NATIONAL DISABILITY POLICY: A
PROGRESS REPORT December 2000--December
2001
National Council on Disability
July 26, 2002
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
National Disability Policy: A Progress Report
December 2000--December 2001
This report is also available in alternative formats
and on NCD's award-winning Web site (www.ncd.gov).
Publication date: July 26, 2002
202-272-2004 Voice
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The views contained in the report do not necessarily
represent those of the Administration as this and all NCD documents
are not subject to the A-19 Executive Branch review process.
Letter of Transmittal
July 26, 2002
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 covers the period from December 2000 through
December 2001, the end of the first session of the 107th Congress.
It reviews federal policy activities by issue areas, noting progress
where it has occurred and making further recommendations where necessary
to the executive and legislative branches of the Federal Government.
Disability is not the experience of a minority of
Americans. Rather, it is an experience that will touch most Americans
at some point during their lives. Today, more than 54 million Americans
have disabilities, a full 20 percent of the U.S. population. About
half of these individuals have a severe disability, affecting their
ability to see, hear, walk, or perform other basic functions of
life.
Significant barriers, however, still exist for individuals
with disabilities who try to participate fully in American society.
People with disabilities want to be employed, educated, and active
citizens in the community. Unfortunately, on average, Americans
with disabilities have a lower level of educational attainment and
are poorer and more likely to be unemployed than those without disabilities.
In today's global economy, America must be able to draw on the talents
and creativity of all its citizens.
In your New Freedom Initiative, you laid out a blueprint
to increase investment in and access to assistive technologies and
a high-quality education and to help integrate Americans with disabilities
into the workforce and into community life. This initiative comes
at a time when many disability advocates are expressing concern
about the future of disability policy. NCD will work with your Administration
and Congress to ensure that every individual with a disability has
access to the American dream.
With strong, representative, and experienced leadership
and open, ongoing input from the disability community, we can meet
the challenge to make the most of the opportunities facing us at
the start of your new Administration. NCD has completed over the
past several years civil rights policy evaluations directly related
to the disability policy areas addressed in the New Freedom Initiative.
NCD invites you and your Administration to draw on the research
and studies conducted by our agency for information on how and where
executive agencies can act to the maximum benefit of their consumers.
NCD stands ready to work with you and stakeholders
inside and outside the government to see that the public policy
agenda set out in the attached report, in Achieving Independence,
in a series of civil rights monitoring studies published as NCD
reports, and in the New Freedom Initiative 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.)
National Council on Disability Members and
Staff
Members
Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ed.D., Director of Research
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Allan W. Holland, Chief Financial Officer
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Joan M. Durocher, Esq., Fellow
Acknowledgment
The National Council on Disability wishes to express
its appreciation to Steve Mendelsohn for assisting in the development
of this report.
Contents
PART I
Executive Summary
Introduction
Chapter 1: Disability Statistics and Research
Chapter 2: Civil Rights
Chapter 3: Education
Chapter 4: Health Care
Chapter 5: Long-Term Services and Support
Chapter 6: Issues of Special Concern to Youth
Chapter 7: Employment
Chapter 8: Welfare Reform
Chapter 9: Housing
Chapter 10: Transportation
Chapter 11: Assistive Technology and Telecommunications
Chapter 12: International
Chapter 13: Homeland Security
Endnotes
PART II
Major Activities Summary--Fiscal
Year 2001
Appendix--Mission of the National Council on
Disability
PART I
Executive Summary
Introduction. The National Council
on Disability's (NCD) 2001 annual progress report marks a turning
point in public policy, with the advent of a new national Administration.
Such moments in our history not only offer great hope for innovation
and reform but also require a sense of continuity, necessitating
perspective and awareness of what has come before and a recognition
of the continuity and complexities underlying policy in all spheres.
To help link the past and the future, NCD provides
an overview of some of the major public policy initiatives in disability
during the decade of the 1990s. These initiatives can be grouped
in three areas: civil rights, service delivery programs, and technology.
Although the various works differ in accordance with their goals
and contexts, the body of work constituting the statutory record
of the 1990s reflects an overarching and unifying conceptual framework
that gives the laws much in common.
Among the key features these diverse laws have in
common are the recognition that issues of concern to Americans with
disabilities, such as the design of our public buildings and communications
infrastructure, can no longer be addressed in isolation from the
general society; the fact that consumer participation is a key element
in the effective operation of all programs and laws; the awareness
that advocacy resources and technical assistance are critical to
the success of all initiatives; and the belief, in areas ranging
from employment to education to housing, that society benefits by
the inclusion of Americans with disabilities in the mainstream institutions
of society.
The laws have also recognized that the allocation
of the costs of nondiscrimination and inclusion are often as important
as any assessment of the total amount of such costs. For that reason,
the laws also have in common various mechanisms aimed at ensuring
that the burden of access and equality will not unduly fall on a
narrow range of institutions or entities. Equally, the costs of
policy not only must be reckoned in the sense of what is required
to achieve various goals but also must include a sophisticated awareness
of both the costs of inaction and the indirect benefits of various
measures and strategies.
NCD has played an important, ongoing role in identifying
issues and barriers, bringing key actors from within and without
government together, and providing objective, unbiased data from
which policy can be reliably derived or better understood. This
role is discussed from a historical standpoint and as it relates
to the demands of this new era.
If continuity is important, it must alert us to our
collective failures as well as remind us of our successes. A series
of NCD reports has documented failures in enforcement across a broad
spectrum of programs and laws. Without credible enforcement, even
the best laws become ineffective. Just as we know that laws in other
areas are not self-executing, so must we carry this awareness into
the disability policy arena. With energetic enforcement, the sincere
efforts of most can be honored, the dereliction of the few can be
addressed, and the goals of public policy can be effectively and
consistently advanced.
Census 2000 and Disability Statistics. Problems
continue to be associated with widely used disability employment
and other data, including issues surrounding the collection and
analysis of relevant and reliable statistical data on America's
population with disabilities.
The findings of the 2000 Census, together with those
of other compilations relating to the employment status of Americans
with disabilities, have been severely questioned on methodological
and validity grounds. The accuracy of these data are critically
important in an era of evidence-based policy because misleading
information can lead to misguided or premature public policy decisions.
Federal agencies extensively use and underwrite the
costs of disseminating a great variety of disability data. Whereas
people should be entirely free to use whatever data and data sources
they see fit, public money should not be used to support the dissemination
of suspect findings and conclusions.
Similarly, in other areas of disability research,
new barriers have emerged to the collection and analysis of reliable
data. These barriers range from the new definitions of disability
crafted by the courts under various statutes to the problems associated
with measuring function as it relates to employment, education,
or independent living when assistive technology is taken into account.
The report recommends that the Federal Government
review and rationalize the range of statistical efforts and test
proposed new measurement techniques and research practices to ensure
their reliability before they are put into widespread use.
Civil Rights. A perceived hostility toward
disability on the part of the courts, congressional proposals that
would treat disability civil rights laws differently and more harshly
than any other laws, and other factors have combined to create a
sense of great unease and fear among America's population with disabilities.
In light of persistent under enforcement of civil rights laws and
lax monitoring of the requirements of service programs, the report
examines each of the major areas where erosion in civil rights protections
has occurred or is seriously foreseen.
Major areas addressed and explained are court decisions
dramatically restricting the applicability of the Americans with
Disabilities Act (ADA); lack of coordination among agencies or of
material progress in key enforcement areas identified over recent
years as needing reform; failure to include persons with disabilities
among those protected by hate crimes laws; failure to stem genetic
discrimination by employers and insurers that disproportionately
affects persons with hidden disabilities; the need for continued
outreach to people with disabilities from diverse cultural groups
who face cultural, linguistic, and other barriers to full participation
in society and who interact with the issues posed by societal reactions
to their disabilities; court decisions outside the ADA that adversely
impact access to the courts by persons with disabilities and, in
the aggregate, can be characterized as reflecting a closing of the
courts to individual citizens; and the need for greater outreach
to the disability community by the Department of Justice in formulating
its interventions through amicus curiae briefs in Supreme Court
and other major federal court cases involving the rights and interests
of Americans with disabilities.
Education. As the Individuals with Disabilities
Education Act (IDEA) faces reauthorization, we must carefully assess
the implications of our approach to education for students with
disabilities and sensitively apply the policy initiatives central
to the No Child Left Behind Act (NCLBA)--the reauthorization of
the Elementary and Secondary Education Act. At the same time, the
successes of special education should not be overlooked, and the
widely documented need for more effective monitoring and enforcement
should be borne in mind under any revised framework.
In addition to the issues surrounding implementation
of NCLBA and a review of NCD's comprehensive IDEA assessment study,
NCD specifically deals with the charge of the President's Commission
on Excellence in Special Education; the key issues and controversies
involved in IDEA reauthorization, including student discipline;
minority overrepresentation among students receiving special education
services; parental involvement and due process; use of assistive
technology; universal design and access to mainstream school technology,
instructional materials, and media; disability harassment; full
funding; and accountability of schools for the educational outcomes
of special education students.
Health Care. NCD has a long record of activity,
research, and involvement in the area of health care and access
to medical resources and services. Against this background of interest
and expertise, the current congressional and national debate over
the Patients' Bill of Rights raises important questions for what
inclusion means for people with disabilities in the health care
realm.
In connection with this proposed legislation, the
report identifies issues and offers analysis and recommendations
concerning coverage of all privately insured persons; access to
specialized care; point-of-service options; continuity of care;
standing referrals; timely and accurate information, including accessible
information, regarding details of coverage and available options
for treatment; access to clinical trials and availability of clinical
trials for assistive technology or other nonpharmaceutical interventions
and modalities; grievance procedures; medical necessity determinations;
and mental health parity.
Beyond this proposed patients' rights legislation,
the report deals with the status of efforts to identify and treat
persons with mental health conditions in the criminal defendant
and prison population; the problem of balancing pain-relief promotion
with the avoidance of assisted suicide; the need for reforms in
Medicare and the procedural vehicles available for carrying out
the necessary review of current program rules; and the potential
applicability of telemedicine to persons with disabilities, who
are likely to be among its most frequent users.
Long-Term Services and Supports. Taking the
unprecedented interagency effort culminating in the Department of
Health and Human Service's December 2001 Olmstead implementation
report as its point of departure, NCD reviews the Administration's
continuing support for the Supreme Court's Olmstead decision
and draws out implications; analyzes the major premises of the report
as a basis for clarifying the issues and options it raises; discusses
the economics of Olmstead as these relate to national policy
favoring institutional versus community-based living and care for
all Americans, including those who are elderly and those of a younger
age with disabilities; discusses some of the other, specific programmatic
initiatives addressed in the report and in other expressions of
Administration policy; considers the implications of broad-based
policy changes favoring community-based and in-home services and
care for the private long-term care insurance and other non-Medicaid
recipient populations; and addresses the role of Social Security
Disability Insurance (SSDI) and other programs of particular concern
to people with disabilities in the context of social security reform.
Youth. Although such issues as housing, education,
health care, and even employment are important for everyone, within
each of these areas are some subjects of particular concern and
importance for our youth with disabilities. One key example is school-to-work
transition services, as required by both the federal Rehabilitation
Act and IDEA. Widely recognized to be inadequate, despite notable
successes in certain localities, these services are crucial for
the ability of students with disabilities to enter adult services
and employment after leaving school.
NCD discusses chronic transitioning problems and suggests
several remedial approaches, such as establishing system-to-system
continuity in the availability of assistive technology; cost-shifting
between rehabilitation and education agencies; and the implementation
of joint accountability between the service systems for the success
of transition services and programs.
Employment. As it is for society as a whole,
employment is a cherished goal for most Americans with disabilities,
but one that continues to elude all too many. Implicating the education,
vocational training, health care, and transportation systems as
they do, the barriers to increased employment for people with disabilities
are as complex and multifaceted as those faced in any area of policy,
even as enhanced employment becomes the ever-more central objective
of so much public policy in the disability area.
For this reason, NCD's discussion of this subject
begins with an appraisal of the importance of interagency coordination,
focusing particularly on the potential of the new Office of Disability
Employment Policy to spearhead the necessary effort. Related to
the discussion of statistics, NCD also examines the sources and
role of statistics in the employment policy sector.
Major new initiatives in employment policy are also
dealt with, including issues surrounding the implementation of the
Ticket to Work and Work Incentives Improvement Act; recent federal
hiring initiatives to expand opportunities for persons with psychiatric
disabilities; federal initiatives to ensure the availability of
information about the provision of reasonable accommodations in
governmental employment; and concerns regarding the accessibility
and responsiveness to work-aspirants with disabilities of the resources
and services of one-stop career centers.
From the standpoint of the broadest possible perspective,
two other issues are covered: the proper role of the Federal Government
in ensuring that those operating under federal contracts, grants,
or licenses adhere to principles of nondiscrimination and accessibility;
and the role of employment tax incentives for both workers with
disabilities and businesses in stimulating opportunities and heightening
the prospects for success and job tenure.
Welfare Reform. As Congress and the nation
prepare to fashion this year the reauthorization of the 1996 welfare
reform law, a number of questions about the intersection between
welfare and disability, as well as about the use and coordination
of resources, emerge as needing discussion and answers. To the degree
that states are obliged to meet return-to-work and related targets
under the welfare system currently in effect, NCD notes that effective
identification of recipients with disabilities and coordination
with other programs in meeting their needs can contribute to the
ability of states to meet their employment goals. Such attention
can also facilitate the effective entry into employment of persons
with caretaker responsibilities for children or other family members
with disabilities.
NCD recommends that the new law include clear provisions,
incentives, and mechanisms to assist state welfare reform systems
in reaching out to vocational rehabilitation, developmental disabilities,
and other programs to identify and marshal the resources and expertise
that will contribute to the quality of work with persons with disabilities
among those receiving or at risk of needing welfare supports.
Housing. Housing plays a role in every aspect
of people's lives, from the amount of discretionary money available
for meeting other needs to the time and distance involved in going
to work to the quality and availability of a wide range of community
resources. Affordable housing is in short supply for many Americans,
but for people with disabilities, the scarcity is exacerbated by
inaccessibility and all too often by discrimination.
Based on the definitive findings of its November 2001
report Reconstructing Fair Housing, NCD reviews the status
of fair housing and equal opportunity laws and practices, including
the organization of the fair housing laws' enforcement effort; complaint-handling
and case-processing procedures; funding of fair housing resources;
enforcement of fair housing laws; mediation alternatives to litigation;
disposition of aged cases that have remained unresolved in the enforcement
system for prolonged periods of time; and such related matters as
the role of "visitability" in housing policy and the benefits to
be expected from the Department of Housing and Urban Development's
(HUD) fair housing survey.
The progress report then addresses related issues,
such as means for increasing the supply of affordable and accessible
housing; expanding the use of housing vouchers; and stimulating
home ownership, including proposals to galvanize market forces on
behalf of accessible design; and providing incentives for the availability
of mortgage financing for persons with disabilities.
Transportation. For many Americans with disabilities
who cannot drive or who, if they could drive, do not have the resources
for the adaptive driving controls, lifts, telescopic systems, or
other assistive technology that may be necessary, accessible transportation
represents one of the chief barriers to participation in economic
and community life.
Air travel presents its own set of vexing issues.
Implementation of the Air Carrier Access Act has long involved a
delicate balancing of nondiscrimination and security concerns. In
the wake of the tragedy wrought by terrorism in September 2001,
implementation of this law has become all the more difficult and,
at the same time, more and more important.
NCD describes the issues that have emerged and the
problems reported around the country by air travelers with disabilities,
many of whom have been inconvenienced and some endangered by misapprehensions
and suspicions on the part of security screening personnel that
appear to have little to do with the imperatives of security. NCD
recounts these concerns, based on the reports reaching it, and makes
proposals for additional measures on the part of the Department
of Transportation (DOT) to ensure that the ability of Americans
with disabilities to travel by air will not be unduly restricted.
Although agreements and requirements have been set
in place for establishing timetables and performance standards for
the implementation of accessibility for travelers with disabilities
on intercity buses, grounds exist for concern regarding the speed,
adequacy, and universality of compliance. NCD discusses these concerns
and makes recommendations for the follow-up and monitoring necessary
to make certain that the legal and societal expectations in this
area are met.
NCD also makes recommendations for improved collaboration
between the Department of Justice (DOJ) and the DOT in the implementation
and enforcement of civil rights laws bearing on transportation.
NCD's major report on the ADA, Promises to Keep, disclosed
significant shortcomings in the ability of the DOJ and DOT to work
together in enforcement, including the DOT's referral of cases to
the DOJ when other methods for solving problems proved unavailing.
As in other areas of the law, enhanced coordination plays a large
role in enforcement, and methods for increasing this coordination
are at hand.
The President's New Freedom Initiative discusses some
of the transportation issues affecting people with disabilities
and was followed up by budget recommendations for a variety of pilot
demonstration and competitive programs aimed at improving transportation
access and options for people with disabilities. Regrettably, some
of these initiatives did not meet with initial approval by Congress.
NCD recommends that Congress reconsider its decisions in this area
and delineate a range of transportation strategies and modalities
that these innovative programs ideally ought to include.
Although we travel today much as we did 50 years ago,
research and innovation in transportation are emerging as important
elements of our future. Innovative personal transportation vehicles
are being introduced and will come into greater use with time, but
by no means is it certain that these innovations will prove as meaningful
to people with disabilities as they could. To maximize their relevance
to all Americans, NCD makes recommendation for the testing and evaluation
of these new devices and designs by and with people with disabilities
so the developers can be informed, at a time when modifications
in the service of accessibility should still be possible, of the
extent to which these devices currently and prospectively can meet
the needs of persons with disabilities.
Paratransit remains a concern for many of its users,
according to anecdotal reports coming in from around the country.
NCD recounts the most frequently heard of these complaints and problems
and makes suggestions for how these services can be monitored and
improved.
Technology and Telecommunications. Giving birth
to what we call the information society, the so-called technological
revolution has changed our lives more dramatically and irrevocably
than almost any other force or set of developments. Whereas the
general assumption is that this is a democratic revolution with
benefits and opportunities for all, for many people with disabilities
some new technologies are as much or more a barrier to than a source
of access and inclusion. The cellular telephone is a great boon
to many, but for people who use hearing aids, problems of incompatibility
have made cell phones largely inaccessible and unusable. The graphical
user interface has vastly enhanced access to high-speed data and
pictures, but if Web sites are not designed with persons who use
speech access in mind, these ubiquitous technologies become impenetrable
walls blocking access to the wealth of information and opportunity
the Web conveys.
Because the implementation of Section 508 of the Rehabilitation
Act in mid-2001 was a watershed for assistive and accessible technology,
NCD reviews the experience of operating under this statute thus
far and discusses the issues that have emerged in the operation
of the law to date. NCD makes proposals for oversight, technical
assistance, and outreach and discusses the applicability of the
law to telecommuting by federal employees.
Distance learning has made the benefits of education
and training available to many people who could not otherwise obtain
them. But again, these benefits may prove illusory to computer users
with disabilities unless accessibility is taken into account in
the design of the software and course materials. Based on the work
of a national commission, NCD discusses the issues involved and
makes continuing recommendations designed to ensure that no one
is excluded from the promise of this new modality.
The so-called e-rate, providing grants and subsidies
for Internet access to schools and libraries, is one of the most
important innovations of the Telecommunications Act of 1996. But
those entities receiving such subsidies or cash grants have not
been required to make their resources accessible to students or
library patrons with disabilities. NCD reviews the history of efforts
to correct this and calls on the Federal Communications Commission
(FCC) to propose reforms.
Another key provision of the Telecommunications Act
is Section 255, which requires telecommunications equipment and
services to be accessible to individuals with disabilities where
readily achievable. Based on research and experience under the law,
NCD identifies a number of barriers to its effectiveness and recommends
reforms in such areas as enforcement and the apparent distinction
the law makes between voice communication, which is covered by the
law, and the communication of data or pictures, which appears not
to be covered by it and hence is subject to no accessibility requirements.
NCD offers recommendations for studying and remedying this anomaly.
A wide variety of activities are encompassed under
the concept of e-government. NCD discusses the implications, achievements,
and management of the variety of measures and strategies involved
as they relate to access to governmental information and programs
by persons with disabilities.
Recent developments in copyright law may bring intellectual
property and disability access rights into collision in cyberspace.
NCD describes the sources and implications of this conflict and
requests clarification of the law from the appropriate administrative
agencies as a first step in determining whether further legislation
is required.
Among the many agencies and actions praised in the
report, NCD takes note of the FCC's opening of a proceeding aimed
at reviewing the temporary statutory exemption of wireless phones
from coverage under the Hearing Aid Compatibility Act of 1988. NCD
expresses confidence that this will result in the exercise by the
FCC of its statutory discretion in favor of requiring that such
phones be brought under the coverage of the law.
With the Assistive Technology Act of 1998 scheduled
to sunset on September 30, 2002, NCD reviews the unique role played
by the programs operating under this small but highly instrumental
law, notes the needs that would go unmet if the program were to
be abolished, and recommends reauthorization of the law.
International. With full recognition of the
many critical issues competing for the attention of American foreign
policymakers and with full regard for the balancing that must underlie
so many foreign policy decisions and initiatives, NCD reiterates
recommendations for the incorporation of disability rights, alongside
women's rights and respect for diversity, in America's foreign policy
commitments. In particular, NCD offers recommendations to support
inclusion of Section 504-like antidiscrimination provisions.
NCD also discusses and will participate in development
of a United Nations (UN) convention on disability and recounts awards
made at 2001's commemoration of the International Day of Disabled
Persons, praising the awardees and expressing confidence that the
new Administration will produce its own generation of honorees.
Homeland Security. Sadly, no discussion of
public issues can be complete today without a recognition of the
imperatives of security. Based on reports and concerns expressed
from around the country, NCD expresses a number of concerns regarding
the ability of people with disabilities to obtain key security information
or to participate fully in community responses to emergency situations.
For the most part, these dangers can be avoided by simple planning,
but addressing them should be part of the overall emergency preparedness
planning process.
Introduction
The advent of a new national administration is an
opportune time for looking forward, but new approaches and innovative
policies are not created in a vacuum. For the sake of the lessons
learned and to understand the historical and programmatic context
in which to make new policy initiatives or corrective systemwide
decisions, looking forward must include some looking back. Only
with perspective on what has been accomplished as well as what has
not been achieved can we begin the process of building consensus
around what remains to be done.
An enormous amount of activity, and an impressive
legacy of achievement in enhancing equality and opportunity for
Americans with disabilities, constitute the data from which we derive
both perspective and prospects. The past decade has been a period
of remarkable accomplishment and energy in the articulation and
expansion of civil rights, employment and educational opportunity,
technology access, and, perhaps most of all, attitudinal change
around disability in our society.
In concert and cooperation with other federal agencies
and partners in the nonprofit and private sectors and with the commitment
and participation of individuals and organizations in the disability
community, the National Council on Disability (NCD) is proud to
have played a role in the development and growth of a bipartisan
consensus for opportunity and inclusion. In reports, recommendations,
and performance reviews, NCD has helped to frame the debate, made
detailed recommendations for change, and monitored the efficacy
and enforcement of a variety of programs and laws. NCD has sought
to serve as a catalyst to progress, a bridge builder among sectors
and stakeholders, and a source of reliable information and tempered
judgment in the identification of barriers and in defining the form
necessary changes should take.1
What has characterized the work of the 1990s? Foremost
in the record of the past decade are major legislative achievements
in several areas. Principal among these areas are civil rights,
service delivery, and access to technology. Overarching and unifying
this legislative record are two dominant and recurring themes: (1)
people with disabilities deserve the same opportunities in society
as everyone else, and (2) decisions society makes about broad issues
of policy, ranging from health care, housing, and education to telecommunications
and transportation, inevitably affect people with disabilities just
as much as they do everyone else. People with disabilities must
be involved in leadership roles in policymaking and implementation
processes.
CIVIL RIGHTS
Symbolically, the decade began in 1990 with the enactment
of the Americans with Disabilities Act (ADA),2
which has often been referred to as the landmark civil rights statute
for people with disabilities. Dealing with employment,3
access to state and local government services,4
and access to public accommodations,5
the ADA barred discrimination on the basis of disability and established
the obligation of mainstream public and private institutions to
reasonably accommodate persons with disabilities.
While controversy surrounds some aspects of ADA implementation
and enforcement, few would dispute that the law has had a profound
effect, both in terms of creating opportunities to learn, work,
and participate in society for many people with disabilities and
as a spur to institutional and attitudinal changes in all sectors
of our society. The wheelchair lift on city buses or the braille
signage in the elevators of major buildings testify not merely to
our creation of a more accessible environment but more broadly to
the changes in attitudes and awareness that have marked this era.
As our awareness of people with disabilities has grown,
so has our understanding of the range of situations in which their
interests, opportunities, and civil rights hang in the balance.
Through the development of our awareness and because of advances
in technology, the meaning of access has come to be redefined. This
redefinition has been embodied in a number of important new laws,
including Section 255 of the Telecommunications Act of 19966
(requiring telephone equipment and services to be accessible to
people with disabilities) and Section 508 of the Workforce Investment
Act of 19987 (mandating that electronic
and information technology bought and used by the Federal Government
for use by federal employees or members of the public be accessible
on terms of equality to all persons, irrespective of disability).
These and other civil rights statutes of the decade
have many features in common, but their chief unifying element lies
in the recognition of the indispensability of what is best called
accessible or universal design. This means that these statutes recognize
the impossibility of fully integrating people with disabilities
into mainstream society without the buildings, facilities, communications
infrastructures, and institutional practices and policies of a variety
of entities being designed and implemented with all potential participants
and users in mind. Thus, although once it may have been appropriate
and sufficient to create jobs in sheltered, segregated settings
for people with disabilities, today we understand that only the
mainstream economy can provide the resources and rewards necessary
to create and sustain the needed range of opportunities and that
the competitive economy is where all willing and able workers should
be employed. Although formerly we created overly restrictive instructional
settings for children with disabilities, now we know that mainstream,
integrated settings are the educational venue of choice for a majority
of our children. And although once we devised purpose-built, "dedicated"
devices--ranging from braille typewriters to hearing aids--to accommodate
the communication needs of persons with disabilities, now our laws
have come to recognize that participation in the communications
environment of today cannot be achieved or preserved by these approaches
alone but requires that the entire information infrastructure be
designed and deployed with accessibility and usability in mind.
In many ways, the World Wide Web is a metaphor for
the 1990s. As such, it illustrates the need for accessible design
of mainstream environments if assistive technology (AT) is going
to be effective in securing access to the Internet for people with
disabilities. The guidelines implementing Section 508 therefore
contain detailed information on the functional requirements governmental
Web sites must meet in order to be deemed accessible. A number of
prestigious private sector organizations have also provided accessibility
guidelines8 and accessibility assessment
tools.9 The Web brings a world of
information onto a computer and has enriched the lives of many with
disabilities. Yet, technology creates challenges of its own. For
example, the brilliant graphics that add life to many Web pages
can make it difficult for a person with visual impairments to get
the information he or she needs from a Web site. Now, through
application of Section 508 accessibility standards, federal agencies
must include descriptive text with Web page images. As another example,
the captioned video Web casting that brings live events to a desktop
computer can make it possible for a person who is deaf to follow
the proceedings.
Even in this time of unprecedented national crisis
and peril, our commitment to the maintenance of moral as well as
practical balance can be glimpsed in the issuance of a fact sheet
by the Federal Aviation Administration (FAA)10
providing guidance on application of the Air Carrier Access Act
(ACAA) (which provides for nondiscrimination against persons with
disabilities in air travel and in airport services and practices)
to our new airport security imperatives. The fact sheet reinforces
the continued applicability of the ACAA, while making clear how
its application is necessarily conditioned by the need for dramatically
heightened air travel security under current world conditions.
Yet another archetypal statute of the 1990s demonstrates
the evolution in our notions of what equal access means and our
parallel recognition of the role of technology in bringing this
equality of access about. In 1990 Congress enacted the Television
Decoder Circuitry Act,11 which required
virtually all TVS sold in America to be equipped with a closed-caption
decoder chip. This chip ensures that all TV watchers can access
closed captioning, whether they are deaf or not, and that they can
do so without the necessity of spending several hundred dollars
to buy and install a separate decoder box. The Decoder Act created
a new market for captions, as anyone who has ever attempted to watch
TV in a crowded sports bar or noisy airport well knows. It has probably
also saved more than one relationship by allowing the partner who
likes to watch TV late into the night do so without disturbing the
sleep of the partner who hates noise.
By itself, the Decoder Act could not create or guarantee
the existence of captioned content. For that, the law had to go
further, requiring (as the Federal Communications Commission [FCC]
did under the Telecommunications Act of 1996)12
that major TV networks provide specified amounts of captioned programming.
In our nation's heightened commitment to technology
as a tool for increasing employment and enhancing the productivity
of our economy, the role of assistive technology as a means for
increasing employment opportunities for persons with disabilities
has not been overlooked. Most recently, this commitment has been
taken up in President Bush's New Freedom Initiative (NFI).13
Measures aimed at ensuring the accessibility of mainstream technology
to people with disabilities and measures for ensuring the compatibility
of mainstream with assistive technology will remain indispensable
components of our strategy.
Likewise, in areas where technology does not necessarily
mediate access and participation, our approach to the articulation
and enforcement of civil rights has partaken of the same values.
For example, in housing, a slowly evolving thrust of policy has
been in the direction of making our nation's overall housing stock
accessible to the maximum extent possible. So also in long-term
services, our growing commitment to community living and deinstitutionalization
for all has extended to older Americans and Americans with disabilities
alike.
Everywhere then, in sphere after sphere, the recognition
has taken hold that Americans with disabilities have the right to
equal access and full participation and that the design of programs,
facilities, and systems must take the rights, needs, and legitimate
aspirations of these Americans into account.
SOCIAL LEGISLATION AND HUMAN SERVICE SYSTEMS
Through federal-state partnerships, our nation operates
a number of service systems designed to provide educational and
vocational rehabilitation (VR) and other services to people with
disabilities. Based on the recognition that people with disabilities
need interventions and service inputs that people without disabilities
do not need but that have not historically been provided within
the general labor market and public educational program frameworks,
these programs can perhaps best and most generally be described
as intended to create a level playing field for Americans with disabilities.
These programs have been influenced in fundamental ways also by
the values of integration and equality that have come to the fore
in the past decade. The Individuals with Disabilities Education
Act (IDEA), as substantially revised in 1997,14
most graphically demonstrates this philosophy through its commitment
to mainstream education in the least restrictive environment and
in its procedural and substantive provisions regarding the role
of parents in the identification of needs and in the delivery of
key special education and related services.
From their beginnings to the present day, major service
programs--including developmental disabilities services,15
Medicaid,16 special education under
IDEA, and VR17--have contained civil
rights protections for those receiving services. These provisions
have been strengthened and clarified throughout the 1990s. Specific
provisions embodying our commitment to civil rights in these service
programs have included appeal and other due process procedures for
impartial review of agency or program decisions; requirements that
individualized case services be provided pursuant to plans of service,
in the nature of contracts jointly developed and agreed to by the
service-provider agency and the individual or family receiving services;
requirements that key program information be effectively communicated
to the service recipient, including in alternative formats where
necessary; and requirements for when and how the need for AT must
be taken into account in the eligibility-determination, needs-assessment,
and service-planning phases of involvement.
CONSUMER PARTICIPATION
As these due process, informed consent, and related
procedural requirements indicate, consumer involvement, based on
notions of empowerment and self-determination, has also been a key
feature of statutes adopted or substantially amended during the
1990s. These principles are also evident in the overall structure
and governance of these programs (e.g., the establishment of rehabilitation
advisory committees, state independent living councils, state developmental
disabilities planning councils, and similar entities) to guide state
and local agencies in the administration of the programs. Additionally,
on the program-planning and regulatory-development levels, the commitment
is evident in the methods adopted by such federal agencies as the
Access Board and the FCC for developing guidelines to implement
the requirements of Section 255 of the Telecommunications Act and
Section 508 of the Workforce Investment Act. On both occasions,
a government-industry-consumer committee was created (i.e., the
Telecommunications Access Advisory Committee [TAAC] in the one case,
the Electronic and Information Technology Access Advisory Committee
[EITAAC] in the other).
ADVOCACY AND SYSTEMS CHANGE
Recognizing that the direct effects of many programs
and expenditures can be magnified by long-term systems-change, many
of the legislative enactments of the 1990s have included this concept
among the goals and resources they provide. Illustrative of this
feature of contemporary policy are the systems-change strategies
and options contained in the Assistive Technology Act of 199818
(formerly the Technology-related Assistance for Individuals with
Disabilities Act [the Tech Act]) Amendments of 1994.19
State-based projects funded under Title I of the Act have been given
the task of obtaining a greater visibility for, and focus on, AT
in the work of a variety of agencies and programs in their states.
Systems-change, often expressed in terms of removal
of barriers to employment, to education, to accessing other services,
or to the acquisition of AT, is also a prominent feature of the
Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA),20
which endeavors to reduce key work disincentives in the Social Security
Disability Insurance (SSDI) and the Supplemental Security Income
(SSI) programs. TWWIIA is aimed at changing the health insurance
system. Because recipients of benefits under these programs typically
become ineligible for cash benefits after entering or returning
to work, the linkage between cash benefits and Medicaid or Medicare
health insurance coverage under these programs has often left those
who return to work uninsured when, as is all too frequently the
case, they cannot obtain adequate health coverage through their
employers. To help remedy this serious disincentive, TWWIIA extends
to a total of about eight years the time during which Medicare recipients
can continue to be covered under this insurance program and broadens
the options available to the states for changing their Medicaid
systems by allowing TWWIIA work-returnees to retain health insurance
benefits under this program as well.
Most recently, the Bush Administration, although not
embracing traditional systems-change terminology, has undertaken
a multiagency study of a variety of barriers to access and participation
in the programs operated by and in the laws governing more than
a half dozen major federal agencies. This self-evaluation effort,
undertaken as part of the Administration's Olmstead initiative
and conducted pursuant to an Executive Order issued in June 2001,21
resulted in the preparation of a preliminary report and findings
by the Department of Health and Human Services (HHS) on December
26, 2001.22
Closely related to systems-change is advocacy. Legislation
of the past decade often has provided advocacy resources for use
both on behalf of and by individuals and for use in bringing about
broad-based legal or institutional reform. Thus, such statutes as
IDEA include technical assistance resources for training parents
in understanding the special education system and in fully benefiting
from the rights and services the law offers. Technical assistance
to people with disabilities, governmental entities, and business
is also a key component of the ADA and represents a significant
element of the Department of Justice's (DOJ's) implementation of
that statute.
