committee
or NCD. All training and technical assistance provided should be
fully accessible in the broadest sense and should reflect multicultural
and cross-disability diversity.
Effective technical assistance must involve both people
with disabilities who are knowledgeable about disability issues
and people with technical expertise. Sometimes people with disabilities
have both disability expertise and technical expertise. Usually
people with disability expertise and people with technical expertise
(such as architects, builders and attorneys) must form partnerships
to ensure that the technical assistance is accurate and effective.
Care needs to be taken to ensure that technical assistance is not
provided by organizations that do not have expertise in both areas.
Too often one or the other prevails and the outcome is less than
optimal. Too often people with disabilities are not in leadership
positions.
Education and Training
7. Congress should authorize and fund education and
training programs to promote greater independence and empowerment
of all individuals with disabilities, including elementary and secondary
students with disabilities, those with traditional disabilities,
and those with disabilities that are less widely recognized. The
mission and funding of independent living centers should be expanded
to carry out such education and training for this broader population.
Materials and training must inform people with disabilities
about their rights under state, local and federal laws as well as
how to exercise them and how to utilize complaint mechanisms when
they are violated. All such educational, training and informational
materials should be developed and reviewed under the direction of
people with disabilities. The training should utilize peer training
and emphasize cross-disability issues. Materials should be accessible
in format and available in various languages as well as to people
of diverse ethnic and cultural backgrounds. Materials should be
targeted to various age groups, including youth. The Federal Government
should provide such training directly and should distribute materials
directly as well as through federal, state and local governments
and territorial authorities.
8. Congress should require all federal agencies and
recipients of federal funds, including those based abroad, to undergo
training about civil rights laws that affect people with disabilities.
A mechanism should be established to provide for the
development and administration of standards for such education and
training programs. Such a mechanism could be a task force comprising
a majority of people with disabilities. The task force could also
audit compliance with education and training requirements.
Media Campaign
9. The Congress and the administration should allocate
resources to develop a national media campaign to educate the public
about issues, concerns and civil rights of all people with disabilities.
The Federal Government and Congress have funded and
launched several effective national media campaigns designed to
increase public awareness about important social issues. A multimillion-dollar
HIV/AIDS awareness and education campaign utilizing television,
printed materials and mailings, and technical assistance for the
workplace has had a significant impact on Americans' understanding
of HIV/AIDS. Similarly, campaigns to educate citizens about drug
abuse and to promote a drug-free culture have had an important impact
on the American consciousness.
Education
We must continue to be courageous in our commitment
to improve the lives of our citizens with disabilities, most especially
children, and in making American schools the best they can be
for all of our children. For the sake of America's future, we
can do no less.
Senator Bill Frist
1996
Laws like IDEA are investments in the future
of our families and our nation. IDEA is designed to help ensure
that our nation's disabled children can grow up and lead proud,
productive independent lives.
Senator Tom Harkin
1996
When kids with special needs were first given
the opportunity to go to school, they were separated. That's how
it was done because that's what we thought was best. Now we know
that it's better for kids with and without disabilities to grow
up and learn alongside one another. We need to start out when
they are young so that these kids, when they are our community
leaders, will accept people who are different and give them the
opportunities to succeed that everyone deserves.
Kathy Martin, parent
Florence, Alabama
20 Years of IDEA in America
1996
IDEA has made a difference for Maddie, a difference
that translates into her attendance at our public elementary school
a half a block from our home with other first and second graders
in her neighborhood. Her regular presence in school means that
kids of all ages greet her on the playground, acknowledge her
in stores, and expect that she is a part of the community.
Joe Wild Crea, Parent
Denver, Colorado
Improving the Implementation of the IDEA:
Making Schools Work for All of America's Children
National Council on Disability
1995
For youngsters with disabilities, as for youngsters
without disabilities, education is the key to the future. Historically
denied access to elementary and secondary school as well as higher
education, people with disabilities remain less educated than their
nondisabled peers. Like people without disabilities, people with
disabilities are more likely to experience benefits in employment
and economic well-being when they are well educated. Like people
without disabilities, people with disabilities experience education
as a lifelong endeavor. NCD believes that quality education for
our youngsters--those with and without disabilities, side by side--holds
great promise for increased integration in future generations.
