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National Disability Policy:
A Progress Report
July 26, 1996-October 31, 1997
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004-1107
(202) 272-2004 Voice
(202) 272-2074 TTY
(202) 272-2022 Fax
This report is also available in braille and large print and on
diskette and audiocassette.
The views contained in the report do not necessarily represent
those of the administration, as this document has not been subjected
to the A-19 Executive Branch review process.
LETTER OF TRANSMITTAL
October 31, 1997
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 Achieving Independence,
NCD's report and recommendations capturing the input of disability
community leaders throughout the country at a summit held in 1996.
The report 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).
The attached progress report, which covers the period July 26,
1996 through October 31, 1997, reviews federal policy activities
since the issuance of Achieving Independence, 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 is moving forward and 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 such federal programs as Social
Security disability benefits, vocational rehabilitation, Medicaid,
Medicare, special education, and Temporary Assistance for Needy
Families.
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
past 18 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 and in Achieving Independence
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, Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel Pollo
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Hughey Walker
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Speed Davis, Executive Assistant to the Chairperson
Andrew J. Imparato, General Counsel and Director of Policy
Mark S. Quigley, Public Affairs Specialist
Billie Jean Keith, Program Specialist
Jamal Mazrui, Program Specialist
Janice Mack, Administrative Officer
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
TABLE OF CONTENTS
Introduction
Progress, Concerns, and Recommendations
Disability Demographics
Disability Data Collection and Analysis
Removing Barriers to Work in Social Security Disability
Programs
Welfare Reform
Family Support
Cuts in SSI Program for Children
Immigrants, Minorities, and Rural Residents with
Disabilities
Education Policy
Technology
ADA Enforcement and Implementation
Transportation
Housing
Long-Term Supports and Services
Health Care
International Issues
Physician-Assisted Suicide
Genetic Discrimination
Wilderness Accessibility
Currency Accessibility
Conclusion
Appendix
Mission of the National Council on Disability
INTRODUCTION
On July 26, 1996, the National Council on Disability (NCD) released
a forward-looking report that set an agenda for public policy affecting
people with disabilities as we approach the millennium. The report,
entitled Achieving Independence: The Challenge for the 21st Century,
was the product of a historic summit of diverse disability community
leaders and policy makers charged with reviewing recent progress
and developing policy recommendations to facilitate inclusion, empowerment,
and independence of people with disabilities. Achieving Independence
included more than 120 recommendations for change in the areas of
policy coordination, civil rights, education, employment, social
security and other income maintenance, health insurance and health
care, long-term services in the community, technology, housing,
transportation, and international issues. The purpose of the report
that follows is to provide an update on progress made in advancing
disability policy consistent with the vision of Achieving Independence
and to offer recommendations where necessary. For ease of reference,
recommendations appear in italics. This report is required by Title
IV of the Rehabilitation Act, which calls for NCD to issue a progress
report every October 31. The current progress report covers the
period from July 26, 1996 to October 31, 1997. Achieving Independence
served as NCD's progress report for 1996.
The fundamental challenge for policy makers is the same today
as it was in 1996: to bring public policy into line with the values
of inclusion, independence, and empowerment and the heightened expectations
for economic self-sufficiency, expanded life choices, and options
for people with disabilities that are embodied in the Americans
with Disabilities Act of 1990 (ADA). A recent article in the San
Diego Union-Tribune told the story of a young lawyer with quadriplegia
who is experiencing firsthand the disconnect between ADA's vision
and the reality of our inadequate health and long-term service systems.
Assistant U.S. Attorney Holly Caudill, who spends roughly $3,500
a month on personal assistance, was able to put herself through
college and law school and obtain a highly competitive legal job
with varying levels of federal support for her attendant care. When
she was recently transferred from the U.S. Attorney's office in
her hometown of Spokane, Washington, to the U.S. Attorney's San
Diego office, she lost all federal monetary assistance with the
costs of her 24-hour personal assistance. As a result, her entire
salary is going to her attendants. Caudill, whose legal work has
won her acclaim from Attorney General Janet Reno, has joined the
growing number of people with disabilities advocating for a national
consumer-directed, community-based long term support and service
system that truly rewards and supports people with significant disabilities
who seek to work and pay taxes.(1)
Her experience illustrates one of the challenges facing policy makers
in the post-ADA environment--many people with disabilities require
subsidized supports and services at home and in the community to
take full advantage of expanded opportunities in the workplace or
in the schools.
In some ways, the past year can be seen as a watershed year for
people with disabilities in this country. A major political party
nominated a man with a disability and long-time supporter of disability
rights to be President of the United States, a war veteran in a
wheelchair was elected to the Senate from Georgia, and a visually
impaired Senate staffer with a service dog successfully fought to
accompany her boss on the Senate floor with her dog. The national
memorial to Franklin Delano Roosevelt will depict this national
hero with his disability, despite strong opposition from many who
thought it inappropriate to expose for posterity a condition President
Roosevelt found it necessary to hide during his lifetime. In recognition
of the unique challenges managed care companies face in meeting
the needs of children with disabilities and their families, Congress
exempted children with special health care needs or disabilities
covered by Medicaid from mandatory managed care that is being implemented
by many states for other Medicaid enrollees. Finally, on September
24, 1997, the Music Box Theater in New York City became the first
on Broadway to offer real-time captioning during its stage productions;
and the Joffrey Ballet of Chicago has cast a boy in a wheelchair
for this year's performance of "The Nutcracker."
Although there have been some encouraging developments over the
past year, children and adults with disabilities and their families
too often continue to fall outside the mainstream of public policy
debates. Disability issues and concerns were not a large part of
the 1996 elections and have not received significant legislative
attention in this Congress. Moreover, the President's State of the
Union Address earlier this year did not call attention to the disability
policy issues facing our nation. Although the number of people with
disabilities in the United States continues to grow, the numerous
public policy issues facing this expanding segment of our population
are not receiving adequate attention from those setting the federal
public policy agenda. Core issues such as expanding consumer-driven,
community-based personal assistance services and accessible, affordable,
and integrated housing and transportation options; ensuring universal
design in emerging technologies; improving education and employment
outcomes for people with disabilities; fighting discrimination and
disability backlash; making the changing health care system work
for people with special health care needs; and revamping our income
support programs to encourage work have not received the priority
treatment they deserve. And yet, driven largely by the increased
expectations that people in the disability community have for themselves,
there are signs of progress all around us.
This report will highlight progress, call attention to concerns,
and offer recommendations in broad areas of public policy, tracking
roughly the categories used in Achieving Independence and
including some emerging issues not addressed specifically in Achieving
Independence. This report begins with a discussion of disability
demographics, moving on to data collection and analysis. Next, the
report discusses a range of return-to-work topics, including Social
Security reform, welfare reform, and family supports. It then discusses
cuts in federal income support for children with disabilities and
their families, and policy issues facing immigrants, minorities
and rural residents with disabilities. Next, the report moves into
a broad discussion of policy progress in the areas of education,
technology, ADA enforcement and implementation, transportation,
housing, long-term supports and services, health care, and international
issues. Finally, the report discusses a handful of emerging issues,
including physician-assisted suicide, genetic discrimination, wilderness
accessibility, and currency accessibility. In next year's progress
report, NCD will discuss significant policy issues not included
herein because action on them was still pending as of October 31,
1997. Such issues include but are not limited to the reauthorization
of the Rehabilitation Act, the results of work incentive legislative
and administrative activity, and the promulgation and implementation
of regulations under the 1997 amendments to the Individuals with
Disabilities Education Act (IDEA).
PROGRESS, CONCERNS, AND RECOMMENDATIONS
Disability Demographics
Two important sources of demographic information about people
with disabilities became available for the first time in the last
year. In August 1997, the U.S. Census Bureau released a report analyzing
survey responses at the end of 1994.(2)
The Census data does not include individuals with disabilities living
in institutions, who have been estimated to number 2.1 million people.(3)
In addition, researchers this Fall began to gain access to data
from the disability supplement to the National Health Interview
Survey.
- One in five Americans, or approximately 54 million people, reported
having some level of disability. Approximately one in ten Americans,
or 26 million people, reported having a severe disability. Data
collected three years earlier showed nearly 49 million people
with a disability, 24 million of whom said their disability was
severe.
- The Census Bureau found some differences by race and Hispanic
origin in the prevalence of disability within age groups. Within
the 22-to-44-year-old age group, the proportion with a severe
disability was 5.6 percent among Whites, 11.8 percent among Blacks,
and 6.7 percent among people of Hispanic origin. In the 45-to-54-year-old
age group, the severe disability rate was 10.5 percent among Whites,
18.4 percent among Blacks, and 15.7 percent among people of Hispanic
origin.
- The employment rate for people 21 to 64 years of age was 82.1
percent among those with no disability, 76.9 percent among those
with a disability that was not severe, and 26.1 percent among
those with a severe disability. Data collected three years earlier
for people in the same age group showed employment rates of 80.5
percent for those with no disability, 76.0 percent for those with
a disability that was not severe, and 23.3 percent for those with
a severe disability. The statistically significant increase in
the employment rate of people with severe disabilities between
1991 and 1994 is noteworthy.
- Within the working population, the Census Bureau data showed
an association between the presence of a disability and lower
earnings, and showed that women with disabilities earned less
than men with disabilities.
- Among people 22 to 64 years old with no disability, 79.9 percent
were covered by private health insurance, while 3.0 percent had
only government coverage. In contrast, among people with a severe
disability in the same age group, only 43.7 percent had private
health insurance coverage, while 39.6 percent had government coverage
only.