Advocacy assistance has not been confined to education
and training or to the provision of information about the law; it
has also included creation of individualized legal advice and assistance
resources, mainly through the protection and advocacy (P&A)
system, to assist individuals not only in understanding but also
in securing their rights. Such resources exist in the VR system,
in the developmental disabilities program, and under the TWWIIA.
RESEARCH
Recognizing the technological, legal, economic, and
social complexities associated with many of the issues faced by
Americans with disabilities, Congresses and Administrations of both
parties have placed a high priority on research. Conducted mainly
through the National Institute on Disability and Rehabilitation
Research (NIDRR)--also through a number of other agencies and programs
under the auspices of agencies ranging from the Department of Commerce,
the Department of Veterans Affairs, and the National Science Foundation--this
research effort has featured the creation and support of a number
of specialized rehabilitation engineering research centers (RERC)
and rehabilitation research and training centers (RRTC). These include
centers devoted to specific kinds of technology (e.g., telecommunications
access, augmentative communications, or wheeled mobility) and centers
concerned with specific issues or groups (e.g., older persons or
children or technology transfer).
THE NATIONAL COUNCIL ON DISABILITY
NCD has been an active partner and catalyst for change
in the public and private sectors over the past years, from its
role in conceptualizing and building consensus and momentum around
the passage of the ADA to its Tech Watch and other subject-specific
watch committees that seek to identify access problems before they
become acute and reach out to government and the private sector
in an effort to foster timely dialog aimed at resolving problems
to its recent work in developing consensus recommendations around
education program monitoring23 and
description and elimination of the discrimination faced by persons
with mental illness.24
As an oversight agency without legal power to direct
the actions of others, NCD's impact stems from the cogency of its
arguments and the depth of its commitment. Most recently, NCD has
published a series of five civil rights monitoring reports addressing
in detail the implementation of the ADA, IDEA, the Air Carrier Access
Act, the Fair Housing Amendments Act, and Section 508 of the Rehabilitation
Act.25 Growing out of findings and
recommendations from its 1996 disability summit,26
these reports have cataloged impressive achievements in the protection
of civil rights, but, as will be discussed, they have also uncovered
serious and recurrent problems.
ENFORCEMENT
Taken individually and as a whole, these reports show
that enforcement of disability civil rights statutes and of civil
rights provisions of the laws creating service programs has fallen
far short of what is minimally necessary to make these laws effective.
Whereas the specifics differ from statute to statute and from enforcement
agency to enforcement agency, some of the chronic problems disclosed
are lack of resources devoted to enforcement; failure of agency
leadership to identify enforcement as a high priority; lack of clear
enforcement goals or of accountability for failure to meet such
goals as do exist; absence of pattern and practices reviews by oversight
agencies; poor coordination between and among agencies with overlapping
or dual jurisdiction; lengthy backlogs and delays in civil rights
complaint processing; failure to give the disability community reason
to believe that consistent and meaningful redress for real grievances
is available under law; and inconsistent involvement by people with
disabilities in articulating priorities and providing advice on
implementation.
NCD believes that without credible sanctions, achievement
of progress in civil rights under law becomes all the more slow
and difficult. As detailed later in this report, the stakes on effective
federal enforcement have grown higher in the past year because a
series of U.S. Supreme Court decisions has significantly narrowed
the opportunities available for individuals with disabilities to
pursue their rights by private lawsuits. These decisions include
limiting the range of people who meet the definition of "qualified
individual with a disability" for purposes of coverage under the
employment discrimination provisions of the law; barring many suits
by individuals against states for violation of most disability civil
rights laws; and restricting the availability of fees to attorneys
who represent individuals with disabilities in many civil rights
settings.
THE NEW FREEDOM INITIATIVE
Another development in disability policy during the
past year was the issuance in February of President Bush's New Freedom
Initiative (NFI), reflecting the president's support for equality
of opportunity and full participation in society for Americans with
disabilities. The NFI includes several innovative approaches to
the achievement of these goals. NCD believes that in the years ahead,
through refinement and implementation, whether dealing with existing
laws or with new legislative proposals, enforcement will remain
key to achieving NFI's objectives and outcomes.
In charting new directions and seeking new ways to
harness the energies and values of our society, the Administration
and Congress can make all our laws meaningful by enforcing them
with fairness and vigor, thereby bringing closer the day when not
merely the laws but the values they enshrine become axiomatic in
our daily lives and shared experience.
CONCLUSION
In the pages that follow, NCD continues its annual
practice of reviewing policy developments from the preceding year
and offering constructive, forward-looking recommendations in areas
of greatest concern. NCD comes to its task this year with a sober
awareness of the many new complexities, issues, demands, and preoccupations
that lawmakers and members of the executive branch face. It does
so also with the realization that the new policy initiatives and
programmatic directions charted by the Administration and Congress
will have profound and irreversible effects on the lives of all
our citizens for many years to come.
In pursuing these new directions, we know society
can no longer afford to consider so-called "disability issues" in
isolation from the broader dimensions of policy and practice. Whether
involving education, employment, health, or technology, the decisions
we make about these subjects for the mainstream will affect all
of us and cannot be made without full awareness of our indissolubility
and oneness as a nation. Nor can decisions about disability policy
be made in a vacuum or on a clean slate. The context for these decisions
and the options available to us are defined by what has gone before,
and only through careful attention to the strengths and weaknesses
of that record can we hope to build on our successes, avoid repetition
of failures, and escape confusion and chaos. With attention to the
past and confidence in the future, the potential of our values,
our resources, our technology, and certainly our people is unlimited.
Chapter 1
Disability Statistics and Research
1. CENSUS 2000
NCD's 1999-2000 progress report expressed and documented
grave concerns over the accuracy and reliability of widely disseminated
information about employment rates among people with disabilities.27
Our concern was that data developed from the latest Current Population
Survey (CPS) questionnaire could lead to ineffective or even dangerous
public policy decisions. The concern was based on a federal consensus
that certain CPS items are not adequately designed to elicit accurate
and reliable information from people with disabilities. So, recognizing
the problems associated with the use of CPS data to assess employment
rates, the Presidential Task Force on Employment of Adults with
Disabilities (PTFEAD) was tasked to develop more accurate and reliable
methods for determining the employment status of people with disabilities.
This work is expected to be completed by July 2002--PTFEAD's sunset
date--and is being conducted through the Bureau of Labor Statistics.
But even as recognition of the deficits in our current
data is confirmed by further research,28
repetition and dissemination of these data continue, much of that
dissemination carried out with federal support. The danger of the
situation is not merely in the proliferation of questionable findings,
but in the effect of those findings on policy. For example, based
in part on the conclusion that employment rates among people with
disabilities have decreased during the 1990s, as the CPS data suggest,
some researchers have inferred that the ADA, enacted into law in
1990, must be irrelevant or even a hindrance to the employment of
Americans with disabilities.
As Congress and the courts grapple with key employment
policy and civil rights issues, our deliberations must be guided
by accurate and timely information. Whatever one believes about
the wisdom of the ADA, the reliability of information is indispensable
in evaluating its effects.
The Federal Government should not encourage or support
the dissemination of employment data until a methodology for assessing
employment rates among people with disabilities that is acceptable
to leading researchers and demographers in the field and credible
to persons with disabilities can be developed. This methodology,
including proposed questionnaires or other data collection instruments,
should then be validated through field testing before being put
into widespread use.
Perhaps some researchers have embraced the CPS data
and have been prepared to draw conclusions from it because it filled
a vacuum. In the absence of other, more widely accepted, data and
given the need for policy inputs, use of these data was convenient.
But now, with the possibilities of a reliable methodology close
at hand and with the Bureau of Labor Statistics findings expected
soon, moving to the next stage of public policy development in this
area should be possible and relying on questionable data simply
because we have nothing better to fill the vacuum should no longer
be necessary.
The issue here is not federal censorship but sponsorship.
Although people have every right to use whatever data sources they
choose, the government has an obligation to ensure that the information
dissemination it supports, and the policy inputs it thereby generates,
are as reliable as possible. To that end, when the Bureau of Labor
Statistics offers a new methodology for the collection of employment
data, NIDRR should convene a panel of demographers, labor economists,
other appropriate researchers and policymakers, along with persons
with disabilities, to review the proposed methodology for accuracy
and reliability. NIDRR should also work closely with the Census
Bureau, the Department of Labor's Office of Disability Employment
Policy, and such other agencies as may be appropriate to carry out
the field testing of all instruments suggested above.
A moratorium on federal support for the dissemination
or federally funded use of unreliable disability employment data
may admittedly cause some problems, but with better data collection
techniques imminent, such inconveniences are greatly outweighed
by the harm that results from the continued infusion of erroneous
information into the public policy pipeline.
2. RESEARCH
NCD continues to urge a broad review of all disability
statistics and data collection strategies and of related disability
research priorities and resources. Today, with evidence-based policymaking
becoming progressively more central to governmental decisionmaking,
reliable and accurate statistical information and research data
are more important than ever in a wide range of policy contexts.
As the need for accurate and timely data grows, the
complexities associated with collecting and analyzing it are also
mounting. Even the most basic information, such as how many Americans
there are with disabilities, has become steadily more difficult
to collect or interpret. Four reasons for this difficulty exist.
First, various statutes define disability differently. Given the
differing purposes of various statutes, their yielding divergent
estimates of the number of Americans with disabilities is not surprising.
The question whether disability is ultimately a functional,
a social, or a legal concept is beyond the scope of this report,
but from all these standpoints, the differing definitions and varying
purposes underlying various statutes and programs enormously complicate
the research, data collection, and policymaking processes. For example,
the criteria by which a person meets the definition of disability
under the ADA for purposes of protection from employment discrimination
or the standards determining eligibility under the Social Security
Act for SSDI or the test for whether someone can claim the impairment-related
work expenses tax deduction are all quite different. Our notions
of the size and the needs of the disability population will be greatly
influenced by which of these definitions and by which functional
measures we use.
A second and related reason why valid and reliable
disability statistics and research findings are more difficult to
collect is that even given the same statutory definition of disability,
different agencies collect data in very different ways. The CPS
illustrates this point. Given the same informational objective,
and with the same statutes borne in mind, the Census Bureau has
modified its questions in the 2000 census, and different formulations
of the questions will necessarily bring different results. Any forthcoming
new definition of disability, work-ability, or similar concepts
will of course initially contribute to this problem by creating
yet another database, but, in the long run, introduction of viable
definitions of such terms will offer the opportunity for creation
of baseline data that, coupled with the use of standardized techniques
of administration, will yield truly comparable findings over time.
The third reason for difficulties arises from a very
positive source, namely, the increasing role of assistive technology
in the lives of Americans with disabilities. Because of technology,
traditional definitions of when and whether a major life activity
or function is "substantially limited" have become far more difficult
to determine and far less universal. For example, impairments of
mobility (often measured by the ability to move certain distances
independently) or impairments of vision (conventionally assessed
by ability to read standard print) are today, thanks to technology,
not nearly so easy to assess as once they were. Today, the individual
who cannot walk may still be able to get around with the assistance
of a mobility device, and the individual who cannot see the newspaper
may nevertheless be able to read it through the use of optical scanners.
When asked if they are limited in the major life functions of reading
or moving around, do the users of such technology answer in the
affirmative? Likewise, if people whose use of technology allows
them to work are asked whether they have a work disability, what
will they say, and what should they say? Similarly, how many people
who sincerely and reluctantly believe themselves unable to work
by reason of a disability could in fact do so if they had access
to appropriate technology or more accessible work environments?
What answer should these people give, and what answer do they give?
Does their legal status (that is, whether they meet the legal test
for disability), their functional limitation, or their lack of access
to appropriate technology and properly designed environments account
for their lack of work?
The fourth and final reason for difficulty in the
collection of valid and reliable employment or other data about
Americans with disabilities arises from a series of Supreme Court
decisions over the past three years that raise the potential for
dramatically narrowing the legal standards for who is a person with
a disability. These decisions, discussed later in this report, essentially
hold that in determining whether someone qualifies as an individual
with a disability so as to be covered by Title I (employment) of
the ADA, certain mitigating measures, including at least medications
and eyeglasses, must be taken into account. Moreover, in both the
employment and public accommodations contexts, the Court has made
clear that this determination must be made on an individual, case-by-case
basis.
These decisions inordinately complicate any assessment
of who the law considers to be a person with a disability and how
Congress should define those whose lives legislation is designed
to affect. But from the research standpoint, these decisions also
play havoc with the questionnaires and other research techniques
and the self-reporting data-collection strategies we use.
For all these reasons, the time is right and the need
urgent for a comprehensive reassessment of all disability statistics
and all data-gathering techniques. Under the authority of Congress,
the Interagency Committee on Statistical Policy, in conjunction
with NIDRR and NCD, should undertake this coordinated, comprehensive,
high-level review.
Chapter 2
Civil Rights
1. THE ADA
a. CONTINUING ATTACKS
In July 2001, celebrations around the country were
held to mark the 11th anniversary of the ADA. These celebrations,
which have become an annual occasion for assessing progress and
identifying barriers, hailed the many gains for people with disabilities
over the past decade. But although proudly and gratefully recalling
the many gains that have been made under the ADA, these annual events
also provide an occasion for facing sober realities and for confronting
the existence of many remaining, and some new, barriers.
This year, ominous new barriers were a topic of intense
attention and grave concern. Efforts in Congress, such as the proposed
ADA Notification Act,29 would require
individuals with disabilities seeking to file suit against "public
accommodations" or "commercial facilities" under Title III of the
ADA to give 90 days advance notice of their intention to do so.
This requirement is not imposed on any other litigants seeking to
avail themselves of protections or rights under federal law.
As discussed in last year's NCD progress report,30
such proposals as the ADA Notification Act continue to sow fear
among Americans with disabilities and to consume the time and energy
of many advocates. To help allay deep-seated community concerns,
NCD recommends that the Administration and Congress put on record
its unequivocal opposition to any weakening amendments to the ADA,
especially amendments that treat the ADA in particular or civil
rights laws in general in isolation from the rest of civil legislation
in our nation.
b. OTHER THREATS
Other new and disheartening threats to the ADA were
also on the minds of this year's celebrants. Arising largely from
judicial interpretations of the law, these new barriers to enforcement
severely restrict the ability of private citizens to vindicate their
civil rights in the courts.
By way of background to this year's decisions, which,
in toto, continue and accelerate the process of closing the courts
to civil rights claims by citizens with disabilities, the line of
relevant decisions must be followed back to 1999. Then the Supreme
Court ruled in the so-called Sutton trilogy of cases31
that for purposes of the right to bring suit for employment discrimination
under Title I of the ADA, the determination of whether a person
is a "qualified individual with a disability" (in other words, whether
an individual is covered by the law) needs to be made after various
"mitigating" factors and measures have been taken into account.
This ruling meant that many persons who previously would have considered
themselves to have a disability and been commonly regarded as such
were barred from bringing suit under the ADA because, with the application
of such mitigating measures as the eyeglasses in Sutton or
the blood pressure medication in Murphy, they no longer experienced
"substantial limitation" of any pertinent major life activity, including
the ability to work.
Following on the heels of this restriction in who
has the right to sue, additional limitations have now been placed
on whom discrimination suits can be brought against. The Supreme
Court ruled in February 2001, in the Garrett case,32
that ADA Title I employment suits claiming money damages cannot
be brought against state governments, because the 11th Amendment
to the Constitution bars suits against sovereign entities (which
states are) without their consent.
Traditionally, even where a state has not consented
to be sued, the 14th Amendment has overridden their immunity from
suit in the civil rights area. This may remain so in connection
with racial or gender discrimination, but may not be the case with
disability-based discrimination. According to the Court in Garrett,
the conditions established by the Constitution for federal legislation
overriding state sovereign immunity have not been met by the ADA.
Whether Congress can revise the law to meet the standard
by making more extensive findings of systematic and pervasive discrimination
against people with disabilities by state governments remains uncertain.
Given certain statements in the opinion suggesting that disability
discrimination can in certain instances be "rational," and given
the extensive evidence of pervasive discrimination that Congress
already collected and cited in the ADA findings section and in its
legislative history, considerable fear exists that the Supreme Court
could hold that Congress lacks constitutional authority for overturning
the Garrett ruling.
Other troubling uncertainties also surround the implications
of these decisions. For instance, whether the Sutton decision
and its companion Murphy decision will be extended to suits
under Title II or Title III of the ADA remains uncertain. If they
are, then the ability of individuals to contest alleged discrimination
in the provision or denial of public services or public accommodations
will likewise be substantially limited.
Similarly, critical unanswered questions attach to
the more recent Garrett decision. Here again, the key issues
relate to whether the decision will be extended. If states are immune
from suit for money damages for employment discrimination, will
they also be immune from such suits in connection with alleged denial
of public services or access to public programs under Title II?
To be sure, such decisions as the Court's 1999 ruling in Olmstead
v. L. C.,33 though predating
the Garrett decision, have upheld the right of institutionalized
people with disabilities to bring suit under Title II, and many
suits under Title II, including Olmstead, seek outcomes that
do not involve money damages. On the one hand, to hold that the
11th Amendment bars suits against states for injunctive relief or
other nonmonetary relief, the Supreme Court would probably have
to overrule its historic Ex Parte Young precedent, which
has stood for nearly a century.34
On the other hand, without being overruled, Young has been
significantly limited by a variety of lower-court holdings in recent
years, to the point where, for it to apply, suits must seek only
prospective relief, must be brought not against the state but against
named state officials, and must avoid a number of other highly technical
pitfalls.35
It does not appear that Garrett bars suits
against local governments, as distinguished from states. Garrett
also does not detract from the Federal Government's ability to pursue
Title I cases.
c. MIXED RESULTS
Last year's report noted uneven results in the implementation
of the ADA. For example, whereas it noted appreciatively that city
streets in most places are more accessible than ever before, NCD's
progress report also observed that public transportation in many
localities and regions remains inaccessible, unreliable, inconvenient,
or untimely. While this pattern remains the case, NCD is encouraged
by the transportation initiatives embodied in the president's New
Freedom Initiative and by the approach taken to demonstration projects
in the transportation area. These efforts are discussed in chapter
10.
Because of the accessibility of growing numbers of
streets and sidewalks and because of the increasing incorporation
of ramps and other environmental accessibility features into the
design of public and commercial buildings, the number of people
with mobility disabilities who now have entry to more buildings
continues to grow. But as noted last year, more needs to be done.
Some of these needs continue to exist in the realm of physical access.
Others involve parallel access issues of concern to people with
a variety of disabilities.
While we have by no means achieved universal physical
access, as the law contemplates, the pressing issues of access for
people with sensory disabilities and people with cognitive disabilities
must also be addressed with vigor and focus. For these citizens,
the access issues are not about their literal ability to enter the
building but about their ability to locate the goods, services,
facilities, or information that they want. These matters too will
be discussed in greater depth later in this report.
Last year's report indicated that although the ADA
covers Americans with cognitive and mental disabilities just as
it does those with physical or sensory ones, these citizens continue
to fight for access to the programs offered by both public and private
entities. Citizens with cognitive and mental disabilities face stereotypes
and fears of a unique and persistent nature, the overcoming of which
involves sustained and coordinated efforts in public education and
law enforcement that include the efforts and resources of both the
legal and public health sectors.
But across the spectrum of agencies and laws, and
in connection with all disabilities, enforcement presents troubling
and pervasive issues. These enforcement problems have been extensively
documented. In June 2000, NCD issued its report Promises to Keep:
A Decade of Federal Enforcement of the Americans with Disabilities
Act,36 which analyzed ADA enforcement
efforts of the Department of Justice (DOJ), the Department of Transportation
(DOT), the Equal Employment Opportunity Commission (EEOC), and the
Federal Communications Commission (FCC).
Although recognizing the initiatives and positive
actions of these agencies, NCD's 1999-2000 annual report also identified
significant shortcomings in enforcement. These shortcomings included
the lack of any coherent, unified, and comprehensive national enforcement
strategy as a major weakness. The report found that enforcement
efforts have been shaped largely by an approach based on case-by-case
complaint handling rather than compliance monitoring and follow-up
technical assistance.
Our research revealed that agencies, to varying degrees,
have been hesitant to exercise leadership in litigating difficult
or controversial cases or even in referring cases to the DOJ for
litigation. The efficiency of complaint handling has varied greatly
across agencies and the complaint handling process has been slow
even in the best-performing agencies, and fraught with unreasonably
long delays in the worst.
Despite several funding increases in the past decade,
the report found that no federal agency had an enforcement budget
commensurate with the scope of its ADA responsibilities. Another
significant finding was that agencies have provided few opportunities
for input from people with disabilities in setting overall priorities
for policy development and enforcement activities.
Accordingly, NCD recommended that the DOJ assert strong
leadership in bringing together the cognizant federal enforcement
and oversight agencies to develop a strategic vision and plan for
ADA enforcement across the Federal Government, including a well-coordinated
litigation strategy. We recommended that all the agencies must look
at ways to focus their enforcement resources on means to increase
the consumer-responsiveness of key operations, such as complaint
handling. We argued that all these actions should be undertaken
with appropriate input from and collaboration by people with disabilities.
On balance, most of these recommendations remain to
be acted on. With the advent of a new Administration, initially
faced with the task of putting personnel, procedures, and policies
in place and more recently faced with national security concerns
of an unforeseeable nature, this inaction is certainly somewhat
more understandable than might otherwise be the case. Nevertheless,
we believe it important to emphasize that the DOJ has an uneven
history of acting decisively to promote inclusion and accessibility
for Americans with disabilities under the ADA.37
As we did in 2000, NCD once again commends the DOJ
for intervening to help protect the integrity of the ADA and to
defend it from the onslaught of lawsuits attacking the very basis
of the law. Among the most notable instances over the past two years,
the DOJ intervened in a court case to establish insurance as a public
accommodation under Title III and to blunt efforts aimed at securing
a judicial determination that Title III did not apply to goods and
services made available to the public over the Internet, filing
important amicus briefs in cases heard by several U.S. Courts of
Appeal.38 Additionally, the DOJ filed
an amicus brief in the Nored case39
challenging a Tennessee statute that prohibits people with "any
apparent mental disorder," even the most minor, from occupying positions
as public safety dispatchers.
Along with commending the DOJ for its efforts to establish
constructive policy positions through the courts, NCD also urged
the DOJ to make use of the variety of tools at its disposal (including
regulations, subregulatory guidances, and technical assistance documents)
to take a leadership role on policy issues in Title II and Title
III enforcement and to help covered entities understand and comply
with their obligations under the law in emerging areas, such as
e-government and the Internet, that have not been highlighted in
enforcement efforts or technical assistance releases to date.
Needless to say, the types of arguments the DOJ can
make in court and the kinds of enforcement and technical assistance
activities it can undertake depend in large part on the issues involved.
In this connection, one crucial difference between the Sutton
trilogy and the Garrett cases must be noted: Whereas Sutton
is based on statutory interpretation, the Garrett decision
is predicated on the Constitution. Nevertheless, both decisions
present major issues for the DOJ to resolve and opportunities for
the DOJ to act. In addition, both decisions also present major issues
for EEOC to act on.
The first question to be asked about the DOJ's responses
to these decisions is whether the department believes these cases
to have been correctly decided. Consistent with fidelity to and
respect for the decisions of the high court, various well-established
strategies for reversing or limiting these decisions exist, but
the DOJ must believe that the decisions represent a misconstrual
of statutory meaning or constitutional principles. The Sutton
trilogy decisions, because they rely on interpretation of the ADA,
can readily be overturned or modified by congressional amendment
of the law. Numerous precedents, such as the Civil Rights Restoration
Act of 1991, exist for such congressional response in the civil
rights arena over the past 15 years. Leadership by the department
would be invaluable in seeking to clarify, for example, that mitigating
measures do not include submission to involuntary or potentially
harmful medical treatment and that such measures do not include
the use of AT. If the DOJ were not prepared to go so far as recommending
overturning of the postmitigation assessment of major life-activity
limitation, clarification of what will and will not constitute applicable
mitigation under the law would allow the postmitigation standard
to continue in effect, while ensuring that workers will not be forced
to submit to coercive interventions in their health and private
lives as a condition for pursuing their aspirations to work.
With Garrett, the constitutional basis for
the decision makes the task of modifying its effects far more daunting.
In Garrett, the state of Alabama successfully argued that
the ADA does not meet the criteria established by the 14th Amendment
for enactment by Congress of civil rights laws that override states'
11th Amendment sovereign immunity from suits. In reaching its decision
in the case, the court found the following: (1) Congress lacked
(or, in the findings section of the ADA, failed to articulate) sufficient
evidence of systematic discrimination and denial of equal protection
to people with disabilities by the states to justify the abrogation
of 11th Amendment immunity; and (2) even if the evidence of systematic
discrimination were sufficient to justify congressional action to
set aside states' sovereign immunity, the requirements of the ADA,
including the provision of reasonable accommodations, go so far
beyond what would constitute a mere ban on discrimination as to
constitute a disproportionate and excessive response on Congress's
part to the problem the statute sought to address.
It is interesting that the DOJ itself filed briefs
supporting the constitutionality of the ADA and urging the Supreme
Court to hold the ADA's express abrogation of states' 11th Amendment
immunity to be a proper exercise of Congress' power to enforce the
equal protection clause of the 14th Amendment.40
In last year's progress report, NCD forecast that
"the court's decision will have a crucial bearing on the future
of disability rights." If anything, that was an understatement.
Pending further decisions, a number of key issues, bearing on all
civil rights statutes and presumably even on access to services
provided under federal-state partnerships, hang in the balance.
In addition to those already noted in subsection b, the key issues
now in play are whether the Court's reasoning in Garrett
applies to other federal disability rights statutes, such as Section
504 of the Rehabilitation Act,41
and whether and how states can waive or be deemed to have waived
their sovereign immunity from private lawsuits.
These questions will be taken up later in this chapter
when we discuss recent court decisions that do not directly involve
the ADA but may have a profound and adverse effect upon it. For
the moment, in light of the continuing uncertainties and in view
of the fears of many persons with disabilities that their hard-won
civil rights face dramatic and severe erosion, NCD recommends
that the DOJ develop and assert clear and unambiguous views on these
points, both for presentation to Congress and, subject to the inevitable
factual variations in each case, for use in the courts as circumstances
warrant.
2. HATE CRIMES
In last year's report, NCD recommended that Congress
hold hearings to extend federal hate crimes legislation to cover
a variety of population groups, including persons with disabilities.
NCD reiterates its recommendation that such legislation be adopted
in 2002.
Recent months have provided the most painful reminders
of what hate and prejudice can do. As our nation struggles to accommodate
its values of respect and equality to an era of personal fear for
many and security concerns for all, decisively and expansively asserting,
in law as in practice, the enduring values that we hold becomes
more important than ever. At this time, too, ensuring that all Americans
are recognized and made to feel welcome as full members of our society
is vital.
For Americans with disabilities, this means freedom
from, and legal protection against, the extreme form of discrimination
represented by bias crimes. Whether such crimes are predicated on
malice, an opportunistic belief that people with disabilities are
less likely to resist, resentment at the civil rights demands of
these citizens, or other causes, society must make clear, through
the unqualified pronouncement of federal law, that our disapproval
of hate crimes is backed up by meaningful sanctions and deterrence.
Accordingly, NCD strongly recommends that Congress
enact appropriate federal hate crimes legislation during its 2002
session.
In last year's status report, NCD also recommended
that Congress increase appropriations for preventing and responding
to alleged violations involving certain federally protected activities.
Where manifestations of hate arise from or are directed against
people in response to their pursuit of or exercise of federally
protected rights, society's responsibility is all the greater. Because
retaliation in any form places a heavy burden on the vindication
of all rights and on the exercise of the responsibilities of citizenship,
resources must be identified and strengthened for ensuring that
the requisite vigilance, investigation, and follow-up are available
and used.
In its 1999-2000 annual report, NCD commended the
proactive efforts of the DOJ'S Bureau of Justice Assistance (BJA)
to raise awareness at all levels of government regarding hate- and
bias-related crimes. NCD recommends that these efforts, under
the National Hate Crimes Training Initiative, continue. But NCD
also recommends that the curriculum be reviewed to ensure that issues
bearing specifically on hate crimes against persons with disabilities
are fully incorporated and adequately addressed in all videos, manuals,
in-person trainings, and other materials and efforts. Specifically,
NCD recommends that BJA ensure that the role of bias in opportunistic
crimes against persons with disabilities be fully appreciated by
law enforcement personnel; that crimes committed by caregivers against
persons with disabilities be recognized as bias crimes where warranted;
that the difficulties faced by many people with disabilities in
bringing their experiences of victimization to the attention of
law enforcement be recognized; and that government agencies and
officials at all levels make special efforts to ensure that people
with disabilities who have been the victims of hate crimes are accorded
every opportunity to participate effectively in the legal process
to secure redress and protection.
NCD also recommends that training materials and
official practices identify and candidly address what may best be
described as the secondary consequences of bias. If a police
department or public prosecutor declines to pursue charges against
a defendant out of a belief that a witness or victim with a disability
may not be regarded as a credible witness (as is widely reported
to happen in cases of persons who are blind and therefore cannot
make visual identifications of suspects), or if a prosecutor declines
to call a person with a mobility disability as a witness because
the courthouse is inaccessible or a sign-language interpreter is
unavailable, then the individual with a disability has been doubly
victimized: once by the alleged hate crime, then by the inability
of the justice system to demonstrate the necessary flexibility and
responsiveness.
Because they result in decisions being made that affect
people's lives on the basis of factors that deny the individuality
and uniqueness of each person, stereotypes are as harmful as bias,
even when motivated by manifestly protective instincts. Unless hate
crimes are recognized for what they are and dealt with effectively
through training and oversight, any attempt to deal with them that
does not take the institutional response into account is unlikely
to achieve the level of success desired. Accordingly, NCD recommends
that BJA take all possible measures to identify these issues and
to ensure their proper prioritization in all hate crime-related
training efforts.
3. GENETIC DISCRIMINATION
A year ago, NCD recommended that legislation barring
discrimination by health insurers or employers based on genetic
information be introduced and acted on by the 107th Congress. NCD
believes that recent developments have made the case for legislation
barring genetic discrimination more pressing than ever.42
As a backdrop to the discussion of the specific provisions
that such legislation should contain, NCD recommends that the
Office of Management and Budget (OMB) or the Office of Personnel
Management (OPM) undertake an assessment of the impact of Executive
Order 13145, issued by the previous Administration, which barred
federal agencies from making use of genetic testing in hiring and
promotion decisions and further required adherence to all applicable
state and federal confidentiality provisions in those rare instances
where a federal employer needed to obtain genetic information about
a present or prospective employee. The assessment recommended
here should seek to evaluate the extent of compliance among federal
agency employers, the administrative viability of the order's provisions
in light of other legal and practical requirements bearing on the
public sector employment relationship, and the impact, if any, of
the order on documented short-term or actuarially anticipated long-term
costs of providing health insurance to federal workers and their
dependents.
Based on the findings of this assessment, which
should be completed within the life of the 107th Congress (but which
should not serve as grounds for delaying reform legislation that
may in the interim be considered by Congress), the Administration
should propose legislation that builds on the lessons learned in
the federal sector but that applies to all employers and all providers
of health insurance coverage.
As suggested, new urgency has been lent to the subject
of genetic screening for employment by the rapid growth of interest
in genetic testing and by scientific discoveries, associated with
completion of the human genome mapping project, that purport to
link specific diseases with the presence, absence, or mutation of
particular genes. Although no authoritative data have been found,
all indications point to the increasing use of genetic screening
by employers.
Leaving aside the likely sensationalistic nature of
press coverage concerning these biomedical breakthroughs, many believe
that creation or manipulation of genes in the laboratory or the
test tube is a process that should be approached only with the gravest
humility. Others believe that such technology represents a great
opportunity for increasing longevity and enhancing the quality of
life. For those who believe that genetic research holds the key
to the conquering of disease and a better life for all, and alike
for those who believe some or all contemporary genetic research
to be an assault on the fundamental dignity of the human being,
use of genetic information to condition the availability of employment
or health insurance should be equally anathema.
From the standpoint of any strong opinions about the
wisdom or the direction of genetic research, the conditioning of
key decisions about people's lives on information concerning their
genetic endowment should be a matter of the utmost concern. To those
who regard biotech as scientifically promising and ethically sound,
it must be apparent how the fear of genetic discrimination can lead
people to forgo testing and diagnosis and, in due course, limit
the pool of available persons for participation in clinical trials.
Likewise, to those who regard genetic research and testing as scientifically
misguided or morally objectionable, the intolerability of allowing
employers or HMOs to make decisions about people's lives based on
such information must surely be equally apparent.
Some may argue that denying employers or health insurers
the right to use genetic information in determining who to hire
or who to insure will result in driving up insurance costs for all,
ultimately reducing the availability of coverage in our nation.
We have been able to discover no data to support this hypothesis.
On the contrary, although also not demonstrated by statistical research,
the opposite appears more likely, and it seems fair to propose that
by allowing the collection and use of genetic data for employment
or insurance purposes, we may create so much fear of genetic information
among the populace at large that people will avoid or delay seeking
medical care for all manner of symptoms and conditions until their
illnesses are far more advanced and far more costly and destructive.
Thus, whatever the impact of a ban on genetic testing for health
insurance costs, failure to institute the necessary protections
may well raise the overall costs of health care for our economy.
Thus, to allow genetic testing unchecked in insurance and employment
may represent not a savings, but a shifting of costs in all too
many cases to the public sector as payer of last resort.
NCD endorses legislation imposing strict confidentiality
requirements on the use of genetic information and authorizing monetary
damages and other penalties for its misuse or unauthorized release.
Yet, experience and legislative precedent may dictate recourse to
a still higher standard in this area. Rather than simply impose
restrictions on the use of information and penalties, however severe,
on the misuse of information, we believe the better course is to
prevent acquisition of the information in the first place, except
in those cases where clear and compelling grounds exist for its
provision. Accordingly, NCD recommends that in most cases, and
except where specific exceptions apply, employers and insurers should
be barred from seeking or collecting genetic information. To prevent
circumvention of this ban, employers and insurers should also be
barred from making the waiver of genetic privacy rights a condition
of employment or coverage.
If Congress is unable or unwilling to protect genetic
privacy, it should at least clarify that discrimination in employment
or insurance (including self-insured employer plans regulated under
the Employee Retirement and Income Security Act of 1974 [ERISA])
based on genetic makeup or genetic predisposition is a form of disability
discrimination, actionable under the ADA or other civil rights laws.
The DOJ should take the lead in working with Congress to develop
and support such legislation.
