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NATIONAL DISABILITY POLICY: A PROGRESS
REPORT
November 1, 1997-October 31, 1998
NATIONAL COUNCIL ON DISABILITY
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004-1107
February 16, 1999
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
http://www.ncd.gov
This report is also available in alternative formats
and on NCD's award-winning Web site (http://www.ncd.gov).
The views contained in this report do not necessarily
represent those of the Administration, since this document was not
subjected to the A-19 Executive Branch review process.
LETTER OF TRANSMITTAL
February 16, 1999
The President
The White House
Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD),
I am pleased to submit NCD's National Disability Policy: A Progress
Report, as required by Section 401(b)(1) of the Rehabilitation
Act of 1973, as amended. This report follows up on last year's progress
report and on NCD's 1996 report and recommendations capturing the
input of disability community leaders throughout the country at
a summit held in 1996. That report, Achieving
Independence, included more than 120 recommendations for
change in a wide range of areas of public policy designed to facilitate
inclusion, empowerment and independence of people with disabilities
consistent with the vision of the Americans with Disabilities Act
of 1990 (ADA). These recommendations were elaborated upon in the
1997 progress report.
The attached progress report, which covers the period
November 1, 1997, through October 31, 1998, reviews federal policy
activities in the year following our last report, noting progress
where it has occurred and making further recommendations where necessary.
The recommendations apply to the executive branch, to the legislative
branch, and in some instances to both. Overall, NCD believes the
country continues to move forward in expanding opportunities and
inclusion for Americans with disabilities.
Nonetheless, the rate of progress is slower and less
steady than many in the disability community had hoped when ADA
was enacted into law. Federal policy remains rife with inconsistent
messages and unrealistic requirements for people with disabilities
who rely on federal programs like Social Security disability benefits,
vocational rehabilitation, Medicaid, Medicare, special education,
and Temporary Assistance for Needy Families. In addition, the backlash
against civil rights for children and adults with disabilities continues
to motivate attempts to weaken laws like the Individuals with Disabilities
Education Act and ADA.
For people with disabilities truly to accomplish the
vision of ADA, it is critical that the Administration work with
leaders in Congress to forge a disability agenda that brings children
and adults with disabilities into the mainstream of American life.
Thank you for the opportunity to play the independent
role that our mission requires and to offer an objective assessment
of progress in the last 12 months. NCD stands ready to work with
you and stakeholders outside the government to see that the public
policy agenda set out in the attached report, in Achieving
Independence, and in other NCD reports is implemented.
Sincerely,
Marca Bristo
Chairperson
(The same letter of transmittal was sent to the President
Pro Tempore of the U.S. Senate and the Speaker of the U.S. House
of Representatives.)
NCD MEMBERS AND STAFF
Members
Marca Bristo, Chairperson
Kate P. Wolters, Primary Vice Chairperson
Hughey Walker, Secondary Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Andrew J. Imparato, General Counsel and Director of Policy
Mark S. Quigley, Public Affairs Specialist
Kathleen A. Blank, Attorney/Program Specialist
Lois T. Keck, Ph.D., Research Specialist
Jamal Mazrui, Program Specialist
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
TABLE OF CONTENTS
Preface
Introduction
Progress, Concerns, and Recommendations
A. Disability Demographics and Disability
Research
1. Demographics
2. Research Challenges
B. Civil Rights
1. U.S. Supreme Court Speaks on ADA
2. Hate Crimes
3. Civil Rights Enforcement
4. Civil Rights Backlash
5. Access to the Electoral Process
6. Wilderness Accessibility
C. Education
1. Omnibus Fiscal Year 1999 Budget Bill
2. School Modernization
3. IDEA Proposals
4. Charter Public Schools
5. Elementary and Secondary Education Act
6. Education of the Deaf Amendments of 1998
D. Health Care
1. Protections in Managed Care
2. Medicare Reform
3. Medicaid Buy-in
4. Assisted Suicide
E. Long-Term Services and Supports for
Individuals and Families
1. Federal Legislative Efforts
2. Administration Efforts
3. Family Support
4. Child Care
F. Immigrants, Racial, and Ethnic Minorities
with Disabilities
1. President's Initiative on Race
2. Health-Related Funding in Minority Communities
G. Social Security Work Incentives and
Social Security Solvency
1. Work Incentives
2. Social Security Solvency
H. Employment
1. Job Training and Vocational Rehabilitation
2. Presidential Task Force on Employment of Adults with Disabilities
I. Welfare to Work
1. Federal/State Efforts
2. Increased Federal Funding
J. Housing
1. Definition of Housing for People with Disabilities
2. Home Purchase and Renovations
3. Visitability
4. Tenant-Based Rental Assistance
5. Task Force on Segregation and Services Linked to Housing
6. Compliance with Section 504 of the Rehabilitation Act by HUD
and its Grantees
K. Transportation
1. Over-the-Road Bus Regulations
2. Air Carrier Access Act
L. Technology
1. Section 508 of the Rehabilitation Act
2. Section 255 of the Telecommunications Act
3. ADA and Section 504 of the Rehabilitation Act
4. Assistive Technology Act
M. International Issues
1. Organization of American States
2. Department of State
Conclusion
Appendix
Mission of the National Council on
Disability
PREFACE
The National Council on Disability (NCD) is an independent
federal agency charged with advising the President and Congress
on public policy issues affecting people with disabilities. Consistent
with this mission, NCD is required to report annually on the progress
made in federal policy for people with disabilities and to make
recommendations for how public policy might better meet the needs
of the disability community. Given the diverse nature and large
size of the disability community and the range of public policy
issues affecting this community, NCD has tried to focus on issues
that could affect large segments of the disability community in
the United States.
As indicated on the title page, the following report
covers the period from November 1, 1997, through October 31, 1998.
NCD assesses developments in multiple areas of public policy against
the yardstick of NCD's previous reports and recommendations. The
principal report that forms the framework for NCD's policy analysis
is its 1996 report, Achieving Independence,
which captured the consensus recommendations of a diverse group
of over 300 disability leaders from around the country who gathered
in a summit in Dallas that year.
To assist the reader, the following report below uses
italics for text that includes NCD's recommendations for the President
and/or the 106th Congress.
INTRODUCTION
On July 26, 1990, when he signed the Americans with
Disabilities Act (ADA) into law, President George Bush said:
ADA is powerful in its simplicity. It will ensure
that people with disabilities are given the basic guarantees for
which they have worked so long and so hard. Independence, freedom
of choice, control of their lives, the opportunity to blend fully
and equally into the right mosaic of the American mainstream.
President Bush later stated, "When you add together
federal, state, local and private funds, it costs almost $200 billion
annually to support Americans with disabilities, in effect, to keep
them dependent." As President Bush recognized, the dependence-oriented
model of our systems of public income supports and corresponding
health care benefits is not consistent with ADA's vision of freedom
of choice and equal employment opportunity. If you must lose your
health care and personal assistance services when you take a job,
is that equal employment opportunity?
In an effort to address in our public disability benefit
programs the ongoing barriers to work, members of Congress engaged
in a bipartisan, bicameral strategy this past year to allow people
with disabilities to leave the disability benefit rolls and maintain
their health coverage when they take a job. Another important component
of the strategy would have expanded access to private vocational
rehabilitation for people on the Social Security Disability Insurance
(SSDI) and Supplemental Security Income (SSI) rolls. The return-to-work
bills captured the attention of people with disabilities, their
families, and advocates across the country as news of them arrived
by e-mail, facsimile, telephone, and letter. Through the hard work
of disability advocates and the bills' chief sponsors, the Ticket
to Work and Economic Self Sufficiency Act in the House and the Work
Incentives Improvements Act in the Senate gained the support of
the Administration and almost became law. The progress made on this
issue in the 105th Congress will form a solid foundation on which
to build a successful bipartisan effort in the 106th Congress.
Independent of the return-to-work effort, reform of
the Social Security and Medicare programs will be high on the list
for both parties in the 106th Congress. As with other high policy
priorities such as school modernization, managed care reform, physician-assisted
suicide, or the implications of the human genome project, the manner
in which Social Security solvency and the future of Medicare are
resolved will have a great impact on people with disabilities. And
yet, despite this, too few working-age people with disabilities
and their advocates have participated in the ongoing discussions
about how to protect the solvency of the Social Security Trust Fund
or the future of the Medicare program. As more people with disabilities,
their families and advocates speak out on Social Security and Medicare
issues, the challenge they face will be defending the existence
of basic federal income support programs and publicly funded health
care coverage for those unable to work, while at the same time pushing
for expanded access to affordable health and long-term services
and supports for people with disabilities who seek employment. This
challenge is present in many areas of public policy today. Should
people with disabilities fight to protect important but poorly designed
and poorly managed public programs as these programs come under
heightened scrutiny, or should they proactively work to modernize
public programs so that work and economic self-sufficiency will
truly be promoted?
President Clinton recognized the need to modernize
and coordinate federal policy to promote employment of people with
disabilities on March 13, 1998, when he signed an executive order
establishing a National Task Force on Employment of Adults with
Disabilities. He named Labor Secretary Alexis Herman as chair and
Tony Coelho of the President's Committee on Employment of People
with Disabilities as vice chair. In the National Council on Disability's
(NCD's) 1996 report Achieving Independence,
which summarized the recommendations from a summit attended by a
diverse group of over 300 disability community leaders from around
the country, NCD recommended that the President sign an executive
order directing the secretary of labor to promote the employment
of people with disabilities by establishing national goals. This
recommendation was expanded upon by political appointees with disabilities
throughout the Administration and ultimately became the executive
order signed by President Clinton in March 1998.
As stated in the executive order, the purpose of the
task force "is to create a coordinated and aggressive national policy
to bring adults with disabilities into gainful employment at a rate
that is as close as possible to that of the general adult population."
This high-level task force includes Herman, Coelho, the secretaries
of education, health and human services, treasury, commerce, transportation
and veterans affairs, as well as the commissioner of Social Security,
director of the Office of Personnel Management, chair of the Equal
Employment Opportunity Commission, administrator of the Small Business
Administration, and the chairperson of the National Council on Disability.
The task force has been working in subgroups in preparation for
a November 1998 report to the President. After it issues the report,
the task force will begin to solicit input from the disability leaders
on preliminary recommendations and further directions for the task
force. Like the President's Initiative on Race (PIR), the Task Force
on Employment of Adults with Disabilities provides an opportunity
to educate all Americans about why people with disabilities have
such low employment levels and what it will take to increase employment
of this population. Equally important, the existence of the multiagency
task force signifies that the issue of employment of adults with
disabilities is not simply a matter of vocational rehabilitation
but instead requires a systematic revamping of the public and private
systems that children and adults with disabilities must navigate
successfully to get and keep a job.
One system that must be navigated successfully to
get to work is the transportation system. The Department of Transportation
(DOT), which has been an active participant in the work of the Presidential
Task Force on Employment of Adults with Disabilities, took an important
step this past year to making intercity travel more accessible and
affordable for travelers with disabilities when it issued its final
rule on over-the-road bus accessibility. This requires every new
bus purchased by a major carrier after the rule's effective date
to be fully accessible for travelers in wheelchairs. The rule also
requires full fleet accessibility over time as old buses are replaced
with new ones.
Like transportation, home- and community-based personal
assistance services must be available and affordable for working-age
people who need assistance with activities of daily living to find
and keep employment. With a well-attended March 1998 hearing on
the Medicaid Community Attendant Services Act (MiCASA) in the Health
Subcommittee of the Commerce Committee, Congress this year received
eloquent testimony on the need for legislation that would provide
real choices in the community for children, adults, and seniors
who need long-term services and supports. This legislative effort
also was buttressed by a July 1998 letter from the Health Care Financing
Administration (HCFA) to state Medicaid directors informing them
of the ADA requirement that Medicaid-financed services, including
long-term services, be provided in the "most integrated setting"
appropriate. These two developments may be harbingers of broad-based
efforts in the next Congress to eliminate the institutional bias
in the current system and give people with disabilities and their
families the ability to choose where to live and where to receive
the long-term services and supports they need.