- According to data from the disability supplement to the National
Health Interview Survey, 10.5 million to 12.6 million children
in the United States have disabilities and/or special health care
needs. That number represents approximately 15 to 18 percent of
the total population of children in the United States.
Disability Data Collection and Analysis
In Achieving Independence, NCD recommended that "all federal
statistical activities that include data collection and reporting
for other groups, such as minorities and women, include the category
of people with disabilities, using a definition based on ADA."(4)
Two of the key federal statistical activities are the decennial
census and the Current Population Survey used by the Bureau of Labor
Statistics (BLS) to track national labor force statistics on a monthly
basis.
- A multi-agency working group with significant participation
from agencies with disability expertise, including the National
Institute on Disability and Rehabilitation Research at the Education
Department, the Office of the Assistant Secretary for Planning
and Evaluation at the Department of Health and Human Services
(HHS), NCD, and others, worked with key staff from the Census
Bureau to develop and test a new question set to measure disability
status as part of census 2000. The group developed a consensus
set of disability questions that represents a significant improvement
over the questions that were asked on the 1990 census. In particular,
the new questions ask about a broader range of functional limitations,
including seeing, hearing, walking, climbing stairs, reaching,
lifting carrying, learning, remembering, and concentrating. Also,
the new questions deemphasize the correlation between disability
and inability to work. NCD commends the Census Bureau for recommending
the inclusion of the new questions in census 2000 and recommends
that Congress approve the inclusion of the new disability question
set in census 2000. Moreover, NCD encourages the interagency workgroup
that developed the new questions to continue to meet, in consultation
with disability community stakeholders outside government, to
develop additional questions that are more likely to capture the
full spectrum of the disability community and completely delink
disability status questions from ability to work questions. These
new questions should be added to the Current Population Survey
and to the next census.
- BLS, encouraged by the President's Committee on Employment of
People with Disabilities and others inside and outside the government,
has agreed to work with other agencies with disability expertise
to develop and test questions about disability status for possible
inclusion in the Current Population Survey. BLS reports that it
is in the process of testing questions and has agreed to have
its draft questions reviewed by statisticians with disability
expertise. NCD recommends that this process continue expeditiously,
building on the experience of the interagency group that worked
on the disability questions for census 2000.
- In general, there remains a need to orient disability data
collection activities to the post-ADA paradigm of thinking about
disability, focusing on the societal and environmental barriers
to full participation rather than the functional impairments of
the individual. Along these lines, federal researchers should
operationalize and track progress made in achieving the nation's
goals for people with disabilities, as articulated in ADA -- equality
of opportunity, full participation, independent living, and economic
self-sufficiency. For example, federal research and data collection
should attempt to capture and track the percentage of elementary
schools that are physically accessible, the number of professional
licensing examinations that ask questions about history of treatment
for mental illness, or the number of new software products or
government web sites that are inaccessible to people with sensory
disabilities.
Removing Barriers to Work in Social Security Disability Programs
While the lion's share of federal spending for disability is in
Social Security Administration (SSA) programs (according to some
estimates, well over 95 percent of federal spending targeted to
people with disabilities occurs in Social Security income-maintenance
programs and accompanying health coverage), these programs have
been virtually unchanged by significant disability policy changes
in other arenas, such as civil rights, independent living, and advocacy.
As President Clinton noted when he met with disability community
leaders on September 10, 1997, the United States must develop new
markets for consumer products if we want to sustain the economic
growth and prosperity we are currently experiencing. One good way
to develop new markets is to increase the economic self-sufficiency
of people with disabilities currently receiving Social Security
disability benefits. On September 24, 1997, NCD presented the President
and congressional leaders a list of action proposals to remove barriers
to work that continue to discourage Supplemental Security Income
(SSI) recipients and Social Security Disability Insurance (SSDI)
beneficiaries from participating in rehabilitation and job training
programs and reentering the workforce.(5)
These proposals, designed to transform Social Security programs
from a lifelong entitlement to an investment in employment potential
for thousands of individuals, were developed after broad consultation
with people with disabilities, their families, advocates, and policy
experts. The proposals reflect the emerging bipartisan emphasis
on personal responsibility by removing some of the complex and burdensome
federal requirements that prevent many people with disabilities
from taking charge of their own lives and becoming employed. Some
of the key recommendations in NCD's report are listed below.
- Make work pay by providing medical coverage for workers with
disabilities, replacing the SSDI income cliff with gradual benefit
reductions, ensuring that people do not lose eligibility solely
because they work, compensating for disability-related work expenses,
removing marriage penalties, waiving no-fault overpayments, and
raising resource limits.
- Increase consumer access and choice in vocational rehabilitation
by instituting a "ticket" or "voucher" program that enables SSI
recipients and SSDI beneficiaries to select and buy services leading
to employment, providing access to investment funding by simplifying
the Plan for Achieving Self-Support program and making it available
to both SSI recipients and SSDI beneficiaries, and eliminating
the scholarship penalty.
- Increase employment opportunities for people with disabilities
by reimbursing employers for disability-related expenses like
sign language interpreters, on-the-job personal assistance, and
job coaches; and instituting a tax credit for disability/diversity
training.
The Balanced Budget Act of 1997 (BBA) included a new program that
gives states the option of allowing workers with disabilities to
buy into Medicaid. To be eligible for this new program, workers
must meet the SSI definition of disability, and total family income
must be less than 250 percent of poverty. While this new program
is a step in the right direction, NCD strongly encourages Congress
and the Administration to remove the income cap for the Medicaid
buy-in. For workers with significant disabilities like Assistant
U.S. Attorney Holly Caudill, a job that pays below 250 percent of
poverty will not make economic sense. A Medicaid buy-in program
with a sliding-scale premium schedule would be more attractive to
a wider range of workers with disabilities whose health care and
long-term service needs are not being met adequately in the private
market.
NCD strongly encourages congressional leaders in both parties
to work with stakeholders in the disability community and the newly
confirmed commissioner of the Social Security Administration, Kenneth
Apfel, to transform the Social Security disability programs so that
they promote independence and economic self-sufficiency for recipients
and beneficiaries without sacrificing basic economic security for
those who are unable to support themselves.
Welfare Reform
The welfare reform initiatives being carried out pursuant to the
Personal Responsibility and Work Opportunity Reconciliation Act
(PRWOR) of 1996 will have a significant impact on individuals with
disabilities who participated in the former AFDC (Aid to Families
with Dependent Children) program, as well as people who will lose
benefits as a result of changes in the SSI and SSDI programs. It
is critical that the federal and state entities charged with overseeing
the implementation of this new law recognize that the law's goals
will not be achieved if people with disabilities transitioning to
work are not able to maintain adequate health insurance coverage
and do not have access to appropriate supports and accommodations
in the job training and job placements that grow out of welfare
reform efforts.
Moreover, the heightened emphasis on personal responsibility and
work that characterizes federal and state welfare initiatives has
the potential to create opportunities for people with disabilities
seeking to leave the benefit rolls, provided that the new initiatives
are open to and accessible by people with disabilities in the target
populations. Unfortunately, much of the rhetoric of welfare reform
has focused on the need for "able-bodied" people on welfare to get
a job, implying that "non-able-bodied" recipients need not seek
employment. Given the high prevalence of disability among the existing
welfare population, the success or failure of welfare reform will
likely turn on the ability of states to meet the needs of welfare
recipients with disabilities. Moreover, the influx of workers
that the welfare reform initiative will produce, if appropriately
conceptualized, could be used to provide services for people with
disabilities, including sign language interpreting, reading for
blind or visually impaired people, personal assistance, child care
for children with disabilities, or respite care for primary caregivers.
- According to the Department of Health and Human Services, approximately
50 percent of AFDC recipients are individuals with disabilities
or parents of disabled children.(6)
- Without identification and access to proper interventions and
reasonable accommodations, welfare recipients with disabilities
are not likely to achieve self-sufficiency within the time limits
provided under the new law. NCD encourages federal entities
to work with states to ensure that welfare recipients with disabilities
are identified to the extent possible and appropriately accommodated.
- Although PRWOR specifically provides that states are responsible
for complying with ADA and Section 504 of the Rehabilitation Act
in implementing the law's provisions, there has been little federal
effort to ensure that states are in fact making their programs
accessible to all people with disabilities in the population eligible
for services and making reasonable accommodations for persons
who require them.
- NCD is concerned that states may be steering people with disabilities
away from job training and employment by using their ability to
exempt up to 20 percent of their former AFDC population from PRWOR's
work requirements and by referring individuals with known disabilities
to the SSI program.
- Title II of PRWOR has resulted and will result in loss of cash
assistance for some people who are SSI recipients or SSDI beneficiaries.
At a minimum, NCD recommends that self-sufficiency support
programs similar or identical to the programs being developed
and offered to people leaving Temporary Assistance for Needy Families
(TANF) under Title I of PRWOR be offered to people losing cash
assistance under SSI and SSDI..
- Similarly, incentives being made available to employers (including
public employers) who hire former AFDC recipients should be extended
to employers who hire persons losing cash assistance through the
SSI/SSDI eligibility changes and the more rigorous continuing
disability review process.
- Likewise, along the lines of our return-to-work recommendations,
NCD recommends that Medicaid eligibility be decoupled from eligibility
for TANF, SSI, or SSDI, so that people with disabilities are not
forced to forgo working in order to maintain vital medical and
long-term services and supports. To the extent that this recommendation
is adopted, it is critical that current Medicaid recipients not
lose health coverage solely as a result of the recommended decoupling.