Access to Elementary and Secondary Education
The Individuals with Disabilities Education Act (IDEA),
enacted in 1975, promised access to a free appropriate public education
for elementary and secondary level students with disabilities. Before
the enactment of the law, one million children with disabilities
were excluded from school, and half of those who were being educated
were not receiving appropriate programs in public schools. Many
were housed in large state institutions. Today 5.3 million students
with disabilities--12 percent of the elementary and secondary school
population--receive special education services.
Early landmark Supreme Court decisions established
that the responsibility of states and local school districts to
educate youngsters with disabilities is derived from the equal protection
clause of the Fourteenth Amendment to the Constitution. IDEA was
guided by the principles of these court decisions in ensuring a
free appropriate public education for every child with a disability,
determined on an individualized basis and delivered in the least
restrictive environment. The rights of children with disabilities
and their families are protected through procedural safeguards.
The law requires that students with disabilities be
educated in general education settings alongside their peers without
disabilities to the maximum extent appropriate. While 94 percent
of students with disabilities are in educational placements in regular
school buildings, 40 percent are in regular school classes. During
the last five years, the percentage of general education classroom
placements has increased by about 10 percent, while the use of resource
rooms has decreased. Placements in separate classes and separate
facilities have remained about the same (Department of Education
[DOED] 1995b.) IDEA authorizes the Federal Government to pay up
to 40 percent of the cost of educating students with disabilities.
The current federal contribution is approximately 7 percent; 12
percent is the maximum reached since the law's enactment.
ADA and Section 504 of the Rehabilitation Act (when
federal funds are involved) prohibit discrimination against students
with disabilities in public and elementary and secondary private
schools.
Early Intervention and Preschool Services
Public policy has increasingly acknowledged the efficacy
of providing services as early as possible to youngsters with disabilities
and their families. The family-centered focus of early intervention
services is often cited as a particularly effective and beneficial
service delivery approach. As of December 1, 1993, early intervention
programs served approximately 150,000 infants and toddlers from
birth to age three. As of October 1, 1994, every state in the nation
was participating in the early intervention program authorized under
Part H of IDEA (National Early Childhood Technical Assistance System
1995b). The number of preschool children (aged three to five) with
disabilities receiving services has increased from 261,000 in 1986
to 528,000 in 1995 (National Early Childhood Technical Assistance
System 1995a). Because of individualized early intervention services,
these students reach school better equipped to learn and participate.
Transition from School to Adult Life
By the mid-1980s, a number of studies and reports
had documented high levels of unemployment, economic instability,
dependence and social isolation among young adults with disabilities.
Youth with disabilities were not being admitted into vocational
education programs. These findings, coupled with an increased emphasis
on independent living for persons with disabilities, prompted the
development of school-to- work initiatives intended to assist students
with disabilities in making successful transitions to adult life
when they leave high school. Planning for the transition takes place
while students are still in high school and often emphasizes participation
in work sites and other community-based settings prior to graduation.
Evaluations of transition initiatives in states are currently under
way. Recently enacted school-to-work legislation further extends
transition activities for students with and without disabilities.
Postsecondary Education
Students with disabilities are increasingly participating
in postsecondary education and higher education; however, they remain
behind their peers without disabilities. The Americans with Disabilities
Act (ADA) and Section 504 of the Rehabilitation Act and ADA include
institutions of higher education in their anti-discrimination prohibitions.
Colleges and universities are required to make accommodations for
students with disabilities and to provide auxiliary aids and services.
One study found that when students with disabilities
had been out of high school three to five years, fewer than one-third
had enrolled in postsecondary education programs, less than half
the rate of youth in general (DOED 1993). However, there is some
evidence of progress. In 1991, almost 9 percent of college freshmen
were students with disabilities, whereas in 1978 less than 3 percent
were students with disabilities (DOED 1995a). The 1994 Harris poll
indicated that the percentage of adults with disabilities who had
completed at least some college increased from 29 percent in 1986
to 44 percent in 1994.
ADA and Section 504 of the Rehabilitation Act also
prohibit discrimination in trade and vocational technical schools.
Results for Students
Results for students with disabilities have improved
in the last two decades. Between 1984-85 and 1991-92, the percentage
of students with disabilities completing high school rose from 55
percent to 64 percent. The dropout rate for high school students
with disabilities decreased from 27.4 percent to 22.4 percent between
1986-87 and 1991-92 (DOED 1994). Despite this progress, students
with disabilities still lag behind their peers without disabilities
in educational outcomes. Graduates out of school up to five years
report employment rates about 18 percent higher than school dropouts
(DOED 1995a); however, students with disabilities remain less likely
than students without disabilities to graduate from high school.