The return-to-work bills, President Clinton's Executive
Order on Employment of Adults with Disabilities, the over-the-road
bus regulations, the MiCASA hearing, and the HCFA letter all point
toward progress in public policy; however, the last year also witnessed
attempts to move the country backward by weakening civil rights
protections for children with disabilities and their families under
the Individuals with Disabilities Education Act (IDEA). Dissatisfied
with the compromise on discipline that had produced sufficient votes
to reauthorize IDEA in 1997, powerful members of Congress sought
to amend the new law to make it even easier for schools to cease
providing an education to children with disabilities in a wider
range of circumstances. If these efforts had been successful, schools
would have been given the opportunity to stop educating some students
indefinitely without having to comply with any of the current due-
process protections designed to ensure the schools' fairness and
accountability.
Although the proposed amendments ultimately failed
after intense opposition from parent and disability advocates, congressional
supporters of IDEA, and the Administration, it is clear that many
school boards, school administrators, and others involved in education
policy believe that civil rights laws for children with disabilities
are interfering with the ability of schools to maintain order and
educate all students effectively. Outspoken school boards and their
allies have fostered a climate where children receiving special
education services are being scapegoated for all that is not working
in American public education. If IDEA's critics are successful at
further restricting the protections for children with disabilities
beyond the compromise embodied in the 1997 law, the children who
will suffer most will be those with disabilities with challenging
behaviors, children from low-income families, racial and ethnic
minority children, children in foster care, children in the juvenile
justice system, and children living in rural areas without access
to legal advocacy. These children are the most vulnerable to unilateral
disciplinary actions by schools because these children and their
families often lack the financial resources and information to challenge
unfair actions or to seek appropriate alternative educational placements.
The weakening of civil rights protections in IDEA would be a tragic
failure in American public policy for children and families. Moreover,
if the proposed IDEA amendments are enacted, the negative impact
of this change will be compounded by the recent elimination of Supplemental
Security Income benefits for over 100,000 low-income children with
disabilities and their families. In a period of economic prosperity,
low-income families with children with disabilities are losing ground,
while much of the society moves forward.
This report, which updates the progress report NCD
issued in 1997, will describe significant policy developments in
the last year and offer recommendations for the President and the
106th Congress.
PROGRESS, CONCERNS AND RECOMMENDATIONS
A. Disability Demographics and Disability Research
1. Demographics
The National Institute on Disability and Rehabilitation
Research (NIDRR) at the Department of Education has published an
extensive Chartbook on Work and Disability in the United States,
1998. The document is available in hard copy and is also excerpted
on the World Wide Web.(1) The Chartbook
draws upon data from several sources, including the Survey of Income
and Program Participation, the National Health Interview Survey,
the Current Population Survey, the decennial census, and the Annual
Survey of Occupational Injuries and Illnesses. As noted in the Chartbook:
- Approximately 32 million people, or 18.7 percent
of working-age Americans, report having some level of disability.
Fifteen million people, or 8.7 percent of working-age Americans,
report having a severe disability.(2)
- The Chartbook also reports statistics on
the prevalence of disability by race and ethnic origin. Within
the 18- to 69-year-old-age group, the following data are reported:
Ethnic Group |
% Work Limitation |
% Unable to Work |
Native American |
17.3 |
10.4 |
Black Hispanic |
15.9 |
13.2 |
Black (non-Hispanic) |
14.3 |
10.3 |
White (non-Hispanic) |
11.6 |
6.2 |
White Hispanic |
9.5 |
6.3 |
Asian or Pacific Islander(3) |
5.7 |
3.4 |
- The Chartbook reports that there is little
difference in the percentage of working-age men and women with
a work disability. Approximately 8.4 million men, or 10.1 percent
of the working-age male population, have a work disability. Approximately
9 million women, or 10.4 percent of the working-age female population,
have a work disability. The Chartbook reports the following data:
Age Group |
% Males |
% Females |
% Total Population |
16-24 |
4.2 |
4.3 |
4.2 |
25-34 |
6.3 |
6.9 |
6.6 |
35-44 |
9.4 |
9.2 |
9.3 |
45-54 |
13.2 |
13.3 |
13.3 |
55-64 |
23.1 |
23.3 |
23.2 |
TOTAL |
10.1 |
10.4 |
10.2 |
- The Chartbook reports that working people
with disabilities have substantially lower monthly earnings than
workers with no work disability, as follows:
|
Median Monthly
Earnings |
|
Men |
Women |
No Disability |
$2,190 |
$1,470 |
Nonsevere Disability |
$1,857 |
$1,200 |
Severe Disability |
$1,262 |
$1,000 |
A 1996 Chartbook from NIDRR reports that 4.7
million children under age 18 have activity limitations (6.7 percent
of all children).(4) The breakdown
of activity limitation by age follows:
Percentage
of Children, By Age, With Activity Limitations |
|
< 5 |
5-13 |
14-17 |
Limited in Nonmajor Activity |
0.7 |
1.9 |
2.4 |
Limited in Major Activity |
1.4 |
5.1 |
4.5 |
Unable to do Major Activity |
0.6 |
0.6 |
0.7 |
2. Research Challenges
As the figures above demonstrate, the demographics
of the disability community indicate that disability policy issues
should be high priority issues for policymakers, given the size
and scope of the community. As the disability community grows with
the aging of the baby boom generation and as new disabilities emerge,
disability policy will affect larger and larger numbers of the U.S.
population. Although the employment rate of people with disabilities
has received heightened attention in recent years, the employment
rate for this population is not measured on a monthly basis in a
manner comparable to women, blacks, and Hispanics. As part of the
work of the Presidential Task Force on Employment of Adults with
Disabilities, the Bureau of Labor Statistics is working with the
U.S. Bureau of the Census, NIDRR, NCD and others to develop a methodology
for measuring the employment rate of people with disabilities on
a more regular basis.
NCD is pleased that the federal research entities
are working together to improve the timeliness and accuracy of demographic
and economic information regarding children and adults with disabilities.
And yet, as the demographic picture of the disability population
becomes more sophisticated, there remain important challenges for
the research community that transcend disability demographics. For
disability data and research to meet the needs of policymakers,
they must measure both the population of people with disabilities
and the environments with which these individuals must interact.(5)
NCD encourages NIDRR to work with the federal research
community to expand efforts to measure both the characteristics
of people with disabilities and the characteristics of the environment.
For example, what percentage of publicly financed town homes and
single-family dwellings are visitable by people in wheelchairs?
What percentage of public libraries have a text telephone available
to deaf and hearing-impaired patrons? What percentage of federal
agency Web sites are fully accessible for blind and visually impaired
computer users? What is the average lead time required to obtain
paratransit services? How many health maintenance organizations
allow patients to see a specialist as their primary care physician?
All of these questions have important policy implications, and they
cannot be answered by looking at disability demographic information
alone.
B. Civil Rights
At the 1996 NCD summit in Dallas, the issue of heightened
enforcement of existing civil rights laws emerged as a consistent
theme within many of the working groups. Although federal enforcement
efforts have picked up since 1996, a need continues for stronger,
more strategic, and more visible enforcement. Following up on the
1996 concerns about enforcement, NCD has undertaken a detailed analysis
of federal enforcement of four civil rights laws: the Americans
with Disabilities Act, the Individuals with Disabilities Education
Act, the Fair Housing Act, and the Air Carrier Access Act. These
reports will be issued in the first session of the 106th Congress.
In the following section and in the education, transportation, and
technology sections of this report, NCD analyzes specific developments
in civil rights law and policy during the period covered in this
report. More detailed analyses of federal enforcement efforts will
appear in the statute-specific reports NCD will issue in 1999.
1. U.S. Supreme Court Speaks on ADA
The United States Supreme Court heard its first two
cases interpreting ADA in the last year. In the first case, Bragdon
v. Abbott, the Court ruled that a woman who was HIV-positive
but had not yet acquired symptoms associated with AIDS was nonetheless
covered under ADA's definition of disability and thereby protected
against discrimination when a dentist refused to fill her cavity
in his office. NCD applauds this result and encourages the Equal
Employment Opportunity Commission and the Department of Justice
to issue enforcement guidance using the Supreme Court's analysis
to reiterate the appropriate way for courts to analyze whether a
plaintiff in an ADA case is covered by the statute's definition
of "disability." This guidance, coupled with the Supreme Court's
decision in Abbott, should help to redirect the trend in lower courts
that has narrowed the definition of disability to the point where
people with breast cancer, epilepsy, diabetes, and mild mental retardation,
as well as those who test positive for HIV, have been found to be
outside ADA's protection.
In the second case, Pennsylvania Department of
Corrections v. Yeskey, the Court ruled that Title II of ADA
did apply to state-run prisons. NCD applauds this result as well.
In reaction to the Yeskey decision, some in Congress introduced
a bill called the State and Local Prison Relief Act, which would
have amended ADA and the Rehabilitation Act to exempt state and
local agencies operating prisons from the civil rights requirements
of the two laws. This bill was not enacted into law in the last
Congress but may return in the new Congress. NCD encourages the
President and Congress to oppose any amendments to ADA or the Rehabilitation
Act that would narrow the scope of protections they provide. Rather
than mounting legal challenges to the constitutionality of Title
II of ADA, as many states have attempted with limited success, the
newly elected and incumbent governors and attorneys general at the
state level should be expected to embrace the civil rights requirements
of ADA and seek cost-effective ways to bring the instruments of
state and local government into compliance.
Although the Supreme Court decisions in Bragdon
and Yeskey should help to correct some of the disturbing trends
in federal court decisions under ADA, federal judges still need
to develop greater understanding of the principles of ADA and other
disability civil rights laws. This can be accomplished through continuing
education programs for the bench. In addition, the President and
Congress need to work together to find, appoint, and confirm qualified
lawyers and judges with disabilities and with a good understanding
of the legal and philosophical underpinnings of the disability civil
rights movement to the federal bench.
2. Hate Crimes
Congress acted this past year on the civil rights
issue of hate crimes. On November 13, 1997, a Hate Crimes bill was
introduced that would have increased the penalty for people convicted
of hate crimes against people with disabilities. This bill did not
ultimately pass, but another bill was enacted that requires the
collection of data on the commission of hate crimes against people
with disabilities. The data called for in the new law will make
it easier to establish the need for legislation similar to the bill
introduced in November 1997 and will help protect any such legislation
from a constitutional challenge. NCD commends Congress and the
President for recognizing the need for the collection of data on
hate crimes against people with disabilities and encourages the
106th Congress and the President to revisit this issue by passing
a law that includes a stronger penalty and appropriate rehabilitation
for people convicted of committing such crimes.
3. Civil Rights Enforcement
a. U.S. Equal Employment Opportunity Commission (EEOC)
In part as a result of activities and recommendations
associated with PIR, Congress approved a $37 million increase in
the EEOC budget. This increase, the first significant budget increase
for EEOC since it received the added enforcement responsibility
of ADA, is an important first step toward giving EEOC the resources
to investigate claims in a timely manner and to provide badly needed
outreach and technical assistance to its many stakeholders. NCD
commends Congress and the President for increasing EEOC's appropriations
and encourages EEOC to use the increase to enhance customer service
in the field and to train investigators on the quickly developing
case law under ADA.
b. Department of Housing and Urban Development
Also as part of PIR, the President proposed and Congress
approved a significant expansion in the Department of Housing and
Urban Development's (HUD's) fair housing enforcement budget for
Fiscal Year (FY) 1999. The approved budget for fair housing programs
was $40 million, up from $30 million in FY 1998. NCD commends
the President and Congress for recognizing the need to expand fair
housing enforcement. NCD recommends that HUD use the increase in
appropriations for fair housing to expand its enforcement of the
Fair Housing Act and section 504 of the Rehabilitation Act on behalf
of people with disabilities. To the extent that HUD will be doubling
enforcement efforts under the Fair Housing Act, for example, NCD
recommends that HUD's efforts under section 504 also be doubled.