Without broad-based protection of genetic privacy,
the freedom and opportunity that mark our nation may become conditioned
by the identity of one's parents, in ways never imagined outside
of science fiction until now, but ways that are all too imminent
and real nonetheless. Truly, then, will the sins of the parents,
and of their parents before them, be visited on the children.
4. VOTING ACCESSIBILITY
A year ago, NCD urged adoption of amendments to the
Voting Accessibility for the Elderly and Handicapped Act.43
These recommended amendments provided that all polling methods used
in federal elections, including voter registration, be accessible
to voters with disabilities and voters who are elderly.
The tense and uncertain weeks that followed last November's
presidential election will never be forgotten by anyone who lived
through them. Whereas the peaceful methods our nation used to resolve
its succession crisis are surely a model to the world, the election
and its aftermath also exposed significant shortcomings in our electoral
procedures and technology. As important, last year's election served
as the occasion for the United States Supreme Court to make clear
in its Bush v. Gore decision that equal protection in the
exercise of the franchise is a matter of central and national constitutional
concern.
As anecdotes and surveys have made clear, many Americans
with disabilities face obstacles in voting far greater than confusing
instructions or malfunctioning machines. Some are able to vote only
with difficulties that would be intolerable to other citizens or
by forfeiting the fundamental protection of the secret ballot, and
some are unable to vote at all, solely by reason of the interplay
between their disabilities and the arrangements for voting we have
thus far made. When an individual's local polling place, or any
reasonably located polling place, is inaccessible to persons who
use wheelchairs or who have other mobility disabilities, we place
such citizens under access burdens that we would not allow if they
were going out to buy a hamburger. It says little, or perhaps much,
about our esteem for the right to vote that we have made better
and more far-reaching arrangements for the accessibility of fast-food
restaurants than we have for the places where Americans choose their
leaders. Yet, throughout this country, the problem of inaccessible
polling places remains vast.
Nor is the physical accessibility of the polling place
or of the voting booth the only barrier. For citizens with visual
or other disabilities that prevent them from reading the print instructions
on voting machines or from independently knowing which lever to
pull, which touch zone to tap, or which box to mark, the right to
vote does not include the privilege of a secret ballot, and this
despite the fact that technology exists and has been successfully
used in several jurisdictions that would allow the independent casting
of votes through the use of speech output in addition to print on
the voting machine.
At the same time, the voting booth poses obstacles
to persons with cognitive disabilities who need assistance in voting
but whose access to available and sensitive assistance depends totally
on chance.
Additionally, for those persons who, because of age-associated
frailty or because of disability, cannot get to the polls to cast
their votes in person, absentee ballot laws too often provide inadequate
protections. Absentee ballots, as governed by a multiplicity of
state laws, may be legally unavailable to persons who are actually
present in the jurisdiction on election or primary day or they may
require a signature that an individual cannot render or an attestation
or oath (from a person who needs physical assistance in marking
the ballot) that no one else has filled it out. The absentee ballots
may be provided only in print, requiring persons who are blind and
who need to dictate their choices to someone else not only to again
sacrifice their secret ballot but also, in cases in which one or
another such oath is required, to potentially trade their right
to vote for the dubious opportunity of committing perjury.
The barriers to citizenship do not end here. Voter
guides and other instructional materials are rarely provided in
alternative or accessible formats, and when they are it is generally
by the grace of local election officials rather than through any
sense of legal obligation.
Statistics assembled and presented to Congress by
NCD in 2001 put the situation into dramatic profile.44
A full one-third of persons with disabilities of voting age are
not registered to vote. Even outreach to these voters under the
Motor Voter Act has fallen short, judging for example from the fact
that some 42 percent of persons receiving vocational rehabilitation
services were never offered the opportunity to register. Some 81
percent of persons with significant visual impairments must sacrifice
their right to privacy (a right taken for granted by everyone else)
in order to vote by reason of the fact that they cannot independently
read or enter the necessary information. Most striking of all, if
Americans with disabilities were able to vote in the same proportions
as their nondisabled fellow citizens, some 3.5 million more votes
would have been cast in the November 2000 national elections.
Unless we are to adopt the notion that people with
disabilities care less about the future of their country or about
their civic duty than other citizens do, responsibility for this
disparity must be laid squarely on the difficulties and barriers
these disenfranchised citizens face in attempting to enter the civic
mainstream.
Recent and pending federal litigation holds out some
hope of reform, but the broad-based reform legislation currently
under consideration by Congress is the key to improving or perpetuating
this unacceptable situation. In this connection, NCD made detailed
recommendations to Congress concerning the Help America Vote Act
of 2001,45 which the House adopted
and referred to the Senate in December.
A number of states have also enacted election reform
legislation in the wake of last year's experience, but few if any
of these state laws appear to address the unequal protection of
the laws encountered by so many citizens with disabilities in their
efforts to exercise the simple democratic right of voting. Faced
with this evidence of state inability, or indifference, only Congress
can act to ensure equal protection of the laws, as the Supreme Court
boldly undertook to do last year.
As the 107th Congress returns to the consideration
of federal election reform legislation in its second session, the
Senate will initially be called on to adopt its version of voting
reform and assistance legislation. Because the House has already
adopted legislation, the subject cannot be considered de novo in
that chamber. Nevertheless, through Senate action and the eventual
work of the conference committee, NCD recommends the passage
of legislation that meets the concerns raised in our submissions
to Congress and in our reports and studies. It is essential
that the eventual legislation provide direction, incentives, and
flexibility to states in making federal elections accessible to
people with disabilities, but the legislation must contain national
standards that guarantee privacy, accessibility of voting facilities
and election equipment, and accessibility of registration and voting
procedures and of voter information to all persons with disabilities.
The legislation should further provide for culturally
sensitive and appropriate assistance to voters with disabilities
at the polls and in outreach to voters with disabilities, among
other disenfranchised groups, to educate and assist these citizens
and to ensure that they are able to register and vote with dignity.
Appropriate technical assistance and training should be made available
to poll workers, local elections officials, and others who have
contact with voters with disabilities or who bear any measure of
responsibility for the electoral process. Additionally, the law
should provide for the involvement of representatives of the disability
community in its implementation and in the development of policies,
oversight, and regulations under the law. Finally, the new law must
provide for its enforcement and for the accountability of state
and local officials for that enforcement.
5. CONGRESSIONAL ACCOUNTABILITY ACT
In its 1999-2000 annual report, NCD recommended that
the Congressional Accountability Act (CAA) of 199546
be amended to make the provisions of Section 508 of the Rehabilitation
Act applicable to all congressional "instrumentalities." On December
31, 2000, the Office of Compliance (the agency established by the
CAA to administer the law's provisions and to report to Congress
on changes that should be made in the law) issued its statutorily
required biannual report. In that report, the office indicated that
it was not yet in a position to recommend coverage of the congressional
instrumentalities (namely, the General Accounting Office [GAO],
the U.S. Government Printing Office [GPO], and the Library of Congress
[LOC]) under Section 508. The office indicated that further experience
and research were needed before such a coverage recommendation could
be made.
On November 13, 2001, the Office of Compliance issued
an interim report recommending that the CAA be amended to make
the provisions of Section 508 applicable to all congressional employing
offices and specifically to the three congressional entities noted.47
For the same reasons stated by the Office of Compliance in its interim
report, NCD joins in this recommendation and commends the Office
for the soundness of its analysis and conclusions.
The interim report indicates that a number of key
factors have changed during the past year. Most notably, the report
cites the fact that regulations governing the operation of Section
508 and detailing its requirements have been put into effect for
the executive branch and that the executive branch has been operating
under these regulations since they came fully into force on June
25, 2001. Significantly, the executive branch has suffered no serious
dislocation as a result of the implementation of these important
new access provisions.
In addition, the office's interim report notes that
one of the congressional instrumentalities, GPO, has undertaken
voluntarily to comply with the Section 508 guidelines in its management
of some 30 Web sites on behalf of executive branch agencies. Once
again, the evidence from this voluntary compliance is favorable
to Section 508. Application of the provisions of Section 508 to
congressional employing offices and to the congressional instrumentalities
is manifestly in the public interest and has been deemed feasible
and cost-effective. Its application to the congressional instrumentalities
would simplify the provision of access for all because it would
create greater clarity and standardization regarding what is required
and would facilitate the sharing by Congress of the many training
and technical assistance resources that have been created under
Section 508 in its implementation efforts. With these resources
and the associated experience, and with the commitment given by
the Office of Compliance to be of assistance in the implementation
process, Congress should have no hesitation in adopting the recommended
amendment to the CAA.
Accordingly, NCD recommends that Congress enact
the needed amendments to the CAA promptly and provide for the technical
assistance and other resources necessary to ensure effective incorporation
of the principles and provisions of Section 508 into the work of
all congressional offices and entities without delay.
6. OUTREACH TO DIVERSE CULTURAL GROUPS
As NCD noted in last year's report, a large segment
of the population, particularly those from diverse racial, cultural,
and ethnic communities, continue to be excluded from full participation
in all aspects of American society. Years of model programs, technical
assistance, and other federal initiatives have failed to adequately
improve the status of people with disabilities from diverse cultures.
Overall concerns include (1) unequal access to and
benefits under the same federal laws that have seen at least some
level of implementation for the larger disability community, and
(2) the persistence of dual discrimination as a barrier to people
with disabilities from diverse cultures.
America's diverse population requires us to make a
conscious effort to ensure that the needs of all people are addressed.
In this regard, NCD acknowledges the commitment to inclusion reflected
in President Bush's New Freedom Initiative and the commitment of
the Administration to educational reforms that reach all students,
including those from minority and disadvantaged backgrounds and
those with disabilities, and that promise the use of innovative
strategies combining flexibility and accountability. Although expressed
in different terms and, in many cases, with different implementation
strategies, these new initiatives represent the continuation of
a bipartisan commitment that has spanned administrations and congresses
of all parties.
a. THINK TANK 2000 ON DIVERSE CULTURES
Congressional representatives, national civil and
human rights leaders, people with disabilities, and people from
diverse cultures participated in NCD's May 2000 Think Tank project
to define a more inclusive public policy agenda pertaining to the
needs of people from diverse cultures. The participants reached
consensus on three areas for strategic action: (1) promote leadership
development and include emerging leaders in public policy decisionmaking;
(2) disseminate user-friendly and culturally sensitive information
on rights and responsibilities; and (3) work to build and strengthen
alliances with civil and human rights groups in the broader community.
NCD was asked to continue assisting with conversation
around these issues and has continued to do so. A summary paper
from the May 2000 workshop, Carrying on the Good Fight: Summary
Paper from Think Tank 2000--Advancing the Civil and Human Rights
of People with Disabilities from Diverse Cultures, can be accessed
on the NCD Web site.48
NCD recommends that these efforts continue and
that the Administration and Congress undertake to participate in
this process, to review the findings and recommendations of the
Think Tank paper and follow-ups, and to work with emerging leaders
of diverse cultural backgrounds from the disability community to
continue refining its response to their needs and concerns within
the framework of its overall outreach and reform efforts in education,
housing, civil rights enforcement, and other contexts. To this end,
NCD recommends that the Administration designate a liaison for this
outreach.
b. PRESIDENT'S INITIATIVE ON ASIAN AMERICANS AND PACIFIC
ISLANDERS
A 1999 Executive Order was aimed at increasing the
participation of Asian Americans and Pacific Islanders in federal
programs.49 Subsequently, members
were named to the Advisory Commission on Asian Americans and Pacific
Islanders. The commission studied ways to increase public and private
sector and community involvement in improving the health and well-being
of Asian Americans and Pacific Islanders, increase their participation
in federal programs in which they may be underserved, and foster
research and data collection, including information on public health.
These outreach efforts elevated key issues of concern
to these populations to a heightened level of visibility. NCD
recommends that the Administration follow up on the work of this
commission, with a view to identifying and implementing recommendations
and findings where appropriate, with particular attention to those
findings and recommendations that illuminate the intersection between
these groups and disability.
In connection with such follow-up, NCD commends the
Administration for its creation, under the auspices of the NFI,
of the National Technical Assistance Center for Asian Americans
and Pacific Islanders. NCD hopes and expects that the new center
will be successful in addressing a broad range of issues and in
reaching out to a broad spectrum of Asian Americans and people from
Pacific Islander cultures.
c. NATURALIZATION AND RELATED IMMIGRATION ISSUES
In last year's annual report, NCD noted recent legislation
allowing waiver of the usual oath of allegiance requirements for
new citizens with disabilities who could not take or fully comprehend
the oath. The report also discussed related field guidances issued
by the Immigration and Naturalization Service (INS) to its field
offices. The INS issued field guidance and policy modifications
for naturalization processing and adjudication to its field adjudicators
on April 7, 2000. The guidance was unclear, however, on how to accommodate
applicants with severe disabilities with respect to the legal requirement
that they understand the oath of allegiance.
Enactment of P.L. 106-488, amending the Immigration
and Nationality Act, in November 2000 substantially remedied this
problem. The new law provided a waiver of the oath of renunciation
and allegiance for naturalization of aliens having certain disabilities.
NCD recommends that the INS ensure timely and effective
processing of naturalization applications for applicants with disabilities.
To that end, the Disability Rights Section of the Civil Rights Division
of the DOJ, together with NCD and the INS, should undertake to conduct
a comprehensive review to monitor the implementation of these recent
statutory changes, with a view to assessing the success of INS's
efforts to address long-standing problems with its naturalization
process regarding access for people with disabilities and with a
view to anticipating and proactively addressing issues that have
an impact on the citizenship applications of these aspiring Americans.
In reiterating these recommendations, NCD is acutely
aware of both the chronic resource limitations faced by the INS
and the enormous new demands placed on that agency by our efforts
to better track and regulate the entry and tenure of noncitizens
in our nation. But precisely because we have come to understand
as never before the value of American citizenship and the reasons
so many people from all parts of the world aspire to it, the importance
of ensuring that general reforms do not overlook the needs of people
with disabilities is likewise greater than it has ever been.
Current issues of concern to applicants with disabilities
in the immigration and naturalization process, in normal times and
in these, are not limited to those involving the oath. From access
to immigration facilities, to access to written information, to
assistance in the completion of forms, to the availability of sign-language
interpreters (including for materials and interpreters in languages
other than English), many subsisting and emerging concerns need
to be addressed. As they relate to cultural diversity, and in their
own right, these issues need to be addressed, and where problems
are disclosed, they need to be dealt with by the Administration
with the high priority that the values of citizenship confer on
them.
d. UNDERSERVED AND UNSERVED DIVERSE COMMUNITIES
In October 2000, the Department of Education (ED)
funded a competitive grant for the first national native American
center, the American Indian Disability Technical Assistance Center
(AIDTAC). Located in Montana, the center helps American Indians
and Alaskan Natives with disabilities live integrated lives in their
native communities. AIDTAC is committed to helping tribes build
their capacity to develop and implement culturally appropriate laws
and policies, crosscutting infrastructure, and direct program services.
NCD recommends that the ED evaluate these efforts with a view
to determining their potential applicability to other communities
in other settings and with a view to their refinement and incorporation
into the NFI.
e. ELIMINATION OF LANGUAGE BARRIERS TO FEDERAL PROGRAMS
On August 11, 2000, Executive Order 13166 was issued
requiring that all federal programs using federal funds ensure that
language barriers not prevent participation in or hinder benefit
from these programs for non-English-speakers and people with limited
English proficiency. The order was intended to ensure that people
from diverse cultures with disabilities and their families could
take full advantage of federal laws, programs, and services by receiving
understandable, culturally appropriate information about their rights
and responsibilities under various federal laws.
NCD recommends that the Administration indicate
its position with respect to the principles embodied in the Executive
Order, and that if the Administration continues to subscribe to
these principles and methods, it support the formation of an interagency
team composed of representatives from the Departments of Education,
Health and Human Services, Housing and Urban Development, Justice,
and Labor, along with the EEOC, FCC, and Small Business Administration,
to develop and implement appropriate outreach and training programs
and to develop and provide the kinds of technical assistance necessary
to make them effective. To facilitate such outreach and dissemination,
NCD recommends that the interagency team recruit, train, and contract
with a core group composed of people with disabilities from diverse
cultural backgrounds and their family members to help (1) develop
the written materials and programs that will be used for the trainings;
(2) translate materials into many languages, including in accessible
and alternative formats, with sensitivity to cultural appropriateness
of terminology; and (3) sponsor or conduct the trainings once the
appropriate materials are translated, field-tested on sample groups,
and produced for dissemination in communities. NCD also recommends
in this connection that Congress provide funding support to the
federal partners and sponsors of the trainings or other incentives
to partners in order to eliminate potential financial barriers to
participation by team members of limited means.
f. CONTINUING RECOMMENDATIONS
In its December 1999 report Lift Every Voice: Modernizing
Disability Policies and Programs to Meet the Needs of a Diverse
Nation,50 NCD made comprehensive
recommendations for eliminating gaps in access experienced by persons
from diverse cultures or who speak languages other than English.
Ranging from employment to child care to access to governmental
services and information to diversification of human-services personnel
and a host of other key areas, Lift Every Voice offers a
blueprint for action and change that we believe remains viable and
timely.
Although likely to grow more slowly as immigration
procedures are reviewed and tightened, all indications continue
to point to a steady increase in foreign-born and first-generation
Americans among our native-born, naturalized, and legal-immigrant
population. Just as the Administration has recently undertaken a
multiagency review of access barriers in federal policy and law
to the implementation of the Olmstead decision, NCD also
recommends that the Administration, with its Lift Every Voice
report as a starting point, comprehensively address those barriers
that are specific to people at the intersection of disability and
cultural diversity.
7. FURTHER CLOSING OF THE COURTHOUSE DOOR
a. SOVEREIGN IMMUNITY
Earlier, in section 1c of this chapter, we discussed
the barriers to enforcement of civil rights for persons with disabilities
posed by the Supreme Court's February 2001 Garrett decision.
Although Garrett dealt with application of the 11th Amendment
sovereign immunity doctrine to suits brought under the ADA and with
the extent to which the 14th Amendment bears on that immunity, statutes
other than the ADA and civil rights constituencies other than people
with disabilities are affected by recent Court jurisprudence in
this area. Including the Kimmel decision,51
which barred private suits against states under the Age Discrimination
in Employment Act (ADEA), the Supreme Court has applied the sovereign
immunity doctrine to bar suits against states under a variety of
federal laws.
In the wake of these decisions, attention has increasingly
turned to the question of whether and how states can lose their
sovereign immunity, particularly how they can waive their sovereign
immunity and consent to be sued under federal laws purporting to
authorize the right to sue. While the case law is inconclusive,
some believe that under the spending clause of the Constitution,
states can be required to waive their immunity from suit as a condition
for the receipt of federal funds. Under this theory, states would
be required (or be deemed) to waive their immunity and consent to
be sued under such statutes as the Rehabilitation Act, IDEA, or
Medicaid, as a condition for receiving federal grants under these
programs. Others take the view that such waivers would be compelled
and therefore ineffective if not knowingly and voluntarily given.
Whatever the uncertainties surrounding congressional
power in this area, individual states have the right to waive their
immunity from suit. State law will determine how this can be so
done--whether a statute is required or a gubernatorial executive
order or waiver by the attorney general will do--but especially
in states that already have their own human rights laws covering
disability discrimination, the implications of consenting to suit
under the ADA or other disability rights statutes would appear fairly
small.
b. THE RIGHT TO COUNSEL
In section 1c of this chapter, we discussed the heightened
responsibility of the Federal Government for enforcement of civil
rights laws that results from judicial decisions restricting the
access of private citizens to the courts. But the impact of the
decisions discussed thus far, and even of the Sandoval decision
discussed in subsection d of this chapter, may be outweighed by
still another 2001 Supreme Court holding. In the Buckhannon
case,52 decided in March 2001, the
Court significantly restricted the circumstances in which civil
rights litigants can obtain lawyers' fees.
Previously, if a civil rights suit resulted in a significant
change of policies or practices by the defendant, the plaintiff
whose suit brought about these changes was entitled to an award
of attorneys' fees under the "catalyst theory." The individual who
was the catalyst for change was the "prevailing party" within the
generally accepted meaning of the law, and prevailing parties are
generally entitled to reasonable attorneys' fees. In Buckhannon,
however, the Court held that being the catalyst for change was
not sufficient to make a plaintiff a "prevailing party" within the
meaning of several laws. To be a prevailing party, one had to be
awarded damages or some other specific relief from a court. Even
a settlement between the parties that resulted in the payment of
some money damages to the plaintiff will not do.
The Buckhannon decision is likely to have a
devastating effect on the ability of individuals with disabilities
to find legal counsel among the private bar. The limited resources
of the protection and advocacy (P&A) system and of the pro bono
sector of the private bar are unlikely to expand materially or be
able to take up the slack. But Buckhannon's potential harm
is not limited to this. Even from the standpoint of those who may
believe that civil rights statutes have spawned excessive litigation,
the decision bodes adverse consequences. Rather than seek to foster
the ability of the judicial system to distinguish meritorious from
unmeritorious cases, and rather than attempt to structure the rewards
and punishments of litigation to reward cases of merit, the decision
actually punishes those with serious and worthy claims because it
denies attorneys' fees in those instances where defendants settle
out of court, making the changes requested, out of a recognition
that the plaintiff's position is legally sound. Even for those who
believe that attorneys' fees contribute to unnecessary litigation,
the goal should certainly be the establishment of a system that
somehow makes distinctions on the basis of quality and significance.
Various theories have been advanced as to how Buckhannon
will affect the legal strategies and professional ethics of both
plaintiffs' and defendants' counsel. Although these remain largely
speculative, one conclusion that seems beyond doubt is that the
great difficulty individuals with disabilities already face in locating
private counsel to pursue and defend their civil rights can only
be multiplied exponentially. Even in highly meritorious cases, the
odds of winning monetary damages or other relief from a court at
the end of a long process are too remote and too delayed to make
civil rights representation viable for most attorneys.
Taken together with these cases, and with the West
Side Mothers case discussed in the next subsection, this jurisprudence
practically leaves the Federal Government as the only entity with
the capabilities and resources to vindicate the civil rights of
an increasing proportion of America's citizens with disabilities.
Unless the government is prepared to fill the vacuum created by
these decisions, it should take measures aimed at restoring to citizens
the ability to find the means of acquitting their rights for themselves.
Because the Buckhannon ruling is based on statutory
interpretation and is not a constitutional decision, NCD recommends
that the Administration consider and pursue legislation that will
modify this decision. These legislative changes (which should
be applicable to all the civil rights statutes providing private
rights of action) should provide that where an administrative complaint
or court suit identifies practices, procedures, or policies the
defendant is moved to change in the context of, during the pendency
of, or as a result of the litigation, courts be authorized to award
reasonable attorneys' fees according to the same standards that
were in effect prior to Buckhannon. Naturally, the earlier
in the litigation process the reforms are voluntarily implemented
by the defendant, the less these fees ordinarily would be, thus
creating an incentive for defendants to settle meritorious cases
quickly.
No evidence has been adduced of lawsuit abuse by disability
civil rights attorneys. Indeed, judging, for example, from empirical
research showing that only a small fraction of ADA cases ever result
in any relief to the plaintiff, and judging from the widely reported
shortages of attorneys to handle such cases, there seems little
risk that restoring the pre-Buckhannon status quo would have
any conceivable adverse effect.
At a time when the DOJ's resources may be focused
on compelling issues of national security, enforcement of civil
rights laws is likely to become a rearranged priority. Under these
circumstances, giving persons with disabilities strengthened means
for protecting and enforcing their own rights through the courts,
as the law allows them in theory to do, is imperative. Without access
to counsel, these established rights will become illusory, except
for those few with the wealth or other resources to pay for private
counsel or who can obtain the small amount of pro bono legal service
that is available.
c. SECTION 1983
Traditionally, Section 1983 (42 USC Sec.1983) has
afforded legal recourse to individuals aggrieved by violations of
their rights under federal law, including violations by state and
local governments and agencies. Americans with disabilities have
used Sec.1983 in Medicaid and other settings to protect their rights
and to win relief from a variety of unlawful practices.
In 2001, the U.S. District Court for the Eastern District
of Michigan ruled in West Side Mothers v. Haveman53
that Sec. 1983 does not permit private lawsuits to enforce the federal
Medicaid law against a state. Although two other district courts
have rejected the West Side Mothers reasoning, the decision,
if upheld by the Court of Appeals for the Sixth Circuit, where it
is scheduled to be argued in late January 2002, will deny access
to the courts to Medicaid recipients or applicants who believe that
states have violated the federal statute in their implementation
or interpretation of the law.54 If
this occurs, only oversight on the part of the Centers for Medicare
and Medicaid Services (CMS), the federal agency with responsibility
for the Medicaid program, will hold any realistic hope of redress.
Once again, because West Side Mothers is predicated
on the interpretation of statutes, means are readily available for
curtailing its potentially disastrous effects (should it be affirmed
on appeal, or even without waiting for the appellate process to
be concluded). In addition to aggressively participating in the
appellate process (including at the Supreme Court level, if necessary),
the DOJ should develop and submit to Congress on a high priority
basis legislation to clarify and reinstate the long-held and broad-based
understanding of the settled law that preceded the district court's
decision.
d. INTENTIONAL DISCRIMINATION
For the civil rights litigant who can find an attorney
and who can avoid dismissal of his or her case under any of the
decisions previously discussed, a significant challenge remains.
Once actually in court, this litigant must prove that discrimination
has occurred. Yet another 2001 Supreme Court decision, Alexander
v. Sandoval,55 may make this
materially more difficult to do.56
The Sandoval case did not deal with a disability
rights statute. It concerned Title VI of the Civil Rights Act of
1964, but because of the relationship between Title VI and Section
504 and Title II of the ADA, its logic could have a major impact
on the availability of redress under those statutes. In essence,
Sandoval decreed that Title VI of the Civil Rights Act requires
a showing not only that discrimination occurred but also that it
was "intentional." Policies, practices, or actions that merely have
a "disparate impact" will not therefore ordinarily qualify for coverage.
This matters to litigants with disabilities because
Section 504 of the Rehabilitation Act (barring discrimination on
the basis of disability by federal agencies and by recipients of
federal financial assistance, including state and local government
agencies administering federally funded programs) and, to a lesser
extent, Title II of the ADA are modeled on Title VI of the Civil
Rights Act. Consequently, interpretations of Title VI emanating
from the Supreme Court may well be applied to the interpretation
and application of these other laws.
Lower court decisions in the aftermath of Sandoval
are inconclusive, but obviously, if any degree of intentionality
must be pleaded and proved, many policies and actions that exclude
or restrict the options of people with disabilities, but that do
so out of indifference rather than animus, may fall outside the
protections of the law. Will it be enough to prove that a defendant
knew about the adverse and disparate impact of a particular policy
or practice but took no action to remedy it? Will that suffice to
demonstrate, if not animus, then at least knowledge amounting to
intention? And if a defendant claims that its refusal to take requested
action was based on its good faith belief that the accommodation
would be an undue burden to it, or on the belief, admittedly mistaken
but allegedly sincere, that the person making the request did not
meet the legal standard for being a person with a disability, would
such defenses serve to overcome the required element of intention?
In the end, who intends to discriminate? Surely very
few people do. Most people who discriminate believe they are acting
in their best interests, believe they have good reasons for what
they do, or believe that unreasonable demands are being made upon
them. How is their intention to be assessed?
Many rights currently taken for granted under Section
504 and Title II of the ADA can readily be seen to be vulnerable
under an intentional discrimination standard. Application of the
Sandoval rationale to disability rights cases may, moreover,
have consequences far more severe than those attributable to its
use with other civil rights constituencies. This is so because,
while a defendant may not credibly be able to contend that he or
she was unaware of the impact of his or her decisions and actions
on minorities or women, the same claim may be all too truthful when
impact on people with disabilities is involved. For example, if
a government agency is unaware of the existence of assistive technology
(AT) that would facilitate "effective communication" with an individual
who has a disability, then any degree of intentionality, even of
consciousness, may be difficult or impossible to sustain. Once a
source of embarrassment, ignorance may become a legal virtue.
NCD recommends that the DOJ and Congress immediately
begin efforts to find means for limiting or rolling back the Sandoval
decision, not only as it may relate to individuals with disabilities
but also as it bears on the lives and rights of all civil rights
constituencies. At the very least, Title VI and its progeny
should be amended to impose a meaningful due diligence requirement
on civil rights defendants, so they cannot claim ignorance of disparate
impact as a defense to a discrimination charge. If, with due diligence,
the discriminatory impact could have been foreseen or remedied,
a strong presumption of the requisite intentionality should be deemed
as a matter of law to exist.
8. AMICUS CURIAE BRIEFS
As access to Congress becomes more and more the province
of powerful lobbyists and special interest groups and elections
come to be increasingly dominated by large contributors, the courts
have emerged as the only branch of government to which the individual
citizen can be assured of meaningful access and a fair hearing.
If the courts are to become less accessible to ordinary citizens,
including people with disabilities, the role of the Federal Government
in defending and defining these rights can only grow greater and
more profound.
The U.S. Solicitor General's Office is responsible
for representing the United States, as a party or as an amicus (friend
of the court), before the Supreme Court. In either role, the Solicitor
General's Office plays an important role in setting the legal agenda,
in bringing key facts and law before the justices, and in determining
the shape and substance of the law in our nation. In the lower courts
too, the DOJ plays a similar role, advancing arguments and interpretations
and bringing key facts before the courts, particularly the courts
of appeal, through its amicus or intervener role, as well as in
the guise of a litigant.
In the discharge of these responsibilities in the
disability civil rights context, the stakes have now become higher
than they have ever been before. NCD has had a number of opportunities
to commend and to express its appreciation for the positions taken
by the DOJ in key cases over the past few years. Most recently,
DOJ's brief in the Sandusky case57
(involving the impact of Sandoval) has earned our strong
approbation and respect. To be sure, in a few instances the DOJ's
position has been adverse to the legal rights of individuals with
disabilities,58 but we have taken
note of these, too.
NCD does believe that measures can and should be taken
to improve the odds, so to speak, and to ensure that in reaching
its determinations of whether and how to intervene, and of what
arguments to advance, the DOJ could benefit significantly from systematic
and structured input from the disability community. NCD has endeavored
to provide such input whenever possible, but broader input may also
be useful.
Therefore, the DOJ should develop procedures for disability
community input into amicus briefs filed on behalf of the United
States in the Supreme Court on major civil rights cases that the
Court has deemed sufficiently significant to review. If these experimental
consultative procedures prove useful, they should be extended to
the circuit courts of appeals.
When a federal agency undertakes to promulgate regulations
interpreting or applying statutes, it ordinarily seeks public comment
before finalizing its proposed rules. Indeed, the law requires a
public notice and comment process in most such instances. When the
Federal Government files an amicus brief with the Supreme Court
urging a particular interpretation of the law, it is in effect doing
much the same thing. In fact, where it argues for a change in the
law or for a reinterpretation of prior decisions, it is doing much
more than could ordinarily be accomplished by regulatory action,
because for the most part agencies cannot use the regulatory process
to change the law. Yet, in the exercise of its amicus jurisdiction,
the government is accountable to no one for the interpretation it
urges and need never give any reason for choosing to endorse one
interpretation of the law over the alternative being pressed before
the court.
No one can or should restrict the right of DOJ to
develop and advocate the positions it deems best, but in areas where
specialized knowledge and unique experience are so critical to the
exercise of wisdom, links between the department and affected communities
are vital.
DOJ's amicus jurisdiction has contributed to many
excellent court decisions in civil rights cases, but it may have
helped to bring about some adverse ones as well. Although the DOJ
has full legal discretion to endorse any interpretation of the law
it chooses and to seek to enter cases as an amicus whenever it deems
appropriate (except of course when asked for an opinion by the court,
in which case it must respond), the department would frequently
benefit from consultation with the disability community. Such consultation
could help the department identify which cases warrant attention
through its limited appellate resources, to identify the issues
of most concern in the civil rights arena, and to ensure that positions
taken in particular cases are consistent with the overall framework
of public policy in the area.
In the case of Chevron v. Echazabal,59
the Supreme Curt considered the availability to defendants of the
affirmative defense of "dangerousness to oneself" under the employment
provisions of the ADA.60 Specifically,
the question posed before the court is whether the ADA allows an
employer to refuse to hire an individual with a disability if the
job would pose a hazard, not to others, but to the prospective employee's
health. DOJ officials, apparently after meeting with disability
community representatives and indicating an intention not to, have
filed an amicus brief endorsing the defendant's position.61
In doing this, DOJ endorsed a position NCD believes to be inconsistent
with established civil rights case law in the gender area, in which
refusal to give pregnant women jobs that are deemed dangerous to
their health has been held discriminatory. If DOJ chooses to argue
that the gender precedent should not be extended to disability,
it should not shrink from telling the affected community, preferably
before filing its brief, either why it believes the distinction
to be warranted or why it believes the gender decisions to have
been incorrectly decided.
A streamlined consultative process, conducted with
full appreciation of the time constraints applicable to the judicial
process, could help to clarify such issues and could ensure that
the views of the disability community are heard by the Solicitor
General and other appropriate officials before these officials determine
what they want the law of the United States to be. Accordingly,
DOJ, working in collaboration with NCD, should establish a consumer
advisory committee or a judicial watch committee, modeled on NCD's
Tech Watch Advisory Committee, to identify emerging court cases
and legal issues of particular concern to disability civil rights
and to advise the attorney general and the solicitor general regarding
the exercise of their amicus jurisdiction.
Our courts properly place great reliance on the recommendations
of the nation's chief law enforcement agency regarding how difficult
and complex issues of public policy and statutory interpretation
should be resolved. Those officials owe it to the nation to ensure
that their legal knowledge is adequately supplemented by knowledge
of the lives and concerns of Americans with disabilities when they
make recommendations and offer analyses that transcend implications
for the destinies of these Americans.
The advisory panel we here urge should be composed
of lawyers and scholars with disabilities and other disability advocates
with extensive experience and knowledge of the issues. It would
consult with the department under terms of the strictest confidentiality
and, consistent with the provisions of the Federal Advisory Committee
Act and other relevant laws, would understand that its recommendations
cannot be binding. All that it would ask or seek would be the opportunity
to discuss fully with the department the issues involved in key
cases before DOJ determines the posture to adopt before our courts.
Chapter 3
Education
America stands at a crossroads in its approach to
public education. In December 2001, the No Child Left Behind Act
(NCLBA)62 was adopted by Congress.
Representing a revision of the Elementary and Secondary Education
Act of 1965 (ESEA), this legislation charts a new course in our
nation's educational policy, in the expectations placed on public
schools, in the allocation of resources for education, and in the
relationship between the Federal Government and the states in the
achievement of quality education for all children.