- NCD commends the President and Congress for taking some steps
to delink health coverage from cash assistance in the Balanced
Budget Act (BBA), signed by the President in August 1997, which
allows certain SSI recipients who become employed to continue
their health coverage by purchasing Medicaid. Likewise, BBA ensures
that children who lose benefits as a result of the new children's
SSI eligibility definition will retain Medicaid coverage, even
if their families are not otherwise eligible for the program.
NCD urges Congress and the Administration to ensure that states
implement this important provision for children and families consistently
so that no child experiences an unintended lapse or loss of health
care coverage as a result of changes in SSI eligibility.
- NCD commends the Department of Health and Human Services (HHS)
for establishing a workgroup on welfare reform and disability,
which is charged with developing materials and a structure to
provide technical assistance to states in helping TANF recipients
with disabilities to become productive workers and advising policy
makers regarding TANF issues as they relate to disability. The
workgroup includes members from the Departments of Education,
Labor, and Justice, and the President's Committee on Employment
of People with Disabilities. Although NCD applauds HHS for
recognizing the need for this workgroup, we remain concerned that
welfare reform is proceeding at a pace that is leaving the workgroup
behind. There is a need for policy makers throughout government
to recognize and address the fact that the disability issues in
welfare reform are core issues that will determine the success
or failure of the entire initiative.
Family Support
One of the themes of early welfare reform emphasized the importance
of child care for parents seeking to leave the welfare rolls and
enter the workforce. Child care issues can be compounded when either
the child or the parent has a disability or special health care
need. Child care should be viewed as a critical family support for
families where the child or parent has a disability. Nonetheless,
to the extent that child care issues are addressed by policy makers,
the unique issues facing families of children with disabilities
and parents with disabilities, particularly when family income is
below poverty, rarely receive adequate attention.
- NCD encourages the Administration and Congress to take steps
to ensure that children with disabilities and parents with disabilities
will benefit from administrative and congressional efforts to
improve child care options for working parents.
- As former welfare recipients and others are trained to become
child care workers, it is critical that training programs prepare
workers to meet the needs of children and parents with a range
of disabilities in a culturally competent manner.
- Part I of IDEA, enacted in 1994, created a national family support
systems change program that is scheduled to sunset at the end
of FY 1998. NCD strongly encourages Congress and the Administration
to authorize and fund ongoing family support programs in freestanding
legislation or as part of other legislation before the sunset
date. These programs play an important roll in ensuring that public
policy does not overlook the needs of families of children with
disabilities and special health care needs.
Cuts in SSI Program for Children
Pursuant to Title II of PRWOR, the childhood eligibility standard
for SSI was tightened, putting hundreds of thousands of low-income
children and their families at risk of losing critical cash assistance
and health coverage. These changes were made because many in Congress
and some vocal critics outside Congress believed that the old childhood
eligibility standards were subject to fraud and abuse, despite the
fact that studies by the General Accounting Office (GAO) and Social
Security were unable to document any systemic problems. Social Security
proceeded to issue regulations interpreting the new standard that
the New York Times described in an editorial as appearing
"unduly harsh."(7) The Administration
estimated that approximately 260,000 children will have their eligibility
to continue to receive SSI benefits reviewed under the new standards,
and that over half of these, or 135,000 children, will have their
benefits terminated as a result of these reviews.(8)
Several key senators in both parties, including John Chafee (R-RI)
and the minority leader, Tom Daschle (D-SD), have indicated a desire
to have fewer children made ineligible. As of October 31, Social
Security Commissioner Kenneth Apfel was conducting a "top to bottom"
review of how the agency is implementing the new rules.(9)
- As of October 18, 1997, more than 138,000 children had been
terminated from SSI pursuant to the new eligibility standards.(10)
- There are large differences in the rates at which children are
losing benefits in different states. In Mississippi, for example,
82 percent of the children whose cases had been reviewed by early
September had their benefits terminated, compared with about 38
percent in Minnesota and 36 percent in the District of Columbia.(11)
- According to a September article in the Washington Post,
SSA figures show that, of 2,200 cases that had been appealed and
reached the first step of review, 67 percent had been overturned
with benefits restored.(12)
It is likely that many of the families who have been terminated
have not filed appeals on behalf of their children. Accordingly,
even if reversals on appeal are common, many children who may
have been terminated improperly will never seek review of the
termination decision.
- As of 1996, there were approximately one million children with
disabilities receiving SSI that qualified them for Medicaid. Many
of these children are at risk of losing or experiencing a gap
in health insurance coverage as a result of changes in the SSI
eligibility standard for children. Moreover, as new children and
families apply for SSI and experience denials, many of the new
childhood applicants will be forced to go without health coverage
while they challenge the denials on appeal because they were without
coverage when they applied for benefits. Lack of coverage can
mean lack of access to critical services and supports such as
outpatient rehabilitation, asthma care, or preventive care, resulting
in irreversible adverse health outcomes, including premature death,
for some of these children. As mentioned above in the section
on Welfare Reform, NCD urges the Administration and Congress to
ensure that states implement BBA provisions preserving Medicaid
eligibility for children losing SSI consistently so that no child
experiences an unintended lapse or loss of health care coverage
as a result of changes in SSI eligibility. Moreover, NCD encourages
Congress to require the Social Security Administration to refer
the families of new child applicants who are turned down for SSI
to the appropriate entity for separate determination of Medicaid
eligibility.
- NCD is concerned that the promised 30-day review will not undo
the damage that is occurring as a result of an unnecessarily narrow
eligibility standard for SSI for children. Although much of the
recent advocacy and criticism has focused on SSA's interpretation
of the new law, and there appears to be room for improvement in
how the new law is being implemented, NCD remains concerned that
a basic support program for low-income children with disabilities
and their families was significantly cut by Congress and the President
without a well-reasoned and well-documented policy rationale for
moving away from an eligibility standard that had grown out of
a decision of the U.S. Supreme Court. NCD strongly encourages
SSA, HHS, Education, and the rest of the federal and state policy
and research communities to evaluate the impact of the recent
cuts on children and families. For example, how are the
cuts affecting educational outcomes, health outcomes, and functional
outcomes for these children? To what extent are the cuts making
it more difficult or impossible for low-income families to continue
to care for their children at home in integrated community settings?
What is the breakdown by race and ethnicity of the denial rates?
Are the cuts having a disproportionate impact on children and
families from minority racial or ethnic backgrounds? Are they
having a disproportionate impact on children and families in rural
communities, who may have more difficulty gaining access to free
legal advocacy services?
- The Office of Management and Budget (OMB) and the Congressional
Budget Office (CBO) estimated significant cost savings to the
Federal Government to be realized as a result of the recent narrowing
of eligibility for SSI for children. To the extent that significant
cost savings are being realized as a result of the recent cuts,
NCD encourages policy makers to use these new funds to expand
other programs and services offered to low-income children with
disabilities and their families.
- Particularly in light of the expressed desire of many of
the Senate authors of the new eligibility standard for children's
SSI to see fewer children terminated from the program, NCD encourages
SSA and the White House Office of Management and Budget to reexamine
and revise the new administrative standard for children's SSI
eligibility in a manner that will result in smaller and more consistent
termination and denial rates.
Immigrants, Minorities, and Rural Residents with Disabilities
In addition to the changes outlined above, PRWOR mandated that
current and future legal immigrants be barred from receiving SSI
and food stamps, with some limited exceptions. Likewise, with limited
exceptions, PRWOR gave states discretion to determine whether or
not legal immigrants would continue to be eligible for federal assistance
under TANF, services under the Social Services Block Grant, and
Medicaid. In a number of states, where eligibility to receive Medicaid
depends on eligibility to receive SSI benefits, Medicaid would be
discontinued to existing recipients when SSI benefits were cut off,
unless the state laws were changed. Moreover, the law provided that
immigrants who arrived legally in the United States after enactment
of PRWOR would not be eligible for federal means-tested public benefits
for five years after their date of entry, again with some limited
exceptions. CBO estimated that PRWOR would result in denial of SSI
benefits to approximately 500,000 legal immigrants, and of food
stamps to approximately 1 million of the roughly 1.5 million legal
immigrants who were receiving federal assistance.
BBA undid some of the damage of PRWOR with respect to legal immigrants.
The two major changes will continue benefits for noncitizens receiving
SSI on August 22, 1996, and allow eligibility if they were in the
United States on August 22, 1996, and are "disabled." These changes
allow for continued SSI and Medicaid eligibility for noncitizens
with disabilities who were in the United States as of August 1996,
but leaves the general bar to eligibility for food stamps in effect.
Likewise, PRWOR restrictions on SSI eligibility still apply to immigrants
with disabilities entering the country on or after August 22, 1996.
- Although NCD commends Congress and the President for softening
the effect of some of BBA's cuts in benefits for legal immigrants
with disabilities, we remain concerned about the public policy
direction of the remaining cuts in PRWOR with respect to immigrants.
Denying basic subsistence benefits to disabled legal immigrants,
many of whom have worked and paid taxes, is unjust and violates
common principles of fairness and compassion. No disabled person
legally in this country, whether immigrant or American born, should
be faced with the threat of losing his or her only means of financial
support or medical services. Removing basic federal supports for
this population puts their lives at risk, and states and private
charities do not have the resources or the political will to pick
up the slack. Put simply, it is NCD's position that the budget
should find its balance elsewhere.