In early summer 1998, the Fair Housing and Equal Opportunity
(FHEO) division at HUD amended its standard compliance review procedure
to include, for the first time, a review for section 504 compliance
as part of any fair housing compliance assessment. NCD commends
HUD for recognizing the need to integrate section 504 compliance
monitoring within its generic fair housing compliance activities.
In early 1998, HUD began a large-scale inspection
effort, whereby it is systematically reviewing the physical plants
of HUD-financed projects to assess compliance with many different
safety and conservation standards. As part of this effort, HUD inspectors
are assessing compliance with accessibility laws and regulations,
such as section 504 of the Rehabilitation Act. NCD commends HUD
for doing this and encourages HUD to make the accessibility results
public.
In summer 1998, HUD's division of Policy Development
and Research, along with FHEO, contracted with a private research
firm to conduct a national survey of all newly constructed multifamily
housing (with four or more contiguous units) built since March 1991
(the effective date of the Fair Housing Act's new construction guidelines).
This survey will gather data to provide statistically reliable information
on the numbers, types and locations of buildings that do and do
not comply with the Fair Housing Act. NCD commends HUD for recognizing
the need for comprehensive information in this area and encourages
HUD to make the results of this survey public.
In April 1998, HUD published a Fair Housing Guidelines
Design Manual intended to further illustrate ways for buildings
to comply with the new construction requirements of the Fair Housing
Act. Some developers have pointed to the 1998 issuance of this document
to argue that they should not be held liable for failing to comply
with the Fair Housing Act's accessibility requirements for buildings
that were built after the 1991 effective date of the law but before
the 1998 guidelines. NCD commends HUD for issuing these important
guidelines and strongly encourages HUD to resist any efforts to
eliminate liability for developers who built multifamily units between
1991 and the April 1998 publication of the Fair Housing Guidelines
Design Manual.
c. Department of Justice
Along with the EEOC and HUD increases, Congress approved
an increase of a little more than $1 million for the Department
of Justice's (DOJ's) Civil Rights Division to increase enforcement
and mediation activities under ADA. NCD commends Congress and
the President for increasing the appropriation for ADA enforcement
at DOJ. It encourages DOJ to expand its efforts to coordinate ADA
enforcement across all the agencies, particularly in the areas of
most integrated setting requirements under Title II; technology
access issues under Titles II and III; and compliance by elementary,
secondary, and postsecondary schools under Title II.
4. Civil Rights Backlash
The backlash against civil rights for people with
disabilities continued to show its face in the last year. Commentators
and pundits continue to complain about the "wrong people" benefitting
from ADA and about the extraordinary costs being incurred by employers,
particularly for litigation. Critics argue that ADA is a failure
because the employment rate for people with disabilities has not
increased significantly since the law's passage and because of the
perception that the law is vague and difficult to interpret with
certainty. None of these arguments withstand close scrutiny, yet
they resurface consistently.
NCD encourages ADA enforcement agencies like EEOC,
DOJ, and DOT to recognize that part of their mission as enforcement
agencies must be to correct misperceptions or inaccuracies about
ADA that only serve to feed the backlash. When an article is published
that clearly misconstrues ADA, it is essential that the agency in
the best position to respond does so in a timely and effective manner.
If not, myths are allowed to disguise themselves as facts, and the
environment for successful enforcement is compromised.
5. Access to the Electoral Process
The right to vote is one of the most fundamental civil
and human rights in a democracy. Yet, many people with disabilities
are not able to exercise this right fully because local elections
are not accessible to them. In 1984, Congress attempted to resolve
this problem by enacting the Voting Accessibility for the Elderly
and Handicapped Act (VAA). Although this law was an important first
step in recognizing and addressing voting access issues, it has
not eliminated the widespread problems people with disabilities
encounter with polling places and polling methods (e.g. voting booths
and ballots). The law includes no effective remedy for individuals
who are harmed by inaccessible polling places and fails to establish
any national standard for accessibility.
Notwithstanding the weaknesses of VAA, some jurisdictions
have been more proactive than others in ensuring access for voters
with disabilities. In Rhode Island, for example, the state Board
of Elections worked with the Governor's Commission on Disabilities
to make 94 percent of the state's polling places accessible in time
for the September 1998 primary elections. State officials also made
provisions for assistance to individuals with disabilities who live
in the inaccessible polling place neighborhoods.
NCD encourages the President and Congress to recognize
that the ability of a person with a disability to vote should not
depend on the goodwill of the state election agency but instead
should be guaranteed as a federally protected civil right with real
consequences when the right is violated. Accordingly, NCD encourages
the President and Congress to enact legislation that would amend
VAA to recognize the right of all individuals to vote independently;
guarantee accessibility to all stages of the electoral process (from
voter registration to election day procedures); require the Architectural
and Transportation Barriers Compliance Board ("Access Board") to
establish standards for the accessibility of polling places, polling
methods, and registration materials; strengthen the law's enforcement
mechanisms to ensure private individuals are able to enforce their
rights; and require regular and meaningful monitoring of access
to elections for people with disabilities by the Federal Election
Commission or other appropriate entity.
6. Wilderness Accessibility
Section 507(a) of ADA required that NCD identify important
issues relevant to wilderness accessibility for people with disabilities.
On December 1, 1992, NCD issued a report entitled Wilderness
Accessibility for People with Disabilities, which included
recommendations developed after a hearing and preliminary study
of the issue. A key recommendation in the report was that the federal
agencies responsible for wilderness management should better coordinate
their policies and management practices regarding disability access
and make them consistent with the requirements of federal nondiscrimination
laws. In October 1997, a memorandum of understanding was signed
by the federal wilderness management agencies and a nonprofit organization
called Wilderness Inquiry, Inc. (WI), to coordinate their policies
to "establish a general framework of cooperation between the agencies
and WI for increased opportunities for people of all abilities to
use and enjoy the programs, facilities, and activities of the agencies."
In the last days of 105th Congress, related legislation was passed
that requires the secretary of agriculture and the secretary of
the interior to conduct a comprehensive study to improve the access
for persons with disabilities to outdoor recreational opportunities
(such as fishing, hunting, trapping, wildlife viewing, hiking, boating,
and camping) made available to the public on the federal lands in
the National Forest System, the National Park System, the National
Wildlife Refuge System, and the Bureau of Land Management.
C. Education
1. Omnibus Fiscal Year 1999 Budget Bill
The final budget bill signed by the President included
$1.2 billion for the first year of the President's initiative to
hire 100,000 new teachers to reduce class size in the early grades
to a national average of 18. This initiative is designed to help
schools recruit high quality teachers and to insure that students
receive more individual attention, a solid foundation in the basics,
and greater discipline in the classroom. NCD commends the President
and Congress for providing funding to hire new teachers and reduce
class size. NCD encourages the President and the Department of Education
(DOE) to work to ensure that the new teachers have the proper training
to meet the special needs of children with disabilities in mainstream
classrooms. Moreover, NCD encourages the President and Congress
to continue to work together to fund the hiring of additional new
teachers in the upcoming FY 2000 budget discussions. Finally, NCD
encourages the DOE to work to ensure that the new teachers hired
as a result of the new funding represent a diverse cross-section
of the communities they will serve, including people with disabilities.
Teachers with disabilities, like teachers from other disenfranchised
groups, represent important role models and can change school cultures
with their example and their presence.
The final budget bill also included new funding for
after-school programs, child literacy, college mentoring for middle
school children, education technology, child care quality, teacher
recruitment, Head Start, charter schools, a Hispanic education initiative,
Pell grants, and summer jobs. NCD commends the President and
Congress for investing in expanding programs aimed at children and
youth. NCD strongly encourages the administering agencies for these
new funds to ensure that the recipients of the funds take steps
to include children and youth with disabilities in their activities.
For example, the education technology funding should be spent on
technology that is accessible for all students, including students
with visual, hearing, learning and mobility impairments. Likewise,
recipients of new charter school funding should be required to demonstrate
their ability to serve students with a range of disabilities in
mainstream settings.
2. School Modernization
Having failed in the final days of Congress to prevail
in his push for school construction funding, President Clinton likely
will seek again to modernize public schools around the country by
using tax credits to leverage nearly $22 billion in bonds to build
and renovate schools. NCD strongly supports the President's initiative
to modernize our schools. It encourages the President and Congress
to work together to find the funds to support this initiative, and
then to ensure that the newly built or renovated schools are models
of universal design so that all students, teachers, and parents
will be able to participate fully in all aspects of the schools
of the future.
3. IDEA Proposals
Less than five months after the IDEA Amendments of
1997 (IDEA 1997) were signed into law on June 4, 1997, DOE issued
a Notice of Proposed Rulemaking (NPRM) inviting public comment on
the proposed regulations by January 20, 1998. As of October 31,
1998, no final regulations had been issued. An achievement of bipartisan
compromise, the enactment of IDEA 1997 followed months of intense
political struggle to block reauthorization. As noted in the introduction
to this report, the struggle resurfaced this year in a flurry of
measures in the House and Senate designed to block or to erode key
provisions of the law. These amendments, summarized later, have
sought to limit the civil rights protections of IDEA in the name
of greater flexibility for schools.
Several amendments proposed changes affecting due-process
protections in the administration of school discipline procedures.
Current law allows removal of students to an interim alternative
educational setting (IAES) for up to 45 days at a time only when
they bring a weapon to school, commit a drug-related offense at
school, or have been found by an independent hearing officer to
be substantially likely to injure themselves or others. One amendment,
referenced in the Introduction, proposed to allow schools to remove
unilaterally students who intentionally exhibit violent behavior
that has, or could have, resulted in injury to themselves or others,
even if the behavior was a manifestation of the disability. The
amendment would have replaced objective decisionmaking by an impartial
and independent hearing officer with unilateral fact-finding and
decisionmaking by the school. Finally, this amendment proposed to
delete the 45-day limit on exclusion of students from their regular
classroom, which would eliminate protection against indefinite removal
without review. A more extreme variation on this amendment would
have provided that, notwithstanding IDEA, state and local educational
agencies could establish and implement uniform discipline policies
applying to all children within their jurisdictions. School personnel
would be permitted unilaterally to expel children with disabilities
whose behavior was disruptive, even if related to their disability,
regardless of any IDEA provision.
A second provision targeted for amendment was the
right to educational services for youth with disabilities incarcerated
as adults. The proposed amendment in this area would have made it
impossible for DOE to reduce or withhold payments from states for
failure to provide special education and related services to these
children after age 18. As proposed, this provision would have effectively
eliminated access to appropriate educational services by young prisoners
in many states.
Finally, IDEA provides for the payment of attorneys'
fees to parents who are prevailing parties in actions or proceedings
brought under section 615 of the Act. Language imbedded in the House
District of Columbia appropriations bill would have: 1) eliminated
attorneys' fees for administrative hearings, which make up the bulk
of special education cases, and 2) limited attorney compensation
to $50/hour for cases filed in court, with a cap of $1,300 per case.
Each of these amendments directly challenged the core
premises of IDEAÄthat each child with a disability has the right
to a free appropriate public education (FAPE) in the least restrictive
environment consistent with that goal, has due process protections
against unilateral actions by the school, and has access to an effective
remedy when schools fail to comply with their obligations. After
a fierce battle, the discipline amendments were dropped in exchange
for a nine-month study of the effect of federal special education
protections on the ability of schools to maintain discipline. This
study will be conducted by the U.S. General Accounting Office. All
of the other amendments were dropped, except the cap on attorneys'
fees in the District of Columbia, which remained in the final appropriations
bill approved by Congress. Many fear that the D.C. measure is the
trial balloon for a broader attempt to cap attorneys' fees, which
would make it even less likely that a family with a child with a
disability would be able to assert their legal rights in court.