At the same time, we stand poised to address the many
issues surrounding reauthorization of the Individuals with Disabilities
Education Act (IDEA), which is due for reauthorization in 2002 and
hence for review by the current Congress. Many of the basic principles
and policies underlying the No Child Left Behind Act are likely
to be advocated as guideposts for, and will find their way into,
the reauthorized IDEA.
Despite efforts from a number of sources to get specific
disability- or IDEA-related provisions into the NCLBA legislation,
the key issues and controversies surrounding IDEA have been largely
left to the reauthorization debate this year. Provisions on student
discipline (calling for the removal from class and the suspension
of special education services for special education students who
violate rules of behavior) and dealing with funding (calling for
the full funding by the Federal Government of the special education
program) were contained in both the House and Senate versions of
the bill but were omitted from the final NCLBA bill by the conference
committee.
Nevertheless, through NCLBA's emphasis on the needs
of disadvantaged children, the new law, although more general in
its coverage, does apply to students with disabilities in several
important ways. As students facing educational disadvantages, children
and youth with disabilities are implicitly within the scope of the
NCLBA. In addition, a number of specific provisions in the new law
do bear expressly on students with disabilities.
1. IMPLEMENTATION OF NO CHILD LEFT BEHIND ACT
If the NCLBA and the forthcoming reauthorized IDEA
are to work harmoniously and seamlessly together, the implications
of NCLBA for special education and students with disabilities must
be thoroughly known and clearly understood. Therefore, as an aid
to Congress in its deliberations on IDEA, and as an element of the
government's implementation of NCLBA, the Department of Education
(ED) should undertake a comprehensive assessment of all the ways
in which NCLBA bears on or modifies existing law and regulations
concerning students with disabilities, the obligation of states
and school districts toward these students, the requirements for
state monitoring of special education services and programs, and
related issues.
The potential for confusion and inconsistency between
the two laws, if this assessment is not made, is amply illustrated
by the issues surrounding the applicability of new testing requirements
and schoolwide and districtwide accountability standards to students
receiving special education services. On August 24, 2000, the ED's
Office of Special Education Programs (OSEP) issued a guidance document,
Questions and Answers About Provisions in the Individuals with
Disabilities Education Act Amendments of 1997 Related to Students
with Disabilities and State and District-wide Assessment.63
This document addressed such issues as (a) when does a state (or
local education agency) need to conduct an alternate assessment;
(b) what an alternate assessment is; and (c) whether individualized
education program (IEP) teams may exempt children with disabilities
from participating in the statewide or districtwide assessment program.
NCD commended the department in last year's annual
report for this response to the previously unanswered questions
posed by practitioners, administrators, and policymakers responsible
for improving educational outcomes for children and youth with disabilities.
Now, even without regard to IDEA, the changes made by NCLBA may
well call into question the continuing vitality and relevance of
this guidance. Some of the answers and possibilities can be gleaned
from a reading of the NCLBA statute and review of its legislative
history,64 but additional answers,
not necessarily self-evident from the words of the new law, are
required, both to give school administrators, students, and their
families the answers they need now and to assist Congress as it
grapples with the complex and daunting issues involved in the reauthorization
of IDEA. Although the implementing regulations for NCLBA are unlikely
to be completed or adopted prior to Congress's completion of work
on the reauthorization of IDEA, the ED should not need to resolve
all the details of its implementation strategy in order to be able
to specify the impact of the act on IDEA.
The need for this reconciliation is further dramatized
by features of the congressional debate over the NCLBA bill itself.
In the course of its work on the bill, Congress heard a number of
calls to include amendments to toughen the student disciplinary
provisions of IDEA. Largely absent from this debate was a baseline
recognition of exactly what the discipline provisions in IDEA already
were.
2. NCD'S ASSESSMENT STUDY OF IDEA
By way of background to the discussion of IDEA reauthorization,
NCD directs congressional and public attention to a document highlighted
in our 1999-2000 annual report. In January 2000, as part of its
civil rights enforcement series, NCD released a report that focused
attention on public concerns about 25 years of monitoring and enforcement
of IDEA. Overall, this report, Back to School on Civil Rights,65
found that federal efforts to enforce the law under administrations
of both parties have been inconsistent and ineffective. Enforcement
is too often the burden of parents, who must invoke formal complaint
procedures and request due process hearings to obtain the services
and supports to which their children are entitled under the law.
In addition, NCD consistently learned that parents of children with
disabilities are enthusiastic supporters of the law. They think
it's a good law. They also told us there is room for improvement
on the law's implementation and enforcement.
One of the things that made Back to School on Civil
Rights particularly compelling was its inclusion of findings
based on the ED's own monitoring reports compiled over the years.
These reports combined to show that 90 percent (n = 45) of
states were out of compliance with required general supervision
requirements designed to ensure that local educational agencies
carry out their responsibilities under IDEA. In addition, 88 percent
of states had not provided appropriate transition services to help
students move from high school to post-school and adult living activities,
and 80 percent of states had failed to provide a free appropriate
public education (FAPE) to students with disabilities.
Back to School also found that despite long-standing
noncompliance with these and other IDEA provisions, the ED had made
only limited use of enforcement through its sanction authority.
Although the ED had begun to carry out a revised monitoring system
(Continuous Monitoring Improvement Process), the department had
failed to include clearly elements that addressed public concerns
about the lack of consistent criteria for making noncompliance findings
and for applying effective enforcement strategies, including triggers
for the use of sanctions.
Based on these findings, NCD recommended in last year's
report that Congress authorize and fund the DOJ to independently
investigate and litigate IDEA cases as well as to administer a federal
system for handling pattern and practice complaints filed by individuals.
NCD also recommended that IDEA budget appropriations
include a 10 percent set-aside provision for complaint processing,
as described in the Back to School report. Supported by joint
agreements governing audit procedures among the ED, the DOJ, the
General Accounting Office (GAO), and the Office of the Inspector
General, this approach to complaint resolution would greatly enhance
efforts to reduce the disproportionate burden of enforcement parents
of children with disabilities have endured in expensive due process
hearings and court proceedings over the past 25 years. All these
findings have clear and direct implications for IDEA reauthorization,
as discussed later in this chapter.
3. THE PRESIDENT'S COMMISSION ON EXCELLENCE IN SPECIAL
EDUCATION
On October 2, 2001, President Bush created by Executive
Order 13227 the President's Commission on Excellence in Special
Education.66 The commission was scheduled
originally to submit its final report by April 30, 2002, but this
date has now been extended to July 2002.
Because the findings and recommendations of any such
commission necessarily must be informed by philosophical and value-based
considerations, having the benefit of the broadest range of experience
and opinion is vital for the commission. For the work of the commission
to be meaningful, its report needs to reflect outreach to those
with this broad range of perspectives. Because the commission convened
its first organizational meeting only on January 15, 2002, NCD is
concerned whether the commission will be able to hear, digest, and
synthesize the necessary range of information and the relevant body
of data in time to make a significant contribution to the congressional
reauthorization debate. In a similar vein, NCD is concerned that
timely IDEA reauthorization efforts across branches of government
may be affected by delays in the completion and transmittal of the
commission's final report.
As important as values and principles are and ought
to be in the deliberations and conclusions of the commission, resolution
of many of the most contentious issues surrounding reauthorization
depends on a close reading of the factual record. Unfortunately,
because different observers can draw sharply divergent conclusions
from the same body of data, even a commitment to evidence-based
policymaking cannot ensure the development of consensus around recommended
reforms. For example, evidence of weak enforcement of the law can
be seen as proving that the Federal Government has failed in its
IDEA oversight responsibilities. By the same token, such data can
be viewed as supporting the contention of IDEA critics that the
statute is cumbersome and difficult to enforce. Likewise, evidence
regarding the burdens and costs associated with efforts by parents
to obtain necessary services for their children can be seen by some
as indicating that IDEA has promoted an overly litigious environment,
whereas others regard such data as demonstrating the steep uphill
path families still have to climb to obtain the services to which
they are entitled by law.
In resolving these and a host of other philosophical
and empirical questions, NCD recommends that Congress and the
commission look at the evidence. For example, in view of the
fact that the findings of widespread state noncompliance with monitoring
and other responsibilities under the law emanate from the ED's own
data, the burden of proof must surely be borne by those who argue
that federal oversight has been adequate, let alone excessive. Similarly,
for those who contend that the due process provisions of IDEA are
excessive or have intimidated school officials or fostered an unduly
litigious atmosphere, the relative rarity of successful appeals
against local authorities' decisions and the unreimbursed out-of-pocket
costs incurred by many parents in pursuing their children's educational
needs are facts that cannot be ignored.
Accordingly, NCD recommends that the National Commission
and Congress give these and other findings a full airing, confident
as we are that if all evidence and points of view are fully incorporated
into their deliberations, the best possible results will be obtained.
In this connection, the commission's charter gives grounds for
concern. Taking as its point of departure the virtually indisputable
premise that special education is not working well, or not working
as well as it should, and embracing the search for research and
ideas to make the system better, the commission's charter contains
no instruction to investigate the possible role of long-term noncompliance,
lack of enforcement, and minimal monitoring and oversight as explanatory
factors in the deficiencies of the current system. In light of Back
to School on Civil Rights, this omission seems particularly
unfortunate, because without attention to oversight and enforcement,
new approaches are very likely to fall short of fulfilling their
potential and goal, just as the old approaches have done.
4. IDEA REAUTHORIZATION RECOMMENDATIONS
As part of its contribution to the unfolding debate,
NCD wishes to address a number of specific matters that are likely
to be controversial in the reauthorization discussion.
a. ENFORCEMENT
As mentioned previously, NCD findings from Back
to School indicate that for more than 25 years and through several
administrations, federal IDEA enforcement efforts have consistently
lacked "teeth." When a state is found out of compliance with IDEA,
the Office of Special Education Programs works with the state on
the development of a compliance plan and provides technical assistance
on the implementation of that plan. This strategy has not solved
the problems, especially when no clear, objective criteria for additional
enforcement options exist. Currently, no clear and effective (positive
or negative) standards and strategies exist for a state that continues
substantial and persistent noncompliance. The result has been devastating
for the students with disabilities and their families who are denied
the protections of the law. Without standards that define the limits
and provide appropriate sanctions, the incentives for corrections
have not been compelling enough to stop the cycle of noncompliance.
NCD believes that this issue has reached a crisis point and recommends
bold steps to correct it:
1. The Department of Education should not be the sole
enforcement agency. The ED has long-standing and collaborative relationships
with state education administrators. These important relationships
are jeopardized when the ED threatens sanctions. Partial solutions
were included in the last reauthorization when enforcement authority
was also given to the DOJ, but only following referral of cases
from the ED. This has not worked; there have been no referrals to
the DOJ since that authority was added to IDEA. To address noncompliance
problems, NCD recommends an expansive role for the DOJ. Congress
should authorize and fund the DOJ to independently investigate and
litigate IDEA cases, as well as administer a federal system for
handling pattern and practice complaints filed by individuals.
2. The lack of national standards is at the root of
the enforcement problems. NCD recommends that the Departments
of Education and Justice be directed to develop national compliance
standards, improvement measures, and enforcement sanctions that
will be triggered by specific indicators and measures indicating
a state's failure to ensure. Stakeholders, including students
with disabilities and parents, should be consulted by the departments
for consistency and clarity as they develop and implement a range
of enforcement requirements.
- Families members and students are very strong stakeholders
in the enforcement of IDEA. In fact, as pointed out earlier, they
have been the true enforcers of the law. Critical to their effectiveness,
however, is the availability of free and low-cost legal advocacy
through public and private legal service providers. Equally important
are training and technical assistance programs for students to
expand their self-advocacy skills. Finally, there are other important
partners in this process; collaborative participation should be
encouraged by special and regular education teachers and agents
of relevant systems, such as INS, child welfare, and juvenile
justice systems. NCD recommends that Congress authorize more
funding for Department of Education-sponsored technical assistance
programs to support the development of state-level technical assistance
networks; self-advocacy and monitoring training for students,
parents, and other partners; and free and low-cost legal services
for families. NCD recommends that IDEA include a formula that
triggers the funding of these activities at an amount equal to
10 percent of the total increase in Part B funding.
b. DISCIPLINE
Because of a few widely publicized cases, many people
appear to believe that IDEA bars schools from taking disciplinary
action, including removal from the classroom of dangerous or disruptive
students, with students who are receiving special education services.
That is not the case, but the existence and frequent public repetition
of this erroneous belief complicates and adds emotion to the discussion
of how the uniformly shared goals of classroom discipline and order
can be squared with the provision of appropriate special education
and related services to all students, including students with behavioral
problems arising from unaddressed physical, emotional, or cognitive
causes.
As noted, discipline amendments to IDEA were proposed
but ultimately rejected in NCLBA. As these issues prepare to surface
again in the IDEA reauthorization debate, NCD points out that if
no child is to be left behind, that commitment applies to students
with disabilities as well. No child should be denied needed educational
services. Rather, the services must be designed and delivered in
an environment and a manner that are appropriate to each child's
needs. We would not allow a parent to keep a child out of school
on the basis of that parent's belief that the child was uneducable,
incorrigible, or dangerous. Were we to allow education officials
to deny services to children who need them, and in the end to deny
all education to such children, the practical results would be essentially
the same. Accordingly, children should never be considered to have
forfeited their right to services, because education, including
special education services, is not something to which a child must
earn entitlement or which a child, any more than a parent, can waive.
As a further backdrop to the discussion of student
discipline, NCD also notes, as we have previously done, that student
behavioral problems cannot be understood or addressed in a vacuum.
By recognizing that the school environment, the level and quality
of services, and other elements of the school setting significantly
influence student behavior, we do not condone or rationalize bad
behavior. By acknowledging that behavioral problems are frequently
not volitional, we do not obscure the distinctions between right
and wrong. Accountability must apply to student behavior, but, as
discussed below, accountability must apply no less to states and
school districts. If students are "warehoused," if they are denied
the technology and services necessary for meaningful participation,
or if they are not challenged to achieve their maximum potential
with appropriate positive behavioral supports, the occurrence of
some behavior problems can come as no surprise. And if appropriate
diagnostic and assessment services, as well as needed remediation,
are not available, the links between behavior and underlying emotional
conditions, though often obvious, may never be elucidated or addressed.
Notwithstanding the perceived need to streamline a deliberately
complex process, NCD recommends that the current protections
on the discipline of students eligible for Part B IDEA remain unchanged.
c. OVERREPRESENTATION FROM DIVERSE BACKGROUNDS
One of the great concerns of many observers of IDEA
is the statistical overrepresentation of children from African American
and other diverse backgrounds among children and youth deemed eligible
for special education services and designated as students with disabilities
for purposes of IDEA.67 To some degree,
this overrepresentation may reflect the interaction of disability
with economic, social, or other forms of disadvantage, ranging from
heightened exposure to lead toxicity in many inner-city areas to
poor nutrition or the destabilizing effects of violence in all too
many neighborhoods. At the same time, the suspicion is widespread
that this overrepresentation of diverse students in the special
education population is the result of "dumping" these students out
of the academic mainstream by school systems that are for any of
a number of reasons unable to achieve educational success with them.
The Bush Administration has demonstrated concern over
this pattern of overrepresentation, particularly as it manifests
itself in disproportionate numbers of diverse students being diagnosed
with emotional disabilities or with developmental disabilities.
As Secretary of Education Roderick Paige stated at an October 2001
hearing: "African-American students are labeled as mentally retarded
and emotionally disturbed far out of proportion to their share of
the student population. Department of Education national data show
that 2.2 percent of all black students, but only 0.8 percent of
all white students, are identified as mentally retarded. Similarly,
1.3 percent of all black students, and only 0.7 percent of all whites
are identified as emotionally disturbed.... For minority students,
misclassification or inappropriate placement in special education
programs can have significant adverse consequences, particularly
when these students are being removed from regular education settings
and denied access to the core curriculum. Of particular concern
is that, often, the more separate a program is from the general
education setting, the more limited the curriculum and the greater
the consequences to the student, particularly in terms of access
to postsecondary education and employment opportunities. The stigma
of being misclassified as mentally retarded or seriously emotionally
disturbed, or as having a behavioral disorder, may also have serious
consequences in terms of the student's self-perception and the perception
of others, including family, peers, teachers, and future employers."68
Thus, as all agree, a response to the problem of overrepresentation
is urgently needed, but that response must be appropriate and effective.
Some will argue that eligibility for special education services,
particularly in the area of learning disabilities and attention
deficit and hyperactivity disorder (ADHD), represents the best solution
to the problem. If special education amounted in practice to nothing
but warehousing, or if evidence showed that students were classified
as special education students only so that school districts could
receive per capita federal funds while providing little or no service,
then indeed many students might be better off without it. But if
special education services are responsive to the learning issues
faced by many students, and if the program is monitored to ensure
that "least restrictive environment" (LRE) requirements aimed at
keeping students with disabilities in the appropriate placements
are enforced, then restriction of eligibility for services constitutes
the proverbial throwing out of the baby with the bathwater.
The diagnosis and remediation of ADHD and related
conditions is fraught with methodological issues and is often more
subjective than it should be. Too often, the suspicion seems warranted
that ADHD is a diagnosis made for the administrative convenience
of the school or even for the financial gain of pharmaceutical companies.
But the solution is to marshal the resources of science to develop
objective diagnostic tools and to test and validate intervention
strategies, going beyond amphetamine-type or other drugs, that have
shown promise and demonstrated effectiveness in these settings.
Prior to taking any action to restrict eligibility
for special education services, especially by limiting the diagnoses
that qualify for the program, Congress should commission an exhaustive
study of the issue by leading medical, educational, behavioral,
and other scientific and legal experts. Such a study does not appear
to be within the charge of the President's Commission and probably
could not be completed in time to illuminate this year's reauthorization
debate.
d. DUE PROCESS
Various critics of IDEA believe that the due process
and appeal rights it affords parents constitute an invitation to
excessive litigation, unduly enrich lawyers, and interfere with
the ability of educators to implement appropriate plans and decisions
for students with disabilities. Regardless of the cogency of these
views, they reflect a radical shift in philosophy regarding the
proper role of parents in the educational process.
During the quarter century since its enactment as
the Education for All Handicapped Children Act of 1975 (P.L. 94-142),
IDEA has embodied a commitment to parental participation in the
formulation of educational interventions for their children. Under
current law, parents have the right to participate in and to agree
to the provisions of their child's individualized education program
(IEP). The right to appeal when they are excluded from this decisionmaking
process or when the results of the IEP process do not conform to
their sense, borne of the most intimate familiarity, of their children's
needs is surely a central feature of the overall statutory commitment
to family involvement in the education of children.
In many other ways, IDEA favors measures to encourage
and promote parental participation in the education of their children.
To the degree that parental involvement is deemed to include some
measure of consent to the measures adopted for their children, and
to the degree that the IEP remains an individualized plan that must
be tailored to the needs of each student, asking the proponents
of due process curtailment how they would protect the parental rights
that the law now enshrines is fair. Litigation is not the preferred
strategy for enforcing parental rights. Out of just such an agreement,
the IDEA Amendments of 1997 included a number of provisions designed
to reduce the instances in which litigation would be necessary,
including provisions for a negotiating process before any due process
appeal proceedings could be instituted. At the very least, before
agreeing to any further curtailment of family rights under IDEA,
Congress should examine the impact of these recent amendments, especially
as they relate to the availability of attorneys' fees under the
law.
In this connection, Congress is likely to face calls
for further narrowing or even for elimination of the entitlement
to attorneys' fees for "prevailing parties" in IDEA appeals. Before
yielding to such calls, and before imposing any other procedural
limitations on the ability of parents to assert and defend their
children's rights and needs, Congress should consider what avenues
would be available to parents of moderate or limited means for pursuing
in good faith their children's IDEA rights if legal recourse were
further foreclosed to them. One result of further curtailment of
attorneys' fees would surely be that only wealthy parents would
be in a position to enforce their children's educational rights
when school systems failed to do so.
Indeed, Congress should do more than simply avoid
adding further constrictions in this area. Because the Buckhannon
redefinition of "prevailing party" may be applied to IDEA by the
courts, thus resulting in attorneys' fees rarely if ever being awardable
under the statute and in due process appeals becoming largely unavailable
to those without the financial means to hire counsel or the bureaucratic
skills to advocate on terms of equality with the lawyers and educators
representing the school system, Congress should make clear in the
reauthorized language that for purposes of IDEA, the definition
of "prevailing party" remains as it has been.
If Congress remains concerned that either attorney
fee availability or parental involvement or other family due process
rights are interfering with the educational process, it should commission
a study, employing empirical and evidence-based tests and data-gathering
instruments, to determine the real impact of due process provisions
on the prevalence and outcomes of IEP litigation and, indeed, on
the impact of parental involvement and due process rights on the
quality of special education and on the character of all education
throughout this country. If Congress does this, it is likely to
reach one of two conclusions. Either it will find that successful
appeals from IEP decisions are numerous (in which case the school
systems in question have arguably failed to properly interpret or
apply the law) or that successful appeals are scarce (in which case,
because no legal fees are available for nonprevailing parties, the
availability of legal fees from "deep-pockets" school districts
could hardly explain the filing of the majority of cases).
For all of these reasons, Congress should resist any
attempts to diminish parental participation/consent, appeal rights,
or attorneys' fees and other due process rights in the reauthorization
of IDEA.
e. ASSISTIVE TECHNOLOGY
In 1997, Congress strengthened the requirements of
IDEA pertaining to assistive technology (AT) by requiring that the
need for technology be considered as an element of the IEP assessment
process. But in practice, all this means is that a box on a form
needs to be checked. In fact, while some states include this item
on mandatory or advisory IEP documentation or checklists used by
school districts, other states do not, meaning that in some places
there may not even be a box to check.
Given the growing importance of technology in the
educational process and the rapidly expanding capability of AT to
mitigate a range of functional limitations, checking a box is no
longer enough. NCD believes that when a school district denies AT,
information should be provided regarding what was tried and rejected,
including a clear rationale.
Inclusion of such a provision should not place administrative
burdens on school districts, because if AT has in fact been considered,
as the law already requires it to be, then the personnel who designed
and approved the IEP will surely know what technology they considered
and why it was accepted or rejected. Nor need this new provision
be the source of additional disputes between parents and school
districts. To ensure that it will not be, NCD recommends that
the data explaining AT decisions be collected solely for monitoring
and oversight purposes and that it be used by states and by the
ED only in its aggregate, nonindividually identifiable form to evaluate
overall trends in assessment and service delivery, as well as for
anticipating personnel preparation and specialization needs.
f. ACCESS TO SCHOOL TECHNOLOGY, INSTRUCTIONAL MATERIALS,
AND MEDIA
Today, current laws require that newly constructed
schools need to be physically accessible to students, staff, and
parents with mobility disabilities. Yet, the closely related premise
that school computers, textbooks, and other instructional materials
and media must be accessible to all students remains far from self-evident
in the minds of many policymakers and educational practitioners.
One cause for this delayed recognition may be the belief on the
part of some that accessibility of the school information infrastructure
and of the curriculum is a responsibility that must be met out of
special education funds. We would not accept this view with regard
to ramps and other architectural features. How can such a view be
sustained with regard to the ramps to the information superhighway
provided in and by schools?
The notion that accessibility is a special education
function appears to derive from the mistaken belief that accessibility
is implemented on behalf of individual students. But if one waits
for an individual student to request such access, it will almost
certainly be too late. In reality, if one builds the infrastructure
without reference to accessibility, retrofitting to accommodate
the needs of an individual student is more difficult and costly
than otherwise need be the case. Only if the law makes clear that
information and curriculum access is no different than physical
access--to the parking lot or the bathrooms or the classroom itself--can
the necessary planning and funding be brought into play. Accordingly,
consistent with existing legal requirements under Section 504 of
the Rehabilitation Act (and possibly, depending on the outcome of
the ED deliberations on the point, under Section 508), IDEA reauthorization
should make clear that accessibility of information technology and
curricular materials is a responsibility of school systems, irrespective
of the needs assessment of any particular child with visual, hearing,
or other communication disabilities.
In this connection, NCD commends the National Institute
on Disability and Rehabilitation Research (NIDRR) for its funding
of the ADA Disability and Business Technical Assistance Centers
(DBTACs) to provide technical assistance to the nation's schools
in the achievement of access to education and information technology.
NCD particularly recognizes the creation of the National Center
for Accessible Education-based Information Technology, which has
been funded to provide technical assistance to the ten regional
DBTACs in carrying out their important new responsibilities in the
educational technology sector.
Congress should ensure in the IDEA reauthorization
that adequate authority and resources are made available for the
provision of technical assistance to state education departments
and local educational agencies (LEAs) throughout the country regarding
the legal requirements of the law concerning accessible school computers,
audio-visual materials, and textbooks. Such technical assistance,
along with the statute itself, should make unmistakably clear that
information and technology accessibility are not special education
concerns, because they are responsibilities that are not triggered
by the needs of any particular student. And most important, such
technical assistance should include substantial guidance on what
information accessibility means and on the techniques, technologies,
and design strategies that will help bring it about.
g. DISABILITY HARASSMENT
As noted with approval in NCD's 1999-2000 annual report,
on July 25, 2000, the ED's Office of Civil Rights (OCR) and its
Office of Special Education and Rehabilitative Services (OSERS)
jointly issued a document pertaining to disability harassment.69
The document addressed (1) why disability harassment is such an
important issue; (2) what laws apply; (3) how to prevent occurrences
and how to respond; and (4) where technical assistance is available
to the public.
The document provided examples of harassment that
could cause a hostile environment, resulting in adverse effects
on a student's ability to participate in and benefit from the educational
program. In addition, the document contained examples of harassment
prevention and elimination measures that may be effective.
In recent years, our nation has made substantial progress
in addressing sexual harassment in schools, and indeed in responding
to all forms of bullying and intimidation. Disability harassment
must be addressed with the same vigor and purpose. Consequently,
NCD recommends that Congress in the IDEA reauthorization should
adhere to the principles and to the important statement of the law
as set forth in the ED document by including strong anti-harassment
measures in the law.
Technical assistance in preventing, identifying, and
halting disability-based harassment should be the primary tool of
federal involvement, but consistent with the themes of accountability
that are likely to be prominent in the law, schools should not be
allowed to escape responsibility if their efforts fall short of
reasonable expectations or if they fail to implement measures to
protect victims and to control offenders. If student discipline
is to be an issue in the reauthorization, then student victimization
cannot be omitted from the equation either.
h. FULL FUNDING
Several components of IDEA, including Parts C and
D dealing with special education and related or supplementary services
and dealing with early intervention services, are mandated and must
be reauthorized. But within the framework of this mandatory status,
considerable room of course exists for the modification of specific
Part B provisions. Discipline, as discussed earlier, is an example.
Another example, and a long-standing concern among special education
advocates, is what is known as "full funding" of IDEA.
Full funding here does not mean that federal funds
should defray all the costs incurred by states and local school
districts in providing special education services. Rather, the term
refers to the fulfillment of the historic commitment, going back
to the creation of the special education program 25 years ago, that
Congress would appropriate funds to meet 40 percent of program costs.
Estimates are that today federal funds meet between 10 and 15 percent
of the costs of special education.
At a time when state and local governments find themselves
facing acute financial pressures, and when, moreover, they are likely
to incur increased expenses in the implementation of NCLBA, the
argument for full funding takes on a practicality and an urgency
that it may not have had in recent years of surpluses and economic
growth. The arguments for full funding go well beyond the strictly
economic, however. At times of economic stress, worthy programs
and purposes are inevitably thrown into competition as painful choices
are made over the allocation of scarce resources. Special education,
even in periods of relative fiscal well-being, is all too easily
scapegoated in ways that run the risk of pitting students with disabilities
against their nondisabled peers in the competition for attention
and resources. What is easier for a beleaguered school official
who fears to ask the taxpayers for more funds than to say, perhaps
even to believe, that without federally imposed special education
costs, cuts in popular program areas could be reduced or avoided?
If schools are to face cutbacks because of local funding
shortages, the dangers of such scapegoating and of the development
of destructive and hostile public and community attitudes toward
special education poses a serious risk to the viability and the
integrity of the entire effort. NCD recognizes that the Federal
Government faces its own fiscal constraints, but there may be few
cases in which the investment of additional funds has as much leverage
value or an increased federal commitment can do as much to protect
and preserve public support for a program that has been and remains
a centerpiece of national education policy over the course of nearly
a generation.
Congress should take IDEA reauthorization as the occasion
for implementing full funding, perhaps over a period of several
years, but with proportionally increasing expenditures over each
year until the target 40 percent level is reached. To fail to act
would be among the most penny-wise and pound-foolish decisions our
nation could make.
i. ACCOUNTABILITY
As reflected in the NCLBA, we have entered a new era
of federal-state cooperation in the universally shared goal of preparing
America's children for the 21st century. Special education must
be prepared to change as general education has and will continue
to do. The watchwords of the new educational era are "flexibility,
accountability, and choice." By applying these watchwords no less
to the ways schools provide special education than to the ways they
provide general education, we can assure equality of opportunity,
which is the goal of all.
Among disability statistics, perhaps the most shocking
is that diploma graduation rates for students receiving special
education and related IDEA services hover at around 27 percent.70
Contrast this with an estimated 75 percent for students without
disabilities. While room exists for disagreement (and certainly
for further research) into the causes of this shocking disparity,
no room or time exists for allowing schools to avoid accountability
for these results. Particularly now, when NCLBA has made accountability
a focal point of national educational policy, we must expect and
can tolerate no less for students with disabilities than we have
for students without disabilities.
Congress should incorporate clear, meaningful, and
enforceable accountability provisions in the IDEA reauthorization,
making states and local school districts responsible for the outcomes
achieved by all their students and providing technical assistance
for those that fall short, as well as rewards and penalties as appropriate.
At a minimum, Congress should require that where state graduation
rates for students receiving special education services fall significantly
below those rates for all students, mandatory and comprehensive
technical assistance be required. And where improvement and movement
toward parity are not forthcoming after two years, students with
disabilities should be assisted to pursue other educational options,
just as students without disabilities in underperforming schools
and school districts will now be permitted to do under NCLBA.
Chapter 4
Health Care
As Congress continues to grapple with a number of
interrelated issues concerning the costs and availability of health
insurance and health care, remembering that Americans with disabilities
face a number of distinct barriers in obtaining, maintaining, and
using health insurance and in accessing and using health care services
is important. At the same time, Americans with disabilities also
confront the barriers, problems, and frustrations with which most
Americans routinely struggle in the insurance and health care systems.
In a series of reports going back to 1993,71
culminating most recently in our March 2001 paper on proposed patients'
bill of rights legislation,72 NCD
described and tracked both kinds of barriers and made carefully
thought-out, balanced recommendations for reform. Against this backdrop
of experience and interest, we first address the issues raised by
the ongoing debate over a national patients' bill of rights.
1. PATIENTS' BILL OF RIGHTS
The intense interest with which many in the disability
community have followed the progress of patients' rights legislation
is not difficult to understand. Despite the difficulties they face
in obtaining and fully benefiting from health insurance, the majority
of Americans with disabilities who are insured receive their coverage
through private sector sources. As early as 1993, NCD'S report Perspectives
on Access to Health Insurance and Health-related Services found
that private health insurance, from ERISA-regulated self-insured
employer plans and from state-regulated individual and group plans,
is the major source of coverage for people with disabilities, whether
as primary insureds or as covered spouses and dependents.73
As our nation grapples with health insurance reform on the federal
and state levels, remembering that the decisions we make will affect
everyone, including children and adults with disabilities who are
among the most vulnerable members of the health insurance population,
is critical.
Owing to disagreements on several controversial issues,
most notably but not exclusively the issue of health plan liability
(the patient's right to sue), Congress adjourned in December 2001
without passing patients' bill of rights legislation. This issue
is anticipated to be a continuing focus of reform efforts in the
second session of the 107th Congress, and it does not seem unreasonable
to expect that compromise legislation will be adopted during 2002.
NCD believes the following key issues must be addressed
in this important legislation:
a. COVERAGE
Precisely because so many Americans with disabilities
rely on private insurance for their health coverage, applying the
legislation to all privately insured persons and to all health care
plans is vital. Refusal of coverage to otherwise eligible persons
on the basis of disability should be impermissible.
We do not suggest that federal law can or should control
the kinds of coverage or types of plans that insurers offer or that
insurance purchasers choose to buy. Elimination of exclusionary
practices based on disability would not interfere with the ability
of insurers to compete on price or benefits and would not prevent
employers from offering more or less comprehensive coverage as they
see fit.
Some would argue that universal coverage in the sense
here contemplated would drive up costs, thereby adversely influencing
both the content and the availability of coverage for all. This
issue is far more complex than it may appear at first glance. Many
factors, including the size and composition of coverage or purchaser
groups, the use of annual or lifetime expenditure caps to limit
plan exposure on behalf of high-cost users, the availability of
preventive and health promotion services, competitive pressures
in the insurance marketplace, and many other considerations go into
this determination. Moreover, we must remember that in the end somebody
pays.
Much of the debate over health insurance coverage
is less about who or what should be covered than about cost-shifting.
If people with disabilities are denied insurance coverage for which
they would otherwise be eligible, then the costs of their disability-related
and non-ability-related care alike all too often fall on the public
sector. In the absence of any evidence that disability and high
use are synonymous, and in the absence of any actuarial data showing
that cost differences among large-group plans can be attributed
to the numbers of people with disabilities covered by those plans,
the denial of coverage on the basis of disability cannot be justified
or allowed.
b. ACCESS TO SPECIALTY CARE
For many people with disabilities who are covered
by health insurance, a major barrier to adequate care is the inability
to obtain specialized kinds of medical treatment and related health
care services to improve or to maintain their level of functioning.
The issues for this population typically relate not to acute care,
nor to post-episodic rehabilitation, but to ongoing services (e.g.,
seating and positioning for wheelchair users) that prevent the occurrence
of functional problems (such as pressure sores) that can in turn
lead to medical problems. Physicians and other practitioners and
institutions capable of providing the range of necessary specialized
services are typically fewer in number than those capable of more
routine kinds of general care. For that and other reasons, the fact
that many health care plans do not include the needed sources or
service categories within their provider networks is not surprising.
In such cases, health plans should be expected to
make provision for out-of-network or out-of-panel referrals, and
these should be available at the same cost to consumers as in-network
services are. Health plans always have the option of including specialized
practitioners in their networks and specialized services among the
interventions and modalities they cover, but they should not be
permitted to effectively deny needed services to beneficiaries with
disabilities by limiting care options to only routine services and
generalist practitioners.
c. POINT-OF-SERVICE OPTION
Among the general public, point-of-service (POS) options,
particularly the right to consult a specialist of one's own choosing,
is surely one of the chief concerns that people express with all
forms of managed care. For many people with disabilities, this is
a pressing issue, in some cases an issue of life and death. If an
individual has identified or long been under the care of a practitioner
who is uniquely skilled and who is familiar with her particular
condition and history, the potential for finding a suitable replacement
may be very small, and this is even more likely to be the case in
rural or inner-city areas, where medical resources of all types
may be thinly spread.