Although college graduation levels have increased for students with
disabilities, they remain lower than for those without disabilities.
Relationship between Education and Employment
There is a strong association between educational
attainment and the future employment achievement of people with
disabilities. Twenty-two percent of people with disabilities with
less than a high school education report being unable to work. In
contrast, 2 percent of those with disabilities who have completed
college report being unable to work. Jobs that require higher levels
of education are often more flexible for people with disabilities,
frequently offering greater control over the pacing of work and
options such as working at home (LaPlante 1995b).
School Reform and Students with Disabilities
Inclusion of students with disabilities in state-initiated
school reform efforts across the country has been of considerable
concern to NCD for several years. Historically, students with disabilities
have been completely or partially excluded from school reform efforts
in all but a few states. The federal Goals 2000 school reform legislation
(see below) assumes that all children are ready to learn and specifically
includes students with disabilities in its coverage.
Issues such as the appropriate inclusion of students
with disabilities in state-wide performance testing have raised
questions among educators and the disability community. Concern
over issues such as these prompted the Congress to mandate a study
by the National Academy of Sciences on school reform and students
with disabilities. The Academy will issue its final report in 1996.
Current Issues of Concern under IDEA
NCD (1995b) presents an in-depth analysis of current
issues related to the education of students with disabilities in
its recent report Improving the Implementation of the Individuals
with Disabilities Education Act: Making Schools Work for All of
America's Children. Key issues addressed in that report include
the following.
Least Restrictive Environment
While the principle of educating students with disabilities
alongside their nondisabled peers has been well-established for
over two decades, too many students with disabilities still must
fight to be a part of general education classes and the general
education curriculum. In some school districts, state funding methods
provide financial incentives for placement of students with disabilities
in separate facilities. Placing students in separate settings solely
on the basis of their disability and without regard to their individual
needs is clearly prohibited by law. However, it is equally inappropriate
to place students with disabilities in regular education classrooms
without the supplemental aides and services they need. General educators
often lack training in providing instruction for students with special
needs. They often lack paraprofessional or auxiliary staff to assist
them in making accommodations or delivering services.
Many schools, however, do serve students with disabilities
quite effectively in general education classrooms. When school districts
have made a concerted effort to meet the needs of students with
disabilities in general classroom settings, they have been quite
successful.
Assessment and Labeling
The current system of identifying students as eligible
for special education sometimes results in the stigmatizing of children,
fails to identify some needy students as eligible, overidentifies
minority children as disabled in some situations, underidentifies
minority children as disabled in other situations, and often employs
assessment criteria that are inappropriate for students or insensitive
to their cultural and communication backgrounds. Children continue
to be misdiagnosed and mislabeled and tests are sometimes administered
in a language other than the student's native language or mode of
communication.
African-American students and non-English-speaking
students are overrepresented in special education. While about 12
percent of the general population of students are African American,
about 24 percent of secondary special education students are African
American (SRI International 1993). An analysis of DOED data found
tremendous variation by state in the percentage of African-American
students in special education. While 47 percent of special education
students labeled mentally retarded in Alabama were African American,
only 6 percent of those in New Jersey were African American (Shapiro
1993).
Developing methods and safeguards to ensure nondiscrimination
and equal access for minority students with disabilities is of critical
importance. The impact of inadequate or inappropriate educational
services extends well into adulthood: the employment rate of minorities
with disabilities is lower than that for nonminorities with disabilities.
Parents' Perspective
Parents report deep frustration in their efforts to
access appropriate services for their children. Resistance from
school personnel is pervasive, according to many parents. Some describe
their efforts as "battling" with the system to secure what has been
guaranteed by law for over two decades.
In spite of provisions mandating parent participation
in decision making, parents in many parts of the country remain
excluded from the process. Many report arriving at individualized
education program meetings only to be presented with a completed
program. Many parents, particularly those with low incomes or those
who are minorities, remain uninformed or ill-informed of their rights
under the law.
Discipline
The current reauthorization of the IDEA has generated
considerable controversy over the issue of disciplining students
with disabilities in school. It has been alleged that students with
disabilities are subject to more lenient disciplinary procedures
than students without disabilities.