Advocates devoted significant energy and resources
this year to opposing these attempts to weaken the law and encouraging
DOE to strengthen the proposed regulations and issue the final regulations
as quickly as possible. While the NPRM mirrors or strengthens the
provisions of IDEA 1997 for the most part, significant weak areas
remain. Among them are temporary suspension of educational services
following short-term removal from the classroom, lack of specific
timelines for completing important actions, unclear requirements
concerning the notification and inclusion of parents in key meetings
and decisions, and only partial inclusion of requirements for the
early intervention program (Part C). After receiving thousands of
comments on the NPRM, DOE moved the release date for the final regulation
from late spring to December 1998.
NCD recommends that the DOE promptly issue the
final regulations implementing IDEA 1997. The regulations will serve
as both a safeguard and guidance to the educational system at state
and local levels. NCD strongly encourages local jurisdictions to
use the federal regulation as a model in developing their own guidelines
for implementing IDEA and incorporating best practices drawing on
their local successes.
Along with opposition in Congress and concomitant
delays at DOE, IDEA continues to be met with noncompliance and outright
opposition at the state and local level. Feedback from national
parent networks indicates that opposition to IDEA and the protections
it affords arise from five core perceptions: 1) students with disabilities
require more than their fair share of educational resources, which
makes it more difficult for schools to educate the rest of their
students; 2) the unfettered ability of schools to exclude children
with challenging behaviors is necessary to ensure school safety;
3) IDEA paperwork requirements (i.e. the Individual Education Plan
[IEP]) divert resources from educating children; 4) IDEA imposes
requirements that take away control from state and local education
agencies, and 5) schools do not want to deal with difficult children
in mainstream settings.
Parents around the country report strong resistance
on the part of school personnel and administrators to providing
appropriate services for their children. At the same time, powerful
education associations lobby to give local school personnel authority
to cease education for students with disabilities without due process.
In many school districts, parents must continually fight for services
required by IDEA, which indicates that noncompliance may be widespread
and largely unchallenged.
NCD recommends that DOE and DOJ recognize and correct
the inadequacy of current federal compliance monitoring activity.
School systems that fail to provide services required under IDEA
are compromising the futures of children with disabilities. Federal
authorities must develop more effective monitoring mechanisms to
identify and challenge failures to comply. School systems found
not in compliance must be held accountable for correcting deficiencies
within specified time frames or face sanctions. Where the will to
fully implement IDEA is lacking, sanctions must be applied in combination
with positive incentives to change resistance to definitive action.
Providing all children access to FAPE requires many
changes to our existing educational systems. Rather than expecting
all children to achieve on the same terms, FAPE requires collaboration
between parents and school personnel in accommodating the needs
of individual children. It requires a systematic approach to supporting
each child's individual ability and excellence, which means an alternative
approach to the allocation of educational resources. It requires
acquiring and integrating assistive technologies into the classroom
that have not been available previously. It requires drawing on
expertise from a variety of sources, rather than expecting one educator
to address all the needs of a child with a disability. Implementing
IDEA requires a commitment to change, as well as an increase and
a reallocation of resources at the national, state, and local levels.
Federal policy must support solutions aimed at
directing resources toward creating safe and inclusive educational
environments; thorough, yet manageable, information management systems;
and collaboration between parents and state and local school personnel
in meeting the educational needs of all students.
NCD recommends that the President and Congress
make good on the 1975 commitment to allocate to the states 40 percent
of the funding needed to implement IDEA. This year Congress approved
funding at 12 percent, which is the highest level yet, but still
far short of what is needed. Also, in light of the fact that the
federal government has increased its share of funding for IDEA by
approximately $1.5 billion over the last three years, NCD encourages
the DOE to assess what local schools have been able to accomplish
with these additional funds. Are teachers receiving better training
in ways to meet the needs of children with disabilities? Have early
intervention programs been expanded for infants and toddlers with
disabilities? Are funds being used to empower parents of children
with disabilities by providing parent training and information about
IDEA?
NCD recommends that state education agencies assist
local school systems in organizing, simplifying and standardizing
IDEA's information requirements to make compliance easier and to
develop meaningful data for measuring results.
Finally, NCD urges educators across the country
to view IDEA as a national commitment to educating all children,
regardless of their circumstances, and to accept the challenge of
reshaping their local education systems to be responsive to the
needs of individual students. Developing collaborative models for
interaction between parents, school personnel, and students will
be a key strategy in creating this responsiveness and removing the
barriers to FAPE for all students with disabilities.
4. Charter Public Schools
The Administration has been generally supportive of
charter public schools as a laboratory for innovation in American
public education. As previously noted, the final budget bill included
increased federal funding for public charter schools. The Administration
and many in Congress have indicated a desire to see charter schools
continue to grow in number with federal support.
NCD is concerned that public charter schools are
being created in some jurisdictions without actually ensuring that
the teachers and administrators are prepared to comply with IDEA,
ADA and section 504 of the Rehabilitation Act when children with
disabilities seek to enroll. NCD encourages DOE to provide technical
assistance, oversight, monitoring, and enforcement to the growing
number of charter schools in best practices for educating students
with disabilities.
5. Elementary and Secondary Education Act
One of the items on the agenda for the 106th Congress
will be the reauthorization of the Elementary and Secondary Education
Act (ESEA), an important law that sets out federal education policy
for all students, particularly students from low-income families.
ESEA currently requires states to set high standards for all students,
to create quality assessments that measure how well students are
meeting those standards, and to create an accountability system
for schools to ensure that schools are making progress toward preparing
students to meet the standards. Under ESEA, schools must provide
an enriched and accelerated curriculum, effective instructional
methods, high-quality professional staff, high-quality professional
development, and timely and effective individual assistance for
students who are struggling to meet standards. Schools must meet
all of these elements in a program developed in partnership with
parents.
NCD encourages the President and Congress to take
advantage of the opportunity provided by the ESEA reauthorization
to address the need for mainstream education policy to integrate
the needs of students with disabilities and students from low-income
families so that the educational outcomes of all students may be
improved. For example, NCD encourages the President and Congress
to use the reauthorization to ensure that students with disabilities
are meaningfully included in standards-based reform and expected
to meet high standards, with appropriate accommodations; to expand
parent training and information efforts by building upon and promoting
linkages with community-based parent training and information centers
funded under IDEA, so that all parents can work together to promote
high-quality programming that meets the individual needs of all
students; and to improve teacher training and professional development
to better meet the diverse needs of students in mainstream settings.
6. Education of the Deaf Amendments of 1998
As part of the Higher Education Amendments of 1998
passed by Congress and signed by the President, the Education of
the Deaf Act was amended to require elementary and secondary programs
to comply with certain requirements of IDEA, among other things.
The legislation also requires the secretary of education to study
and report to Congress on the education of the deaf to identify
those education-related factors in the lives of deaf individuals
that result in barriers to successful postsecondary education experiences
and employment, or contribute to successful postsecondary education
and employment experiences. NCD commends the President and Congress
for recognizing the importance of conducting a thorough study of
the factors in public education of deaf students that impede or
promote their success after secondary school, and encourages the
secretary of education to act promptly to complete the study and
report.
D. Health
Care
1. Protections in Managed Care
Like the education system, the health care system
is an essential infrastructure that can either facilitate functional
ability and choice for people with disabilities or make it difficult
for people with disabilities to achieve their goals. With the vast
majority of people in private insurance and a growing percentage
of the Medicaid population enrolled in managed care, people with
disabilities have a strong stake in the efforts to create rights
for patients in managed care systems. In the last year, the President
and many in Congress worked to pass a "patient's bill of rights,"
which would include patient protections such as assuring access
to specialists; creating strong emergency room protections; continuity
of care provisions to prevent abrupt changes in treatment; a fair,
timely, and independent appeals process for patient grievances;
and enforcement provisions to make these rights real. NCD strongly
encourages the President and the 106th Congress to overcome partisan
differences and work together to forge a strong, enforceable bill
that will give patients with disabilities and their families sufficient
protections to ensure that they have access to the quality health
care they need. In addition, NCD recommends that the President and
Congress work together to address the unique issues managed care
has created in medical rehabilitation, where people with disabilities
are being forced to leave rehabilitation hospitals prematurely and
are not receiving the range of necessary services and supports that
medical rehabilitation professionals provided before the growth
of managed care.
2. Medicare Reform
Another big item on the health care agenda is the
future of the Medicare program. Much like the debate on Social Security
solvency, the discussions around the future of Medicare have largely
taken place with little or no involvement by people with disabilities.
Despite the fact that many working-age people with disabilities
rely on Medicare and the health care provided along with their SSDI
benefits, this population has been virtually ignored in the Medicare
discussions to date. NCD encourages the President, Congress,
and the Bipartisan Commission on the Future of Medicare to involve
people with disabilities and their advocates in the discussions
about what should happen with the Medicare program. At a minimum,
the commission should reach out to working-age Medicare enrollees
with disabilities to obtain their input on how the program might
better meet their needs. As it stands currently, Medicare is much
more effective for elderly enrollees than it is for working-age
people with disabilities because it is structured with the needs
of the elderly in mind. To the extent that changes are being considered,
NCD encourages the President and Congress to consider making the
scope of coverage under Medicare more in line with the kinds of
services and supports needed by working-age people with disabilities.
3. Medicaid Buy-In
In 1997, NCD reported on the provision in the Balanced
Budget Act of that year that created an optional program whereby
states could allow people with disabilities who were earning up
to 250 percent of poverty to purchase Medicaid coverage. This past
year, HHS Secretary Donna Shalala personally wrote to every state
to encourage implementation of this provision. To date, NCD is aware
of only one state, Oregon, that has taken advantage of this option.
Oregon amended its state Medicaid plan, with approval from HCFA,
and is in the process of writing its administrative rules and implementation
procedures. The Oregon program will be similar to section 1619(b)
but offers Medicaid to working individuals who have unearned income,
higher income levels, and others. The program will let individuals
go to work and get and keep Medicaid, even if their income exceeds
$40,000. NCD commends Oregon for being the first state in the
nation to take advantage of the 1997 Balanced Budget Act provision
and encourages other states to follow Oregon's lead and expand health
care options available to their populations of people with disabilities
when they are working.
4. Assisted Suicide
On another front, this year witnessed an attempt in
Michigan to follow Oregon's lead in legalizing physician-assisted
suicide. Although it acknowledges differences of opinion in the
disability community on this topic, NCD opposes legalization of
physician-assisted suicide because of the real danger that this
practice, if made legal, will be used in a discriminatory manner
against individuals with disabilities. As of October 31, voters
in Dr. Jack Kevorkian's home state were poised to reject a measure
that would have made Michigan the second state with legalized physician-assisted
suicide.
The measure, known locally as Proposal B, was headed
for defeat according to the polls, which in weeks before the election
showed support eroding under a mult-million-dollar advertising campaign
by well-funded opponents, including the Michigan State Medical Society,
the Roman Catholic Church and Right to Life of Michigan. Disability
rights groups, particularly Not Dead Yet, also were vocal in their
opposition to the measure.
Opposition also came from Kevorkian, who says he has
attended more than 120 deaths but considered Proposal B too restrictive
and regulatory. He called the proposal "crazy."
The measure would have allowed doctors in some cases
to prescribe a lethal dose of medication for terminally ill patients
wishing to kill themselves. It got on the ballot through an effort
by Merian's Friends, a group named after a woman who died with Kevorkian's
involvement.