- As we recommended with respect to changes in childhood eligibility
for SSI, NCD recommends that the federal research community track
the impact of the cuts in federal assistance for immigrants with
disabilities. Also, NCD recommends that employment and training
services being made available to people leaving the TANF rolls
be made available to immigrants losing federal assistance as well.
- NCD encourages Congress to restore basic benefits to people
with disabilities who cannot be naturalized because they are unable
to take the required oath.
In an effort to stave off the impending loss of their sole means
of support, many legal immigrants with disabilities who have held
their green cards long enough to be eligible to file for citizenship
have commenced the process of becoming naturalized U.S. citizens.
Unfortunately, understaffing at Immigration and Naturalization Services
offices has resulted in long lines for naturalization and people
with disabilities are finding themselves at the end of these long
lines as they seek to become naturalized. By raising the importance
of becoming a citizen, PRWOR highlighted a fundamental problem with
the immigration laws in this country--the inability of many individuals
with severe disabilities to become U.S. citizens. Despite some recent
changes exempting immigrants with "physical and developmental disabilities"
or "mental impairments" seeking citizenship from requirements that
they prove their English proficiency and knowledge of U.S. civics,
all immigrants are still required to take the citizenship oath and
renounce their former citizenship. These remaining requirements
have the potential to make it impossible for people with the most
severe mental impairments, such as people with Alzheimer's, some
people who have had strokes, and people with severe mental retardation,
to become citizens because of questions about their competence to
understand the meaning of the citizenship oath and renunciation
of former citizenship. In an effort to address these remaining barriers,
legislative measures have been introduced to give naturalization
officials the flexibility to accommodate the needs of individuals
with disabilities in their process. NCD applauds recent efforts
to facilitate the naturalization of immigrants with the most severe
disabilities and makes the following recommendations with respect
to the naturalization process:
- Naturalization must be afforded to all qualifying individuals
with disabilities, regardless of the severity of their disability.
- The naturalization process must be sensitive to the unique
needs of individuals with disabilities and the naturalization
examiners must receive adequate training to evaluate when the
English and civics tests and oath requirements should be waived
or modified.
- The naturalization process should be in accord with the requirements
of ADA.
In addition to the issues facing immigrants discussed above, people
with disabilities from minority and rural communities face a range
of challenges and barriers to full enjoyment of their rights as
citizens with disabilities. In an effort to identify and address
some of these challenges and barriers, NCD convened a roundtable
discussion in Atlanta, Georgia, in August on outreach to minorities
with disabilities and persons with disabilities living in rural
communities. NCD is currently in the process of responding to the
recommendations that were suggested by roundtable participants for
how the Federal Government could do a better job of meeting the
unique needs of such persons. Some of the recommendations have made
their way into other sections of this report, and NCD will include
a longer list of recommendations in our 1998 progress report. In
the interim, NCD makes the following two recommendations:
- NCD encourages the President's Advisory Commission on Race
to include people with disabilities and their families in the
national dialogue on race, paying particular attention to the
unique issues posed by the intersection between disability and
minority racial/ethnic status.
- At the August roundtable discussion, several people called attention
to the need for federal enforcement and technical assistance entities
to focus resources and initiatives on educating people in minority
communities about the requirements of ADA and other federal disability
civil rights statutes and how to bring claims under these laws.
Targeted outreach to minority communities, particularly isolated
communities in rural areas, would be a worthwhile follow-up to
much of the urban-focused training conducted by the Department
of Justice (DOJ) and the U.S. Equal Employment Opportunity Commission
(EEOC) in the years after ADA was passed. NCD encourages the
federal enforcement and technical assistance entities, along with
the protection and advocacy network, to work together to develop
strategies to reach minorities, people in rural communities, and
other underserved groups as part of their ongoing outreach and
technical assistance plans.
Education Policy
On June 4, 1997, President Clinton signed into law the Individuals
with Disabilities Education Act Amendments of 1997 (IDEA '97). This
law, which represents a bipartisan compromise and culminated a prolonged
and at times controversial reauthorization, includes some significant
improvements in education policy for students with disabilities.
An important theme of the 1997 amendments, based on 20 years of
experience with special education, was to reduce the dissonance
between regular education and special education, looking at the
whole school and the whole education system to the greatest extent
possible.
- IDEA '97 strengthens academic expectations and accountability
for the nation's 5.8 million children with disabilities and attempts
to bridge the gap between what those children learn and the regular
curriculum.
- Beginning July 1, 1998, each disabled student's individualized
education program (IEP), the plan that sets out a student's educational
goals as well as the instruction and services the student will
receive, must relate more clearly to the general curriculum that
students in the regular classrooms receive. Also, the student's
regular classroom teacher must participate in meetings where the
student's IEP is developed.
- IDEA '97 also includes provisions for strengthening parental
involvement. In all states, parents are now included in groups
making eligibility and placement decisions about children with
disabilities. In addition, the new law requires that the state
advisory panel, which provides policy guidance for states on the
provision of special education and related services for children
with disabilities in the state, must include as a majority of
its membership individuals with disabilities or parents of children
with disabilities.
- Consistent with the importance of holding students with disabilities
to high standards, IDEA '97 requires that students with disabilities
be included in state and district-wide assessments given to all
other children, with the provision of appropriate accommodations
where necessary. The Department of Education has given major support
to research projects and to a center that provides technical assistance
to states to ensure that students with disabilities can be offered
appropriate accommodations to facilitate their participation in
assessments.
- This year, for the first time, the Department of Education has
introduced accommodations for including more children with disabilities
in the nation's report card, the National Assessment of Educational
Progress (NAEP), which it administers. NAEP is designed to assess
the progress of our nation's schools based on a representative
sample of students. Although NAEP has been in existence for the
past 25 years, the progress of students with disabilities has
not properly been included in past assessments.
- The 1997 amendments made the old "Part H" early intervention
program for infants and toddlers into "Part C." The new Part C
places greater emphasis on the use of natural environments in
provision of early intervention services; places greater attention
on children at risk of developing disabilities in the individualized
family support plan (IFSP); and expands the Federal Interagency
Coordinating Council overseeing early intervention to include
officials with Head Start and child care responsibilities. NCD
supports these important reforms for early intervention, yet NCD
remains concerned that the Administration should ensure that issues
related to infants and toddlers with disabilities are also included
in some of the broader generic system initiatives dealing with
child care and early brain development.
- One of the most controversial issues in the recent reauthorization
of IDEA was that of school discipline. In an effort to address
the concerns voiced by school officials that the law's "stay put"
provisions were making it difficult to discipline disruptive or
violent students being served under IDEA, the new law permits
schools to remove students with disabilities from the classroom
for up to 45 days if they are caught with weapons or illegal drugs
or if they are substantially likely to injure themselves or others.
Under the old law, children could be removed for up to 10 days.
The requirement that children be kept in their placement pending
an opportunity to challenge the proposed discipline was intended
to protect students participating in IDEA from unilateral changes
in placement by the school. While the compromise was likely necessary
to address the concerns of school officials, NCD is concerned
that the discipline issue received undue attention from Congress,
given the documented scope of the problem. As President Clinton
noted when he signed IDEA '97 into law, "young people with disabilities
drop out of high school at twice the rate their peers drop out
of high school, and into less certain futures." Rather than making
it easier for schools to wash their hands of students with disabilities,
federal policy must look for ways to address the needs of all
students with disabilities so that they stay in school and succeed.
- In the FY 1997 and FY 1998 appropriations for the Office of
Special Education Programs, Congress allocated and the President
signed increases of approximately $750,000 and $700,000, respectively,
for special education services under Part B of IDEA. NCD applauds
Congress for recognizing the importance of increasing the federal
financial commitment to the education of children with disabilities,
and strongly encourages Congress and the Administration to build
on these increases in special education budgets for FY 1999 and
later years.
- While NCD commends the Administration and Congress for the
improvements noted above, we remain concerned that the civil rights
vision of a free and appropriate public education embodied in
IDEA has frequently been ignored by schools struggling with inadequate
funds and multiple challenges. Monitoring of compliance with IDEA
by federal authorities is simply not adequate, and students with
disabilities continue to be ill-served by a separate and segregated
special education system in too many of our school districts.
NCD strongly encourages the Department of Education and the
Department of Justice to strengthen their compliance monitoring
under Part B of IDEA, Section 504 of the Rehabilitation Act, and
ADA, including the use of appropriate sanctions for noncompliance.
- NCD also remains concerned about fewer deaf students learning
how to communicate in sign language and fewer blind and visually
impaired students learning how to read braille as two unintended
side effects of the increased emphasis on mainstream instruction.
Public school systems must find ways to continue instruction in
these vital skills for deaf students and blind and visually impaired
students, and explore integrating instruction in American Sign
Language and braille awareness as part of the core curriculum
available to all students.
- NCD also remains concerned that the history of the disability
rights movement is not receiving adequate attention in most American
history texts, and that students are leaving the public education
system with little knowledge of federal disability civil rights
laws and the civil rights movement that led to their development.
Similarly, although there has been some progress in higher education,
disability issues and disability culture continue to receive short
shrift in the course offerings of our colleges and universities.
Moreover, key professional schools such as law schools, medical
schools, architecture schools, and education schools have shown
little leadership in making knowledge about disability issues
and the requirements of civil rights laws like ADA, IDEA, and
the Fair Housing Act a basic part of professional education. NCD
recommends that curriculum developers and textbook writers throughout
the education system make a concerted effort to include the history
of the disability rights/independent living movements and their
federal legislative and policy legacy as part of mainstream curricula
so that all students will be exposed to disability civil rights
as they are exposed to other areas of civil rights.