POS options need not be unlimited either as to the
range or number of practitioners allowed. Managed care plans have
already developed a number of POS options, and it should not be
difficult to adapt these to the needs of insured persons with disabilities.
Nor need health plans face excessive costs, because they can require
POS providers to accept the same reimbursement available to in-network
providers and to abide by all other terms of plan participation.
d. CONTINUITY OF CARE
When a practitioner or facility leaves a provider
network, or when an employer changes provider networks, major care
disruptions can occur. For people with disabilities, who may have
complex and specialized care needs and who may have difficulty locating
alternative providers, this situation can present pressing problems
and real dangers.
As a general matter, network-based health insurers
should be required to provide a transition period of at least 90
days, during which members' established providers will be treated
as de facto members of the new network. For persons with chronic
health conditions or specialized care needs who despite their and
the plan's best efforts cannot find a suitable replacement, the
law should include provision for extending the transitional period
or even, where no willing and available provider exists, for indefinite
extension of this option.
Who is an acceptable substitute is a question of fact,
but one as to which the judgment of the patient and patient's family
should be accorded considerable deference. Because the health plan
is not purporting to deny the service and is not paying more than
it would have paid to a practitioner of its choosing, this should
not have material cost implications for insurers.
e. STANDING REFERRALS
Owing to the gatekeeper principle under which many
managed care plans operate, referrals to specialists are often issued
on a one-time or otherwise limited basis, with further referrals
requiring an additional, reviewable authorization by the individual's
primary care physician. Vexing as this process is to many, it is
again often a particular problem for people with disabilities, for
many of whom their real primary care physician may be a specialist.
Because the plan may allow referrals or certain service requests
to be made only by designated gatekeepers (primary care physicians/general
practitioners), this may mean frequent visits to a physician who
has no role in the care of and little ongoing relationship with
the patient.
Even if this is not the case, for the individual with
a disability who needs regular, ongoing care, the system may necessitate
innumerable re-referrals or prior authorizations, with the attendant
delays, paper shuffling, and uncertainties associated with such
procedures. The law should provide for plans to make open referrals
for the regular and predictable specialty care that individuals
with disabilities may need. With the duration, number of visits,
types of services covered, and other relevant variables tailored
to the individual case, these flexible referral practices may actually
yield administrative cost savings to insurers and emotional cost
savings to insured persons in many cases.
f. TIMELY AND ACCURATE INFORMATION
Given the numerous documents, the complex provisions,
and the unfamiliar technical language involved in the administration
of health plans, few people are likely to fully understand their
coverage. For this reason, a number of state and federal laws impose
disclosure and notice requirements on insurers. Whatever the efficacy
of these requirements for the general public, they are of little
value for many people with disabilities, such as people who cannot
read print evidence-of-coverage booklets or explanation-of-benefits
statements because of visual disabilities or people who cannot participate
in informational briefings or readily consult with time-pressed
practitioners because of hearing disabilities.
Patients' bill of rights legislation should contain
requirements for effective communication with purchasers, beneficiaries,
and practitioners, including on-request provision of written materials
in accessible formats and provision of sign language interpreters
and assistive listening technology. In urgent situations where prior
authorization for services is required or time limits apply to filing
a form, these accommodations can literally make the difference between
the availability and unavailability of needed treatment and, perhaps
in some instances, between life and death.
The measures suggested here are identical to those
required under Title III of the ADA's auxiliary aids and services
and effective communications provisions. Whereas most people believe
that insurers meet the definition of public accommodations for purposes
of coverage under the ADA, replicating these provisions in the patients'
bill of rights would nevertheless be useful. That way, any concern
insurers may feel regarding their underwriting and other business
practices being subjected to ADA scrutiny could be allayed. The
insurance industry and Congress should likewise understand that
if the information-accessibility provisions here proposed are not
included in the patients' bill of rights, efforts by people with
disabilities to achieve this access through the ADA or other civil
rights laws are certain to intensify.
Other kinds of information are also vital in this
connection. Expecting health plans to make informed consent forms,
package inserts, usage instructions for drugs included in their
formularies, or other similar materials accessible is not unreasonable.
Health plans and their subscribers should be accorded flexibility
in how this is done, subject to the requirement that effective communication
be achieved.
g. ACCESS TO CLINICAL TRIALS
Access through insurance to clinical trials has some
intriguing implications for people with disabilities, which may
be distinct from its implications for the population as a whole.
If the patients' bill of rights includes any provisions regarding
such access, these implications should not be overlooked.
When we think of clinical trials, we normally think
of controlled experiments designed to evaluate the safety and efficacy
of new drugs. But in principle, although surgery and other medical
procedures are not subject and often not amenable to evaluation
in this way, no inherent reason exists why the research model that
underlies the use of clinical trials needs be limited to the testing
of pharmaceuticals. Are clinical trials limited only to drugs, or
is this methodology available for testing other interventions as
well? Put another way, if insurers are being asked to underwrite
some of the costs of drug development by paying for patients' participation
in clinical trials, would it be unreasonable or infeasible to likewise
ask that this resource be available to test the efficacy of assistive
devices, community interventions, or services and interventions
that, if found beneficial and cost-effective, might well qualify
for coverage under health insurance?
Accordingly, if access to clinical trials is included
in a patients' bill of rights, Congress should make clear that their
use is not limited to pharmaceuticals. The FDA, NIH, or NIDRR should
be instructed to develop procedures for registering nonpharmaceutical
trials and for ensuring the same quality control that is required
in the medication arena.
h. MEDICAL NECESSITY
More than any other criterion for giving or withholding
services, the concept of medical necessity lies at the heart of
the health insurance system. Advocates of health care reform have
sometimes suspected that insurers who use lack of medical necessity
to rationalize denials of service have other motives. But even if
that is true, the complexity of the assessment, coupled with the
broad discretion traditionally granted to insurers in applying the
medical necessity concept, has resisted the articulation of any
objective standard that could be consistently or convincingly used
to review these decisions.
These characteristics make the medical necessity determination
problematic for many people, but for people with disabilities, the
medical necessity question has several added dimensions. First,
as health plans seek to control costs, definitions of covered services
and of what is deemed medically necessary are tending to narrow.
Allied health care providers, ranging from speech-language pathologists
to occupational therapists and psychotherapists to rehabilitation
engineers, report sharp declines in the willingness of health plans
to use their services. Yet, services such as these are often the
very ones that people with disabilities most need.
Second, insurance decisionmakers, including reviewing
physicians in many instances, are unfamiliar with AT, rehabilitation
engineering, orthotics, speech-language services, vision and hearing
services, or other modalities and inputs that people with disabilities
may need. Related to this, many AT devices do not come from traditional
or recognized medical sources and thus have a heavy burden of skepticism
to overcome.
Finally, many AT devices, personal assistant services,
and other interventions that people with disabilities need may improve
function or quality of life, but because they do so without resulting
in medical improvement as that concept is conventionally measured,
they are regarded as functional, rehabilitative, quality-of-life,
social, or otherwise nonmedical in nature. For a person with carpal
tunnel syndrome, a voice-activated computer input system may make
an enormous difference. It may represent the difference between
being able and unable to work. It may immensely enhance the quality
of life in a variety of other ways. By minimizing stress on the
affected wrists, it may in the long run prevent further damage,
but because the joint is not necessarily less inflamed or more mobile,
the voice-activated system is not considered medical or medically
necessary, no matter the good it does.
We live at a time when technology and medicine are
converging and when that combination is capable of bringing benefits
and achieving results that were unthinkable only a few short years
ago. Yet, we also live at a time when the health care system finds
itself under increasing economic pressure and when short-term cost
competition often assumes transcendent importance in the establishment
of coverage policy and in the making of individual case services
decisions. In this collision of opposing trends, people with severe
disabilities may ironically face yet a further problem. It may be
blithely assumed by some that government will provide the technology
or other "nonmedical" services and supports they need. As most people
with disabilities know, this is anything but routinely the case.
Any definition of medical necessity that is suitable
for our day must include a recognition that maintenance and improvement
of function is often as or even more important than isolated parameters
of medical improvement that may have little to do with quality of
life. Our health care system justly prides itself on the increases
in life expectancy that have been brought about in large part through
its collective efforts. Having extended life, the health care system
surely bears some obligation to acknowledge some responsibility
for the quality of life. Only by incorporating a more pragmatic,
functional standard of improvement or benefit into the equation
can the concept of medical necessity be expanded to take fuller
account of the needs and opportunities facing Americans with disabilities,
and all Americans as our society ages, today.
As it relates to the proposed patients' bill of rights,
the key question is whether this pragmatic standard can be incorporated
into the definition of medical necessity without undermining the
traditional and necessary discretion of health insurers to make
these determinations on a case-by-case basis. Put another way, how
can insurers be helped and encouraged to use a broader standard
of medical necessity without risking loss of discretion or potentially
large increases in costs?
NCD believes that two approaches commend themselves
for consideration as a way forward from this dilemma. First, because
insurer fears over costs will prevent the broadening of the definition
of medical necessity to include AT, NCD recommends that as part
of the patients' bill of rights, Congress should appropriate an
amount of seed money, to be administered by NIDRR, for the conduct
of a five-year demonstration project aimed at assessing the costs
and benefits associated with the judicious provision of AT devices
and services within the framework of a major, national health insurance
plan. The program would be carried out by an entity selected
by NIDRR for its knowledge and experience in AT and would recruit
a major insurer or self-insured plan to participate on terms that
limited the participating insurer's financial risk and gave it the
freedom to discontinue the project at any time if it deemed it inappropriate
or unwise to continue.
Under the demonstration project, skilled AT evaluators
and service providers would review all cases, subject to patient
confidentiality and informed consent, to determine the appropriateness
of AT inputs for the function, independence, and overall capabilities
of the individual. On a determination that AT is appropriate, and
on joint selection of the technology to be used by the evaluator
and prospective user, the necessary devices and services would be
provided and their impact on function, future health care costs,
and future health status would be carefully tracked. At the end
of the study period, a broad range of outcome and other data accrued
by project participants would be compared with expected outcomes
and costs. NCD believes that the add-on costs would be far less
than many fear and that the benefits, in terms of other cost savings
to insurers, including to disability insurers and public sector
income replacement insurance programs such as Social Security Disability
Insurance (SSDI), would substantially offset such additional costs
as are accrued.
In the meantime, while this prospective research is
being conducted, a parallel research effort designed to gather new
insight into how medical necessity decisions are actually made should
simultaneously go forward. Functional considerations may in fact
play a decisive role in medical necessity determinations far more
often than many would suspect. For example, if surgery is available
to restore the ability of an individual to walk, it is the ability
to walk and the capacity for independent movement, not an increased
range of motion of the legs, that is the real justification for
the surgery. Similarly, if a pharmaceutical therapy can restore
hearing or vision to a given degree, it is not for the sake of performance
on hearing or vision tests, but because of the increased function
the treatment affords, that we provide it.
If properly designed research into the motives and
reasoning of medical necessity decisionmakers reveals these conclusions
to be warranted, then the entire frame of reference for the discussion
of medical necessity shifts. In relation to AT, for instance, the
issue then becomes not whether the insurance system does or should
disregard function, but rather why or whether that system prefers
one means for improving function over others that may be equally
effective, potentially even at lesser cost. If AT or other nontraditional
inputs provide a level of function that is comparable to what an
insurer would pay if that level could be attained by established
surgical or pharmacological means, what is the rationale for the
distinctions that are made between modalities that yield comparable
results, paying for some and rejecting others? What is the principled
difference between a drug that allows a person to hear well enough
to go out to the theater or restaurants again, on the one hand,
and sophisticated electronic aids that accomplish essentially the
same results, on the other hand?
Subject to further refinement of what outcomes are
truly comparable, we believe that this research, coupled with the
previously proposed study, could assist and induce the insurance
industry to fundamentally rethink its approach to medical necessity
as that concept bears on a variety of goods and services that people
with disabilities now need and that more and more people will want
and need as time goes on.
j. MENTAL HEALTH PARITY
While insurers and others have concerns about the
potential costs of requiring mental health benefits and services
to be available on terms of equality with benefits for physical
diagnoses, other factors also may play a role in the resistance
to mental health parity. Many factors suggest the persistence of
deep-seated prejudice against people with mental illness, and psychiatric
survivors continue to be greeted with fear and suspicion in many
quarters. NCD has documented many of these experiences and concerns
in a series of reports.74
From the standpoint of the available evidence, the
burden of proof on the question of the costs of mental health parity
should properly lie with those who claim that the costs of parity
are prohibitive. Moreover, with the increasing recognition of the
interconnection between mental, emotional, and underlying biochemical,
hormonal, and other somatic factors, the distinction between mental
and physical illness is itself being called increasingly into question.
That distinction is further eroded by the growing use of drugs that
act to influence behavior or affect in exclusively biochemical ways,
through inhibiting or stimulating various enzymes, neurotransmitters,
peptides, amino acids, and other chemical messengers and pathways.
Similarly, the role of organic factors in phenomena ranging from
personality change resulting from trauma, to lethargy resulting
from stress-mediated adrenal exhaustion, to dementia associated
with hardening of the arteries have become widely recognized and
understood.
All indications are that the dichotomy between mind
and body will continue to disappear with new discoveries and treatments.
In light of such findings and prospects, what is the relevance of
disease names when the mode of treatment for many of those denominated
as mental and those denominated as physical is becoming more and
more alike and when the role of psychological factors in ostensibly
physical disease and the role of physical factors in supposedly
mental conditions are becoming increasingly clear and significant?
NCD believes the time has come to establish mental
health parity in the patients' bill of rights or in separate legislation.
2. AMERICA'S LAW ENFORCEMENT AND MENTAL HEALTH PROJECT
As discussed in last year's report, America's Law
Enforcement and Mental Health Project was enacted in 2000.75
Among other things, the law authorized the attorney general to make
grants to state and local governments to establish demonstration
judicial diversion programs, also known as pretrial diversion, that
involve (1) continuing judicial supervision, including periodic
review, of preliminarily qualified offenders with mental illness,
mental retardation, or co-occurring mental illness and substance
abuse disorders who are charged with misdemeanors or other nonviolent
offenses; and (2) the coordinated delivery of services to these
individuals and to the justice system, including specialized training
of law enforcement and judicial personnel to identify and address
the unique needs of a mentally ill or mentally retarded offender;
voluntary outpatient or inpatient mental health treatment in the
least restrictive manner appropriate, as determined by the court,
that carries with it the possibility of dismissal of charges or
reduced sentencing on successful completion of treatment; centralized
case management, involving the consolidation of all of a mentally
ill or mentally retarded defendant's cases (including violations
of probation) and the coordination of all mental health treatment
plans and social services; continuing supervision of treatment plan
compliance for a term not to exceed the maximum allowable sentence
or probation period for the charged or relevant offense; and continuity
of psychiatric care at the end of the supervision period.
In its 1999-2000 annual report, NCD recounted hearing
from a number of individuals with psychiatric disabilities who belong
to leadership organizations representing millions of psychiatric
survivors. These individuals and groups expressed profound concern
and fear that once an offender with psychiatric disability enters
a diversion program, he or she would be judicially required to abide
by the mental health treatment program ordered by a case manager,
probation officer, or even a prosecutor under threat of being judged
in violation of the terms of the program, even if the mandated treatment
is harmful or debilitating (as, for example, electroconvulsive therapy)
and even if the treatment later proves to be inappropriate.
Such coercive outcomes would be inconsistent with
the findings and recommendations of NCD's 1999 report From Privileges
to Rights: People Labeled with Psychiatric Disabilities Speak for
Themselves, which underscored the inappropriateness and harmfulness
of forced mental health treatments. Because of these concerns and
other issues regarding the "voluntariness" of participation by individuals
with cognitive or psychiatric disabilities in the mental health
court system, NCD recommended that the DOJ establish mechanisms
for consulting with people who are psychiatric survivors in the
implementation of the law.
At this time, NCD recommends that the DOJ issue
an overview and update on the implementation and early results of
this important new law, with particular attention to the concerns
reiterated above, but also with a view to fostering the emerging
dialogue over the proper interplay between the criminal justice
and mental health systems.
3. PAIN RELIEF PROMOTION VERSUS ASSISTED SUICIDE
In last year's report, NCD discussed the proposed
Pain Relief Promotion Act of 2000,76
which was intended to permit the use of controlled substances to
relieve pain or discomfort. The bill was not adopted into law. Recent
action by the attorney general aimed at preventing implementation
of Oregon's Death with Dignity Act has brought the subject of "assisted
suicide" back to the forefront of public consciousness.
NCD believes that responsible and compassionate pain
relief should be a right of all people, but provisions to guarantee
this right must be implemented in a manner that protects people
with disabilities, who may be more vulnerable than other people
to the risks and dangers of assisted suicide (or even undetected
homicide) in the name of unregulated pain management. NCD has articulated
its position in this regard in its report Assisted Suicide: A
Disability Perspective.77 NCD
again cautions the Administration and Congress to recognize the
potential dangers of crafting a federal law that promotes pain management
without protecting the human rights of people with disabilities.
But NCD also believes that appropriately regulated access to pain
management, not only through medication--whether with controlled
or noncontrolled substances--but through a variety of other modalities
ranging from biofeedback and acupuncture to support groups and visualization,
constitutes a humane and essential component of medical care and
societal responsibility.
Accordingly, NCD recommends that the Bush Administration
and Congress create a national commission, composed of leading experts
from the fields of law, medicine, and bioethics and including representatives
of the disability community, to develop a framework for legislation
that will adequately address the ultimately inseparable rights to
life and to life with dignity. In this connection, NCD reminds
the Administration and Congress that the despair undoubtedly experienced
by some people with disabilities and the willingness to end their
lives that some may feel are often the results of discrimination,
prejudice, and barriers that many people with disabilities continue
to encounter. Too often, the restrictions and lack of options that
this society has imposed, rather than people's disabilities or their
physical pain, cause some lives to be unsatisfactory to the point
where ending them becomes a conceivable option. From the standpoint
of preserving life, attention devoted to these basic truths may
do more to prevent unnecessary and untimely forfeiture of precious
life than any measures to control the activities of doctors or to
restrict the availability of dangerous drugs could ever hope to
accomplish.
4. MEDICARE
NCD commends the Centers for Medicare and Medicaid
Services (CMS), formerly the Health Care Financing Administration
(HCFA), for its decision early this year to remove the restriction
against coverage under the program of augmentative communication
(AAC) devices.78 The manner in which
this reform came about contains valuable lessons for other steps
CMS could take, both in its administration of the Medicare program
and in its oversight and monitoring of state administration of the
Medicaid program.
The now-rescinded coverage exclusion on use of Medicare
funds to pay for AAC devices stemmed not from the law but from a
national coverage decision adopted many years ago by the administrative
agency in accordance with its broad statutory authority to interpret
and apply the law. In other words, the ban was wholly an artifact
of regulations. The Medicare statute in no way purported to deny
AAC devices where they were appropriate or necessary, but the statute
also vested the implementing agency, as the complexity of the law
makes necessary, with vast discretion over every aspect of the program.
Like the former AAC national coverage decision, the
Medicare program includes in the accretion of rules and regulations
that have marked its growth over more than a generation a potentially
enormous number of other barriers to function by people with disabilities,
barriers that may once have been justified but no longer comport
with our available technology or growing understanding and barriers
whose origins and initial rationale may even be lost to time and
memory. Although some of these barriers (including those posed by
local as well as by national coverage decisions) may on re-examination
prove defensible, many others will not.
NCD recommends that CMS convene a panel of experts,
health care practitioners, and beneficiaries, including persons
receiving Medicare by reason of their status as SSDI recipients,
to broadly review the entire range of existing limitations on coverage
and to make recommendations concerning changes that would advance
the purposes of the program and that would eliminate undue and often
arbitrary distinctions between what is and what is not compensable.
This review should include national and regional coverage decisions,
regulations, manuals, and all other sources of administrative input
into the content of the law.
5. TELEMEDICINE
Broadly speaking, telemedicine involves diagnosis,
treatment, or monitoring done remotely through the use of a variety
of devices linked through the telecommunications system. But as
with any new organizing principle or technology, telemedicine is
creating its share of new problems, even as it bids to solve old
ones.
For many people with disabilities who do not travel
with the ease or regularity they might wish, telemedicine constitutes
a particularly appealing resource. But few if any reimbursement
systems or funding streams have undertaken a comprehensive assessment
of what changes in their payment criteria or fee schedules are needed
in order to make telemedicine work, while preventing its becoming
a dehumanizing and impersonal force. To illustrate, there may be
instances in which energetic deployment of telemedicine technology
could pay for all or part of itself through concomitant reductions
in the cost of medical transportation or personal assistant services.
The effective use of such modalities, however, requires attention
to infrastructure costs (including, for example, the installation
of appropriate broadband telephone service) that have never before
been on the medical system's reimbursement radar screen.
For people with disabilities, successful implementation
of telemedicine's potential also requires attention to some very
distinctive issues that may not be apparent to anyone who does not
have a disability. Consider what is involved in maintaining many
monitoring devices. If an individual lacks the physical dexterity
to perform the required tasks, if the person lacks the visual acuity
to see a light go on or to monitor a digital readout, or if a person
lacks the hearing to discern an audio alarm, the potential of telemedicine
may be compromised. NCD finds little indication that the technology
of telemedicine is being developed with the needs of or usage by
people with disabilities in mind. As with so much medical technology,
whereas the interests of clinicians and manufacturers may receive
considerable attention, no systematic means for obtaining consumer
and end-user input may exist, and in a market dominated by third-party
payers, to the extent payment is forthcoming at all, consideration
of the desires of end-users is likely to receive little attention
or weight.
As telemedicine proceeds, its development must proceed
with attention to the human assistance and accessibility needs of
those it is intended to benefit, as well as to its accessibility
and usability by health care workers with disabilities. Because
telemedicine does not yet have a large installed base, time is still
available to remedy these omissions and to ensure that the evolving
system is designed with all these users and concerns in mind. To
wait longer may be to leave the matter for too long. Congress should
hold hearings on the changes to the insurance system, particularly
to Medicare and Medicaid, which are governed by federal law, that
would be required to make telemedicine work, as well as on the accessible
design requirements that would be needed to ensure that the technology
of telemedicine can be effectively used by those for whom it could
make the greatest difference and whose care costs it could most
dramatically reduce.
Chapter 5
Long-Terms Services and Supports
As our population ages, the costs and alternatives
for community living, long-term care, and support services have
become a subject of growing attention and concern. For many people
with disabilities, including persons living in institutions because
of the lack of community-based or in-home alternatives and those
at risk of entering institutional care settings against their will,
the issues take on pressing personal significance.
With the Supreme Court's historic 1999 decision in
Olmstead v. L. C,79 the context
and imperatives for public policy in the long-term care arena have
been irrevocably changed. Olmstead gave new weight and meaning
to the provisions of Title II of the ADA, which requires public
services, including Medicaid-funded long-term care, to be provided
in the most integrated settings possible. Now, unnecessary institutionalization
of people with disabilities is illegal.
The Bush Administration has recognized that effective
community-based services involve the coordinated efforts of a number
of federal agencies, as well as of state government, and the Administration
has moved forward on measures to bring such coordination about and
to facilitate the development and implementation of plans to make
the principles of Olmstead a reality.
1. THE ADMINISTRATION RESPONSE
In June 2001, following intense advocacy efforts by
and on behalf of the disability community, President Bush issued
Executive Order 13217. Among other things, the order required designated
federal agencies with responsibility and jurisdiction in the long-term
services area to conduct self-evaluations designed to identify barriers
to community living in their regulations, practices, and areas of
concern. The major agencies involved were the Department of Education
(ED), the Department of Health and Human Services (HHS), the Department
of Housing and Urban Development (HUD), the Department of Justice
(DOJ), the Department of Labor (DOL), and the Social Security Administration
(SSA). Several offices and administrations within these agencies
were also expressly involved, and several other departments, including
the Department of Veterans Affairs (VA) and the Department of Agriculture
(USDA), also figured in the findings and recommendations set forth
in the preliminary report on the self-evaluation effort. This preliminary
report, Delivering on the Promise,80
was released by HHS on December 21, 2001. It sets forth a variety
of policy initiatives, action proposals, and goals that will be
pursued in the coming year and beyond.
NCD submitted comments to the Office of Management
and Budget (OMB), which will be reiterated as applicable here.
Two structural features of the self-evaluation process
appear key to the success of any such endeavor: first, the appointment
of a lead agency (in this case HHS) to receive and synthesize all
agency reports and to compile and publish them in a preliminary
report reflecting the entire effort; second, the establishment of
the Inter-agency Committee on Community Living (ICCL). NCD recommends
that as the federal Olmstead initiative moves from research
to implementation of key recommendations and findings, these two
structural components be fully institutionalized. Only through
use of a lead agency can accountability for the overall effort be
established and ensured.
It may be that the Bush Administration will choose
to use the ICCL as the lead agency for Olmstead implementation.
If so, this committee must be given the resources, visibility, and
authority to effectively perform this role. Likewise, if a line
agency such as HHS is designated, it too must be given the personnel,
management, technical, coordination, and fiscal resources necessary
to do the job. Given the pressing and often conflicting demands
on the resources of the involved agencies, and given looming federal
budgetary strictures, continued White House attention will be required
if the promise referenced in the title of the Administration's report
is to be kept.
As critical as are the continued commitment and coordination
of all the involved federal agencies and the existence and support
of administrative mechanisms to ensure the necessary coordination,
accountability, and sustained follow-up, one key resource cannot
come from within the Federal Government. That resource is the knowledge
and experience of other stakeholders, including service providers
and, above all, persons with disabilities themselves, in gathering
resources, monitoring progress, and identifying priorities for the
effort. Accordingly, the administrative structure developed for
continuing the Olmstead momentum must include means for obtaining
and incorporating the regular input of those who know the issues
best and whose lives will be most affected by the results.
Apart from effective interagency coordination and
the fullest possible participation by pertinent nongovernmental
individuals and organizations, other conditions must also be met
if the Olmstead initiative is to succeed. Although we recognize
that the report is preliminary, its omission of any discussion of
time lines is a matter of concern. In the absence of time lines
for the completion of tasks and the carrying out of activities,
accountability becomes difficult if not impossible to assign. NCD
trusts that in its next Olmstead planning document, the Administration
will address the question of how much time is required to accomplish
the myriad tasks requisite to success and specify measurable and
accountable time frames consistent with these assessments.
Establishment of time frames serves another valuable
purpose as well. Because coordinated action is required on the part
of many agencies, time frames and schedules can provide the basis
for ensuring that things that need to be done in tandem and things
that need to be done in sequence can be scheduled or sequenced to
achieve the maximum results anticipated for them. For example, the
HHS report includes a number of initiatives on HUD's part that will
prove critical to the community living effort. If the timing of
measures to make sufficient, affordable, and accessible housing
available is not adequately synchronized with the timing of measures
that remove people from institutions or prevent their entering them,
serious incongruities and discontinuities will be created. Only
realistic scheduling, sufficient allocation of resources, and disciplined
adherence can ensure that this does not happen.
In this connection, NCD also recommends that in
subsequent planning and progress reports, the Administration emphasize
the interconnectedness of each agency's measures. The HHS report
does an excellent job of laying out a variety of measures that each
involved agency can take, but some measures involve joint action
or require the development of complementary or reciprocal regulatory
changes.
2. MAJOR PREMISES OF THE REPORT
To evaluate what the Administration has found and
what it proposes to do, some discussion is needed of what appear
to be the major premises underlying the approach reflected in the
HHS report. Some of these premises are likely to meet with almost
universal approval from the disability community and other stakeholders.
Others may give rise to some debate and discussion.
Two facts underlie the philosophical and policy premises
of the government's Olmstead initiative. First, as stated
in the HHS's report, some 73 percent of Medicaid long-term care
resources currently go to institutional care and some 64 percent
of home care is provided by unpaid family caregivers, friends, or
neighbors. The report recognizes the economic and emotional toll
this takes on the caregivers and includes a number of recommendations--ranging
from increasing the pool and professionalism of paid home and community
service workers to providing respite and other support services
for these unpaid caregivers--for easing these burdens.
The second key fact, as the very existence of the
Olmstead initiative demonstrates and as the report makes
clear, is that the Administration believes in the principles of
community living and maximum possible integration that underscore
the ADA and that lie at the heart of deinstitutionalization efforts
for successive populations over the past two decades. In its operationalization
of this belief, the Administration recognizes the existence of several
types of living arrangements within the framework of a community-based
setting. While we naturally think of a person's home as the preferred
place for an individual to live, other options--including intermediate
care facilities for persons with mental retardation (ICFMRs), assisted
living facilities, and board and care homes--are also acknowledged
as worthy of support (such as by the VA) in certain instances.
NCD shares the recognition that the ideal of enabling
everyone to remain in his or her own home is a major challenge.
But NCD believes that the Administration must remain mindful of
the existence of a hierarchy of community-based options, with the
home first and other facilities and settings following when the
home is not feasible or the individual opts for one of these other
settings. NCD hopes that all programs developed under the Olmstead
initiative will keep this hierarchy in mind and will use procedures
and criteria that give maximum effect to the wishes and preferences
of the individuals being served.
The initiatives gathered in the report reflect substantial
dependence on states to make the Olmstead initiative a success.
Given the structure of the Medicaid program, with the principal
role played by states in its implementation, this dependence is
to be expected. A variety of measures are proposed for empowering
the states in this area, ranging from further easing of Medicaid
waiver requirements to additional Olmstead planning grants
to technical assistance to the states. But beyond specific grants
and certain changes in the rules governing Medicaid coverage, including
the heightened availability of home and community-based waivers
(HCBW), the report recommends no fundamental restructuring of the
Medicaid reimbursement system, including changes of the sort that
would reward states for success in meeting qualitative or numerical
Olmstead goals. Nor does it appear that any relaxation of
state matching fund requirements under the Medicaid program is yet
contemplated.
Whereas NCD believes that effective federal-state
partnerships are essential to the success of this effort, and whereas
we welcome the opportunities for variety and experimentation that
the active participation of the states portends, we are concerned
that states will be expected to make new financial commitments at
a time when, no matter their support for the principles of Olmstead,
they may find it difficult to do so. NCD would not regard exempting
states from financial participation in implementing the Olmstead
agenda as either prudent or feasible.
In this regard too, it must be borne in mind that
the nursing home industry and other institution-based human service
providers are reputed to be politically powerful in a number of
states. In such states, the objections to any significant moves
in the direction of community-based services and care, and the industry's
fearfulness of the diversion of any substantial proportion of long-term
care funds from institutional to community care, could further complicate
the efforts of states to wholeheartedly embrace the Olmstead
agenda. The Administration is urged to be alert to this possibility
as well and, if necessary, to look for means for offsetting these
counterbalancing effects.
3. THE ECONOMICS OF OLMSTEAD
Broadly speaking, two ways exist to fund any major
new initiative: Funding streams can be diverted from other uses
or new funds can be brought to bear. The HHS proposal appears to
propose some of each, but whether the freed-up or added aggregate
sums will be sufficient depends on the numbers of current or potential
nursing home residents intended to be moved into community-based
settings and on the costs of such relocation. The report offers
no estimate of the amount of money that would be generated or diverted
by the steps it proposes. As significant, although we recognize
the prematurity of hard and fast budgetary projections, the absence
from the report of any estimates regarding the costs and savings
of implementing Olmstead (or of the net costs after resultant
savings are taken into account), as well as the absence of any discussion
of a methodology for comprehensively tracking these benefits and
costs, cannot but be cause for concern.
Although the long-term fiscal implications of the
Olmstead initiative will, we believe, prove far less onerous
than they may at first appear, up-front costs will without question
need to be anticipated and met. With a federal budgetary environment
radically different from that which prevailed at the time Olmstead
was decided only three short years ago, the question of how these
costs will be met poses serious issues. It therefore seems reasonable
to suppose that only with massive redirection of funds from current
expenditure patterns can the nation and its citizens with disabilities
hold out any reasonable hope of the promise of Olmstead being
kept in the foreseeable future.
With 64 percent of current long-term care funds and
75 percent of Medicaid funds going into institutional care, a potential
source for such funding is not difficult to identify, but the difficulties
of massive redirection of funds and reformation of policy are complex
by any standard. Not only leadership but great courage and wisdom
will be required for the Administration and Congress to bring this
about. NCD and the disability community stand ready to be of all
possible assistance in this effort.
Lest policymakers be prone to follow the path of least
resistance and to seek to avoid uprooting powerful entrenched interests
or long-established habits and patterns, the public debate surrounding
the Laguna Hospital case in San Francisco should be viewed as a
harbinger of developments likely to occur elsewhere in the country.81
Following the announcement of a plan to expend nearly a half billion
dollars on a massive institutional rebuilding project, people with
disabilities and advocates joined together to demand the redirection
of these funds to community living and related services. On December
18, 2001, the U.S. District Court for the Northern District of California,
relying on the Olmstead precedent, for the second time denied
motions by the state and city defendants for the dismissal of the
class action lawsuit filed to block the Laguna Honda building project.
It is interesting that plaintiffs' legal counsel in the case included
not only disability advocates but representatives of senior citizens
as well.
As prophetic as community opposition to this major
bricks-and-mortar project may be, and as portentous as is the emergence
of an alliance between people with disabilities and senior citizens
around the goal of community living, the apparent intransigence
of the state and municipal authorities in the matter may be of even
greater significance. Such intransigence may illustrate, as vividly
as anything can, that only with strong and continuous federal oversight,
support, and suasion can the words of Olmstead be turned
into the reality of daily life for so many.
4. OTHER PROGRAMMATIC ISSUES
Whatever numerical values are ultimately applied to
the process, success of the Olmstead initiative depends on
the following: returning to the community the largest number possible
of currently institutionalized persons who wish to live in community-based
settings; ensuring that these persons are returned to their homes
where possible or to the least restrictive, most integrated group
settings where not possible; preventing the institutionalization
of as large a number of at-risk persons as possible; identifying
and providing the resources, program supports, and infrastructural
elements necessary to maximize the likelihood of success in working
with or on behalf of each individual; and developing the most active
and effective range of intergovernmental, federal-state, for-profit,
and nonprofit private-public partnerships in the service of the
effort. This agenda is large and can only be operationalized and
addressed over time. But a number of structural features of the
Medicaid program, though not addressed in the HHS preliminary report,
are likely to create barriers at an early stage and thus are worthy
of anticipation and discussion here.