NCD commends the voters in Michigan for recognizing
the problems inherent with the legalization of physician-assisted
suicide, and encourages the President and Congress to speak out
against this dangerous and unnecessary expansion of the physician's
role. Health care should be about healing, not killing.(6)
Another important development in this area occurred
in Congress. In response to the failure of DOJ to take action against
physicians prescribing lethal drugs under federal controlled substances
laws, some in Congress introduced the Lethal Drug Abuse Prevention
Act of 1998. Although the bill was not enacted, it did receive a
hearing before the Constitution Subcommittee of the House Judiciary
Committee. Diane Coleman from the disability rights group Not Dead
Yet testified at the hearing. NCD commends the Constitution Subcommittee
for recognizing the importance of including a disability rights
perspective in discussions about assisted suicide, and NCD encourages
the President to work with Congress to craft a federal law that
will protect the human rights of people with disabilities and restrain
the ability of physicians to prescribe lethal drugs.
E. Long-Term Services and Supports
for Individuals and Families
A necessary corollary to an effective acute care system
is an affordable system for long-term services and supports for
individuals and families. The biggest problem with the current system
from the perspective of children and adults with disabilities and
their families is the lack of real choices it offers people in need
of long-term supports. Because of the institutional bias in the
Medicaid statute, where nursing home care is mandatory in every
state but home- and community-based care is optional, approximately
80 percent of the funding for long-term services and supports goes
to services in institutions. This continues to occur notwithstanding
the fact that the vast majority of people with disabilities of all
ages and their families would prefer that the services be delivered
in home- and community-based settings.
1. Federal Legislative Efforts
As mentioned in the Introduction to this report, in
March 1998, the House subcommittee with jurisdiction over Medicaid
held a hearing on MiCASA, which was developed with the disability
rights group ADAPT and attracted many sponsors on both sides of
the aisle. Approximately 50 national disability and aging groups
have indicated their support of MiCASA. At the hearing, Speaker
Newt Gingrich and Minority Leader Richard Gephardt both testified
eloquently about the need for legislation that would enable people
with disabilities to choose to live outside of nursing homes and
other institutional settings, and many witnesses presented compelling
testimony about the institutional bias in the current system and
the failure of federal and state policy to honor the "most integrated
setting" goals articulated in ADA for delivery of state and local
services. Nonetheless, very little happened in the last Congress
that moved the ball forward on national legislation to remove the
institutional bias in the Medicaid system. Senator Russell Feingold's
bill, modeled on the long-term care provisions of President Clinton's
Health Security Act, likewise received little attention from the
Finance Committee in the Senate, which is the committee of jurisdiction.
NCD encourages the 106th Congress to move beyond rhetoric and
implement a strategy for dramatically expanding consumer choice
in long-term care. As the population ages, the crisis currently
being felt among many seniors and people with disabilities who require
assistance with activities of daily living will only become more
widespread.
2. Administration Efforts
On a more positive note, the Administration took steps
in the last year to call attention to ADA's requirement that home-
and community-based services, like other government-funded services,
be delivered in the "most integrated setting" appropriate so that
people with disabilities do not receive services in segregated settings
unnecessarily. As Attorney General Janet Reno said before the National
Council on Independent Living in May,
We believe that states have an obligation to
provide services to people with disabilities in the most integrated
setting appropriate to their needs. And we have used the law to
fight for this. Many individuals with disabilities are being placed
in nursing homes or other institutional settings even when they
don't really need to be there.
On a similar note, Sally Richardson, who directs the
Medicaid program for HCFA, issued a directive to state Medicaid
directors in conjunction with the ADA anniversary at the end of
July that pointed out ADA's requirement that state and local services
be delivered in the most integrated setting appropriate to the service.
NCD commends the President; Secretary Shalala; Nancy-Ann Min
DeParle, administrator of HCFA; Sally Richardson, director of the
Center for Medicaid and State Operations at HCFA; and Robert Williams,
deputy assistant secretary for disability and long-term care policy
at HHS, for working together to issue the directive to Medicaid
directors regarding ADA's implications in the area of Medicaid services.
NCD also encourages HCFA to stand firm behind its letter and resist
state efforts to read the letter in a manner that enables them to
deliver services in the same manner to which they have grown accustomed.
NCD encourages HHS to provide technical assistance to states on
how to comply with the most integrated setting requirement in the
Medicaid program. At the same time, NCD encourages the Administration
to fund an initiative as part of its FY 2000 budget that will enable
states to transition from a system that focuses on institutions
to one that focuses on home- and community-based services.
3. Family Support
Like adults with disabilities, many families of children
with disabilities have advocated for long-term services and supports
for their children and for family caregivers to enable families
to care for their children at home and outside of institutions.
In 1994, Congress created a new part in the Individuals with Disabilities
Education Act which authorized HHS to fund state efforts to promote
systems change at the state level that would enhance services and
supports for families of children with disabilities. This authorization
effectively expired on October 1, 1998, without being reauthorized.
However, President Clinton inserted and Congress approved a line
item in the FY 1999 budget that allocated $4 million for family
support. These funds will be used to support 17 competitive grants
to conduct projects of national significance in the area of family
support. Accordingly, for the first time, the President and Congress
have recognized the need to fund a family support program for families
of children with disabilities. NCD commends the President and
Congress for allocating funds to support systems change at the state
level that will enhance the ability of families to care for their
children at home and outside of institutions. At the same time,
NCD encourages the President and Congress to reauthorize in statute
an ongoing family support program administered by HHS, possibly
as part of the reauthorization of the Developmental Disabilities
Assistance and Bill of Rights Act.
4. Child Care
In the omnibus budget bill approved at the end of
the 105th Congress, the Child Care and Development Block Grant (CCDBG)
received $172 million specifically to promote quality in the delivery
of child care services. This money has been used in the past and
can be used in the future for technical assistance activities to
support best practices in the area of inclusion of children with
disabilities in mainstream child care programs. In addition, Congress
and the President supplemented the budget for after-school care
by $140 million. This money may be used to expand the availability
of after-school programs for all children, including children with
disabilities. NCD commends the President and Congress for making
available funds to improve child care options for children with
disabilities and their families. NCD encourages HHS and DOE to work
with the states and local governments to ensure that children with
disabilities are integrated into the child care and after-school
care networks developed with the new funding. Also, in light of
the fact that 24 states currently have waiting lists for children
to get into quality child care programs, NCD encourages the President
and the 106th Congress to continue to expand the federal commitment
to ensure that all children have access to quality, affordable,
accessible child care.
F. Immigrants, Racial and Ethnic Minorities
with Disabilities
NCD has worked for many years to address the unique
needs of minorities with disabilities in our policy work. Recently,
NCD has hosted roundtable discussions and hearings in Atlanta, New
Orleans, and San Francisco on the issues facing people with disabilities
from minority and rural communities from different sections of the
country. On October 1, 1998, NCD released a report capturing input
from the January 1998 hearing in New Orleans focused on children
and youth with disabilities and their families from minority and
rural communities in Louisiana.(7)
The report included suggestions and recommendations on a range of
issues, including education, vocational rehabilitation, juvenile
justice, access to medical services, independent living, family
and individual support, and community participation. Early in 1999,
NCD will issue a report that captures input from its hearing in
San Francisco in August 1998. NCD is eager to work with the President
and Congress to redouble federal efforts to tailor federal policies
and programs so they appropriately address the unique issues facing
people with disabilities from minority racial and ethnic communities.
5. President's Initiative on Race
Over the past year PIR has sponsored research and
discussions around the country to facilitate education and cooperation
on race issues in America. In September, the PIR Advisory Board
presented to President Clinton its final report, which details the
activities undertaken and the policy recommendations developed to
reduce social and economic division by race. Although minimal attention
was given to race issues related to disability (including cosponsorship
with NCD of an August discussion involving community leaders in
San Francisco), overall the effort to hear from and comment on the
unique issues facing minorities with disabilities has been inadequate,
and significant opportunities have been missed. NCD hopes that
the President will seek to remedy the situation in his expected
report to the American people based on this initiative.
Research studies, including the National Health Interview
Survey statistics previously cited, consistently show that people
from diverse cultural communities experience higher rates of disability
as a result of living conditions such as poorer health care coverage,
greater exposure to violent crimes, nutrition issues, and increased
presence of environmental pollutants. The problems resulting from
higher rates of disability are compounded by weaker disability support
systems, including education and employment settings that are less
informed and equipped to address accessibility needs of people with
disabilities. Accordingly, it is in the interest of racial and ethnic
minorities, at least as much as others, to advocate public policies
and resources that promote the personal independence, social integration,
and economic empowerment of Americans with disabilities.
In addition to the problems faced by people with disabilities
of all races, some particularly affect people who are members of
racial and ethnic minority groups. Navigating the immigration and
naturalization process, for example, can be harder when one has
a disability that affects one's ability to learn English through
standard instructional methods, affects one's capability to give
fingerprints (a man without fingers has had his naturalization delayed
for years because of this problem), or affects one's capacity to
give the oath of allegiance. Despite the fact that civil rights
laws protect immigrants with disabilities against rigid application
of citizenship requirements, NCD has heard numerous individual reports
of the Immigration and Naturalization Service's refusal to make
accommodations. Another example is that some cultures have not yet
developed language about disability that makes it acceptable to
self-identify, request, and receive government interventions such
as civil rights enforcement and rehabilitation services. Through
dialogues and research in conjunction with the disability community,
PIR could have advanced understanding in these areas and helped
to encourage more enabling policies and practices for minorities
with disabilities.
NCD does commend PIR for recognizing in its report
a pattern at the local level of giving special education labels
to children with disabilities from minority backgrounds, which results
in many of them being unnecessarily stigmatized and separated from
mainstream education settings. Regulations to be issued by DOE implementing
the IDEA Amendments of 1997 can and should correct this practice.
NCD also praises the President's action in July to direct key federal
civil rights agencies to increase their outreach and implementation
efforts in diverse cultural communities. NCD urges federal civil
rights enforcement agencies to work together to develop culturally
competent models for outreach and training on federal civil rights
laws and procedures in minority racial and ethnic communities.
2. Health-Related Funding in Minority Communities
In the final budget bill that passed at the end of
the 105th Congress, $150 million was included to address HIV/AIDS
issues in minority communities. This investment will be used to
improve prevention efforts in high-risk communities and expand access
to cutting-edge HIV therapies and other treatment needed for HIV/AIDS.
In addition, Congress approved the Administration's request to fund
grants for communities to develop new strategies to address disparities
in prevalence of diseases between minority and white populations.
Among African Americans under the age of 65, for example, the rate
of heart disease is twice the rate among whites in that age group.
As another example, Native Americans have an incidence of diabetes
nearly three times the national average. As part of the President's
initiative to eliminate racial health disparities, Congress also
approved increases in other public health programs, such as heart
disease and diabetes prevention at the Centers for Disease Control,
that have proven effective in attacking these disparities. NCD
commends the President and Congress for recognizing the need to
pay particular attention to disability issues in minority communities.
As the President and Congress continue to build on these first steps,
NCD encourages them to address the dramatic disparities in labor
force participation between minorities with disabilities and others.
G. Social Security Work Incentives
and Social Security Solvency
1. Work Incentives
As mentioned in the Introduction, this Congress saw
significant progress toward making it easier for people receiving
Social Security disability benefits to go back to work, but ultimately
no bill was passed by both houses of Congress. On September 24,
1997, NCD presented the President and Congress with a list of action
proposals to remove barriers to work.(8)
The proposals, which were developed after broad consultation with
people with disabilities, their families, advocates, and policy
experts around the country, included actions that would "make work
pay" by providing medical coverage for workers with disabilities,
replacing the SSDI income cliff with gradual benefit reductions,
ensuring that people would not lose eligibility solely because they
work, compensating for disability-related work incentives, and other
items. The NCD recommendations also supported the creation of a
ticket or voucher program that would enable SSI recipients and SSDI
beneficiaries to select and buy services leading to employment and
the creation of a financial reimbursement mechanism for employers
who encounter costs for certain extraordinary accommodations.