IDEA precludes the violation of the due process rights
of students with disabilities, and the vast majority of school districts
have determined ways to effectively discipline students without
violating their rights. However, there is considerable evidence
that students with disabilities are inappropriately excluded or
removed from school because of behaviors associated with their disabilities.
A study of suspensions and expulsions in the state of Minnesota
found that while students with disabilities constituted 8 to 12
percent of the student enrollment, between 16.5 percent and 33.3
percent of the suspended students were students with disabilities
(Minnesota Department of Children, Families and Learning 1996).
A Delaware study found that students with disabilities accounted
for a disproportionate number of suspensions for weapon possession
("Educators Find" 1995). A Kansas study found that students with
disabilities are more than twice as likely to be suspended or expelled
as other students (Cooley 1995).
Many instances of disciplinary problems are the result
of inappropriate, inadequate or nonexistent programming for students
with disabilities, often due to lack of training of professionals
or limited resources for support services for students. Few regular
education teachers are trained in special education. NCD is greatly
concerned about efforts to weaken the requirements of IDEA that
would allow or invite increased suspensions and expulsions of students
with disabilities. Disciplinary action has historically been used
as a means of excluding students with disabilities from public school.
Key Legislation in the Past Decade
The Handicapped Children's Protection
Act of 1986 (P.L. 99-372) overturned a Supreme Court decision
and clarified that courts may award attorneys' fees to parents who
prevail in administrative or judicial proceedings brought under
IDEA.
The 1986 Amendments to the Education
for All Handicapped Children Act (P.L. 99-457) established
Part H, an early intervention formula grant program that assists
states in developing a coordinated, comprehensive statewide network
of early intervention services for infants and toddlers with disabilities.
The amendments also expanded the preschool program to ensure that
all children with disabilities between the ages of three and five
were receiving appropriate services, and they expanded transition
programs for adolescents.
The 1990 Amendments (P.L. 100-630)
renamed the Education for All Handicapped Children Act the Individuals
with Disabilities Education Act (P.L. 102-119), required
transition services to be provided at age 16 or younger if appropriate,
revised the definition of "children with disabilities" to create
separate categories for autism and traumatic brain injury, and included
provisions for the preparation and retention of personnel who are
racial and ethnic minorities.
The Americans with Disabilities
Act of 1990 (P.L. 101-336) prohibits discrimination on the
basis of disability in private elementary and secondary schools
as well as institutions of higher education.
The School-to-Work Opportunities
Act of 1994 (P.L. 103-239) authorizes funds for programs
to assist students, including students with disabilities, in the
transition from school to work.
The Goals 2000: Educate America
Act of 1994 (P.L. 103-227) provides a framework for meeting
national education goals by promoting coherent, nationwide, systemic
education reform and improving the quality of learning and teaching
in the classroom and in the workplace. Students with disabilities
are explicitly included in Goals 2000 programs and activities.
The 1996 Amendments to the Individuals
with Disabilities Act were pending in Congress as this report
was printed.
Recommendations
Despite progress in the last decade in educating students
with disabilities, current federal and state laws have failed to
ensure the delivery of a free and appropriate public education for
too many students with disabilities. Students with disabilities
often still find themselves in forced and inappropriate isolation,
separated from their nondisabled peers. In other situations, students
with disabilities are in regular education classrooms with teachers
with little or no training in how to educate students with disabilities
and without the supports they need. Lack of accountability, poor
enforcement and systemic barriers have robbed too many students
of their educational rights and opportunities and have produced
a separate system of education for students with disabilities rather
than one unified system that ensures full and equal physical, programmatic
and communication access for all students. Parents and students
across the country express a high level of frustration with the
continued barriers they face to full participation and effective
instruction.