Although means-tested and directed at people of limited
economic means, the Medicaid program has become a support of surprising
importance to many middle-class Americans. The "spend-down" provisions
of the law are one of the main reasons this is so. Through the use
of spend-downs and related provisions, people whose means are initially
too great to qualify for Medicaid, but too small to sustain the
costs of long-term institutional nursing home care, have been allowed
or forced to use their own resources to the point where those resources
(subject to certain statutory exceptions) are exhausted, and then
to qualify for Medicaid.
For persons avoiding or delaying nursing home care
through participation in the Olmstead program, the costs
of adequate community-based care or home services will still exceed
and deplete the resources of many initially middle-class people
in many instances. Spend-down provisions will need to be expanded
and modified to allow at-risk individuals to benefit from the Olmstead
initiative, in much the same way, save for place of residence, as
those provisions now facilitate the support of institutionalized
persons. The HHS report appears to recognize this fact, but a number
of the key issues remain to be addressed.
In a related vein, to the degree that additional public
and private funding streams will need to be joined with Medicaid
to amass the resources needed to keep the Olmstead promise,
attention will need to be paid to coordination of benefits and to
potential inconsistencies and contradictions between the rules applicable
to these other programs and to the rules governing Medicaid. Bearing
in mind the pressing demands that already exist on their resources,
funding streams that should be considered and integrated where appropriate
include the following: Older Americans Act funds, community development
block grant (CDBG) funds, independent living funds, and, where they
exist and are still funded, state in-home services programs. In
addition, NCD recommends that the Administration support and
Congress enact two statutes that have been proposed in recent sessions:
the Family Opportunity Act and the Medicaid Attendant Services and
Support Act (MiCASSA).
5. IMPLICATIONS FOR THE NON-MEDICAID POPULATION
In the long run, the availability of long-term services
and supports to enable people with disabilities to remain in their
homes and to enable older people to age in place is an issue for
our entire population. The issue is not limited to those who receive
or even who could conceivably become eligible to receive Medicaid.
For us to truly reverse the pro-institutional bias inherent to greater
or less degree in most of our funding and service systems, modifying
the costs and benefits applicable to a variety of stakeholders will
be necessary. One element of this involves our nation's need to
dramatically increase the availability and affordability of private
sector long-term care insurance. As important, we need to modify
the current balance of incentives and disincentives under which
insurers operate, so that home care will become the preferred option
to institutionalization for insured and insurer alike.
Currently, when affordable long-term care coverage
is available, it frequently tips the scales in favor of nursing
home admission and residence by providing substantially higher rates
of reimbursement for institutional care, by offering only inadequate
amounts for in-home services and supports, by imposing conditions
on payment for in-home care (such as number of activities of daily
living compromised or level of medically determinable illness) that
further limit the availability of reimbursement, and by a number
of other restrictive provisions and practices. This annual status
report is not the place for presenting detailed recommendations
about how these patterns could be changed or about what kinds of
public-private partnerships might be effective in making long-term
care insurance readily available. It is enough to observe that the
need is too great for government to possibly meet alone, but if
the need is not met, our nation faces risks of intergenerational
conflict too disquieting to willingly contemplate or ever permit.
NCD will continue to lend its experience, its access to people with
disabilities, and its good offices to this unfolding public discussion
in the months and years to come.
6. SOCIAL SECURITY REFORM
For a number of years, the solvency of the Social
Security retirement system has been a subject of discussion and
growing public apprehension, particularly among younger workers
who fear that the system will not be there for them when their turn
to retire comes. With the appointment and recent report of the Presidential
Commission on Social Security Reform, the questions surrounding
the future of Social Security, including the possibility of its
partial "privatization," have come even more to the fore.
What is striking, though, is the absence from the
commission's charter of any attention to the disability insurance
(SSDI) program or to the possible impact on the SSDI program of
any proposed reforms. Some people have expressed concern that some
of the measures under consideration by the commission could adversely
effect the SSDI program.
Our purpose here is not to evaluate these risks or
to propose reforms in the funding or administration of SSDI. Nor
do we hope to opine on the various official assessments of the health
and solvency of the SSDI trust fund. But NCD does feel obliged to
remind the Administration, Congress, and the public that Social
Security (under the Old-Age and Survivors component of the program
for retirees with disabilities and for younger persons receiving
benefits under the SSDI program) is a matter of great concern and
importance to many Americans with disabilities. It may be that different
trust funds and different demographic projections are involved;
however, we believe it is dangerous and short-sighted to consider
any major changes in any part of the Social Security system without
taking their potential impact on all recipients carefully into account.
Nor is it possible, because Social Security in one form or another
is among the major funding streams for many people with disabilities
and many older Americans, to analyze and unravel the complexities
of Olmstead implementation without taking the availability
and role of these funds into account as well.
Accordingly, NCD recommends that the charge to
the present and to any future commissions be expanded to include
consideration of the SSDI program, and that all major proposals
for restructuring any part of the Social Security system be prepared
with the interests, testimony, and statistics of recipients/beneficiaries
with disabilities in mind. Otherwise, the fragmentation, inconsistency,
and even contradictory patterns of past policy are not likely to
be remedied any time soon.
Chapter 6
Issues of Special Concern to Youth
Most of the sections of this report apply to everyone,
youth along with adults. Issues of health care, housing, and long-term
services bear on the lives of children and young adults with disabilities
as much or in some cases with more weight than they affect the lives
of older persons. Beyond the issues that affect everyone, a number
of issues are of specific concern to youth and young adults with
disabilities and therefore warrant inclusion in a separate chapter
dealing with this segment of the population.
1. SCHOOL TO WORK TRANSITION SERVICES
As documented by NCD's research82
and as recently acknowledged in the HHS Olmstead federal agency
self-evaluation report discussed in chapter 5, the secondary school
outcomes for youth and young adults with disabilities remain dramatically
inferior to those achieved by their peers. Perhaps the most troubling
statistic in this saga is the academic graduation rate, which for
students who have received special education services hovers at
around 27 percent, compared to 75 percent for students without disabilities.
Thus slowed at the starting line, continuing disparities in postschool
life would not be at all surprising.
Facing an economy in which entry-level jobs are likely
to be harder to come by and where youth unemployment is likely to
rise, the consequences of what does or does not happen in school
are likely to be more influential more quickly than they may have
been in recent years, when demand for workers of all kinds, including
entry-level workers and recent graduates, stood at the highest levels
since World War II. Ironically, even certain long overdue reforms
in the policies of the vocational rehabilitation (VR) system may
have made the transition of some students with disabilities from
school to adult settings that much more difficult. In 2001, the
Rehabilitation Services Administration (RSA) issued regulations
implementing the Rehabilitation Act Amendments of 1998.
For these reasons and others, effective transitional
services are more crucial today than they have perhaps ever been
before. In this light, the issues surrounding transition and the
barriers to its success, though among the most chronic source of
frustration facing successive administrations and the disability
community, warrants further discussion and innovative approaches.
The forthcoming reauthorization of IDEA is the logical time and
place for doing this.
Last year's NCD status report reviewed a number of
initiatives undertaken during 2000 to begin remedying the transition
situation. As last year's report stated, these efforts laid a foundation
that requires further building in the form of effective systems
at federal, state, and local levels. One of the most far-reaching
of these initiatives was the release by the Social Security Administration
(SSA) and NCD of a joint report calling attention to persistent
issues and problems documented in national postschool studies.83
While postsecondary education participation showed slight improvement,
more youth with disabilities found themselves unable to enter employment
on leaving school and ended up consigned to Social Security benefit
rolls. The data in this report made clear that, shocking and unacceptable
as low academic graduation rates are, these disparities do not by
themselves explain the employment and related life outcomes disclosed
by the study. That possession of a regular high school diploma highly
correlates with lifetime earnings potential is well-known. But other
factors go into the equation as well.
One of these might be the availability or unavailability
of early work opportunities. In this connection, the report indicated
that youth with disabilities who had participated in vocational
or other on-the-job training opportunities were less likely to cease
work and return to the SSDI rolls than were older disability insurance
beneficiaries.
In their efforts to enter the employment mainstream,
young people from diverse cultural groups, the report found, faced
additional barriers, such as lack of attention to their limited
English-language proficiency, use by service providers of culturally
inappropriate strategies or information, and insensitive service
providers. Finally, the report identified strategies that have worked
and that should work, in light of existing legislation, unmet needs,
and unserved populations, and it presented recommendations for national,
state, and local community action.
One of the best strategies identified for improving
the quality of post-school outcomes is effective and coordinated
transitional services. Under IDEA, the responsibility of schools
to students receiving special education services is not limited
to what happens to them while they are in school. Likewise, under
the federal Rehabilitation Act, the obligation of the VR system
for individuals with disabilities does not begin the day the schoolhouse
door closes behind them for the last time. Through the vehicle of
transition services, both service systems are responsible for coordinated
planning and programming during the final years of school to ensure
that students with disabilities have the skills, experience, and
technology they will need to successfully enter the postschool world
and to facilitate as smooth and seamless a transition as possible
from educational to adult services.
Whereas many local examples of effective and cooperative
transition planning can be found, the institutional barriers, jurisdictional
lines, cost-shifting agendas, and lack of accountability that broadly
characterize the transition process have combined to create one
of the most long-standing and intractable obstacles to successful
entry into employment or other postsecondary educational activities
for many young people with disabilities. Accordingly, NCD has
strongly recommended and continues to urge that the Administration
and Congress develop an overarching focus on the kinds of communication,
collaboration, and accountability that exist across all federal
agencies and programs that need to be involved in preparing our
nation's young people with disabilities for full participation in
society.
These efforts need to begin with dialogue among the
affected parties, especially including youth with disabilities themselves.
Collaboration must extend not only to such specialized service systems
as VR and special education, but also to the broader workforce development
systems such as one-stop centers and workforce investment boards
operated under the Workforce Investment Act of 1998 (WIA), Job Corps,
apprenticeship training programs, Americorps, general equivalency
diploma (GED) degree programs, vocational education programs, community
college systems, and others.
With both IDEA and the Rehabilitation Act coming due
for reauthorization, and because they are the logical programs with
which any new effort to improve transition services should begin,
the time is right for serious new efforts to ensure that transition
services will be provided effectively. As currently written, neither
of these laws is lacking in provisions, indeed in mandates, for
transition planning and services, but what does appear to be lacking
are adequate provisions that link the operation of the two statutes
and that provide for joint accountability on the part of the special
education and VR systems.
a. ASSISTIVE TECHNOLOGY
One problem that frequently hinders effective services
is the need for transitioning students to obtain assistive technology
(AT) for use in postsecondary settings. Apparently, students are
caught between the schools' desire to retain ownership of AT they
have purchased, on the one hand, and the VR system's reluctance
to buy new, often duplicate, AT, on the other hand, particularly
its unwillingness to buy duplicate or additional equipment while
the student is still in school.
A solution to this problem could be at hand that would
not require VR agencies to purchase duplicate technology to what
the student has been using in school. The Federal Government should
provide guidance and technical assistance to ensure that both educational
and rehabilitation agencies are aware of means for transferring
ownership of such technology from the one system to the other. Specifically,
the IDEA reauthorization and the forthcoming VR act amendments
should both include clear and unambiguous language requiring states
to eliminate from their laws any provisions that would prevent or
unreasonably complicate entry by educational and rehabilitation
agencies into repurchase or other transfer agreements that would
allow appropriate AT to follow the student where the school system
has no present need for it and where the user does have a continuing
need.
Similarly, IDEA and the Rehabilitation Act should
contain identical language clarifying the appropriateness of such
transfers under federal law, indicating the value of such transfers
as a means for expediting transition and minimizing costs, and setting
forth a number of models (from among those that already exist around
the country) for how the residual value of equipment can be determined,
for how repurchase or transfer agreements can be structured, and
for how auditing and monitoring procedures should work. Using
standard accounting procedures that take equipment's age and expected
useful life into account, valuation and pricing of equipment to
be transferred should not be difficult to determine.
b. COST-SHIFTING
Undoubtedly, one of the chief structural barriers
to the delivery of effective transition services is the belief on
the part of each service system that the other should pay. NCD
recommends that Congress articulate and legislate a clearer answer
than currently exists, and incorporate that answer in both statutes.
Convincing arguments can be made on both sides of the case, but
the current uncertainty, leading as it does to innumerable low-level
disputes and redounding to the disadvantage of postsecondary students
with disabilities who cannot be expected to mediate or resolve these
disputes, cannot be justified or allowed to continue. Standards
must be developed that clarify the financial responsibility of each
service system in the transition process. Existing provisions governing
the potential role of Medicaid (for students who are eligible for
it) should also be clarified. The end result should be a set of
arrangements, an allocation of financial responsibility, and an
order of precedence that, although not increasing the costs of transition,
will eliminate the inefficiencies and costs associated with the
current belief of each involved service system that it is the payer
of last resort.
Lest cooperation between these entrenched systems
be deemed impractical, it should be remembered that both special
education and vocational rehabilitation are administered and supervised
by a single cabinet department, the Department of Education. Given
this commonality, the reauthorizations could instruct the secretary
of education to establish administrative review procedures for quickly
and definitively resolving disputes between the two service systems
regarding the proper allocation of costs or other aspects of their
roles and relationship under the law. It is surely not unreasonable
to expect that programs administered by a single federal agency
be able, or be made, to work effectively together, or that the oversight
agency be expected to resolve disputes between recipients of federal
funds under the programs it administers and monitors.
As it too often plays out now, students and other
youth suffer as service systems battle to shift costs, and this
situation is not necessarily limited to special education and VR
or college administrators and VR. With the complexities of the law,
it is hardly reasonable to expect students or young labor market
entrants to be able to determine, let alone enforce, answers to
these questions.
One approach to the cost-shifting problem involves
implementation of a right-of-recovery approach. Under such a pay-first-fight-it-out-later
approach, if either of the agency partners failed or refused to
fulfill its responsibilities under the law, the other would provide
the necessary services, pay the required sums, and seek recovery
later. Whereas this approach could act as a deterrent to cost-shifting
if the noncompliant service provider were financially penalized
for its failure to perform, there is no guarantee that an agency
that thought it could escape punishment would still not consider
the potential punishment worth risking. In light of historical experience,
the chances of state agencies being financially penalized by the
Federal Government for failure to meet the requirements of either
the special education or vocational rehabilitation laws must be
regarded as small. Moreover, such a system would still require the
student or youth with a disability to act as more of his or her
own case manager than is reasonable to expect. Under these circumstances,
only an approach that imposes joint financial responsibility for
success or failure, and that is not discretionary, will suffice
to enforce the necessary coordination.
c. JOINT ACCOUNTABILITY PILOT PROJECT
Too often, joint- or multiple-agency responsibility
in law amounts to no responsibility in fact. If two entities are
responsible for some action or outcome, how are their relative roles
in success or failure to be evaluated, especially if they disagree
on the key facts? This is the problem that further complicates and
frustrates efforts to monitor transitional services. No one has
the authority to lay blame and, as significant, no penalties or
other costs have attached to any of the involved service systems
for failure. But when both service systems succeed in avoiding the
responsibility to pay or to bring about the desired outcome, this
hardly means there are no costs. Those costs all too frequently
become the responsibility of the Social Security system or of other
income-maintenance programs.
In the end, blame may be of little more use than mandates.
Instead, a bold and innovative approach is necessary that offers
incentives for cross-agency transitional efforts and that rewards
or sanctions the agencies in tandem, depending on the outcome. To
accomplish this, Congress should establish a pilot program using
competitive grants to VR agency-school district consortia. The amount
of funding ultimately forthcoming should depend on the achievement
of measurable, objective, and predetermined outcomes relating to
evidence of success in the delivery of transition services and relating
to the involvement and satisfaction of youth with disabilities.
Models for such funding approaches exist under a number of laws,
including the Ticket to Work and Work Incentives Improvement Act
of 1999 (TWWIIA), which compensates Employment Networks on the basis
of their achievement of various milestones in their work with Social
Security recipients.
Appropriate milestones for use of such an approach
in the transitional services sphere might include participation
of both agencies in planning meetings; establishment of joint transition
plans on behalf of specified numbers of students; provision of services
and completion of steps called for under these joint plans; and
achievement within expected time periods of the postsecondary school
placements, employment, or other outcomes contemplated as plan goals.
Success would result in full funding. Failure would
result in a pro rata, across-the-board reduction in funding, with
both (or all) involved service systems forfeiting the same percentage
of expected funds and, as important, with no room for finger pointing
or blame-shifting. The service systems would succeed or fail, swim
or sink, together.
For this approach at adding incentives to transition
services to be successful, two things must happen. First, the parties
to each pilot project must be able to develop, ideally with input
from youth with disabilities and their families, predetermined,
objective, and measurable outcomes whose achievement can be verified
with a minimum of subjectivity. Second, in those cases in which
these predetermined outcome goals are not achieved, the system must
prove sufficiently robust to follow through on imposition of the
specified financial penalties. If these criteria can be satisfied,
consideration should be given to extending the approach to all participants
in the transitional services process around the country.
d. CURRENT PROSPECTS
At the federal level, prospects for effective cross-agency,
multiservice system cooperation seem better than they have been
in some time. The spirit of the Olmstead implementation process
embodies a recognition that our most pressing and intractable problems
transcend agency lines or jurisdictional boundaries. NCD hopes that
this spirit will extend to the provision of transitional services,
not merely in the deinstitutionalization context of Olmstead
but in the area of school-to-work transition as well, where interagency
cooperation is badly needed and long overdue.
2. YOUTH LEADERSHIP NETWORK FOR YOUTH WITH DISABILITIES
As discussed in last year's report, the National Youth
Leadership Network (YLN) was a five-year project involving the Departments
of Education, Labor, and Health and Human Services, along with the
SSA and NCD The project is research-oriented and designed to include
annual leadership training for youth ages 16 through 24 with disabilities.
YLN conferences provide leadership training through
discussions of ways young people can help the federal agencies to
determine and update the impact of barriers to successful adult
life; identify what works and what are promising practices; and
highlight actions that should be implemented at the national, state,
and local levels to incorporate and reflect the perspectives of
youth with disabilities.
In last year's status report, NCD commended the line
agencies for their foresight and sponsorship of this initiative.
NCD also encouraged the Administration to support such recommendations
for improvement that result from the evaluation component of this
youth leadership project.
Amid the new initiatives coming out of the Administration,
NCD believes it would be valuable for the Administration to review
and comment on the status and results of the YLN initiative and
its viability and, more broadly, to comment on its relevance to
the New Freedom Initiative. In this context, we hope the Administration
can further address the issues surrounding transition for youth
with disabilities, including methods for identifying and targeting
necessary specialized services, means for fully integrating youth
with disabilities into the nation's employment training and placement
systems, and ways for ensuring that economic trends and labor-demand
forecasts will be appropriately used in the development of training
programs, employment development, and job placement strategies.
3. EXPANDING EMPLOYMENT OPPORTUNITIES FOR YOUNG PEOPLE
WITH DISABILITIES
At the outset, NCD recommends that the Administration,
through the Office of Disability Employment Policy (ODEP) or such
other entities as may be deemed suitable, systematically review
the technical assistance resources available to and needed by the
various employment-related agencies and programs in order for them
to adequately respond to the needs and aspirations of young people
with disabilities. Here we note that historically, increases
in unemployment, such as our nation is now experiencing compared
with the levels of the late 1990s, have their greatest impact on
younger workers. If our nation undertakes measures to mitigate the
disproportionate impact of reduced economic growth on youthful,
often low-skilled entrants to the labor market, such measures must
proceed with a recognition that among the futures at issue are those
of many young people with disabilities. Therefore, any such national
policy initiatives should take account of the barriers of discrimination,
the need for AT, and other service and reasonable accommodation
needs faced by these new workers.
Any such initiatives must also ensure that outreach
and recruitment efforts encompass young workers and would-be workers
with disabilities, and should ensure that materials, processes,
and facilities are made accessible and culturally sensitive.
On October 25, 2000, former President Clinton signed
an Executive Order84 providing for
improved access to employment and training for youth with disabilities.
This Executive Order sought to improve employment outcomes for persons
with disabilities by addressing, among other things, the education,
transition, employment, health, rehabilitation, and independent
living issues affecting young people with disabilities. Executive
departments and agencies were tasked to coordinate and cooperate
with the Presidential Task Force on Employment of Adults with Disabilities
to strengthen interagency research, demonstration, and training
activities relating to young people with disabilities; create a
public awareness campaign focused on access to equal opportunity
for young people with disabilities; promote the views of young people
with disabilities through collaboration with the youth councils
authorized under the Workforce Investment Act; increase access to
and use of health insurance and health care for young people with
disabilities through the formalization of the federal Healthy and
Ready to Work interagency council; increase participation by young
people with disabilities in postsecondary education and training
programs; and create a nationally representative youth advisory
council, to be funded and chaired by the Department of Labor, to
advise the Presidential Task Force in conducting these and other
activities.
NCD recommends that the Administration indicate
its views regarding the efficacy of these measures and indicate
the appropriate structural arrangements for bringing these goals
about. In this connection, the DOL recently awarded more than
$11 million in grants to promote the New Freedom Initiative's commitment
to integration of persons with disabilities into the employment
mainstream of our nation.85 NCD welcomes
these initiatives and particularly commends the department for expressly
including youth with disabilities in the scope of these efforts.
Along related lines, the Workforce Investment Act
of 1998 (WIA), as just noted, created local workforce investment
boards to guide the development of programs, to foster necessary
connections and relationships, and to set priorities for program
development and use of funds. Recognizing the special problems faced
by youth in the competitive labor market, even in the good economic
times that marked passage of the Act, the WIA created youth councils.
NCD recommends that the Administration, through ODEP or other
appropriate entities, report on the status and function of these
councils and indicate its views concerning their roles in future
youth employment development efforts.
Overall, NCD recommends that the approach adopted
by the Administration in orchestrating implementation of Olmstead
could prove valuable in comprehensively identifying the barriers
to training and employment faced by young persons and in developing
interagency strategies for removing these barriers.
Chapter 7
Employment
1. INTERAGENCY COORDINATION
The Office of Disability Employment Policy (ODEP),
formerly the President's Committee on Employment of People with
Disabilities, is now established within the Department of Labor
(DOL), under the leadership of an assistant secretary. The office
has a unique opportunity to bring coherence and accountability to
the disability employment programs operated or funded under the
auspices of the department, as well as to increase the awareness
and responsiveness of mainstream employment development programs
to the need for, and the issues involved in, making these programs
accessible to all Americans seeking the dignity of work.
But commensurate with its opportunities, ODEP also
faces major challenges if it is to succeed in its mission and avoid
becoming just another set of initials on an organizational chart.
Some of the specific program issues ODEP faces will be enumerated
in this chapter. At the moment, it is enough to say that to be successful,
the office will have to coordinate its work effectively, not only
with other DOL units but also with other federal agencies and with
the programs they administer. Some of the key coordinate agencies
in other departments with which ODEP will need to work effectively
are the vocational rehabilitation (VR) program administered by the
Rehabilitation Services Administration (RSA) in the Department of
Education (ED); the Employment Networks operating through the Social
Security Administration (SSA) under the authority of the Ticket
to Work and Work Incentives Improvement Act of 1999 (TWWIIA); the
Office of Personnel Management (OPM); the Equal Employment Opportunity
Commission (EEOC); and the Department of Justice (DOJ).
The issues are crosscutting. For example, efforts
to substantially reduce levels of unemployment among persons with
disabilities will require significant attention to basic skills
training and to specific job and skills training opportunities that
are keyed to the areas of labor shortage or expected growth in labor
market demand in our economy. Much of the responsibility and funding
for this training rests with the state VR agencies operated under
the federal-state VR program. Oversight responsibility for the state
VR program rests with the RSA. As coequal agencies, a unit of the
DOL has no authority to tell a unit of the ED what to do, but with
coordination through the interagency committee and with other collaborative
measures and relationships, it should prove possible for such entities
as these two to identify and pursue common goals, to act jointly
where appropriate, and to speak in unison to support any ameliorative
legislation that might be necessary. Admittedly, such coordination
between and among federal agencies, even among units of the same
agency, has not been a hallmark of federal program administration
over the years, but the creation and responsibilities of ODEP offer
the opportunity for a new start.
The atmosphere of coordination and cooperation among
cabinet-level departments that currently surrounds the Olmstead
implementation efforts may contribute to the ability of diverse
agencies and units, with different agendas, different cultures,
and separate budgets, to work together in the identification and
pursuit of common goals. NCD sincerely hopes that the momentum for
cooperative and innovative responses to problems that are larger
than any one agency or any single jurisdiction will continue to
prevail and will mark and distinguish federal activities in the
disability policy realm in the months and years to come.
2. BASELINE STATISTICS
As discussed in chapter 1, the absence of reliable
statistical data on disability employment levels and employment
trends represents a significant impediment to the forging of sound
public policy. In last year's status report, NCD recommended that
ODEP initiate and support the development and implementation of
a measurement system that tracks and reports on the employment status
of Americans with disabilities on at least an annual basis. Collaboration
with the Bureau of the Census in its efforts to improve disability-related
information collection in the Current Population Survey (CPS) represents
one way of bringing this important initiative to fruition and represents
one useful approach to improving current data collection instruments.
More immediately, the HHS Olmstead preliminary
implementation report Keeping The Promise86
reports on parallel efforts to refine employment data collection
undertaken by ODEP's coordinate DOL agency, the Bureau of Labor
Statistics (BLS). The ability to bring these entities and other
interested parties within the government together represents another
excellent test case for cooperation and coordination in the pursuit
of shared objectives and in the effort to meet common needs.
In connection with the problems posed by questionable
employment statistics, NCD recommends that ODEP work to ensure
that all DOL units review their current research-funded grants and
contracts to make certain that federal funding is not provided to
support the production of research reports regarding employment
of people with disabilities that rely exclusively on the Survey
of Income and Program Participation (SIPP) or the CPS or other federal
statistical sources containing major shortcomings.
3. TICKET TO WORK AND WORK INCENTIVES IMPROVEMENT
ACT
a. WORK INCENTIVES
TWWIIA87 was produced
through the combined efforts of the Clinton Administration, Congress,
and the disability community. On December 17, 1999, it became the
last major piece of federal legislation signed into law in the twentieth
century.
TWWIIA consists of two distinctive but closely intertwined
parts. First, by creating new entities for providing job-training
and job-seeking assistance to individuals with disabilities who
receive Social Security Disability Insurance (SSDI) or Supplemental
Security Income (SSI) benefits, and by creating financial incentives
for success on the part of the Employment Networks administering
the "Ticket," the law created new methods and new resources for
job training, job seeking, and job placement. Through its use of
tickets (in effect, vouchers) issued to eligible individuals with
disabilities for use by them in obtaining employment services from
eligible Employment Networks of their choice, the law gave job seekers
and employment service recipients unprecedented autonomy in selecting
their own services and service providers.
The second major thrust of TWWIIA, beyond strengthening
and energizing employment-related resources, is that the work incentives
portion of the law attempts to reduce one of the major barriers
to employment for persons with disabilities: the potential loss
of health insurance once employment is obtained. By reason of their
status as SSI or SSDI recipients, TWWIIA participants are eligible
for (and most do receive) health insurance coverage under the Medicaid
or Medicare programs. Owing to the links between eligibility for
cash benefits under these programs and entitlement to this health
insurance coverage, many people with disabilities who lose cash
benefits as a result of returning to work also soon find themselves
deprived of their health insurance as a result. Even when work-returnees
can obtain insurance in the private sector, through their employers
or through inclusion on a spouse's policy, the extent of such coverage
is often insufficient to meet their ongoing or specialized medical
needs.
To deal with the work disincentives created by the
employment-health insurance link, TWWIIA created a number of means
by which individuals with disabilities could retain their federally
funded health insurance for substantial periods of time after ceasing
to qualify for cash benefits because of income from work. For persons
entering employment from the SSDI program, Medicare benefits can
now be retained for nearly nine years. For those entering employment
after receiving SSI payments, the situation can be more complex,
with continued eligibility for Medicaid benefits depending on states'
exercise of the discretion TWWIIA grants them to raise the Medicaid
income eligibility thresholds.
At a time when many states are financially hard-pressed,
their willingness to broaden Medicaid coverage in this way, as well
as their ability to provide the applicable state matching funds,
may be open to question. Even states that have implemented the Medicaid
buy-in program pursuant to the use of Medicaid infrastructure grants
under TWWIIA88 may find it increasingly
difficult to maintain the improvements they have adopted or are
contemplating. Accordingly, NCD recommends that the Administration
develop and Congress enact legislation to increase the federal share
of Medicaid funds for those states that implement TWWIIA-based reforms
in their Medicaid programs and that achieve predetermined levels
of return to work and job retention among their SSDI- and SSI-recipient
citizens taking part in the program.
b. EMPLOYMENT NETWORKS
The Employment Networks created under TWWIIA receive
payment for their services in a unique way. Instead of receiving
per capita, fee-for-service, fixed-periodic-fee, formula-funding,
or other traditional types of funding, TWWIIA Employment Networks
are reimbursed under a "milestones" system, with maximum payment
being available if program participants obtain employment within,
and retain employment for, specified periods of time.
If TWWIIA is successful, the service-provider funding
mechanism it uses may well become a model for other government-supported
employment services, within and beyond the disability sector. Milestone-based
and other performance- and outcome-based funding strategies are
likely to become increasingly popular in a number of service sectors
outside of employment. Use of such a mechanism under TWWIIA reflects
the determination by Congress that such traditional funding mechanisms
as flat per capita reimbursement or all-or-nothing reimbursement
based on "successful outcomes" are inadequate to meet the needs
of a hard-to-place job-seeking population or are inadequate to sufficiently
motivate the employment services providers who work with the SSI/SSDI
population.
As intriguing as this new funding model is, it also
poses real risks. What economic incentive do Employment Networks
have to work with persons who have the most significant disabilities
and with people who need costly AT if the networks' potential reimbursement
cannot be increased sufficiently to defray their added costs and
to yield an acceptable rate of return? The Work Incentives Advisory
Panel, authorized by TWWIIA and operated by the SSA, is monitoring
a variety of issues bearing on the efficacy of the TWWIIA program
model. Its Design Evaluation Subcommittee is scheduled to issue
a report on adequacy of incentives early in 2002. If this report
gives any indication of "creaming" on the part of Employment Networks
(that is, of their targeting their recruiting efforts or selection
criteria to people with relatively less significant disabilities
or with small or nonexistent specialized service needs), the SSA
and the Administration should be prepared to move quickly to implement
or to recommend to Congress such reforms as are necessary to remedy
this situation.
c. TECHNICAL ASSISTANCE AND ADVOCACY
In addition to the state Medicaid infrastructure grants
noted above, TWWIIA contains authorization and funding for a number
of technical assistance, planning, and related initiatives. One
of the potentially most important of these is the benefits planning,
assistance, and outreach program (BPAO). The BPAO offers grants
for legal assistance, sometimes including state-based protection
and advocacy (P&A) systems, to provide benefits counseling,
information, and other related forms of assistance (excluding litigation)
to TWWIIA participants. Because of the inordinate complexity of
the work anti-incentive provisions in the law, BPAO should prove
a valuable resource for individuals seeking services and a significant
asset to program management and oversight.
TWWIIA is hardly unique, even among employment programs,
in presenting legal and procedural complexities to individuals with
disabilities seeking to access and benefit from its services. In
many employment services, people with disabilities continue to face
major barriers: disproportionate investment of program resources
in eligibility determinations; evaluations that use inadequate criteria,
procedures, or technology; inaccessibility; and reasonable accommodations
and exclusionary employer screening practices, just to name a few
of the most pervasive. The kinds of information, advice, support,
and focused expertise about employment-related issues that the P&As
and other technical assistance providers are likely to develop and
disseminate under the TWWIIA program could prove valuable in other
settings as well.
Accordingly, NCD recommends that in the reauthorization
of the Rehabilitation Act, the Administration and Congress give
consideration to broadening the scope of resources in the employment
support area. Congress should establish a pilot program offering
a limited number of competitive grants to P&As or other nonprofit
organizations to operate BPAO-type programs that deal with the broad
range of employment issues, resources, and rights, with the resources
and services of these programs being available to all jobseekers
or jobholders with disabilities and applicable to all employment
programs.
d. OTHER OVERSIGHT PRIORITIES
For TWWIIA to be fully effective in returning SSDI
and SSI recipients to the workforce, a significant number of institutions
and entities, some old and some newly created by the statute, will
have to work effectively and cooperatively. NCD is confident that
the SSA, aided by the advisory panel noted above, will monitor and
evaluate all the component parts of the system, ranging from the
ability of its own staff to provide clear and adequate information
about the new rules to the role of state VR agencies in working
with, or in some cases in serving as, Employment Networks. Where
any serious problems are found, NCD is hopeful that the SSA will
move promptly to correct them or even to seek congressional action
to correct them without waiting for the completion of the full five-year
reporting period specified in the law.
One area of concern that should be addressed on an
ongoing basis relates to the focus of the TWWIIA effort. The new
program is organized around the creation of resources at the jobseeking
and employment-reentry points. But as the SSA's own statistics indicate,
among those few SSDI or SSI recipients who do return to work, job
tenure remains a problem, with a sizable number returning to the
benefit rolls within a few years. The program does not yet appear
to address the ongoing need for follow-up, job retention, and career
advancement services (including in the area of new technology) that
many workers with disabilities need. Ultimately, these issues will
need to be addressed, and, ironically, the more successful TWWIIA
is in returning people to the workforce, the greater and the larger
will that need be.
4. FEDERAL HIRING INITIATIVES
a. PERSONS WITH PSYCHIATRIC DISABILITIES
In its 1999-2000 annual report, NCD reported on two
Federal Government initiatives designed to broaden employment opportunities
available to people with psychiatric disabilities. On June 4, 1999,
an Executive Order was issued requiring that individuals with psychiatric
disabilities be given the same federal hiring opportunities as people
with significant physical disabilities or people with mental retardation.
Subsequently, on March 17, 2000, the OPM issued proposed regulations
to create a new governmentwide excepted appointing authority for
individuals with psychiatric disabilities. This authority broadened
the category of people who can noncompetitively acquire otherwise
competitive civil service status after two years of successful service,
thus providing individuals with psychiatric disabilities the same
hiring opportunities already offered to individuals with mental
retardation or significant physical disabilities.
Most recently, as discussed in the December 2001 HHS
Olmstead report, the OPM announced measures designed to further
increase employment opportunities in the Federal Government for
people with disabilities and to create more uniformity in the provisions
applicable to persons with psychiatric and physical disabilities.