On June 4, 1998, the House voted 410-1 to pass the
Ticket to Work and Self-Sufficiency Act. This bill would have instituted
a ticket program similar to the NCD proposal designed to increase
consumer choice in vocational rehabilitation. It also would have
authorized a demonstration project in which a select group of beneficiaries
would have lost cash benefits at a rate of one dollar for every
two dollars they earned over an amount to be determined by the commissioner
of Social Security. The House bill did not include the national
two-for-one proposal espoused by NCD because that proposal had received
a large score from Congressional Budget Office and the actuaries
at SSA, both of which were concerned about people being induced
by that benefit to come onto the rolls.
The Work Incentives Improvements Act in the Senate
included a ticket component similar to NCD's and the House bill
and included a demonstration program for the two-for-one similar
to the House bill. In addition, it included significant health care
protections for SSI and SSDI beneficiaries that would have enabled
them to keep their health care when they returned to work. Another
important component of the Senate bill was the definition of personal
assistance services that would have been part of the health coverage--a
definition that included readers and personal assistance with transportation
to and from work. Finally, both the Senate and House bills included
provisions that would have prevented the Social Security Administration
from punishing people who try to work by instituting a continuing
disability review.
An important consensus that emerged as the 105th Congress
drew to a close was the realization that the disability community
was not interested in a work incentives bill that did not include
a significant health care protection for people trying to leave
the Social Security rolls. Because the health care component was
significantly more costly than the other components of the legislation,
it was necessarily the most difficult to achieve. NCD encourages
the President, commissioner of Social Security, and Congress to
build on the progress made last year and pass a work incentives
bill that includes basic access to health care and expanded choice
in rehabilitation providers for consumers similar to the Work Incentives
Improvements Act. NCD encourages the Administration and Congress
to fund the health care components of the bill at a level that will
make them sufficiently attractive for states to choose to participate.
2. Social Security Solvency
As mentioned in the Introduction, people with disabilities
have not played a large or visible role in discussions about the
solvency of the Social Security Trust Fund to date. Accordingly,
many Americans have a perception that Social Security is only for
people who have retired, and the debate about solvency has centered
almost exclusively on Social Security retirement. Yet, the reform
efforts that will play out in the 106th Congress will have a dramatic
impact on the people with disabilities who depend on SSDI benefits
to survive. More than one-third of all Social Security benefits
are paid to nonretirees: people with disabilities, children, and
widowed spouses. For the average wage earner with a family, Social
Security insurance benefits are equivalent to a $300,000 life insurance
policy or a $200,000 disability insurance policy.
As the debate moves forward, NCD encourages the President
and Congress to:
- ensure the meaningful inclusion of people with
disabilities and their families in discussions about the projected
shortfall of the Trust Fund;
- preserve the guarantees inherent in the disability
insurance program and the protections for survivors and dependents
in the Old Age, Survivors, and Disability Insurance programs of
Title II of the Social Security Act;
- protect the integrity of the benefits provided
so that they are at a reasonable level for support and protect
the value of the benefits so that the buying power of the benefits
does not diminish with inflation; and
- take into account any potential effect on the
Supplemental Security Income program when assessing the impact
of any reform proposal. For example, if there are reductions in
benefits for retirees and people with disabilities, under current
law, the SSI program would have to step in to support many of
those who would be forced further into poverty.
H. Employment
1. Job Training and Vocational Rehabilitation
On August 7, 1998, the President signed the Workforce
Investment Act (WIA), which included the Rehabilitation Act Amendments
of 1998. In the WIA, the employment and training provisions and
adult literacy provisions specifically require that people with
disabilities be considered a priority population for service delivery.
NCD commends Congress and the President for requiring the mainstream
employment, training and literacy systems to prioritize service
delivery to people with disabilities. This will enhance the likelihood
that people with disabilities leaving the Temporary Assistance for
Needy Families (TANF) rolls and the SSI/SSDI rolls will be able
to access the services they need to obtain and retain competitive
employment.
NCD also commends congressional leaders who made the
process of reauthorizing the act bipartisan and inclusive of the
disability community. NCD praises Congress and the Administration
for establishing better links between the vocational rehabilitation
(VR) system and the general work force development system through
this law. Jobseekers with disabilities will have improved options
for service through the mainstream worker training and placement
system, as well as through the disability-specific VR system. The
U.S. Department of Labor has been providing valuable technical assistance
to the network of one-stop career centers on how to provide nondiscriminatory
and accessible services to people with disabilities. While these
preliminary efforts are a good start, the mainstream employment
and training networks should implement a comprehensive training
module so that line staff are well informed about resources available
for people with disabilities seeking employment and are well equipped
to meet the needs of clients with a wide range of disabilities.
Perhaps the best improvement to the Rehabilitation
Act in the WIA is the considerable strengthening of section 508,
discussed in detail later in the technology section of this report.
The U.S. Access Board has begun to develop the accessibility regulations,
which are expected to have a major impact on the market availability
of accessible technology, as industry designs products to meet federal
procurement requirements.
Some other improvements to the Rehabilitation Act
are worth noting. The Individual Plan for Employment (IPE) is the
new term for the Individualized Written Rehabilitation Program (IWRP),
which gives more control to consumers in developing their VR plan
for services. VR plans may now be developed by the individual or
an outside advocate, as long as the document is signed by a qualified
rehabilitation counselor. The language is strengthened concerning
the obligation of state VR agencies to offer informed choice to
clients about service alternatives available to them, including
those provided by other organizations both inside and outside the
state. Trial work experiences are encouraged as a way for agencies
to evaluate whether potential clients will benefit from VR assistance.
States with an order of selection policyÄby which persons with more
severe disabilities receive priority for assistanceÄare nonetheless
expected to provide core information and referral services to all
people with disabilities who contact the agency within the state.
Mediation is encouraged as an approach to resolving client-agency
disputes without compromising the right to formal adjudication.
The Rehabilitation Council, formerly Rehabilitation Advisory Council,
has more of a role in developing agency policies and plans.
The Rehabilitation Act Amendments of 1998 were nonetheless
disappointing in not going further in some areas. The illogical
division between the administration of VR services to people with
visual disabilities and all other disabilities was not addressed.
Stronger and more considered efforts should have been required to
meet the needs of traditionally underserved populations, including
people from diverse cultural communities, individuals with psychiatric
disabilities, and residents of rural areas such as Indian reservations.
State rehabilitation councils should have been given sign-off authority
analogous to that which statewide independent living councils have
on independent living plans. Client Assistance Programs should have
been required to be independent from state VR agencies so they can
advocate effectively from outside the VR system.
In summary, the 1998 reauthorization of the Rehabilitation
Act made some significant improvements but passed up an opportunity
to make some important additional reforms. NCD encourages the
Rehabilitative Services Administration to work closely with the
Presidential Task Force on Employment of Adults with Disabilities
to develop bold, multiagency demonstration and research initiatives
to achieve dramatically better outcomes in employment rates for
people with disabilities, and to provide the policy options for
a truly revolutionary reauthorization of the Rehabilitation Act
that encompasses responses to the range of disincentives that have
prevented people with disabilities seeking employment from succeeding.
Moreover, NCD encourages the President and Congress to recognize
that the VR program has received level funding for years and will
require additional funding to adequately address the needs of people
moving from welfare to work and from Social Security disability
programs to work.
2. Presidential Task Force on Employment of Adults
with Disabilities
As mentioned in the Introduction, President Clinton
signed an executive order in March 1998 creating a task force chaired
by the secretary of labor to develop policy recommendations for
the President to bring the employment rate of adults with disabilities
as close as possible to the level of the rest of the population.
During the period covered in this report, the task force met twice
and created a series of work groups to address specific employment
topics listed in Section 2 of the executive order. A report including
the outcome of the work group efforts and recommendations to the
President was under development as the period covered by this progress
report came to a close.
NCD commends the President for seeing the need
to pull together a broad array of federal cabinet secretaries and
agency heads to address what is clearly a multidimensional and challenging
issue. As the work of the task force moves forward, NCD encourages
the task force to recognize that some of the biggest barriers to
employment for people with disabilities include work disincentives
in our public benefit systems; the lack of accessible, affordable
home- and community-based long-term services and supports; inadequate
housing and transportation infrastructures; and a lack of educational
credentials and work experience in the target population. Moreover,
as long as students with disabilities drop out of high school at
a rate twice that of their nondisabled peers, we will continue to
see disappointing employment outcomes for young people with disabilities.
Likewise, the unique needs of racial and ethnic minorities with
disabilities in both the education and job training and rehabilitation
systems must receive special attention so that the task force will
reach the full population of adults with disabilities.
In short, NCD encourages the task force to take
the opportunity the President has provided to develop broad-based,
cross-cutting initiatives that will fundamentally alter the landscape
of public policy for Americans with disabilities. The problem the
task force has been asked to address will be solved only with dramatic,
visionary approaches. Incremental tinkering with existing programs
simply will not have the impact the President and the disability
community want and need.
I. Welfare to Work
1. Federal/State Efforts
In the last year, a growing number of states, with
support from federal partners, have recognized the need to address
disability issues in their local welfare populations to achieve
the desired outcomes of welfare reform. For example,
- Washington State finalized and released a validated
screening tool for identifying people with learning disabilities
in the welfare population.
- Arkansas became the first state to implement the
use of the Washington State screen statewide.
- Kansas has implemented a statewide program to integrate
adult literacy and welfare reform efforts for people with disabilities.
- Six of the welfare to work discretionary grants
awarded by the Department of Labor (approximately $20 million
in funding) went to local applicants who will use the money to
address the needs of people with disabilities in their local welfare
populations.
- In 1998, the National Institute for Literacy and
the Office of Vocational and Adult Education at DOE funded four
regional training and resource centers on learning disability
issues for adults and required these centers to prioritize welfare
reform issues for their target populations.
2. Increased Federal Funding
As part of the final budget approved at the end of
the 105th Congress, a number of measures designed to expand welfare-to-work
activities received funding. For example, the final budget included
$283 million for 50,000 new vouchers exclusively for people who
need housing assistance to make the transition from welfare to work.
In addition, the budget included $75 million to assist states and
localities in developing flexible transportation alternatives, such
as van services, to help former welfare recipients and other low-income
workers to get to work. It also included an extended welfare-to-work
tax credit for employers as an incentive for them to hire, invest
in training, and retain long-term welfare recipients. Similarly,
the budget extended the work opportunity tax credit, which encourages
employers to hire disadvantaged youth, welfare recipients, and qualified
veterans. NCD commends the President and Congress for recognizing
the need to address housing, transportation, and other barriers
to enable people on welfare to obtain and retain employment. NCD
encourages the President and administering agencies for these new
programs to recognize that a large percentage of the population
remaining on TANF has disabilities ranging from learning disabilities
to psychiatric disabilities to substance abuse issues. Accordingly,
many of these individuals must have their disability-related needs
addressed in order for the goal of obtaining long-term employment
to be realized. Moreover, NCD encourages the President and Congress
to recognize that the current efforts to move people from welfare
to work may have important lessons for the growing effort to move
people from reliance on disability benefit programs to employment.
Issues like housing, transportation, and health care must be addressed
for the SSI and SSDI populations as well if the transition to work
is to be successful.
J. Housing
For people with disabilities to achieve optimal employment
outcomes, they must be able to find accessible, affordable housing
with links to accessible, affordable transportation that will take
them to their job. A number of significant actions took place in
the last year that advanced housing policy for people with disabilities.
1. Definition of Housing for People with Disabilities
HUD informed large cities and states that receive
Community Development Block Grant (CDBG) and Housing Opportunities
Made Equal (HOME) funds that people living in nursing homes and
other service-centered facilities should be counted as being in
need of permanent housing as opposed to being "housed." This statement
was important because it recognizes the fact that institutional
living does not constitute real housing for people with disabilities.