- Finally, as the government seeks to help local schools access
the Internet and other information technologies in the classroom,
NCD strongly encourages the officials involved to ensure that
access issues for students with disabilities, particularly students
with sensory disabilities, are addressed (e.g. multimedia CD-ROMs
often are not accessible for such students) so that these students
may benefit from the increased emphasis on technological literacy
at school and in the workplace.
Technology
As the American population ages, sensory disabilities and lack
of fine motor skills will become more and more prevalent. These
conditions represent the greatest bar to computer use with present
technology. Federal efforts to help a child with visual impairments
use technology in the classroom should also contribute, over time,
to the ability of the child's grandparents to check their Social
Security or health insurance benefits, bank and pay bills, or send
an e-mail message. Moreover, federal and private efforts to ensure
universal design of technology as it is developed will ultimately
mean an infrastructure for business that can tap into the productive
capacity of all workers.
- The Telecommunications Act of 1996 requires providers of telecommunications
services and manufacturers of customer premises equipment to make
such services and equipment accessible, if this is readily achievable.
This is the first time the telecommunications industry has been
required broadly to address accessibility issues. The Telecommunications
Act requires the United States Architectural and Transportation
Barriers Compliance Board (the "Access Board") to develop, in
conjunction with the Federal Communications Commission (FCC),
guidelines for access for telecommunications equipment. In April
1997, the Access Board issued a Notice of Proposed Rulemaking.
Official guidelines are awaiting clearance by OMB and are expected
by the end of this calendar year.
- FCC has not yet announced or issued proposed regulations on
the accessibility of telecommunications services. Moreover, it
has not yet announced the process by which it will address complaints
about inaccessible services or equipment under the Telecommunications
Act. The legislative history of this law indicates a clear
intent by Congress that FCC develop and enforce regulations in
this area. The significant delay in doing so, while new, inaccessible
technologies emerge each week, is of serious concern to NCD. NCD
strongly encourages FCC to act promptly in this area.
- In August 1997, FCC issued regulations related to closed captioning
under the Telecommunications Act. These regulations, though
not completely in accord with the expectations of many in the
deaf community, will result in important improvements in access
to video programming by people with hearing disabilities if they
are implemented appropriately and if video programmers are monitored
to ensure compliance with the regulations.
- In April 1997, the Web Accessibility Initiative (WAI) was launched
as a partnership among the World Wide Web Consortium, the U.S.
government (the White House, National Science Foundation, and
Department of Education) and other interested governments. Based
at the Massachusetts Institute of Technology, WAI is intended
to promote Internet access for people with disabilities on both
a policy and technical level. NCD applauds this initiative
and encourages appropriate U.S. entities to support the work of
the initiative.
- In June 1997, the House passed HR 1385, which includes language
to strengthen the implementation of Section 508 of the Rehabilitation
Act by transferring enforcement responsibility for ensuring that
federal equipment and data are accessible from the U.S. General
Services Administration to OMB. Language in a draft Senate bill
would transfer such responsibility to the Access Board instead.
NCD supports the Senate proposal because of the Access Board's
commitment and expertise in developing accessibility guidelines
under ADA and the Telecommunications Act.
- In May 1997, Microsoft Corporation released a long-awaited technology
called "Active Accessibility," which provides a standard way for
Windows applications to communicate with adaptive equipment such
as screen reader programs used by blind persons. Although Microsoft
encountered some deserved criticism when it failed to incorporate
Active Accessibility in a Microsoft web browser that was released
in late September,(13) NCD
commends Microsoft for releasing technology that addressed graphical
user interface access. This new technology responded to the crisis
that people with disabilities, particularly visual disabilities,
were facing as a result of the rapid deployment of graphical user
interfaces to computing. Moreover, NCD encourages Microsoft
to incorporate accessible technology in its Windows 98 operating
system and other related applications. Under its obligations under
Sections 504 and 508 of the Rehabilitation Act, the Federal Government
should be favoring procurement of software that supports accessibility.
Accordingly, NCD encourages federal procurement officials to
make it clear to Microsoft and other vendors that it will not
purchase technology that is not accessible.
- NCD also commends IBM and Sun Microsystems for their public
commitment in fall 1997 to making Java-based applications accessible
to people with disabilities. As NCD encouraged Microsoft, so
NCD encourages IBM and Sun Microsystems, along with other technology
vendors not mentioned in this report, to incorporate accessibility
in the design stage of all emerging products.
- NCD encourages the Health Care Financing Administration (HCFA)
and other sources of public financing for assistive technology
to recognize that high cost can make technology inaccessible for
people with disabilities, and to address to dearth of publicly
subsidized assistive technology under Medicaid, Medicare, Rehabilitation,
and other federal, state, and local programs. The upcoming reauthorization
of the Technology-Related Assistance for Individuals with Disabilities
Act would be a good opportunity to increase the federal commitment
to subsidizing access to assistive technology.
- NCD is aware that many election officials are considering moving
to a system of voting that would enable people to vote by computer
or through other remote technologies. To the extent that these
proposals are implemented, NCD encourages the Federal Election
Commission, the Department of Justice, and other interested federal,
state, and local entities to ensure that the new voting system
is accessible for all people with disabilities, particularly for
people with visual disabilities and people who do not have easy
access to computers or other remote technologies.
ADA Enforcement and Implementation
Having recently celebrated its seventh birthday, ADA continues
to enjoy widespread support in the disability community and mixed
reactions from the broader society. NCD, the National Institute
on Disability and Rehabilitation Research, and the U.S. Commission
on Civil Rights have all begun studies on how ADA is being enforced,
the results of which should be available next year. However, without
the benefit of the systematic review that is currently under way,
NCD will take this opportunity to call attention to some significant
developments in ADA implementation.
- One of the most disturbing trends in the case law interpreting
Title I of ADA, which prohibits employment discrimination on the
basis of disability, is the tendency to narrow the definition
of disability and thereby narrow the group of people who are able
to benefit from the law's protections. Although the ADA definition
was designed to be broad so that it would encompass the full range
of people who experience discrimination based on fears, myths,
and stereotypes about disability, many courts have interpreted
the definition in a way that excludes people with a broad range
of impairments from the law's protections.(14)
Federal courts have found people with various forms of cancer,
diabetes, epilepsy, HIV disease, mental disorders, and other common
conditions that often provoke prejudice to fall outside the law's
definition of disability. In a recent case involving a bank employee
who was HIV positive but asymptomatic, the majority of the Fourth
Circuit sitting en banc found that asymptomatic HIV disease was
not a disability for purposes of statutory protection.(15)
NCD strongly encourages EEOC, DOJ, and the Office of Federal
Contract Compliance Programs at the Department of Labor (OFCCP)
to work together to develop a federal enforcement strategy to
address the disturbing trend in the courts narrowing the definition
of disability under ADA and Title V of the Rehabilitation Act.
- A related trend has been the tendency of federal courts to find
people not to be "qualified" for a particular job based on evidence
they submit in support of their applications for disability benefits
or evidence simply supporting their claim that they have a "disability"
for purposes of ADA protection. Some courts have gone so far as
to prevent people from bringing an ADA claim against a former
employer based solely on the fact that they submitted an application
for disability benefits asserting they were unable to work. EEOC
issued guidance in February 1997 clarifying that an application
for disability benefits should never act as a bar to an ADA claim,
and Social Security has filed at least one amicus brief concurring
with EEOC's position, but the federal courts continue to be split
on this issue. NCD strongly encourages EEOC, DOJ, SSA, OFCCP,
and other interested federal entities to work together to address
court decisions improperly requiring people to choose between
their civil rights and their ability to support themselves.
- EEOC issued important guidance in March 1997 discussing the
application of Title I of ADA to individuals with psychiatric
disabilities. Although the guidance itself largely restated long-standing
EEOC policy, the reaction to the guidance from the media and the
employer community was surprisingly negative. Many journalists
called into question the need for civil rights protections for
people with psychiatric disabilities, and much of the reaction
to the guidance played out many of the fears, myths, and stereotypes
about mental illness that ADA was designed to address. An editorial
cartoon prompted by the guidance, for example, depicted a caricature
of a person with a psychiatric disability wielding an axe and
wearing a hockey mask, a reference to the homicidal character
"Jason" from horror films.
- More recently, EEOC has brought a number of lawsuits challenging
distinctions between mental and physical disabilities in long-term
disability insurance coverage. Many policies in the long-term
disability insurance area limit coverage to one or two years if
the disability is "mental" or "emotional," but provide lifetime
wage replacement if the disability is "physical." NCD commends
EEOC for taking on this issue, and for making the long-term disability
insurance industry justify its long-standing second-class treatment
of people who are forced to stop working because of mental disabilities.
- On July 26, 1996, DOJ launched an ADA home page at www.usdoj.gov/crt/ada/adahom1.htm.
The page, which includes all of DOJ's technical assistance documents
and many settlement agreements and model policies, gets approximately
35,000 hits a week. DOJ also operates an ADA information line,
which receives over 75,000 calls a year. In addition, DOJ has
implemented a fax-on-demand system whereby technical assistance
documents can be faxed 24 hours a day.
- DOJ's Civil Rights Division is working with U.S. attorneys throughout
the country on ADA enforcement. DOJ is also part of a disability
task force under which state attorneys general are working with
DOJ on disability civil rights issues across the country.