A Unified System
1. The Congress and state governments should mandate
a unified system of education and training that will ensure equal
physical, programmatic and communication access to all education
programs, facilities and related benefits of education for all students
while meeting the individual needs of all students, including those
with disabilities. The mandate should include a firm timetable for
retraining teachers, changing systems, and training parents and
students about the new education policies. A single system of education
should include the following features:
a) Placements
i) Educational or training systems would presume
that every child is capable of learning in a regular classroom
setting. Special education should assume the role of a supportive
service within the context of regular education. Each classroom
should be assigned sufficient qualified personnel to meet the
needs identified in each student's individualized education
program. Students and their parents who believed that their
educational needs could not be met in a regular classroom setting
could challenge this presumption and seek a placement that would
meet their educational needs.
ii) Funding for education would be modified to
be placement neutral. Services should be provided where the
student could best be educated.
iii) Information about effective practices for
inclusion of students with disabilities in general education
would be collected and disseminated nationally.
iv) All students, with or without disabilities,
would benefit from an individualized education plan.
b) Teaching
i) All teachers who were trained and certified
would have general knowledge about educating students with disabilities.
ii) Specialists in particular areas, such as braille,
sign language instruction, and computer technology, would be
part of a cadre of resource personnel available to support students
with a range of special needs in the general instructional program
as specified in their individual education programs.
c) Curricula
i) Curricula and textbooks for all students would
be culturally sensitive and include the study of disability
culture and disability rights.
ii) Publishers of textbooks would include accurate
portrayals of people with disabilities in textbooks and in photographs
and illustrations.
iii) All students, including those with disabilities,
would be included in school reform initiatives.
iv) The content of all curricula, including written,
verbal, and computer-based materials, would be accessible to
all students. Especially, students with sight, hearing and learning
disabilities would be taught with methods and materials that
met their communication requirements.
Due Process Protections
2. The Congress and the Federal Government should ensure
that current due process protections for students under IDEA are
not weakened and that they are fully enforced.
Technology
3. The Congress, the Secretary of Education, state
education agencies and educational organizations should promote
the maximal use of modern technology in education by
a) requiring training in the availability and use
of assistive technology (both equipment and software) as a part
of teacher education programs, both inservice and preservice;
b) requiring that the individualized educational
plan for each student with a disability address the need for assistive
technology at school and at home as a part of the educational
program;
c) requiring that schools notify students with disabilities
and their parents of assistive technology and technology funding
options available for educational programs;
d) maximizing the use of technology to promote participation
by all students in the learning process;
e) ensuring adequate funding for assistive technology.
Accountability
4. The Secretary of Education and state governors should
enforce compliance with federal and state education laws. Local
education agencies should be held accountable for student outcomes.
Specifically:
a) Principals, teachers and other staff must be held
accountable to the same extent they are held accountable for all
students for ensuring the full physical, programmatic and communication
access of all students to all curricular, extracurricular and
nonacademic programs and activities.
b) School systems and state agencies must be held
accountable for providing a fully unified education system that
includes a full range of placement options suitable to meet the
unique individual needs of each child.
c) Schools must establish high educational expectations
for all students and be accountable for the results of student
learning.
d) School systems must be required to provide all
students with disabilities with the accommodations and/or alternative
assessment methods they need to effectively participate in statewide
testing programs.
Accessibility of Schools
5. The President and heads of relevant Cabinet agencies
should more strongly enforce the accessibility provisions of ADA
and the Rehabilitation Act and state governments must enforce state
accessibility laws to ensure better accessibility in schools for
students, parents, teachers, staff and members of the public with
disabilities.
Postsecondary Education
6. The President and the Congress should insist on
strong enforcement of ADA and the Rehabilitation Act in higher education
settings and should develop mechanisms to expand access and support
services for students with disabilities who seek to enter or who
are participating in postsecondary education.
Career Planning
7. The Secretary of Education and the Secretary of
Labor should expand initiatives to promote effective transition
from school to work or postsecondary education for all students,
both with and without disabilities, with a clear expectation that
work is the ultimate goal.
Additional Recommendations
The following recommendations related to effective
inclusion were made by the caucus of students with disabilities
who attended the National Summit on Disability Policy in Dallas.
1. More funding should be designated for transportation
for students with disabilities.
2. Schools should design students' schedules with their
disabilities in mind, for example, taking into account mobility
needs when students are expected to change classes.
3. Access to existing buildings should be increased
(e.g., by providing more ramps, elevators and accessible restrooms.
4. Students should receive more time and assistance
from instructional aides.
5. If students with disabilities decide to form peer
groups or clubs, school administrations should support them.
6. All students should participate in a curriculum
that covers:
a) ADA,
b) the history of disability culture,
c) positive attitudes,
d) listening skills,
e) patience,
f) appropriate terminology.
7. Teachers should participate in student advocacy
training and make use of group projects and student-assisted academics
so that the abilities of all students can be demonstrated. |