It also will result in HUD receiving a more accurate and realistic
count of the number of people with disabilities truly in need of
housing. It is worth noting that even without this change in assessing
the housing needs of people living in institutions, people with
disabilities have been determined by HUD to be a population with
the most urgent housing needs.
NCD commends HUD for taking steps to track more
accurately the housing needs of people with disabilities. At the
same time, NCD encourages HUD to act on its existing data and realign
housing resources to respond more adequately to the appalling shortage
in affordable, accessible housing in the community for people with
disabilities. Moreover, NCD recommends that HUD further clarify
its position on what constitutes housing for people with disabilities
by issuing a policy statement to all recipients of HUD funds and
placing the statement in fair housing materials and on its Web page.
2. Home Purchase and Renovations
On April 28, 1998, Fannie Mae announced the publication
of A Home of Your Own Guide, the first manual specifically
created to provide step-by-step homebuying guidance for people with
disabilities. In early 1998, HUD included a disability rights organization
(the Disability Rights Action Coalition for Housing) in a working
group of major stakeholders in home ownership policy to implement
a workable and effective homeownership program that will meet the
needs of all people in the United States. Also, in early 1998, Secretary
Andrew Cuomo issued a directive encouraging communities to use CDBG
funds for home modifications for people with disabilities. NCD
commends Fannie Mae and HUD for taking these steps toward promoting
homeownership and home modifications for people with disabilities.
NCD encourages HUD to build on these steps by creating a national
home modification fund for low- income people with disabilities,
both renters and owners. HUD thereby will empower more people with
disabilities to become homeowners or tenants in community settings.
3. Visitability
In HUD's recent Notices of Funding Availability, the
agency included bonus points for developers when they seek to build
or rehabilitate structures with three or less units that include
visitability by people with disabilities. This visitability concept
would require all such new housing to have at least one no-step
entrance and 32-inch doorways so people with disabilities could
visit their friends who live there. In addition, at the same time,
Secretary Cuomo issued a notice to all jurisdictions encouraging
them to adopt visitability standards for all new construction projects,
including town houses and single-family homes.
Last spring, the HOPE VI program (a HUD-financed effort
to replace housing resources destroyed when public housing projects
are demolished) issued a Notice of Funding Availability strongly
encouraging applicants to incorporate both visitability and section
504 standards in new projects that would not be covered by the Fair
Housing Act. All applications submitted in accordance with this
NOFA included visitability and section 504 accessibility standards.
NCD commends HUD for embracing visitability as a goal for HUD-financed
housing and for recognizing that the move from project-based housing
to town homes and other detached dwellings does not need to mean
a reduction in accessibility if developers are encouraged to build
in such features in the design stage.
4. Tenant-Based Rental Assistance
Congress included $40 million in section 8 funding
for people with disabilities, in part to offset the displacement
likely to occur as a result of elderly-only designation of public
housing formerly occupied by people with disabilities. NCD applauds
Congress for recognizing the need for substitute funding to enable
low-income people with disabilities to find housing in the community,
but believes HUD and Congress must go much further to expand funding
for tenant-based rental certificates. In the past, HUD has used
25 percent of its section 811 program funds (Supportive Housing
for People with Disabilities) for tenant-based rental certificates.
NCD recommends that 100 percent of the section 811 program funds
be used for person-based, rather than project-based, housing resources.
This change would be consistent with the requirements in section
504 of the Rehabilitation Act and the Fair Housing Act that housing
resources be provided in the most integrated setting appropriate.
5. Task Force on Segregation and Services Linked to
Housing
One of the core debates within housing policy for
people with disabilities centers on whether there are some circumstances
under which people with disabilities may be required to live exclusively
with other people with disabilities and/or to accept services in
order to qualify for publicly funded housing. The resolution of
this debate has important civil rights implications for people with
disabilities, many of whom wish to live in integrated settings and
to be able to seek services separate from their choice of where
to live. For example, the Fair Housing Act and section 504 prohibit
special terms and conditions and/or segregation based on disability
status. Internally, HUD this Fall created a Task Force on Segregation
and Services Linked to Housing, which will examine ways to maximize
integration and individual choice in housing for people with disabilities.
NCD is concerned that the issues of segregation and services
linked to housing are well-decided under section 504 of the Rehabilitation
Act and the Fair Housing Act. Accordingly, NCD does not understand
the purpose of this new task force, unless it will focus exclusively
on implementing well-established civil rights policies.
6. Compliance with Section 504 of the Rehabilitation
Act by HUD and its Grantees
Under section 504 of the Rehabilitation Act, public
housing authorities must ensure that 5 percent of any building with
five or more units is accessible to people with mobility impairments,
and 2 percent of any such building is accessible for people with
visual or hearing impairments. Recently, as more and more public
housing authorities have reoriented their emphasis away from housing
projects and toward low-density housing such as inaccessible town
houses, the number of units accessible for people with disabilities
has been significantly reduced.
NCD recommends that HUD conduct an evaluation of
its grant recipients and subrecipients under section 504 of the
Rehabilitation Act to ensure that all of their programs and services
are in compliance. In conducting this evaluation, HUD is encouraged
to move beyond a percentage mentality and promote the development
and rehabilitation of housing that will meet the needs of all people.
Finally, NCD recommends that HUD reform the programs
under which people with disabilities receive assistance with housing
such as the section 811 program to ensure that these programs reflect
the most integrated setting requirement of section 504 and independent
living philosophy of the disability rights movement.
K. Transportation
Like housing, accessible and affordable transportation
plays a vital role in enabling individuals with disabilities and
their families to participate in the mainstream economic, social,
and cultural lives of their communities.
1. Over-the-Road Bus Regulations
This past year witnessed a significant step forward
in transportation policy when DOT issued the final regulation implementing
ADA provisions for over-the-road bus (OTRB) accessibility in September
1998. The regulation, widely regarded as a strong rule by the disability
community, requires large fixed-route operators to achieve 50 percent
of full fleet accessibility by October 2006 and 100 percent by October
2012. An important strength of the regulation is that it provides
a regulatory definition of discriminatory action: refusing transportation,
using or requesting the use of non-employees in giving routine assistance
without the passenger's consent, and asking passengers to reschedule
their trips to a time other than their requested travel time. Properly
implemented, the regulation will make OTRB transportation accessible
for people with mobility impairments for the first time since ADA
was enacted. As written, however, the regulation both supports and
detracts from ADA's overall goal for "fully accessible, nondiscriminatory,
everyday service."
Small fixed-route carriers and those providing demand-responsive
or mixed service have no minimum percentage of fleet accessibility
to achieve. Instead, these carriers will be required only to provide
an accessible bus on 48 hours' advance notice starting October 2001
(large carriers) or October 2002 (small carriers). New buses acquired
by large fixed-route carriers after October 2000 must be accessible,
while small carriers have no parallel requirement. Of 3,500 OTRB
service providers, all but 21 are classified as small carriers.
However, the major carriers serve the largest number of passengers.
Exempting most carriers from any minimum fleet accessibility
requirement virtually guarantees that service to persons with disabilities
will never be available on the same basis as to nondisabled passengers
in many areas of the country. This outcome is not in keeping with
the purposes of ADA. Rather than accept less than full accessibility
as the goal, NCD encourages DOT to find alternative paths for small
operators to achieve full fleet accessibility over a longer time
frame.
DOT has strengthened the regulation by including provisions
making OTRB operators individually and collectively accountable
for providing accessible service. Each operator involved in providing
service to passengers with disabilities on trips involving multiple
transfers is responsible for communicating to ensure accessible
service on all trip segments. Failures to provide the requested
accessible service must be compensated at a rate ranging from $300
to $700. NCD commends DOT for including provisions that clearly
demonstrate its commitment to successful implementation of the regulation.
NCD notes that a provision for DOT to conduct a regulatory
review of all service requirements starting in October 2006 has
positive and negative implications. On the positive side, DOT has
set out the requirements it intends to reevaluate and what data
it proposes to use. On the negative side is the possibility that
the measurement data will not be maintained regularly and accurately.
Without reliable data, DOT cannot make a fair assessment of the
regulation's impact on the industry or the extent to which it has
made OTRB transportation truly more accessible for people with disabilities.
NCD urges DOT to explore options and implement systems for ensuring
the reliability of the data on which its analyses will depend.
2. Air Carrier Access Act
The Air Carrier Access Act (ACAA), which became law
in 1986, prohibits discrimination against passengers with disabilities
by air carriers in providing air transportation services. The implementing
regulation was passed in 1990. This year NCD conducted a study on
DOT's enforcement of ACAA. The findings showed that DOT's enforcement
model relies heavily on monitoring of complaints and voluntary compliance
by air carriers. This approach does not emphasize traditional investigation
and prosecution of complaints similar to other federal civil rights
enforcement agencies.
Accordingly, NCD believes that DOT's approach is critically
lacking in the key areas of compliance monitoring, complaint handling,
and leadership. No regular program of ACAA monitoring ensures compliance
in day-to-day airline operations. DOT's informal complaint- handling
process serves more as a tool for monitoring the industry than as
a system for resolving individual discrimination claims. Even the
formal complaint process focuses only on issues of broad public
interest, so that individual complainants have no reliable administrative
means to obtain satisfaction unless the airline voluntarily cooperates.
NCD's research shows that DOT's leadership in addressing difficult
compliance problems (e.g., providing lifts and other boarding devices,
regular training of airline personnel, and ensuring that new aircraft
meet accessibility standards) has been inadequate.
The problems of ACAA enforcement arise from inadequacies
in DOT's enforcement mechanism and in the law itself. Unlike other
civil rights laws, ACAA does not explicitly establish a private
right of action and contains no provisions for attorneys' fees and
damages. The law also fails to extend the nondiscrimination mandate
to foreign air carriers operating in the United States as code-sharing
partners of domestic airlines. NCD urges DOT to seek additional
resources for enforcement of ACAA and to target specific areas where
it will initiate actionÄin concert with the disability community,
the aviation industry, and other stakeholder groupsÄto correct persistent
implementation and compliance problems. NCD also encourages Congress
to increase DOT's ACAA enforcement budget and to amend ACAA extending
its nondiscrimination mandate to all airlines serving U.S. markets,
strengthening DOT's enforcement mandate, and authorizing those whose
civil rights have been violated to obtain appropriate legal remedies.
L. Technology
Over the past year, several significant events have
advanced the potential for individuals with disabilities to use
the Internet and have access to the equipment they need to work,
gain an education, and live independently. Of greatest significance
are the changes to section 508 in the Rehabilitation Act Amendments
of 1998, which strengthened the obligations of federal agencies
to provide accessible technology and information to their employees,
customers, and stakeholders.
1. Section 508 of the Rehabilitation Act
When section 508 was originally enacted in 1986, it
required federal agencies to purchase office equipment that was
accessible to its employees. However, no mechanism enforced this
requirement. Furthermore, only technology manufacturers, and not
individuals themselves, could file complaints. Now section 508 has
been modified to grant authority to the Access Board for issuing
accessibility regulations, which must be completed by February 7,
2000 (18 months after the amendments became law), and federal agencies
must comply six months after that. Additionally, federal employees,
as well as members of the public receiving services from the agency,
now have the right to file a complaint under a procedure similar
to that outlined under section 504 of the Rehabilitation Act.
Strong compliance with these regulations will have
significant implications for people with disabilities who work for
or receive services from the Federal Government and for the disability
community at large. The Federal Government can use its considerable
purchasing power to influence private industry toward developing
universally designed technology that is accessible to everyone.