NCD commends the OPM for its efforts and believes
it would be useful for the OPM to report to Congress and the public
on the results of its efforts to date, on the recruitment or other
outreach measures it has adopted, and on the tenure and upward mobility
of persons who have entered federal employment as a result of these
programs. NCD particularly recommends that OPM indicate the applicability
of these competitive-appointment exceptions and exemptions to the
promotion and advancement opportunities available to persons with
disabilities in each of the three categories--significant physical
disability, mental retardation, and psychiatric disability--covered
by these programs.
b. REASONABLE ACCOMMODATIONS
NCD also commends the OPM for its announcement on
December 11, 2001, of rules requiring all federal agency job vacancy
notices to include language apprising applicants of the availability
of reasonable accommodations.89 In
light of these notice requirements, NCD believes that a full assessment
of the reasonable accommodations procedures and practices used by
the Federal Government to implement hiring and promotion policy
could prove quite valuable. Accordingly, we urge OPM, acting in
concert with OMB or such other entities as may be appropriate, to
study and report on the level of awareness among federal personnel
officers regarding the meaning and availability of reasonable accommodations;
the budgetary strategies available for providing reasonable accommodations;
the time frames and authorization processes associated with the
selection and implementation of reasonable accommodations; and the
methods used by agencies to obtain and evaluate employee input into
the choice of accommodations.
5. DEMONSTRATION PROJECTS
In last year's report, NCD reported on a number of
interagency and public-private initiatives and demonstration projects
designed to increase employment opportunities for people with disabilities
and to break down barriers to the employment of people with disabilities.
Several of these initiatives also were intended to increase the
ability of state-based and other mainstream employment services
to incorporate people with disabilities into their activities and
programs.
Agencies included in these demonstrations were the
SSA, the HHS, the DOL, and the ED. The programs included award by
the ED of six systems-change grants to establish models of improved
cooperation and coordination among state vocational rehabilitation
programs, public employment training programs, and other related
programs. In addition, the SSA was working under cooperative agreements
with 12 states to develop innovative projects to help adults with
disabilities reenter the workforce. Moreover, prior to its absorption
into the new ODEP, the President's Committee on Employment of People
with Disabilities worked to coordinate a commitment by the U.S.
Chamber of Commerce, the Society for Human Resource Management,
and dozens of private sector companies to support several initiatives
to advance the employment of people with disabilities.
Based on the New Freedom Initiative, as reflected
in the Olmstead report, Administration and the nation clearly
stand on the threshold of an exciting array of potentially innovative
and productive employment initiatives involving federal agencies
and a significant number of public and private sector partners.
In the interests of knowing what works and because of the importance
of continuity, NCD recommends that all the agencies spearheading
last year's initiatives provide updates on whether these programs
continue in operation and on what results or methodologies they
have yielded.
6. ONE-STOP CAREER CENTERS
In 1998, Congress adopted the Workforce Investment
Act (WIA),90 which, among other things,
sought to simplify the bewildering web of federal labor market and
employment programs. From the standpoint of increased efficiency
and greater customer satisfaction, one of the WIA's key ways of
doing this was the establishment of one-stop centers where jobseekers
could access and obtain all relevant public services and information,
could handle all key documentation and access all necessary databases,
and could make all necessary contacts from one central location
in their area.
Although the parallel VR system for individuals with
disabilities was not abolished or merged into the one-stops (in
fact, the Rehabilitation Act Amendments of 1998 constitute Title
IV of the Workforce Investment Act), the one-stops were expected
to be available and accessible to all persons, including persons
with disabilities, and they and the state VR systems would establish
cooperative working relationships to pool their strengths and resources
on behalf of jobseekers with disabilities. Serious unanswered questions
persist about whether and to what extent such pooling of resources
or combining of strengths has in fact taken place
For example, informal reports from people around the
country paint a troubling picture of one-stop center inaccessibility.
Among other problems, electronic and information technology (E&IT)
used for job searches and other activities is frequently not accessible
to persons with disabilities. As discouraging, one-stop center officials
are reported in several instances to have asserted that the funds
for making their E&IT accessible should not have to come from
their regular funding but from extra funds, specifically appropriated
or allocated for accessibility purposes.
No major litigation regarding the accessibility of
one-stop centers, invoking either Section 504 or Section 508 of
the Rehabilitation Act, is yet known to have commenced. But rather
than await such litigation, NCD recommends that the DOL move
swiftly and decisively to clarify the applicability of federal civil
rights laws, including Sections 504 and 508, to the facilities and
technology of the one-stop centers and to ensure that accessibility
requirements are implemented with as much energy as any other of
the legal standards that bear on the operation of these centers.
In this connection, the DOL should also review the technical
assistance currently available to one-stops for purposes of ensuring
that the centers understand their responsibilities under the law
and making certain that the centers will not inadvertently overestimate
the costs or difficulty of accessibility because of lack of adequate
information regarding its principles.
7. LICENSING AND FUNDING
Elsewhere in this report, we argue for vigorous enforcement
of federal civil rights laws through the funding and regulatory
roles played by the Federal Government. Where public funds help
to defray the cost of an activity, the recipients of such funds
(whether or not the funds are denominated as "federal financial
assistance") properly should be expected to abide by civil rights
laws, just as they are expected to adhere to a host of other important
laws. Similarly, NCD believes that in certain cases in which the
federal role involves the regulation or licensing of activities,
it is likewise reasonable to expect compliance with all laws by
those so regulated and protected by the government, by its licensing
and regulatory authority, against competition.
A number of legal complexities surround the broad-based
application of these principles. Recent court decisions have, for
example, drawn sharp distinctions between the authority of the FCC
to enforce civil rights and its jurisdiction to mandate any form
of "affirmative action."91 Whereas
a fine line may in some instances exist between protecting civil
rights and requiring entities to engage in affirmative activities
that go beyond the traditional notions of the meaning of nondiscrimination,
NCD strongly believes that accessibility of E&IT paid for with
federal funds, no less than accessibility of buildings and facilities
constructed with federal support, falls clearly on the civil rights
side of that line.
NCD also recognizes that the authority of the government,
even when paying the freight, may be far less in its dealings with
private sector partners than with units of government. Elsewhere
in this report, NCD recommends that the DOJ comprehensively study
the question of whether the Federal Government is making optimal
or consistent use of its funding relationships to maximize its leverage
on behalf of accessibility. At least in those circumstances in which
the nature of the relationship meets the standards for federal financial
assistance established under Section 504 or the purpose of the relationship
includes information dissemination activities that bring the E&IT
used by the private entity within the scope of Section 508, suggesting
that adherence to principles of accessibility can fairly be demanded
and expected is surely not unreasonable.
But even apart from such a DOJ study, the implications
of accessibility for employment and for access to employment opportunities
are especially pressing and immediate. Thus, pending the DOJ'S action
on this recommendation, NCD recommends that each federal agency
involved in job-creation efforts or in the funding of programs that
create or support jobs involving E&IT independently evaluate
the extent of its responsibility and the scope of its authority
for ensuring the accessibility of these programs, jobs, and information
resources to all the taxpayers who help fund them.
8. TAX INCENTIVES
The past year has demonstrated the Administration's
strong belief in the role of tax policy as an engine for stimulating
economic growth and for encouraging employment. Indeed, recognizing
the enormous power of tax policy, the Administration's Fall 2001
economic stimulus proposals for reviving the economy placed heavy
emphasis on tax relief as the lever for unleashing and renewing
the job-creation capabilities of American industry and commerce.
In light of this precedent, it is appropriate to ask what tax incentives
could hold value for enhancing the employment of persons with disabilities.
Although the Administration and Congress have on balance
favored tax rate reductions as the approach of choice to tax policy,
all of the modifications to the Internal Revenue Code adopted over
the past several years have included targeted provisions aimed at
addressing matters that are not responsive to changes in tax rates
alone. The timeliness of tax reforms aimed at incentivizing the
employment of persons with disabilities is heightened by the fact
that, pursuant to Section 303 of TWWIIA, the Government Accounting
Office (GAO) is currently launching a study of existing disability-employment
incentives currently in the law. NCD recommends that the GAO
analyze these provisions--including the disabled access credit,92
the architectural and transportation barriers removal deduction,93
and the disability-related portions of the work opportunity credit94--with
a view to measuring their economic and social impact along with
their cost to the Treasury and with a view to eliminating historically
explicable but no longer relevant limitations on their availability.
Examples of such outmoded provisions include limitation of the
work opportunity credit to those persons with disabilities who have
received SSI (not SSDI) in the past two months or who have completed
a program of vocational rehabilitation and been certified by the
state VR agency (not by a TWWIIA Employment Network or by a one-stop
center). Another example is the applicability of the barrier-removal
deduction only to a restricted category of physical barriers but
not to communications or information-access barriers.
In maintaining such limitations on the scope of these
provisions and on their use by business, the law does not reflect
any policy. Rather, such restrictions as these simply reflect the
fact that these provisions were enacted at a time when the concept
of E&IT accessibility or communication barriers to access had
not yet entered our lexicon or our consciousness.
Whereas the legislation authorizing the study does
not explicitly mandate their inclusion, NCD hopes that the GAO will
find it possible and within the scope of its assignment to include
employee- as well as employer-based incentives in its study, particularly
at a time when bottom-line pressures may force employers to cut
back on fringe benefits and may lead some employers to be more resistant
to the provision of even tax-deductible reasonable accommodations
than might formerly have been the case. Tax incentives aimed directly
at employees (rather than at their employers), such as the impairment-related
work expenses deduction,95 may make
the difference between ability and inability to work in an increasing
number of cases.
Chapter 8
Welfare Reform
In 1996, "welfare as we know it," to use former President
Clinton's famous campaign phrase, did indeed come to an end with
the passage of the Personal Responsibility and Work Opportunity
Reconciliation Act (PRWORA).96 Now,
as PRWORA faces reauthorization in the second session of the 107th
Congress, welfare as we have come to know it is once again under
the microscope of congressional and public scrutiny.
As the law comes up for review and reauthorization,
with many people having exhausted their five years of eligibility
for welfare assistance, Congress and the Administration come to
their task in a changing economic climate and with many new issues
and questions to be confronted. Some of those questions, many of
which have not been featured in discussions of welfare reform up
to now, involve the interplay between welfare and disability. Specifically,
these questions relate to the connection between so-called welfare
and specialized disability-oriented income maintenance programs
and to the ability of, and the mechanism for, state welfare reform
systems to provide the technical assistance and support services
that recipients with disabilities may need to enter and thereafter
retain and advance in employment.
One of the most intriguing features of PRWORA is the
flexibility it accords to states in the ways they implement welfare
reform and in the system of reimbursement established to encourage
and reward success. Typical of this approach are provisions allowing
states to retain unspent funds if they achieve specified welfare
caseload, work, and other goals and provisions linking the availability
of recipient time-limit extensions and the waiver of other provisions
to states' success in meeting a number of program targets and outcome
goals.
Within this framework, one key question to ask relates
to the different ways states may have attempted to link their welfare
reform systems and their various disability programs. In its reauthorization
deliberations, Congress should seek information on the extent to
which job training, counseling, transportation services, day care,
and other components of welfare reform programs have included or
used screening for disabilities that might complicate program participation
or jeopardize success; the degree to which states have helped or
have required subcontractors to provide reasonable accommodations
(ranging from accessible vehicles to specialized child care) to
facilitate the participation of welfare recipients with disabilities
or welfare recipients who are caregivers for persons with disabilities
in return-to-work programs; and the efforts that have been made
to enlist the services and resources of the VR system on behalf
of welfare recipients who by reason of disability may also be eligible
for these services.
NCD hopes that in its consideration of reauthorization,
Congress will seek and obtain testimony and information on these
issues. Only in that way can the impact of welfare reform on recipients
with disabilities (particularly recipients with hidden disabilities)
or on families having members with significant disabilities be fully
assessed, and only with the elucidation of such information can
consensus be reached over the priorities for any new legislation
in this area.
The involvement of the VR system or other disability-oriented
service systems in the welfare reform effort might create new coordination
and allocation-of-responsibility issues; however, it seems likely
that, properly brought to bear, the resources and expertise of these
service systems could contribute to the assessment of disabilities,
including hidden disabilities, in a number of instances and could
increase the likelihood of success in the return-to-work efforts
of individuals with disabilities. Pending elaboration of what has
been tried and accomplished in this area, we do not offer any specific
recommendations at this time but do expect to be able to do so as
the public discussion proceeds.
Attention to the effects of welfare reform has thus
far tended to concentrate on the reductions in caseloads and in
the welfare rolls that have occurred since passage of the law. But
with the passage of time, information on other outcomes, including
the job tenure of former recipients, will become increasingly necessary.
For former recipients with disabilities, such information may be
particularly important, bearing as it does on the follow-on and
support services, from wherever they ultimately come, that these
former welfare recipients will need in order to become long-term
productive members of the economic mainstream.
In connection with the flexibility PRWORA accords
to the states, one of the most interesting features of the law's
structure is its approach to waivers. In a number of settings, the
extent to which extensions are available for the five-year lifetime
limits on receipt of Temporary Assistance to Needy Families (TANF)
or the availability of waivers of other requirements under the law
hinge on a state's success in meeting or exceeding a variety of
program targets. Congress may wish to consider adding provisions
that reward states, either with administrative flexibility or with
extra funds, based on the extent of their efforts and success in
developing appropriate and reciprocal links between their welfare
reform and disability services systems. Such links cannot but prove
beneficial to all parties by increasing the resources available
for persons with disabilities or persons with major caregiving responsibilities
to enter, reenter, and remain in the workforce and by increasing
the likelihood that work with such persons will have positive, long-term
results. When it comes to working with recipients with disabilities,
state welfare reform systems should not have to reinvent the wheel.
Measures should be taken to ensure that the resources and expertise
of the state VR and other disability services programs are available
to contribute to the successful outcomes that all seek.
Chapter 9
Housing
Shortages of affordable housing are widely recognized
to represent one of the major problems facing persons of moderate
and low incomes in our country today. For persons with disabilities,
this problem may be even more acute, because affordability for them
is conditioned by inaccessibility, availability, and discrimination.
Put another way, the supply of otherwise affordable housing that
many Americans with disabilities can purchase, rent, or even visit
is limited by the fact that much of our housing stock is not accessible
and, even if it is accessible, discrimination may stand in the way
of its availability and occupancy.
Housing plays a profound role in all aspects of people's
lives. The time and distance involved in getting to and from work
(which are both reported to have increased during the 1990s); the
amount of discretionary income remaining for education, health care,
or even food and clothing after housing costs have been met; the
level of physical safety and personal security people feel in their
environments as a result of the kinds of neighborhoods and communities
in which they live; the proximity to toxics or other environmental
hazards; and the quality of education readily available to one's
children all, along with other elements of life, are directly and
powerfully related to the options that people have in housing.
Any systematic effort to increase the stock of accessible,
affordable, and available housing for persons with disabilities
must take account of the overall housing situation faced by the
United States. That is a situation that contains some remarkable
and some disheartening components. For Americans as a whole, home
ownership stands at or near historic highs. An October 2000 Department
of Housing and Urban Development (HUD) press release indicated that
more than two-thirds of Americans lived in homes that they or their
families owned. Levels of home ownership, traditionally considered
a bellwether of social progress and stability and the hallmark of
the American dream, have also risen impressively among minority
groups. But among the minority group of Americans with disabilities,
rates remain shockingly low, languishing in the single digits, according
to another recent study.97
The significance of affordable, available, and accessible
housing has received some recognition from the Administration. Pursuant
to Executive Order 12892, the President's Fair Housing Council has
been created, and its establishment served as the occasion for statements
of commitment to fair housing enforcement on the part of leading
officials, including the secretary of HUD and the attorney general
of the United States. More recently, the importance of housing issues
has again been acknowledged by the Administration in its preliminary
Olmstead implementation report issued in December 2001.98
HUD was a participant in the agency self-evaluation process leading
to that report. HUD'S involvement and the considerable attention
the report paid to plans and recommendations for upgraded enforcement
and other program enhancements in the housing and fair housing areas
reflect the awareness that our ability to meet the aspirations of
people with disabilities and older persons for deinstitutionalization
or to remain in their own homes depends on the availability of adequate
housing for them. Unless communities across the country can meet
this need for housing, the aspiration for and the momentum toward
community living surely will be blunted to a considerable degree.
NCD has long maintained a profound concern over housing
issues and has addressed its attention to the matter in a number
of reports and studies. In the report of its 1996 disability summit,
Achieving Independence, NCD made a number of recommendations
regarding housing and the Federal Government's enforcement role.
Our 1999-2000 annual report reviewed a number of policy activities
undertaken by the Federal Government in 2000 relating and responding
to many of NCD'S recommendations from the Achieving Independence
report. Most recently, NCD released its major report Reconstructing
Fair Housing99 on November 6,
2001. This report catalogued serious, pervasive, and persistent
weaknesses and failures in the Federal Government's enforcement
of nondiscrimination laws in the area of fair housing. These findings
and recommendations will be summarized in this chapter.
Before proceeding to a discussion of the specific
issues raised by the Reconstructing Fair Housing report,
it is important to note that the report covers the period ending
September 30, 2000. The patterns and practices the report finds
are long-standing and implicate successive administrations of all
parties and persuasions. The existing and deep-seated problems Reconstructing
Fair Housing discloses will require sustained, concerted, and
high-level attention if this tragic legacy of missed opportunities
is truly to be overcome.
1. FAIR HOUSING AND EQUAL OPPORTUNITY
NCD commends HUD for its receptivity to our report
and for its willingness to disseminate the report to its regional
offices and enforcement staff. Considering the highly critical nature
of many of the report's findings, this openness is particularly
welcome. The task now is to bring about the improvement for which
the report calls.
a. ORGANIZATION OF THE ENFORCEMENT EFFORT
HUD is responsible for enforcing three major civil
rights laws: the Fair Housing Act of 1968100
(which applies to the sale and rental of all public and most private
housing), the Fair Housing Amendments Act of 1988101
(which adds "handicap" and familial status--the presence of children
in the household--to the list of those protected against housing
discrimination), and Section 504 of the Rehabilitation Act (which
bars discrimination, including discrimination in housing, by recipients
of federal financial assistance). Additionally, HUD has a role through
Title II (public housing and certification of state building
codes) and Title III (private sector) in enforcing the ADA.
Primary responsibility for enforcement is vested in
HUD's Office of Fair Housing and Equal Opportunity (FHEO), but various
cycles of reorganization, decentralization, and recentralization
have occurred over the years. HUD also has an Office of Disability
Policy, but its role in the enforcement process and its relationship
to other units of the department are not entirely clear. Enforcement
resources budgeted for and committed to FHEO have declined steadily
since 1989 and stand at approximately half the levels of that year.
b. COMPLAINT HANDLING AND CASE PROCESSING
Because the Fair Housing Amendments Act (FHAA) and
Section 504 differ in the procedures, jurisdictions, statutory time
frames, and other variables applicable to their enforcement, some
variation in complaint handling and case processing must be anticipated
between the two laws. Recognizing this threshold problem, HUD has
undertaken to prepare new informational materials for the public
and for those involved in the housing industry aimed at clarifying
the department's jurisdiction and enforcement role. Although such
information will be of value, any resultant increase in the number
and quality of complaints filed may lead only to further frustration,
alienation, and public distrust of the fair housing enforcement
system unless accompanied by thoroughgoing reforms in the ways HUD
processes, tracks, resolves, and, where appropriate, refers complaints.
The levels of this lack of confidence that Reconstructing
Fair Housing revealed are not difficult to understand in light
of the underlying data. The average age-of-case at disposition had
mushroomed to 497 days, nearly five times the 100-day benchmark
period fixed by Congress. Even when cases were concluded by HUD,
few ended in findings of "cause" and fewer still in any adjudication
or enforcement action being taken.
By 1999, after having become the fastest growing complaint
category, disability discrimination complaints, representing 42
percent of all complaints received, came to constitute the most
frequent type of complaint filed with the department. Yet, HUD lacked
the most basic mechanisms for disseminating legal or other guidance
to its enforcement personnel, had no system for informing staff
of best practices in case investigation, and had even failed to
apply some of the investigative and management tools developed in
the FHAA area to its work under Section 504. Finally, state and
local fair housing enforcement agencies, supported under HUD's Fair
Housing Assistance Program (FHAP), actually resolved and disposed
of cases more quickly than the department did.
c. FUNDING
In connection with efforts to upgrade HUD's fair housing
enforcement, the department requested an increase in funding for
fair housing and equal opportunity enforcement in its FY 2002 budget
request. Congress did not include these additional funds in the
HUD budget appropriation. Observers report that, pending improvements
in other long-standing management deficiencies within the department,
Congress is disinclined to grant such increases.
Whereas NCD understands that the means available for
Congress to express its disapproval of any executive branch agency
are relatively few, with budgets being among the chief means for
enforcing its wishes, we regret that people with disabilities and
other groups who look to fair housing enforcement as a tool for
protecting their rights should be held hostage to problems that
they did not create and certainly cannot solve. Especially in light
of the data collected in Reconstructing Fair Housing concerning
declines in funding for enforcement during the 1990s, NCD hopes
that the Administration will continue to seek funding for meaningful
increases in fair housing enforcement, either through a supplemental
budget request or through the achievement of savings in other HUD
programs that could free up funds for reallocation to the department's
equal opportunity work.
Another area in which funding shortages may have played
a critical role in program underperformance is that of technical
assistance. HUD's fair housing initiatives program (FHIP), for example,
is designed to assist state, local, and private fair housing agencies
as well as advocates. But Reconstructing Fair Housing finds
that this program suffers from many problems, including underfunding,
lack of monitoring, and poor performance. Although the potential
value of this program for the expansion of fair housing resources
in the community or for the education of the public and the building
industry about fair housing and accessibility cannot be known with
certainty, our growing recognition of the limits on the power and
the role of the Federal Government require that such efforts as
FHIP be given every chance to succeed. Accordingly, NCD recommends
that any review of the levels and allocation of HUD funding take
the needs and importance of such programs as FHIP and the related
FHAP (Fair Housing Assistance Program) fully into account.
d. ENFORCEMENT
Whether as a response to NCD'S Reconstructing Fair
Housing report or independently of it, the Olmstead implementation
report devotes considerable attention to plans by HUD and the Department
of Justice (DOJ) to step up enforcement efforts, including coordination
in the referral of cases by HUD to the DOJ for prosecution and litigation
where appropriate. To that end, the DOJ indicates its intent to
meet with HUD on a quarterly basis, and the two agencies express
an intent to monitor and use guidelines for selecting cases that
are appropriate for such referrals.
But whereas structuring of the referral relationship
in this fashion (however it may be that DOJ postulates no comparably
specific schedule of contacts for fostering its referral relationships
with other agencies) clearly represents an important step forward
in fair housing enforcement, NCD notes a number of anomalies in
the Department of Health and Human Services (HHS) Olmstead
report's description of these proposed new efforts. Most notable
in this regard is the specification of entities to be targeted for
enforcement. In several iterations of its plans in this regard,
HUD clearly places a focus on those who design, fund, and build
housing, speaking of architects, engineers, and similar categories
as its objects of proposed enforcement. These groups fall mostly
on what we may call the production end of housing. When it comes
to what we may call the retail end of the process, HUD is not specific
or expansive about the targets of its enforcement. With the exception
of public housing authorities, the HUD plans described in the Olmstead
report appear to make no reference to the variety of individuals
and institutions involved in the sale, rental, or management of
private housing. To be sure, HUD does indicate its intentions to
revive its fair housing testing program, which could address these
sectors of the housing industry.
By contrast, the DOJ, for its part, does make reference
to people who manage rental properties as an appropriate enforcement
category, but even the DOJ, insofar as the Olmstead report
summarizes its intentions, appears to make no reference to real
estate brokers, mortgage lenders, or others involved in the buying
and selling of homes. If, as we hope, this omission is merely a
function of editing for space, it is of no significance. But if
it reflects the enforcement priorities of the DOJ in this area,
then it is especially regrettable given the concerns about low home
ownership levels among people with disabilities noted above.
e. AGED CASES
Because of chronic delays in case processing noted
above, HUD has a large backlog of aging fair housing cases. How
to deal with that backlog is a question of great importance. In
a recent letter to the HUD secretary, NCD cautioned against solving
the problem by simply dismissing or otherwise purging the oldest
cases.102 NCD points out that whereas
justice delayed is justice denied, dismissal of cases solely on
the basis of their age is arbitrary and only adds further injustice
to that which is inherent in delay.
f. ACCESSIBILITY SURVEY
The rules governing the construction and renovation
of housing are part of the fabric of fair housing. Yet, because
of differences in the requirements among civil rights statutes,
and perhaps owing in part to the erratic nature of HUD's enforcement
from time to time and region to region, HUD has undertaken to help
remedy this problem through the development and dissemination of
informational resources, as noted above. In addition, to give the
real estate building and management communities the clearest possible
guidance on what the law expects of them when they build or renovate
housing and to give people with disabilities or other interested
persons a chance to comment on the current codes implementing the
ADA and related accessibility laws, HUD has commissioned a survey
on accessibility needs.103 In the
conduct of this survey, as in all its other deliberations concerning
the definition of compliance with the ADA in housing, concerning
the standards by which compliance with Section 504 will be measured,
concerning any further attempts at model code creation in which
the department may become involved, and concerning the certifiability
of state building codes as compliant with ADA standards, HUD should
remember that we confront new accessibility issues today that did
not exist when the ADA and its implementing regulations were written.
One of the most striking examples of such emerging
issues involves the building or renovation of homes with central
heating and air-conditioning or with built-in kitchen appliances
that are inaccessible to persons who are blind or have other disabilities
of reading or even for people who lack the motor function to align
the various pointers and dials or to respond quickly enough to moving
digital displays. The time was when people who could not see the
dials and settings on their thermostats or kitchen appliances could
affix braille or large-print labels to the controls. Many public
utilities and some appliance manufacturers offer templates for these
purposes. But the digital displays and touch-panel controls that
are used in modern design do not lend themselves to being made accessible
by any of these means.
If the thermostat or other furnace controls in a new
home were located so high on a wall as to be unreachable by a person
using a wheelchair, we would have no problem in deeming those controls,
and therefore that home, inaccessible. Apart from any questions
of comfort or convenience, such a design would pose real risk to
health and safety, including even the risk of asphyxia or, in some
climates, of harm through cold or heat. Yet, when, because of the
failure to implement readily achievable design features, people
who are blind are subjected to the same risks, the law thus far
appears to take no notice and to manifest little concern.
Inexpensive technology exists for providing audio
or tactile output for thermostats, timers, and oven and refrigerator
controls, but it is not technology that can be retrofitted. It must
be incorporated into the original design. No survey of accessibility
concerns, and certainly no revision or updating of ADA design requirements,
can be regarded as adequate or complete if it does not take account
of this growing accessibility barrier.
HUD should immediately begin inquiries necessary to
issue regulations that will incorporate accessibility of air control,
environmental control, and built-in appliances into the cannon of
legally required measures. HUD should evaluate its legal authority
to do this under all the civil rights statutes it administers. If
it determines itself to lack authority to require this form of accessibility
under any of the applicable laws, the Administration should consult
with the disability community and the Access Board to develop a
legislative strategy to allow such protections to be added. If HUD
finds it has the authority to act under the ADA, it should promptly
undertake the inquiries and information-gathering necessary to do
so, without waiting for legislation to give it parallel authority
under the other fair housing statutes it enforces.
Given the small cost and little difficulty of the
measures that developers, architects, and builders need to take
in order to prevent these forms of inaccessibility from occurring,
no justification should exist for failing to take these simple measures
that would enhance the health, safety, and comfort of our citizens
with visual impairments, including many elderly persons whose prospects
for age-associated vision loss and mobility impairment are high.
g. VISITABILITY
In 2000, HUD proposed to increase the number of new-construction
housing units available to persons with disabilities by awarding
bonus points for developers who build structures that include "visitability"
by people with disabilities. Visitability involves the incorporation
of a number of accessibility features that make it possible for
people with disabilities to enter, function reasonably within, and
remain in dwelling units, whether or not those units have been specifically
designed or designated for occupancy by people with disabilities.
During 2001, Vermont became the first state to add
visitability to its state building code. Relating to such matters
as the availability of at least one step-free entrance, the width
of doorways, the design of a bathroom, and some other matters, visitability
is important not only for the possibilities of social and professional
interaction it creates but also for the elimination of artificial
and destructive distinctions between housing built for people with
disabilities and housing built for everybody else. NCD strongly
supports state and federal visitability initiatives and recommends
that HUD take the steps necessary to make visitability an element
of federal policy with respect to all new and renovated housing
in our nation.
2. HOUSING SUPPLY
Although vigorous enforcement of antidiscrimination
laws in the short run and comparably vigorous implementation of
accessible design requirements in the long run can contribute significantly
to the supply of available and affordable housing, these laws cannot
by themselves create the supply of housing that we need. Other measures
designed to expand the accessible housing stock and aimed at making
such housing affordable are necessary as well. In this regard, several
measures commend themselves to the attention of HUD, Congress, and
the general public.
a. VOUCHERS
Changes in law that increased investment in "elderly
only" buildings ironically resulted in a decline of available housing
for people with disabilities. To help rebalance the situation, funding
for Section 8 rental housing vouchers was increased in 2001, but
increases in rental housing prices caused by the overall supply-and-demand
equation in our nation have combined with a shortage of vouchers
to pose growing difficulties for those who need this sort of assistance.
Realizing that vouchers represent at best only a partial and temporary
solution to the problem, NCD nevertheless recommends that their
use and availability be maximized and rationalized during the time
required for other, longer-term measures to begin taking effect.
b. INTERIM STRATEGIES
Whereas increases in the number and the value of Section
8 vouchers, together with some changes in the rules to which landlords
who participate in the Section 8 program must subscribe, would help
to ease the shortage, the most meaningful long-term answers continue
to lie in increasing the accessible housing stock of our nation
and of course the resources of people with disabilities through
work and other measures of integration into the mainstream economy.
The tax code offers several strategies for increasing the supply
(and hence the affordability) of accessible housing. Three measures
can be recommended for further study here. The first is the enactment
of an accessible housing credit, modeled on the low-income housing
credit. The second is to expand the architectural barrier removal
deduction so that it is available not only to businesses but also
to the owners of single- or multiple-dwelling residential properties
for the removal of architectural barriers, meaning the addition
or incorporation of accessibility into existing buildings. The third
tax strategy, which would need to be implemented prospectively,
ideally going into effect three to five years after enactment, is
restriction of the tax advantages, including the deductibility of
home mortgage interest and real estate taxes, in connection with
newly built or substantially renovated residential property that
does not meet accessibility standards prescribed by law.
Beyond such tax law refinements as these, several
other strategies also recommend themselves, two of which are noted
here. The first begins with the assumption that more people would
request or insist on accessibility in their purchase of homes if
they knew about the issue and knew what accessibility meant. Both
these goals could be hastened by revising the contents of federally
required disclosure statements so they would be required to include
information on the home's degree of accessibility, according to
the applicable legal standards. State home-sales disclosure requirements
should likewise be revised to the same effect. Nothing in the disclosure
process would require that the home be accessible, but buyers have
a right to know whether and to what extent it is, and representations
concerning accessibility, once made, should be regarded as material
to the transaction for all subsequent legal purposes.
The second strategy in this connection is the Community
Reinvestment Act (CRA). The CRA should be revived and amended to
clarify that investments in community-based accessible housing represent
the type of activity the law is intended to encourage.
3. HOME OWNERSHIP
Owning a home of one's own is part of the American
dream, no less so for people with disabilities than for anyone else.
Yet, despite the gains made by Americans with disabilities over
the past generation in many areas of life, home ownership continues
to be massively out of reach. As mentioned, statistics released
by HUD in October 2000 indicated historically high home ownership
rates among all categories of Americans. Even families with incomes
below the median registered considerable gains in this area. For
members of minority groups, the home ownership rate stood at just
higher than 48 percent. Considering this level still to be too low,
HUD indicated that bringing the home ownership for Americans of
minority backgrounds above 50 percent was one of its goals.
So Americans from all groups were attaining this embodiment
of the American dream in rising and record numbers, except, that
is, Americans with disabilities. For people with disabilities, the
rate of home ownership was dismally low. HUD has not, so far as
is known, expressed either outrage over this figure or any intention
to prioritize the effort to do something about it.
Some may say that because of the strong association
between disability and low income, low rates of home ownership among
people with disabilities are in no way surprising. They would ask,
in effect, "What do you expect?" The problem is not that simple,
as evidenced by the reported increases in home ownership among persons
of low and moderate income generally, and among the often economically
disadvantaged group comprising households headed by women.
In addition to the inherent barrier created by low
income, restrictive Supplemental Security Income (SSI) regulations
and provisions governing other programs prohibit recipients of benefits
under these programs from accumulating enough savings to afford
the down payment, closing costs, or reasonable maintenance, taxes,
and repairs associated with home purchase and ownership. Medicaid
ordinarily allows people to keep their homes, which is particularly
valuable for elderly persons, but its income and resource eligibility
rules also work to prevent people from buying homes in the first
place.
Precedents for how to overcome this barrier can be
found in SSI's income and resources disregards for funds used in
Social Security plans to achieve self-support and in such experimental
vehicles as medical savings accounts (MSAs). NCD proposes a pilot
demonstration to be conducted under the authority of the Social
Security Administration (SSA) whereby SSI or Medicaid recipients
would be allowed to establish home ownership accounts that could
be used to accumulate funds for down payments, closings, and reasonable
maintenance and that would not be subject to "countability" for
purposes of the income and resource limitations applicable to these
and other means-tested programs.
Government loan guarantee programs, including Fair
Housing Amendment (FHA)-guaranteed and Department of Veterans Affairs
(VA) loans, are one way of reducing these barriers. Existing outreach
programs should be examined and new targeting efforts undertaken
to provide loan guarantees for minimal down payments to persons
with disabilities. Efforts should also be undertaken to ensure that
the FHA and VA approval processes are fully accessible to individuals
with disabilities. Accordingly, NCD recommends that the panoply
of federal housing loan guarantees be reviewed for accessibility,
for barriers, and for models that could allow information and assistance
to be targeted more effectively to persons with disabilities.
During the first session of the 107th Congress, a
number of bills were introduced to facilitate home ownership by
public safety officers and teachers by reducing down payment requirements,
by increasing the availability of federal loan guarantees, and by
other means.104 Congress should
direct attention, initially on a pilot/experimental basis, to whether
a similar approach on behalf of gainfully employed individuals with
disabilities could increase levels of home ownership among this
population.