- DOJ has continued to build its mediation program to the point
where it now has approximately 350 professional mediators in 42
states who have received ADA training and mediate complaints referred
from DOJ on a pro bono basis. Approximately 90 percent of DOJ
ADA complainants are opting for mediation, and 82 percent of these
complaints are being mediated successfully. The majority of cases
being referred to mediation include issues such as architectural
barrier removal when readily achievable; failure to modify policies
such as excluding a person with a service animal; failure to provide
effective communication such as a sign language interpreter when
appropriate; and failure of a government entity to provide program
access.
- At an NCD hearing in August 1997 on disability issues in minority
and rural communities, several people called attention to the
need for federal enforcement and technical assistance entities
to focus resources and initiatives on educating people in minority
communities about the requirements of ADA and other federal disability
civil rights statutes and how to bring claims under these laws.
Targeted outreach to minority communities, particularly isolated
communities in rural areas, would be a worthwhile follow-up to
much of the urban-focused training that DOJ and EEOC conducted
in the years after ADA was passed. NCD encourages the federal
enforcement and technical assistance entities, along with the
protection and advocacy network, to work together to develop strategies
to reach minorities, people in rural communities, and other underserved
groups as part of their ongoing outreach and technical assistance
plans.
- NCD is concerned that resources for ADA enforcement, particularly
at EEOC and DOJ, are inadequate to address the discrimination
people with disabilities face throughout the country. EEOC, for
example, received no new resources when it was given ADA to enforce,
and it continues to struggle with a large pending inventory of
cases waiting for investigation, which often translates into long
delays for charging parties. Also, although the President requested
an increase in the ADA enforcement budget for DOJ in FY 1997,
Congress did not approve the increase. NCD strongly recommends
that Congress and the President allocate substantial new financial
resources to EEOC and DOJ to facilitate effective enforcement
of ADA.
- NCD recommends that DOJ exercise greater leadership in addressing
the growing use of inaccessible information kiosks by state and
local governments, which are prohibited by Title II of ADA. Moreover,
NCD strongly encourages DOJ to become more proactive in addressing
a range of technology access issues under Titles II and III of
ADA, including the issue of inaccessible web sites, automated
teller machines, and transportation-related technologies.
Transportation
Like housing, health care, and technology, transportation must
be affordable and accessible if people with disabilities are to
be able to live independently and participate fully in their communities.
As a follow-up to Achieving Independence, NCD representatives
met with Secretary of Transportation Rodney Slater on May 1, 1997,
to present NCD's transportation-related recommendations and begin
a dialogue to improve transportation policy for people with disabilities.
- In the regulatory arena, Secretary Slater committed first to
address pending proposals to improve the Department of Transportation's
(DOT's) rules under the Air Carrier Access Act. Then, DOT plans
to develop its proposed rule on over-the-road bus accessibility.
NCD is very concerned that DOT act promptly in both these areas
to address the substantial deficiencies in access for people with
disabilities to air travel and over-the-road bus travel. The continuing
inaccessibility of over-the-road buses, combined with the high
cost of air and rail travel, means that many people with disabilities
cannot afford to travel between cities. NCD strongly encourages
DOT to act promptly in these areas.
- Secretary Slater also acknowledged that the Access Board was
working, in cooperation with the Federal Highway Administration,
to issue guidance concerning public rights-of-way, and DOT is
considering referencing this guidance in its Section 504 rules.
Likewise, Secretary Slater committed to continuing to work with
the Department of Health and Human Services to improve coordination
between transportation services funded by the two agencies and
to continue to coordinate with the Civil Rights Division at DOJ
on transportation-related enforcement matters.
- Finally, Secretary Slater reported that the Federal Transit
Administration had recently added a toll-free number for filing
transit-related ADA complaints to facilitate a prompt response
to concerns about transit service for individuals with disabilities.
The number is 1-888-446-4511.
- In response to ADA requirements, fixed-route transit bus accessibility
doubled (about 60 percent of the total fleet is lift-equipped
or ramp-equipped), and more low-floor buses and accessible light-rail
cars are in use. The new light-rail systems recently opened in
St. Louis, Dallas, and Denver are all fully ADA accessible. Likewise,
annual aggregate paratransit trips increased from 45 million in
1992 to 54 million in 1995. Although much of the progress referenced
in this paragraph occurred before the period covered in this progress
report, it is included here because DOT announced much of the
information during the covered period.
- In November 1996, DOT issued regulations that require airlines
and airports to contract for the purchase and use of lifting devices
for boarding commuter aircraft with 19 to 29 seats that are not
served by jetways. The regulations required that such contracts
be in place by August 1997 and gave large airports two years and
small airports three years to obtain the necessary devices.
- More broadly, NCD encourages Congress, the Administration,
state and local partners, and outside stakeholders to fund programs
that will increase opportunities for people with and without disabilities
to access affordable mass transit.
Housing
As it does with everyone else, housing plays a central role in
the lives of people with disabilities. It is where they live, sleep,
bathe, dress, conduct significant parts of their family and social
lives, and conduct other core life activities. Without accessible,
useable, and affordable housing, people with disabilities are severely
hampered as they try to become independent, productive members of
their communities. Like transportation and personal assistance,
the availability or absence of real housing options for people with
disabilities dramatically affects their independence and economic
self-sufficiency.
Since the publication of Achieving Independence, people
with disabilities have seen both positive and negative developments
in housing policy.
- Through the FY 1997 appropriations process, the Department of
Housing and Urban Development (HUD) experienced severe funding
and staffing reductions as a result of an almost $8 billion cut
in its appropriations. In addition, Congress and the President
repealed a set of preferences that directed communities to make
housing available to people who were homeless, a significant percentage
of whom are people with disabilities, particularly people with
mental illness.
- The 104th Congress and the President also made it easier for
housing authorities to designate public housing "elderly only."
NCD is concerned that the housing that has been designated
"elderly only" will exclude people with disabilities below age
62 and thereby reduce the availability of accessible public housing
for this population.
- The FY 1997 appropriations for HUD also included a $50 million
allocation for Section 8 tenant-based rental assistance specifically
for people with disabilities who lost housing because of elderly-only
designation. Although these additional resources have the potential
to expand housing options for people with disabilities and fill
the hole left by any "elderly-only" designations, the requirement
that the money go to people who have lost housing as a result
of elderly-only designation may have the unintended effect of
encouraging elderly-only designation by public housing authorities
seeking to tap into the new money. In addition, these certificates
and vouchers have limited utility for people with significant
mobility impairments because of the great dearth of physically
accessible housing in the community.
- The 104th Congress and the President reduced protections against
arbitrary evictions of residents with a history of alcohol or
substance abuse disorders. NCD is concerned that these changes
have the potential to result in unfair evictions of people based
on fears, myths, and stereotypes about their disabilities.
- In the area of fair housing enforcement, this year HUD announced
a landmark $1.3 million new component of its Fair Housing Initiatives
Program (FHIP) that will target fair housing enforcement for people
with disabilities. As of October 31, 1997, this new money had
been awarded to a range of qualified disability community organizations
and others throughout the country. Entities selected to participate
in this program will be eligible to compete for additional fair
housing enforcement dollars in HUD's Fair Housing Administration
Program (FHAP) after two years of participation in the FHIP. Accordingly,
for the first time, HUD has deliberately expanded the pool of
entities charged with fair housing enforcement to include organizations
from the disability community. In the current climate of shrinking
resources for fair housing enforcement, HUD is to be commended
for recognizing the need to expand its efforts in this critical
area for people with disabilities.
- In FY 1997, 25 percent of the funds in HUD's Section 811 program,
which targets people with disabilities, was set aside for tenant-based
rental assistance (i.e., certificates and vouchers). NCD applauds
this important step away from project-based, segregated housing
for people with disabilities.
- In its Notices of Funding Availability for its Section 811 program,
HUD prohibited mandatory acceptance of services as a condition
of housing. In addition, in December 1996 Secretary Henry Cisneros
sent a notice to providers and residents of Section 202 housing
that made clear that residents may not be required to accept services
as a condition of living in Section 202 housing. These important
developments are consistent with NCD's recommendation in Achieving
Independence that HUD cease funding programs that require
an individual to live in a particular setting in order to receive
services that are not related to housing. NCD encourages HUD
to continue to delink housing from services in other programs
it administers. Also, NCD urges HUD to continue to recognize
that people with disabilities should have a range of housing choices
comparable to that available to people without disabilities.
- This year HUD created a "People with Disabilities" web site
to showcase best practices in making housing accessible for people
with disabilities.
Long-Term Supports and Services
As the case of Holly Caudill recounted at the beginning of this
report illustrates, the United States has yet to develop consistent
federal policies that support people in need of long-term services
and supports when they choose to live independently in the community.
If Caudill chose to check herself into an institution, her needs
would be met at taxpayer expense. The ongoing institutional bias
in our long-term service system simply cannot be squared with ADA's
emphasis on "equality of opportunity, full participation, independent
living, and economic self-sufficiency."(16)
Two bills currently pending in Congress attempt to expand access
to home- and community-based long-term services and supports.
- The Medicaid Community Attendant Services Act of 1997 (H.R.
2020/MiCASA), introduced by Speaker Newt Gingrich (R-GA), would
amend Title XIX of the Social Security Act (Medicaid) and create
a new and mandatory Medicaid service--Qualified Community-Based
Attendant Services (QHCBS). Under this bill, each state would
be required to develop a long-term care services transition plan,
with major participation by the state Independent Living Council
and the state Developmental Disabilities Council and Council on
Aging, which must have specific action steps and timetables to
increase the proportion of home- and community-based services
provided in the state. Under this bill, funding currently earmarked
for institutional care would be available for people choosing
QHCBS. In addition, $2 billion would be appropriated over six
years to help states transition from institutional to community-based
services.