One example of the impact of the Federal Government on technology
development was the refusal of DOE to purchase Lotus Notes software
until access modifications were made. Pursuant to DOE's software
procurement policy, which was developed in consultation with experts
in accessible software standards, DOE will not purchase any software
product for use by its employees that does not meet minimal accessibility
standards. For example, to meet such standards, software must be
completely operable with keyboard commands rather than requiring
mouse navigation; must allow for compatibility with screen reader
and voice input programs; and must have accessible product support,
including accessible documentation, training materials, and technical
support. DOE's insistence on access has led to the development of
more accessible Lotus products. NCD encourages other agencies
to take their example from DOE and adopt its accessible software
procurement standards during the period while the section 508 accessibility
standards are being developed.
2. Section 255 of the Telecommunications Act
Another significant technology development this year
was the issuance of proposed regulations to implement Section 255
of the Telecommunications Act of 1996. This law requires that telecommunications
equipment and services be accessible to individuals with disabilities,
where readily achievable. In June, the Federal Communications Commission
(FCC) proposed rules to implement this section of the Act. While
NCD was pleased that FCC proposed these overdue regulations, and
that Chairman William Kennard has publicly expressed support for
the development of accessible technology, NCD is disappointed that
FCC is considering such a narrow definition of "telecommunications."
It is astounding that voice mail, faxes, e-mail, and other commonly
used electronic communications tools may not be covered. Such a
narrow definition seems at odds with the intent of Congress and
a commonsense understanding of telecommunications in the 1990s and
beyond. The failure to regulate even the most commonly used forms
of telecommunications will result in the exclusion of people with
sensory and other impairments from basic communications devices
and services, to say nothing of those yet to emerge from the rapidly
changing Information Age.
3. ADA and Section 504 of the Rehabilitation Act
Prior to the period covered in this report, Congress
enacted other laws to ensure information access to individuals with
disabilities, including Titles II and III of ADA and section 504
of the Rehabilitation Act. Unfortunately, federal agencies with
enforcement authority for these laws have lagged behind in their
compliance monitoring. In particular, the DOJ has failed to issue
any advisory guidance on access to information kiosks operated by
units of state and local government and has not issued significant
guidance or consent decrees related to technology access. Only in
September 1998 did DOJ assign a specific individual from its Disability
Rights Section the responsibility to develop expertise in technology
issues. NCD urges DOJ to prioritize technology access issues
in its implementation of ADA.
4. Assistive Technology Act
For the past ten years, DOE has funded projects at
the state level to promote systems change and advocacy activities
that enhance access of children and adults with disabilities to
assistive technology devices and services. These projects were authorized
under the Technology-Related Assistance for Individuals with Disabilities
Act. In October 1998, Congress passed a law called the Assistive
Technology Act. This law continues block grants to states for public
education and advocacy related to assistive technology products
and services. In addition, the law authorizes a new micro loan program
to encourage the development and purchase of accessible technology-related
products and services. NCD is disappointed that more emphasis
was not given to promoting universal design or built-in accessibility,
as contrasted with assistive technology or add-on accessibility.
The rapid rate of technological change makes it increasingly difficult
for compatible assistive technology to be developed before new versions
of related mainstream products are released on the market. In addition,
NCD recommends that more be done to promote training on use of the
Internet, such as through public libraries, because of its revolutionary
potential to empower people with various disabilities in education,
employment, and civic activities. Independent, consumer-driven evaluations
of technology also should have been specifically encouraged, since
consumers face a bewildering array of options and have difficulty
making informed decisions based mainly on product marketing literature.
Finally, since people with disabilities and their families are disproportionately
poor, it is critical that technology resources be affordable or
available in free, accessible public venues if the disability community
is to keep pace with the Information Age.
M. International Issues
As ADA continues to serve as a model of civil rights
legislation for countries throughout the world, there is strong
international interest in how ADA implementation is proceeding.
NCD remains confident that the results of our ADA monitoring project
will continue to attract interest. In the interim, the last year
witnessed significant developments in the international arena.
1. Organization of American States
The Organization of American States (OAS) continues
to consider the "Inter-American Convention on the Elimination of
All Forms of Discrimination by Reason of Disability." This convention,
when passed, will create an opportunity for OAS to carry out a great
responsibility to ensure that all its state members observe the
convention. NCD encourages the U.S. Permanent Mission to the
Organization of American States to work to see that the Convention
is adopted with strong antidiscrimination provisions and to advocate
that the Convention be fully implemented by each State Member when
it is passed. In addition, NCD again commends the Department of
State, including the U.S. Organization of American States, for its
efforts to involve NCD and other disability community stakeholders
in reviewing draft policies.
2. Department of State
NCD encourages the Department of State to take
steps to ensure that all aspects of U.S. foreign policy and assistance
recognize the human rights and civil rights of all people with disabilities,
by ensuring compliance with the Architectural Barriers Act, Section
504 of the Rehabilitation Act, and ADA in U.S. embassies, consular
offices, missions, and other U.S.-owned or leased property abroad;
including relevant information about the status of people with disabilities
abroad in U.S. government-generated country reports; promoting democracy
through the sharing of U.S. laws and policies that promote inclusion,
independence and empowerment; and conducting self-evaluations under
the Rehabilitation Act for all U.S. government agencies active abroad
to identify barriers to participation by qualified people with disabilities
and to establish transition plans to eliminate these barriers.
Similarly, NCD encourages the Department of State
and the United States Agency for International Development to ensure
that all foreign aid and assistance is developed and delivered in
a manner that ensures full participation and accessibility by all
people with disabilities and their families in the geographic region
served by the aid or assistance. If this practice were followed,
the United States would not have recently permitted Bosnia to use
U.S. aid to purchase thousands of dollars worth of inaccessible
buses.
Finally, NCD encourages the Department of State
to take steps to ensure that people with disabilities are a significant
part of the work force at all levels of domestic and international
operations by U.S. agencies handling international activities.
CONCLUSION
Increasing the employment rate of people with disabilities
and expanding choices in home- and community-based long-term services
and supports are two of the most significant issues in disability
policy today. Neither of these issues is subject to quick and cheap
solutions. Both require bold steps by the President and Congress,
and both require multifaceted solutions. On the employment front,
it is critical to recognize that early intervention and lifelong
development of human capital must be part of the solution. For children
with disabilities, employment goals should be established early
in their educations, and the development of marketable skills must
be emphasized in the classroom and in work-study placements. People
who acquire disabilities as adults must receive the comprehensive
medical and vocation rehabilitation they need in a timely manner,
coupled with access to accessible and affordable transportation
and housing and a technological infrastructure that will ease the
transition back to employment.
On the issue of long-term services and supports, including
consumer-directed personal assistance services and family supports
such as respite care, the President and Congress must recognize
that children and adults with significant disabilities and their
families can contribute more to the economy and enjoy a basic standard
of living taken for granted by many in the rest of the population
if we eliminate the institutional bias in Medicaid and require states
to honor the human rights of their citizens with disabilities to
live where they choose with adequate supports to participate fully
in community life. Finally, for both the employment issue and the
long-term services and supports issue to be addressed effectively,
the President and Congress must work together to remove the work
disincentives from our Social Security, Medicaid, and Medicare systems.
Americans with disabilities are poised to take their place in the
mainstream of their communities, but they are too often thwarted
in this desire by outdated federal policies and programs. Now is
the time for the President and Congress to carry out President Bush's
promise that people with disabilities be given "the opportunity
to blend fully and equally into the right mosaic of the American
mainstream."
APPENDIX
MISSION OF THE NATIONAL COUNCIL ON DISABILITY
Overview and Purpose
NCD is an independent federal agency with 15 members
appointed by the President of the United States and confirmed by
the U.S. Senate.
The overall purpose of NCD is to promote policies,
programs, practices, and procedures that guarantee equal opportunity
for all individuals with disabilities, regardless of the nature
or severity of the disability, and to empower individuals with disabilities
to achieve economic self-sufficiency, independent living, and inclusion
and integration into all aspects of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis,
policies, programs, practices, and procedures concerning individuals
with disabilities conducted or assisted by federal departments
and agencies, including programs established or assisted under
the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act; as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, to assess the effectiveness
of such policies, programs, practices, procedures, statutes, and
regulations in meeting the needs of individuals with disabilities.
- Reviewing and evaluating, on a continuing basis,
new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels, and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that operate
as disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress,
the secretary of education, the director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies on ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion and
integration into all aspects of society for Americans with disabilities.
- Providing Congress, on a continuing basis with
advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (42 U.S.C. 12101 et seq.).
- Advising the President, Congress, the commissioner
of the Rehabilitation Services Administration, the assistant secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of the Rehabilitation
Services Administration regarding the policies and conduct of
the Rehabilitation Services Administration.
- Making recommendations to the Director of the National
Institute on Disability and Rehabilitation Research on ways to
improve research, service, administration, and the collection,
dissemination, and implementation of research findings affecting
persons with disabilities.
- Providing advice regarding priorities for the activities
of the Interagency Disability Coordinating Council and reviewing
the recommendations of this Council for legislative and administrative
changes to ensure that such recommendations are consistent with
the purposes of NCD to promote the full integration, independence,
and productivity of individuals with disabilities;
- Preparing and submitting to the President and Congress
an annual report titled National Disability Policy: A Progress
Report.
International
In 1995, NCD was designated by the Department of State
to be the official contact point with the U.S. government for disability
issues. Specifically, NCD interacts with the special rapporteur
of United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
While many government agencies deal with issues and
programs affecting people with disabilities, NCD is the only federal
agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, status as a veteran,
or other individual circumstance. NCD recognizes its unique opportunity
to facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of persons with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, it was NCD that originally proposed what eventually
became the Americans with Disabilities Act (ADA). NCD's present
list of key issues includes improving personal assistance services,
promoting health care reform, including students with disabilities
in high-quality programs in typical neighborhood schools, promoting
equal employment and community housing opportunities, monitoring
the implementation of ADA, improving assistive technology, and ensuring
that persons with disabilities who are members of minority groups
fully participate in society.
Statutory History
NCD was initially established in 1978 as an advisory
board within the Department of Education (Public Law 95-602). The
Rehabilitation Act Amendments of 1984 (Public Law 98-221) transformed
NCD into an independent agency.
1 The Web site address
is http://www.infouse.com/disabilitydata. The information contained
there is excerpted from Stoddard, S., Jans, L., Ripple, J., and
Kraus, L. (1998). Chartbook on Work and Disability in the United
States, 1998. An InfoUse Report. Washington, D.C.: U.S. National
Institute on Disability and Rehabilitation Research.
2 Data reported last
year by the U.S. Bureau of the Census based on Survey of Income
and Program Participation results from 1994 indicated that 54 million
people of all ages reported having a disability, 26 million of whom
said that their disability was severe.
3 Some researchers have
pointed out that the relatively low rates of disability in the Asian
Pacific Islander and Hispanic communities may stem from a reluctance
of recent immigrants with disabilities in these groups to self-identify
on surveys either because of unusually negative cultural associations
with disability or because of fear of their disability status being
used to undermine their ability to remain in the United States.
See, for example, Leung, Paul. 1992. Asian Pacific Americans and
Section 21 of the Rehabilitation Act Amendments of 1992. American
Rehabilitation, 22(1): 2-6.
4 Note that measurements
of activity limitation in children do not capture the full range
of impairment and disability in children. For example, many children
served under the Individuals with Disabilities Education Act, particularly
children with mental disabilities, may not show up on surveys that
narrowly ask about activity limitations.
5 For a more thorough
discussion of this topic, see NCD's 1998 publication, Reorienting
Disability Research, at http://www.ncd.gov.
6 For a thorough discussion
of assisted suicide from a disability perspective, see NCD's 1997
publication Assisted Suicide: A Disability
Perspective, available on our Web site at http://www.ncd.gov.
7 The report, entitled
Grassroots Experiences with Government
Programs and Disability Policy, is available from NCD's
Web site at http://www.ncd.gov.
8 National Council on
Disability, Removing Barriers to Work:
Action Proposals for the 105th Congress and Beyond, September
24, 1997.
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