- The Long Term Care Reform and Deficit Reduction Act (S. 879),
introduced by Senator Russell Feingold (D-WI), would add a new
optional home- and community-based long-term services and support
program funded through a combination of federal and state funds
that is similar to the long-term care provisions of the Administration's
Health Security Act introduced in 1993. Home- and community-based
services would continue to be optional, as they are under current
law in state Medicaid plans. If states opt to offer home- and
community-based services, the Feingold bill allows states to determine
which services they will offer. The Feingold bill contemplates
new federal funding to be phased in over nine years starting in
1999 reaching $5 billion in 2007. This new funding would occur
outside the Medicaid program and be earmarked solely for community-based
long-term supports and services for people of all ages with the
most significant level of impairments, regardless of income or
impairment type.
- NCD urges policy makers to ensure that services and supports
offered under any new or existing federal legislation meet the
needs of all people with disabilities.
- As a follow-up to a meeting between disability community leaders
and President Clinton on September 10, 1997, the President has
asked Robert Williams, deputy assistant secretary, Office of Disability,
Aging and Long-Term Care, Office of Assistant Secretary for Planning
and Evaluation, HHS, to head up a personal assistance working
group for the Administration that will develop proposals for expanding
access to consumer-directed, home- and community-based long-term
supports and services. NCD commends the President for creating
this working group, which has begun meeting under the leadership
of Robert Williams and Sally Richardson, Deputy Administrator
of HCFA, and strongly encourages the Administration to show leadership
in this critical area as it did during health care reform by coming
forward with its own proposal and working with congressional leaders
to address this critical issue.
Health Care
In addition to the provisions in BBA described above preserving
Medicaid coverage for children losing SSI and creating an optional
Medicaid buy-in for workers with disabilities, other incremental
measures have been taken since Achieving Independence was
published that plug some of the gaps in the private and public health
insurance systems for people with disabilities. Also, it is worth
noting that Medicaid was maintained as an entitlement and not block
granted or capped, as some in Congress and the Administration had
originally proposed.
- BBA created a new federal block grant program for the states
called the State Children's Health Insurance Program. This new
program, funded at $24 billion, would expand health services for
children who live in families with incomes below 200 percent of
the federal poverty line in most states. The program, which is
provided for under a new Title XXI of the Social Security Act,
does not require any specific package of benefits for children
participating in the program. States are given flexibility on
whom to cover and what benefits to provide. NCD commends Congress
and the President for this significant new investment in health
outcomes for children from low-income families. NCD is
concerned, however, that the needs of children with disabilities
who may benefit from this new program will not be met if the eligible
population defined at the state level excludes children with disabilities
or if the benefits package defined by particular states does not
include critical services to maximize functioning, such as outpatient
rehabilitation, durable medical equipment, prosthetics, orthotics,
pediatric specialty care, and mental health services. Also, NCD
is concerned that low-income families of children with special
health care needs will be expected to pay more than they can afford
to access the new program. NCD encourages states to use the new
federal funding to invest in a comprehensive affordable statewide
system that seeks to maximize functioning for children with special
health care needs who are not well served by existing systems
and to use the program to expand their existing Medicaid programs
with the comprehensive package of benefits required under the
Early and Periodic Screening, Diagnosis and Treatment program.
- The budget reconciliation law eliminated a Medicaid requirement
for prior institutionalization for certain services under the
Home and Community Based Waiver program. It also included an exemption
from mandatory managed care without a waiver for children with
special needs. This exemption includes children under age 19 who
are eligible for SSI, children with special needs eligible for
Maternal and Child Health block grant services, children eligible
under the Katie Beckett (Tax Equity and Fiscal Responsibility
Act) waiver option; and children receiving foster care or adoption
assistance. Also exempted are qualified Medicare beneficiaries
and American Indians in certain circumstances. NCD supports
these changes.
- BBA also included language requiring HCFA to develop safeguards
to ensure that Medicaid managed care entities meet the needs of
individuals with special needs, including individuals with disabilities.
NCD commends Congress for seeing the need for this language,
and encourages HCFA to act promptly to develop and implement the
required standards, working with the disability community and
other stakeholders in this process.
- Although it made children with special needs exempt from mandatory
managed care, BBA made it easier for states to move other Medicaid
beneficiaries into managed care plans by eliminating the need
for federal waivers. This change lifts the federal oversight
provided by the waiver process and puts adult Medicaid recipients
with disabilities at greater risk of being moved to managed care
arrangements that can threaten their access to appropriate specialists
and services. For example, adults with HIV disease often have
their care managed by a specialist, yet many managed care companies
refuse to allow specialists to serve as care coordinators. Also,
people with rare or unstable medical conditions often have particular
physicians and allied health professionals with whom they have
developed a relationship over many years, and these relationships
are not always respected by managed care companies, which sometimes
require a change in providers to accommodate their network of
preferred providers. Accordingly, the need for HCFA to develop
and implement the new standards for populations with special needs
is particularly important.
- The 104th Congress passed legislation mandating that private
insurance plans not discriminate between mental health and physical
health care in lifetime or annual reimbursement caps. As enacted,
this provision applies only to employers with 50 or more employees,
does not take effect until January 1998, and sunsets in October
2001. Further, the provision does not apply at all if its costs
result in an increase of 1 percent or more in a plan's premiums.
These provisions, though significant, do not amount to parity
for people seeking mental health services, in part because they
do not address the critical issue of forced treatment.
- The 104th Congress also passed legislation improving portability
as people move from job to job or from group to individual coverage.
This legislation generally prohibits insurers from denying coverage
based on preexisting conditions, and it protects small groups
by requiring insurers to provide them with coverage, although
a higher fee may be charged to groups with higher health care
costs. The law covers not just traditional insurance companies
but also companies that self-insure, which cannot be regulated
under state insurance laws. The law also includes a provision
stating that access to insurance cannot be denied solely because
someone has a history of using mental health benefits. Once again,
the health portability legislation takes important steps toward
plugging the holes in the current system, but several significant
holes still remain. For example, the legislation did not attempt
to address affordability of health coverage or require a comprehensive
benefits package that would meet the needs of all people. Also,
perhaps most significantly, millions of people in the United States
continue to have no health insurance coverage, including many
people with disabilities. NCD commends Congress and the President
for these important first steps toward a private health care system
that meets the needs of people with disabilities and encourages
them to go further and fill the remaining holes in our health
care system for people with disabilities and others.
International Issues
ADA continues to serve as model civil rights legislation for countries
throughout the world. Accordingly, there is strong international
interest in how ADA implementation is proceeding. NCD is confident
that there will be great interest in the results of our ADA monitoring
project. In the meantime, three significant developments in the
international arena are worthy of mention.
- On September 12, 1997, the U.S. Agency for International Development
(USAID) issued a policy paper articulating its commitment to pursue
advocacy for, outreach to, and inclusion of people with "physical
and cognitive disabilities," to the maximum extent feasible, in
the design and implementation of USAID programming. The policy
paper includes guidance for making the commitment operational.
The paper outlines the fundamental principles on which the USAID
disability policy is based, including (1) need for a comprehensive
and consistent approach to considering people with disabilities,
being sure to include women and children, within USAID and in
USAID-assisted activities; (2) outreach to and early consultation
with persons with disabilities and the community of organizations
concerned about them as part of ongoing participatory processes;
(3) intent to work as development partners with U.S. and foreign
private voluntary organizations and nongovernmental organizations
committed to persons with disabilities and to facilitate relationships
among these entities; and (4) encouragement of U.S. interagency
collaboration and networking among donors and other diverse entities
concerned about persons with disabilities with a view to increasing
impact and sustaining these efforts. NCD commends USAID for its
leadership in issuing the new policy paper, which can serve as
a model for other agencies throughout the government. NCD encourages
USAID to make a technical amendment to its policy paper to change
references from "physical and cognitive" impairments and disabilities
to "physical and mental" impairments and disabilities, which would
accomplish the agency's stated intention of tracking the definition
of disability in the Rehabilitation Act.
- The Organization of American States (OAS) is currently considering
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 (USOAS) 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 commends the
Department of State, including USOAS, for its efforts to involve
NCD and other disability community stakeholders in reviewing draft
policies.
- On June 15-20, 1997, the International Leadership Forum for
Women with Disabilities was held in Bethesda, Maryland, as a follow
up to the United Nations Fourth World Conference on Women, held
in Beijing in 1995. The Forum, which was attended by more than
500 participants from 80 countries, included sessions and workshops
on exemplary practices and projects in the areas of leadership
development, health services, education, employment, technology,
advocacy and public education, and electronic networking. Secretary
of State Madeleine K. Albright spoke at the Forum, reaffirming
her commitment to increase employment opportunities for people
with disabilities in the Foreign Service and to address access
barriers at U.S. embassies. NCD strongly encourages the Department
of State, working with the Access Board and other stakeholders
in the disability community, to act promptly and in a systematic
manner to address the access barriers at U.S. embassies and other
government-owned buildings abroad.
Physician-Assisted Suicide
Physician-assisted suicide and related issues received significant
judicial, media, and scholarly attention in the past year, much
of which did not acknowledge the disability policy issues raised
by the debate. On March 24, 1997, NCD issued a position paper opposing
assisted suicide. In it, NCD acknowledged the substantial benefits
of permitting physician-assisted suicide, including respect for
individual autonomy, liberty, and the right to make one's own choices
about matters of personal welfare; affording the dignity of control
and choice to a patient who otherwise has little control of her
or his situation; allowing the patient to select the time and circumstances
of death rather than being totally at the mercy of the terminal
medical condition; safeguarding the doctor/patient relationship
in making this final medical decision; giving the patient the option
of dying in an alert condition rather than in a medicated haze during
the last hours of life; and, most important, giving the patient
the ability to avoid severe pain and suffering.
Having acknowledged these benefits, NCD nonetheless found that
the countervailing arguments against permitting physician-assisted
suicide outweighed its benefits. In making this finding, NCD noted
that the benefits of physician-assisted suicide only apply to the
small number of people who actually have an imminently terminal
condition; are in severe, untreatable pain; wish to commit suicide;
and are unable to do so without a doctor's involvement. Moreover,
NCD noted the substantial dangers of permitting physician-assisted
suicide, including the already prevalent pressures on people with
disabilities to choose to end their lives and the insidious appropriation
by others of the right to make that choice for them, compounded
by the growth of managed care and "rationing" of health care services
and health care financing. NCD also noted the societal devaluing
of the lives of people with disabilities, the historical experience
in the Netherlands of coercion and involuntary "euthanasia" for
people with disabilities, the difficulty of crafting adequate procedural
safeguards, which inevitably would place unacceptable control in
the hands of medical and legal "experts," and the many societal
barriers that continue to limit life choices for people with disabilities.
As NCD noted, "[s]ociety should not be ready to give up on the lives
of its citizens with disabilities until it has made real and persistent
efforts to give these citizens a fair and equal chance to achieve
a meaningful life."(17)
On June 26, 1997, the U.S. Supreme Court upheld the constitutionality
of state laws that prohibit physician-assisted suicide. Although
the Court refused to recognize a constitutional right to assistance
in committing suicide, the Court left open the possibility of states
passing laws that make physician-assisted suicide available. More
recently, the Court refused to review an Oregon law that would make
physician-assisted suicide available to residents of that state.
Accordingly, the dangers that physician-assisted suicide poses for
people with disabilities recounted in NCD's position paper continue
to be present, and the Supreme Court decision will likely let the
policy debate play out at the state level. NCD strongly encourages
states and their federal partners to consider the likely impact
on residents with disabilities of any legislative proposals in this
area.
Genetic Discrimination
As the Human Genome Project continues to make remarkable progress
in mapping the human genome, the potential for discrimination based
on genetic information in employment, health care, and other areas
becomes greater. NCD is pleased that Congress and the Administration
are considering legislation that would prohibit discrimination in
employment and health care on the basis of genetic information.
Given that a number of disabilities have genetic links and given
the great potential for discrimination based on access to genetic
information about the existence of a disability or the propensity
to develop a disability, NCD strongly encourages the President to
work with Congress to enact legislation that will restrict access
by employers, insurance carriers, and others to such information
and will outlaw discrimination based on such information.
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 comprehensive 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."
NCD commends the National Park Service, the U.S. Forest Service,
the Bureau of Land Management, the U.S. Fish and Wildlife Service,
the Bureau of Reclamation, and the U.S. Army Corps of Engineers
for recognizing the importance of coordinating their efforts to
ensure access for people with disabilities to this country's rich
wilderness resources.
Currency Accessibility
In 1997, the U.S. Department of Treasury issued a new $50 bill
with features designed to make it accessible to people with low
vision. The size and coloring of the $50 denomination make it considerably
easier for people with partial sight to identify. NCD commends
the Department of Treasury for taking this important first step
toward an accessible U.S. currency. We remain concerned, however,
that the new $50 bill is completely inaccessible for blind people.
Moreover, NCD urges the Department to issue subsequent bills under
its counterfeit reduction initiative that are tactually identifiable
for people who are blind. Such an action would increase the independence
and expand employment options for blind people in this country.
CONCLUSION
The past 18 months have included many significant accomplishments
and some troubling setbacks in public policy as it affects people
with disabilities. Although overall the country continues to move
forward and expand opportunities and inclusion for Americans with
disabilities, 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 truly
to accomplish the vision of ADA and achieve independence, empowerment
and inclusion in all aspects of American society, it is critical
that the current Administration work with leaders in this Congress
to forge a disability agenda that supports and rewards people with
disabilities when they choose to work and pay taxes, and avoids
punishing people with disabilities when they are unable to find
a job.
This disability agenda, which might be framed as an opportunity
agenda for all people, must address the numerous barriers to employment
and self-sufficiency for people with disabilities that have been
identified in this report and in Achieving Independence.
In addressing these barriers, the agenda would include more complete
and timely data about people with disabilities and a need for a
new research agenda grounded in the ADA paradigm; return-to-work
legislation for Social Security disability benefit recipients that
addresses health care, makes work pay, and gives recipients a choice
in vocational rehabilitation and other employment and training services;
an unwavering commitment to accommodate people with disabilities
seeking to leave the welfare and Social Security rolls; renewed
efforts to expand family support for families that have children
with disabilities, including appropriate child care; a reexamination
of the recent cuts in the children's SSI program and immigrant programs
to ensure that federal policy is consistently applied and not moving
backward with respect to this vulnerable population; a concentrated
effort to bring immigrants, minorities, and rural residents with
disabilities into the mainstream of disability policy through targeted
outreach, education, technical assistance, and inclusion; building
on the recent reauthorization of IDEA to maximize outcomes and integration
for students with disabilities, without overlooking the unique issues
facing deaf students, blind students, and minority students, and
without diluting civil rights protections in the name of discipline;
a technology agenda that ensures access to the information superhighway
for all people; a coordinated, aggressive, well-funded ADA enforcement
and implementation strategy that addresses disturbing trends in
the case law and educates underserved groups about their rights
under ADA; a transportation agenda that addresses accessibility,
cost, and enforcement in air travel, over-the-road bus travel, and
all other forms of mass transit; a housing agenda that expands options
for people with disabilities within their budgets and does not force
them to live in group settings to receive services; new long-term
services and supports legislation that shatters the institutional
bias in our publicly administered long-term care programs once and
for all; ongoing attempts to fill the many holes in our health care
system so that people with disabilities are not forced to accept
publicly funded second-rate health care, to enroll in inappropriate
managed care arrangements, or to forego employment to have access
to health coverage at all; an international agenda that empowers
people with disabilities throughout the world and makes ADA's message
global; and a flexible approach to emerging issues such as physician-assisted
suicide, genetic discrimination, wilderness accessibility, and currency
accessibility in a manner that is consistent with the vision of
ADA.
APPENDIX
MISSION OF THE NATIONAL COUNCIL ON DISABILITY
Overview and Purpose
The National Council on Disability (NCD) is an independent federal
agency led by 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, in order 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,
respecting 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, 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 with respect to 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.
- Preparing and submitting to Congress and the President an annual
report containing a summary of the activities and accomplishments
of NCD.
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 current list of
key issues includes improving personal assistance services, promoting
health care reform and Social Security 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 "Can't walk, can't grip, can work," San Diego Union-Tribune,
September 18, 1997.
2 U.S. Census Bureau, Current Population Reports, "Americans
with Disabilities: 1994-95." The Census data are based on the Survey
of Income and Program Participation.
3 See, e.g., Disability Rights Advocates, Inc., Disability
Watch: The Status of People with Disabilities in the United States,
at p. 8 (noting that the vast majority of institutionalized disabled
Americans are elderly).
4 National Council on Disability, Achieving Independence:
The Challenge for the 21st Century (1996) at 30. See also
p. 31 (recommending that questions about disability be adequately
included in the 2000 census) and pp. 67-68 (recommending addition
of people with disabilities as a group to national labor force statistics
reported monthly).
5 National Council on Disability, Removing Barriers
to Work: Action Proposals for the 105th Congress and Beyond,"
September 24, 1997.
6 "An Interim Report on HHS Accomplishments on Behalf
of People with Disabilities," submitted to NCD October 3, 1997 (hereinafter
"HHS Interim Report"), at 5. Many welfare recipients with disabilities
have impairments such as specific learning disabilities, attention
deficit disorder, major depression, and other mental and physical
disabilities that are not always visible and have not been identified
in the education system or other systems. It is worth noting that
women with disabilities are disproportionately represented in the
unidentified disability category. While there is no gender differential
in the prevalence of neurological disabilities, for example, public
education programs are identifying boys with these disabilities
at a rate three times that for girls.
7 "Disabled Children Get a Needed Review," New York
Times, September 13, 1997.
8 Id.
9 "Quick Review Promised for SSI Rules," Washington
Post, September 11, 1997.
10 Social Security Administration, Office of Disability.
11 "Quick Review," supra note 9.
12 Id.
13 The problem with the web browser was subsequently
addressed by Microsoft after the period covered in this report.
14 For a recent analysis of the case law interpreting
the definition of disability in ADA, see Steven S. Locke, The
Incredible Shrinking Protected Class: Redefining the Scope of Disability
Under the Americans with Disabilities Act, 68 Colo. L. Rev.
107 (1997).
15 Runnebaum v. Nations Bank, 7 A.D. Cases 217, 1997
WL 465301 (4th Cir. 1997).
16 ADA Section 2(a)(8).
17 "Assisted Suicide: A Disability Perspective," NCD,
March 24, 1997 (Executive Summary).
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