Another area of possible government action, and one
that HUD has indicated it does have under consideration, involves
the modification of the rules governing Section 811 Tenant Assistance
to allow these resources to be used for home ownership as well as
for rental. NCD recommends that HUD pursue these efforts vigorously,
including proposing necessary legislation to Congress if that is
required to make program expansion along these lines possible.
But one crucial caveat must be emphasized here. Owing to the extremely
limited availability of rental housing voucher and other subsidy
funds under current law and budgetary conditions, any such use of
Section 811 funds should be undertaken only in the context of assurances
that it will not place further burdens on, or create greater competition
for, the limited rental housing resources now available. New funds
only should be used to support this home ownership initiative.
Chapter 10
Transportation
1. AIR TRAVEL
Nothing has changed more dramatically and irrevocably
in the past year than the way we travel by air and the way we experience
and think about that travel. Inconveniences and delays that might
once have provoked a storm of protest are now tolerated, even welcomed,
by passengers, who recognize the imperatives of safety and security.
But within the framework of concerns shared by all, many transportation
issues unrelated to security continue to exist, including issues
relating to the ways air carriers and airport operators treat, accommodate,
and provide services to passengers with disabilities.
In March 2000, Congress enacted the Wendell H. Ford
Aviation Investment and Reform Act for the 21st Century (AIR-21),105
which contains important changes to the Federal Aviation Act and
to the Air Carrier Access Act (ACAA) of 1986. These amendments strengthened
in both laws the mandates of nondiscrimination against air travelers
with disabilities.
One provision of the amendments recommended by NCD
was for foreign air carriers operating within the U.S. air transportation
system to follow the same rules of nondiscrimination as domestic
carriers. To implement this provision, AIR-21 called on the secretary
of transportation to work with appropriate international organizations
to establish higher international air transportation standards for
accommodating air travelers with disabilities.
In last year's report, NCD urged the secretary of
transportation to exercise leadership in bringing together representatives
of key international aviation organizations to reach agreement on
international standards of accommodation. During the intervening
year, the importance of international cooperation among air carriers
and governments has been demonstrated more clearly than ever before.
Although NCD recognizes that unprecedented demands on the resources
of the Department of Transportation (DOT) over the past few months
and into the foreseeable future must inevitably limit the attention
the DOT can devote to any matters other than security, NCD is mindful
of, and highly commends the department for, recent steps (that will
be discussed) that show it has not lost sight of, or abandoned concern
for, the issues affecting passengers with disabilities.
NCD asks the department to indicate what progress
has been made toward implementing the international agreements set
forth in AIR-21 and, if the requisite bilateral or multinational
agreements have not been negotiated or implemented, to indicate
its best sense of what the prospects are for doing so in the next
year and what, if any, further resources or legislative support
would be of assistance to it in pursuing and completing these policy
objectives.
The AIR-21 amendments required the secretary of transportation
to investigate each complaint of an ACAA violation and increased
the penalty for violation from $1,100 to a maximum of $10,000 for
each offense. AIR-21 also required the secretary of transportation
to publish disability-related complaint data in a manner comparable
to other consumer complaint data compiled by the department, to
regularly review all complaints received by air carriers alleging
discrimination on the basis of disability, and to report annually
to Congress on the results of such review. To support greater compliance,
the secretary was instructed by the statute to work with the DOJ,
the Architectural and Transportation Barriers Compliance Board (Access
Board), and NCD to develop a technical assistance plan and make
materials available to individuals and entities with rights and
responsibilities under the law.
NCD commends the DOT for the steps it has taken over
the past year to fulfill the letter and the spirit of these amendments.
In particular, we note the outreach efforts undertaken by the DOT
to gather information from travelers with disabilities concerning
problems they face. Additionally, inclusion of air travelers with
disabilities in the Air Traveler Customer Survey was withdrawn pursuant
to an Office of Management and Budget (OMB) directive.
Bearing in mind that the Air Traveler Customer Survey
was undertaken as an alternative to further regulation, NCD recognizes
that compliance with the recommendations contained in the DOT inspector
general's report has been voluntary on the part of the airlines.
NCD therefore asks the DOT to what extent domestic (and, if applicable,
foreign) carriers have complied with these recommendations, particularly
those dealing with the need for timely and appropriate assistance.
If compliance (as judged by the ACAA complaints received or through
other data sources) is deemed high, the industry is likewise to
be complimented. But if the recommendations in such areas as passenger
assistance and advisory committees have not been implemented, NCD
recommends that the department consider regulatory measures as an
adjunct to these voluntary efforts.
NCD also appreciates the DOT's issuance of a number
of ACAA fact sheets, including the recent fact sheet reiterating
and reinforcing the continued commitment to ACAA and the DOT's recognition
that ACAA and heightened security are entirely compatible and can
and should coexist.106
In spite of DOT's timely fact sheet, anecdotal reports
from air travelers with disabilities indicate that additional issuances,
embodying more specific examples of how security and civil rights
intersect, may be necessary if the air transportation system is
to effectively unite ACAA with heightened security principles. Specific
problems reported over the past few months include airport personnel
regarding suspiciously or even threatening to remove or confiscate
assistive devices, such as canes, even though they had been fully
inspected and found to harbor no concealed contents; airport personnel
refusing to assist passengers with visual or mobility impairments
in recovering their belongings once they have come off the conveyor
belt after going through screening, and refusing to tell such passengers,
when their bags could not be found among those that had come off
the belt, that the bag had been taken aside for hand inspection;
officials being unaware that escort or assistance personnel are
permitted to accompany passengers with disabilities to and from
their gates, and airports failing to make clear what the procedures
for obtaining such permission are; officials refusing to believe
that service animals are entitled to carriage in the passenger cabin
with the passenger; officials refusing to offer various kinds of
needed assistance except on arbitrary and humiliating terms (such
as refusing to drop off passengers with disabilities at restaurants
but insisting that if their gates are not yet open they be taken
to offices of one kind or another); and even screeners refusing
to believe that electronic devices without monitors, such as braille
or synthetic speech computers used by persons who are blind, really
are computers.
NCD believes that a further fact sheet or other authoritative
guidance by the department dealing with these and other specific
issues (including issues that may be highlighted by consumer complaints)
and using examples drawn from reported experiences would go a long
way toward making the principles of nondiscrimination clearer and
more concrete and could accomplish a great deal toward achieving
the goals of the earlier fact sheet.
Depending on what further consumer feedback a review
of consumer complaints reveals, additional steps to raise the visibility
and strengthen the enforcement of ACAA are needed. The Federal Aviation
Administration (FAA) should consider adding a module on ACAA to
the training that airport security personnel will be receiving under
the new airport security legislation.
NCD also requests the DOT to report on the status
of the other oversight and coordination initiatives mentioned above,
again with a view to assessing their current status and immediate
prospects, and to identify any additional resources, legislative
support, or budgetary support that may be needed to carry them forward
to successful completion
NCD is pleased to have worked closely with the DOT
in connection with its ACAA implementation and enforcement efforts,
including in the development of the fact sheet noted above. NCD
and the DOT are currently involved in a number of additional initiatives
that are expected to bear fruit in 2002. These initiatives
include efforts to develop policies through industry/government/disability
community consensus on standards for accommodating passengers using
service animals and on the availability of onboard medical oxygen
for passengers who need this resource.
The mechanisms by which these initiatives have been
advanced are in themselves important and worthy of broader use across
the Federal Government. Several stakeholder forums and advisory
groups have been created to bring representatives of the relevant
constituencies, including people with disabilities, together and
to develop consensus standards and statements on issues of concern.
This approach should prove useful in a wide range of other regulatory,
policymaking, and enforcement settings as a means of obtaining the
best information and input and for ensuring the cooperation of all
parties in the actions that result.
One additional ACAA-related issue remains to be addressed.
During 2002, airport security screening practices and personnel
will be brought under the direct control of the Federal Government.
A new Transportation Security Administration (TSA) within the DOT
has been established to manage airport security. To the degree that
the enabling legislation and regulations for this program create
consumer complaint mechanisms, questions of the interface between
these protections and those arising under ACAA once again emerge.
The DOT should move quickly to clarify the responsibility of the
TSA in relation to ACAA and should take steps to resolve any uncertainties
that may arise through the overlap between, or through differences
between, the parallel complaint mechanisms now in existence.
2. ACCESSIBILITY OF INTERCITY BUSES
Pursuant to the Transportation Equity for the 21st
Century Act (TEA-21),107 the DOT
has committed substantial multiyear resources to over-the-road bus
(OTRB) accessibility. Last year, NCD enumerated these major commitments
and commended the DOT for these initiatives. NCD recommends that
the DOT report on the status of these initiatives and on whether
its and Congress's expectations for the accessibility of city-to-city
fixed-route, rural, commuter, charter, and tour bus services are
likely to be met within the applicable time frames, given the current
pace of progress.
To the degree that bus operators receive capital and
other federal assistance under these programs to meet accessibility
requirements for their fleets and to satisfy related service requirements,
NCD also recommends that the department report on the compliance
by participating bus operators, transit companies, and public transit
authorities with all applicable legal requirements bearing on vehicle
accessibility and on the provision of reasonable accommodation to
customers with disabilities. In particular, the department should
report on the extent to which participating entities have put published
procedures in place that describe their provision of necessary assistance
and services to passengers with disabilities; the extent to which
participating entities make these procedures known to customers;
and the extent to which consumer feedback offers insight into the
degree of compliance with these procedures in day-to-day operations.
If such data are unavailable, the DOT should undertake
to collect and publish such information, including through use of
techniques for obtaining consumer feedback of the kind that have
been so effectively used in the air transportation area.
Even if the overall level of industry compliance with
the goals and time frames of TEA-21 are regarded by the DOT as satisfactory,
NCD strongly recommends that the department authorize and enter
into no further voluntary compliance agreements (VCAs) with any
carriers. The law is clear and by now well known. If carriers
cannot comply, the law should be applied, and if carriers can comply,
no justification exists for characterizing as voluntary what the
law and regulations mandate, that is, enforcement action.
3. DOT-DOJ COLLABORATION
In its 1999-2000 status report, NCD commended the
litigation efforts of the Department of Justice (DOJ) and urged
it to initiate more intensive collaboration with the DOT to identify
cases of persistent noncompliance with transportation accessibility
requirements warranting legal action against private bus operators,
public transit authorities, and contract providers of service to
public transit agencies. Based on the outcomes of such cases
as James in Raleigh, NC, and Richardson108
in Steamboat Springs, CO, NCD recommends that the DOT and the DOJ
report on the current status of the law with regard to the authority
of the government to pursue remedies against bus operators who arguably
discriminate against passengers with disabilities.
Because settlements, consent decrees, or even court
orders in transportation vehicle accessibility cases usually involve
remedies that will be implemented over a number of years, NCD
recommends that the DOJ and the DOT jointly develop a system for
ongoing monitoring of respondent performance, so that departures
from agreed-on or court-ordered terms and timetables can be promptly
identified and rectified.
4. NEW FREEDOM INITIATIVE TRANSPORTATION PROPOSALS
As the DOT forges ahead with the implementation of
TEA-21, the transportation-related requirements of Title II of the
ADA, and other laws, it does so under changed circumstances resulting
from the transportation initiatives contained in President Bush's
New Freedom Initiative (NFI). The DOT should be alert and responsive
to the issues of coordination, complementarity, and continuity involved
in continuing to implement existing policy while embracing the innovations,
demonstration projects, funding priorities, and other features of
the NFI.
NFI includes major recognition of the role that barriers
to accessible transportation play in the integration of persons
with disabilities into society. Consistent with this awareness,
the Administration's FY 2002 budget proposal included $45 million
for pilot transportation accessibility projects and $100 million
for transportation improvement matching grants. These funds were
not included in the budget adopted by Congress.109
NCD recommends that Congress reconsider these funding requests
and give the DOT such authority and resources as it may need to
implement these two new programs on an innovative and inclusive
basis.
With respect to these and any other NFI proposals,
NCD recommends that the DOT encourage both pilot and competitive
matching grant program applications from the broadest range of eligible
entities. It should be noted that programs are not a substitute
for complying with ADA requirements. Beyond outreach to the broadest
range of possible applicants, the DOT must endeavor to encourage
the use of the widest possible variety of transportation modalities
as well. To accomplish this, NCD also recommends that the DOT
does not implement these programs in ways that limit them to automobile
transportation initiatives, but seek and respond to initiatives
that include the use of other transportation modes. Bearing
in mind that different regions of the country and many communities
make use of commuter rail, light rail, inland watercraft, and even
subways as elements of their transportation strategy, the DOT should
be receptive to proposals that attempt to bring innovation and improvement
to all these modes of transit and, in so doing, should be maximally
responsive to the needs and preferences of distinctive communities
and local customs throughout our nation.
In evaluating proposals under the NFI programs, the
DOT should further be mindful that whereas physical inaccessibility
of transportation vehicles has historically been the major barrier
to transportation equity for persons with disabilities, it is by
no means the only transportation barrier these citizens face. Virtually
every disability subpopulation has and continues to face obstacles
to safe and reliable transportation, ranging from the inaccessibility
of print-only maps, timetables, and signage to persons with visual
impairments to the inaccessibility of announced-only delay or detour
information to people with hearing disabilities to the continuing
inaccessibility of many fare and ticket machines to persons with
visual, cognitive, or motor impairments.
5. RESEARCH AND TECHNOLOGICAL INNOVATION
In many ways, transportation has changed less over
the past fifty years than most other aspects of our lives. Nothing
equivalent to the Internet for how we move information has emerged
to revolutionize the way we move people. Nevertheless, recent advances
in transportation technology--ranging from the global positioning
systems and other remote guidance and tracking systems to new designs
in energy-efficient, high-speed scooters--have created exciting
possibilities for increasing accessibility and independence for
a host of travelers with disabilities.
New personal transportation vehicles, such as the
Ginger, unveiled in December 2001, promise the long-delayed revolution
in transportation, but by no means is it self-evident or automatic
that these benefits and opportunities will be extended to Americans
with disabilities. In order for such innovations to be responsive
to the needs and concerns of people with disabilities, testing and
evaluation efforts must be organized with a conscious intention
to include people with disabilities in focus or experimental groups.
For that reason, the DOT should undertake efforts
in conjunction with the National Institute on Disability and Rehabilitation
Research (NIDRR) or other suitable entities to facilitate the innovative
use of all such personal transportation vehicles and devices by
persons with various disabilities and to ensure that the results
of such experimental use are made known to the manufacturers of
all such technology in a timely fashion so these findings can be
incorporated into the results of beta or other prototype field testing.
On the basis of input from users with disabilities, it may prove
possible to implement at early stages design enhancements that would
be difficult or impossible to retrofit once large-scale distribution
and use occur.
6. PARATRANSIT
Anecdotal reports continue to abound about problems
in the design and delivery of paratransit services throughout the
country. Such problems include disproportionate investment of program
resources in cumbersome and lengthy eligibility determinations at
the expense of service delivery; arbitrary limitations on service
based on time, location, purpose of trip, or other variables; denial
of service to persons who, although physically capable of boarding
and disembarking from fixed-route transportation vehicles, cannot
safely or reasonably get from their homes to and from the stopping
places for such vehicles; refusal to carry personal assistants or
other companions; refusal to carry service animals; insistence on
certain kinds of wheelchairs or other mobility aids; imposition
of service priorities based on the purpose of the trip; poor training
and high turnover of personnel; failure to keep scheduled appointments
or imposition of unreasonable advance notice requirements for scheduling
trips; and other matters.
A particularly recurrent problem that calls for definitive
guidance relates to the right of persons with visual disabilities
to use paratransit services. Accounts from around the country indicate
that while most systems recognize the eligibility of persons who
are blind or have significant visual impairments, a large number
of other transit systems take the view (apparently because the applicants
in question can walk without difficulty) that this group of persons
with disabilities is not eligible for paratransit services.
The DOT should ensure effective oversight of paratransit
services and meaningful opportunities for the resolution of problems
and for the redress of grievances. This is particularly so because
many of the problems reported appear to involve disregard for or
ignorance of existing regulations.
Similar to other components of the transportation
system, paratransit services lend themselves to the kind of innovation
contemplated by the NFI and other long-standing unfunded initiatives.
In view of the widespread frustrations with paratransit services
noted, the DOT must continue to monitor the system with vigilance,
but the department must at the same time maintain the necessary
flexibility to accommodate experimental projects, nontraditional
providers, and new methods and technologies. If that is done, the
best of existing paratransit practices and the promise of new approaches
may be effectively merged and applied.
Chapter 11
Assistive Technology and Telecommunications
1. THE NEW FREEDOM INITIATIVE AND ASSISTIVE TECHNOLOGY
The president's New Freedom Initiative (NFI) places
great emphasis on the development and deployment of assistive technology
(AT). That emphasis includes major commitments to research through
the National Institute on Disability and Rehabilitation Research
(NIDRR), expansion of resources available for AT loans to individuals
with disabilities under the Alternative Financing Program (AFP)
of Title III of the Assistive Technology Act, and commitments to
a number of innovative programs (such as use of technology to develop
home-based entrepreneurship and employment opportunities), along
with use of technology as a key element in the achievement of other
policy goals (e.g., implementation of the Olmstead decision).
NCD welcomes these initiatives and recommends that the Administration
continue taking the steps needed to ensure their fulfillment, including
coordination of efforts among agencies with overlapping jurisdiction,
ongoing provision of technical assistance to states and other partners,
and clarification of applicable income tax rules and of Social Security
income and resources limitations in order to avoid possible work
disincentives that could interfere with the success of employment-oriented
activities.
a. COORDINATION
By coordination, we mean that the pro-AT efforts and
activities of one program or agency should not be inadvertently
undermined or negated by the policies or activities of another,
especially when these barriers arise only as an incidental by-product
of policies that were not developed with AT in mind. For example,
the NFI proposes to increase home-based work opportunities for people
with disabilities by, among other things, making the costs of computer
equipment and telecommunications services provided to such persons
tax deductible to the employers or other third parties who furnish
them. This is a promising proposal, but unless accompanied by changes
in the rules governing a number of benefit programs, as well as
changes in the tax law, it could actually result in a net reduction
in the services available to persons with some of the most significant
disabilities.
Unless the rules for Supplemental Security Income
(SSI) and Social Security Disability Insurance (SSDI) are simultaneously
modified, small increases in income could result in more than offsetting
curtailment of payments under these programs. Still worse, the services
linked to these programs (including in-home Medicaid home health
care or other services, even services necessary to permit the individual
with a significant disability to perform gainful work at home) could
also be jeopardized.
The unintended consequences of any policy initiative
cannot readily be anticipated, but attention to coordination issues
is required in the planning stage if such unforeseen barriers are
to be fully avoided. NCD is pleased at early indications that the
Administration understands this point. The recently released preliminary
report outlining progress under President Bush's June 2001 Olmstead
Executive Order contains a section on AT and demonstrates a recognition
that meaningful progress in removing barriers to its use requires
the coordinated and concerted efforts of a number of agencies and
programs.
NCD believes that either the Interagency Committee
on Disability Research (ICDR), which the Administration has proposed
to reinvigorate with increased funding, or the newer Interagency
Committee for Community Living (ICCL), which has not yet been made
permanent, could serve as the forum for identifying and addressing
these and the myriad other coordination issues that will arise in
implementing the Administration's creative AT programs and strategies.
b. ALTERNATIVE FINANCING PROGRAM
The Assistive Technology Alternative Financing Program
(AFP) has been widely hailed as a means by which people with disabilities
can take greater control of their own lives. The FY 2002 federal
budget contemplates large increases for this program, which operates
under Title III of the Assistive Technology Act and, though authorized
as early as 1994, was not funded until two years ago. Certain provisions
of the current law threaten the growth and success of the AFP program,
however.
AFP requires the provision of state matching funds
as a condition for receipt of federal program funds. As states face
steep fall-offs in their tax revenues and deteriorating budgetary
situations, the feasibility of providing matching funds at expanded
levels may be called into question. Whereas the current match requirement
of $1 in state money to every $3 in federal money is not out of
line with other federal-state programs, the growth of the program
is nevertheless likely to be somewhat hindered because new money
is required and in-kind contributions, including from private sector
partners, may not qualify for treatment as a match under the current
rules.110 Accordingly, NCD recommends
that, at least until state tax revenues begin to climb again, the
matching fund requirements of Title III be suspended or be modified
to broaden the kinds of participation that will be acceptable to
meet the match.
c. RESEARCH
The NFI includes a significant commitment to AT research.
In implementing this commitment, the Administration should make
certain that the distinctness of, and the relationship between,
AT and universal design are recognized and honored. Over the years,
NIDRR has demonstrated a farsighted grasp of the importance of universal
design through its sponsorship of conferences on the subject and
by its support, pursuant to competitive grant award processes, of
a number of rehabilitation engineering and research centers (RERCs)
having universal or accessible design work as their primary objective.
Research priorities should therefore include not only
the development of new devices but also such matters as the ability
and flexibility of the AT service system to accommodate universally
or accessibly designed products that are not expressly or uniquely
designed for people with disabilities but that have features allowing
them to be used by everyone, including people with disabilities
(e.g., cell phones that allow hands-free operation); research into
the implications for the economy of accessible design (in terms
of the costs and benefits of up-front investment in accessible design
of products and in terms of the proper allocation of such costs
and benefits); research, based on the findings of the current Government
Accounting Office (GAO) study,111
to be conducted in conjunction with the Treasury into the viability
of tax credits or other incentive measures to stimulate the design,
production, and marketing of accessibly and universally designed
products and services; and research into the implications for learning
and for assimilation of information when it is enriched by presentation
in accessible audio and video formats.
d. CARRYOVER INITIATIVES
During 2000, the Clinton Administration launched a
number of AT-related initiatives. Although several of these have
been effectively merged into, or superseded by, NFI initiatives,
at least one is worthy of further exploration. The previous Administration
directed the secretary of the Department of Health and Human Services
(HHS) to convene an interagency task force on health care coverage
of AT.112 This task force was charged
to study the role that Medicare and Medicaid currently play and
should play in the coverage of AT devices. The work of the task
force was intended to provide a framework for future Medicare and
Medicaid coverage decisions that complement overall efforts to promote
employment opportunities for people with disabilities. In the executive
memorandum setting it up, the task force was directed to conduct
a study on the role of Medicare and Medicaid in covering AT devices
that encourage employment of individuals with disabilities. With
these two health insurance programs receiving attention and recognized
to be in need of modernization and reform, consideration of the
role they should play in AT is all the more timely.
The recent Olmstead report issued by HHS includes
some promising views and intentions regarding AT and identifies
a number of barriers to AT provision and use in current law. The
report does not indicate, however, any Administration plans to systematically
evaluate the current and projected role of these two major health
insurance programs as sources of funding for AT. Accordingly, NCD
recommends that the Administration add to its agenda a comprehensive
study of what role the health care system should play in the provision,
funding, and development of AT.
2. IMPLEMENTATION OF SECTION 508
Section 508 of the Rehabilitation Act of 1998 (technically,
Section 508 of the Workforce Investment Act [WIA] of 1998, because
the Rehabilitation Act amendments were adopted as part of WIA) has
been praised as the most far-reaching universal design statute ever
enacted. This law provides that in their purchase and use of electronic
and information technology (E&IT), federal agencies must adhere
to the principles of "accessibility" to persons with disabilities.
The law's purpose is to ensure that access to such technology--including
computers, photocopiers, audio-visual training materials, and Web
sites, to name some of the major types--is equal for federal employees
and members of the public with and without disabilities. In those
cases in which achievement of accessibility constitutes an undue
burden, the agencies are not required to obtain accessible technology,
but they are still required to develop alternative means for making
information available to government employees or members of the
public with disabilities.
As important as these provisions are in their own
right, the greatest significance of Section 508 may lie in its across-the-board
impact on the design practices of industry. If one of the largest
customers for E&IT demands accessible products, efficiency will
dictate that all such products are designed with accessibility principles
in mind. Achievement of this long-term goal of reorienting mainstream
design practices toward accessibility depends on the success of
the Federal Government in implementing the new requirements. If
Section 508 is not enforced, or proves unworkable or too costly,
its leverage value will be lost. If the law proves effective and
is followed, the communications and information landscape can become
an even greater force for democracy and participation than it already
is.
a. IMPLEMENTATION
During the past year, important steps in the transformation
of Section 508 from a statute to a part of daily life in the federal
sector have taken place. On December 20, 2000, the Access Board
issued final guidelines defining the key terms and requirements
of the statute and operationalizing its requirements.113
Subsequently, as required by the section, the Federal Acquisition
Regulation Council (FARC) added regulations to the Federal Acquisitions
Regulation (FAR) specifying how federal procurement officials in
all covered executive branch agencies should apply the law.114
Section 508 has been fully in effect--both its civil
rights and remedies provisions, which allow those alleging its violation
to bring complaints, or even to file suit, against the offending
federal agency, and its procedural provisions, which are those embodied
in the FAR--since late June 2001. The law appears to have proceeded
largely without incident. But whereas the earthquake that so many
predicted--some hopefully and some with trepidation--has not occurred,
several serious problems in the administration of the law have already
come to light. Although no critical mass of experience or wealth
of data under the statute yet exists, informally reported experience
suggests a pattern that needs to be addressed if the law is to yield
the full benefit its supporters expect.
The principal questions that have emerged thus far
relate to the lack of adequate compliance monitoring. The DOJ is
vested with responsibility under the law to make biannual reports
to the president and Congress on the implementation of Section 508.
To that end, the DOJ has on the one hand undertaken biannually to
measure the performance of federal agencies in relation to the accessibility
of their public and employee Web sites. On the other hand, no monitoring
procedures are in place to determine the frequency with which agencies
invoke the "undue burden" defense or any of the several other exceptions
to compliance authorized in the FAR. Nor are there any auditing
procedures in place for evaluating the soundness of such undue burden
claims by agencies.
Federal agencies are required to document the reasons
for claiming undue burden with respect to any procurement or component
of a procurement for which the claim is made, but no one is charged
by the law to collect, review, or evaluate these claims. Anticipating
this problem, NCD recommended in its June 2001 report The Accessible
Future115 that the General Services
Administration (GSA) take measures to fill this potentially critical
information vacuum. Accordingly, NCD now reiterates its recommendation
that the Administration institute procedures for collecting and
tracking these undue burden claims.
Additionally, because experience will reveal other
unforeseen problems in the implementation of this law, the Administration
needs to take measures to ensure its timely awareness of all emerging
issues. To that end, the Administration should issue a Request for
Information (RFI) to agency chief information officers (CIOs) and
other interested parties, seeking comprehensive information on all
problems, unforeseen vagaries, or subsisting uncertainties that
have arisen thus far in the implementation of Section 508.
Because the RFI can present only a snapshot of 508
implementation at a particular moment in time, other means must
be found to maintain the necessary level of oversight and feedback.
The required DOJ biannual reports, if expanded in scope, may
represent one source for keeping implementation information current.
Accordingly, NCD recommends that information on implementation
and compliance issues be included in the DOJ's reports to the president
and Congress.
b. TECHNICAL ASSISTANCE AND OUTREACH
The GSA launched the Federal Information Technology
Accessibility Initiative (FITAI) to help federal agencies provide
access to E&IT and to meet the requirements of Section 508.
This program--involving, among other things, a major Web site (http://www.section508.gov)
serving as a portal to a variety of 508-related information and
resources--supports, through outreach and information sharing, the
Federal Government's efforts to comply with the law. The government's
508 Web site also serves as a rich source of information for vendors
wishing to sell to the government, for members of the public, and
for other interested groups. One potential benefit of this ROI is
the opportunity it would afford to learn from government information
technology professionals, from vendors, and from consumers about
how effective the www.section508.gov Web site has been in meeting
their needs.
In last year's annual status report, NCD also recommended
that the GSA ensure that tools for measuring relative accessibility
and for evaluating vendor accessibility claims be created, validated,
adopted, or adapted for all covered forms of E&IT. A number
of excellent, Web-based tools exist to help webmasters, CIOs, and
consumers evaluate the accessibility of Web sites and offer guidance
in Web site repair when shortcomings are disclosed.116
As such, it seems fair to say that today, though there will always
be new situations and though some subjectivity necessarily goes
into the determination of how to make particular Web-based information
accessible, we know how to make Web sites accessible.
In the long run though, Web site accessibility should
better be seen as a starting point than as an endpoint. As one recent
study shows, accessibility does not necessarily denote a high degree
of usability, and people with disabilities often require more time
to complete Web-based tasks than other users do.117
Evaluation tools, therefore, should be developed that concern themselves
not only with the technical fulfillment of accessibility standards,
as important as these are, but also with usability, defined in terms
of the relative difficulty, accuracy, and time required for the
accessing of Web-based information or the performance by persons
with and without disabilities of interactive tasks on the Web.
When it comes to the variety of equipment and devices,
hardware, and operating systems and applications software subsumed
under Section 508, the problems associated with validating vendor
claims, with comparing the relative accessibility of competing products
that approach accessibility in different ways, with "scoring" products
in the competitive bidding process in which each meets some accessibility
requirements but fails to satisfy others, and with testing equipment
under realistic and challenging conditions before its acceptance--all
these present difficult and as yet unresolved questions. A number
of efforts are under way to develop and validate protocols and templates
for equipment testing and for developing objective and replicable
scoring techniques to be used by procurement officials. Pending
the widespread availability of suitable instruments, NCD recommends
that, at the very least, rigorous testing by federal agencies of
devices under realistic and real-time conditions is an indispensable
element of the 508 process. Though holding out no guarantees,
federal agencies should require such testing before the acceptance
of proffered E&IT.
If prototypes are tested under the conditions of their
intended use, in the performance of the tasks for which they were
procured, and in the networks and configurations in which they will
need to operate, significant light can be shed on their accessibility
and usability. Wherever possible, agencies should use the services
of employees or consultants with disabilities who have knowledge
of the equipment to help conduct these tests.
c. A TECHNOLOGY-BASED CIVIL RIGHT
Unlike Section 255 of the Federal Communications Act
(discussed later), which does not include any private right for
an individual to sue for its violation, Section 508 confers a right
for federal employees or members of the public to file a civil rights
complaint or to bring suit for its violation. The implications of
this important new civil rights protection are discussed in detail
in NCD's Accessible Future report. Here we mean only to suggest
that the DOJ, in its biannual report, should track such complaints
or suits. Likely, the number and types of any such suits will provide
important insight into how well Section 508 is working in the field
and will alert the Administration and Congress to any reforms or
updates that may be needed.
In this connection, a fascinating conundrum must be
noted. Owing to its role in collecting data about Section 508 compliance
for its reports to the president and Congress, the DOJ is likely
to have far more current information and firsthand knowledge about
agencies' implementation of Section 508 than it typically possesses
about their implementation of most laws. In some cases, as a result
of information supplied to it by the agencies or through its own
independent monitoring of a random sample of Web sites, the DOJ
may have actual knowledge that a particular procurement or agency
is substantially out of compliance with the law. At the same time,
if a court action is brought against a federal agency for the violation
of Section 508, the DOJ's responsibility is to defend that agency
in court.
Under these circumstances, it would be useful for
the DOJ to indicate to the federal agencies and to the public, both
of which it ultimately represents, how it intends to handle these
situations should they arise. Does the DOJ believe its possession
of such knowledge would give rise to a conflict of interest in its
defense of federal agencies? Does the department believe itself
to have an affirmative obligation to disclose such information on
noncompliance, or does it regard this obligation as triggered only
when it is specifically questioned or asked to produce relevant
documents? Does the DOJ believe that, by reason of its institutional
status, knowledge held by one unit cannot be imputed to other separate,
walled-off units?
d. TELECOMMUTING
In its NFI, the Bush Administration favors the use
of telecommuting for federal employees where possible, and this
includes employees with disabilities. As it relates to Section 508
(and to the related requirements of Section 501 dealing with discrimination
and equal opportunity in federal employment), implementation of
telecommuting options for government workers with disabilities may
present a number of issues.
For telecommuting to work, in some cases it may prove
necessary to install accessibility features at the employee's home.
Section 508 does not on its face contemplate the furnishing of access
peripherals or specialized software to individuals for private use
away from federal facilities, but where the employee's home becomes
his or her place of work, logic and equality dictate that the necessary
accommodations be provided.
3. DISTANCE LEARNING
Web-based education and distance learning have grown
exponentially. Universities that would have looked disdainfully
at the practice only a few years ago are now embracing it eagerly
as a technique for attracting a broad range of busy students. During
2000, through a series of public hearings, the National Web-based
Education Commission conducted an investigation of the key issues
that surround the increasing use of the Internet for learning, including
the necessity for ensuring that all learners have full and equal
access to the capabilities of the Web. In December 2000, the Commission
issued a report of its findings from two years worth of hearings
and e-testimony.118
In last year's annual report, NCD acknowledged the
work of the commission, especially its focus on the policy issues
of "access and equity." NCD strongly encouraged Congress to use
the commission's report for the next few years as a roadmap to guide
congressional activity in key areas, such as distance learning,
technology development and transfer, Internet and Web-oriented research,
and e-commerce, to name just a few. NCD now recommends that the
Administration review the report, formally indicate its views concerning
its findings and recommendations, and act to incorporate those recommendations
in policy to the extent appropriate.
4. THE E-RATE
The Federal Communications Commission (FCC) administers
the "e-rate" program, as it is known, which is a program designed
to make Internet access and telecommunications services more affordable
for schools and libraries. The e-rate does this by subsidizing the
rate these institutions pay for such services, partly through rate
concessions that are available to a broad range of eligible institutions
and partly through competitive grants. Although available to help
schools and libraries generally, the e-rate program is structured
so that the highest level of subsidy goes to institutions in urban
or rural areas with high levels of poverty, as evidenced by such
indicators as the number of children qualifying for the free school
lunch program.119
The e-rate program is perhaps the leading recent example
of our nation's commitment to universal service in the telecommunications
sector. This commitment (originally to universal telephone service)
goes back to the Federal Communications Act of 1934 and over the
years resulted in the establishment of lifeline and other programs
to ensure basic phone access to economically disadvantaged individuals
as well as in policies that facilitated the expansion of telephone
service throughout our country and helped equalize the disproportionate
costs of bringing such service to remote rural areas. But the principle
of universal service faces new and complex challenges in our time.
By enacting the e-rate as part of the Telecommunications Act of
1996, Congress and our nation expressed the view that this concept
of universal service still has meaning in the age of the Internet.
Given the intent of the program to target the greatest
benefits to the poorest areas and individuals, and given the historical
backdrop of universal access against which the program is set, there
can be no question that the e-rate program was intended to benefit
students and library patrons with disabilities, just as much as
anyone else. Whereas the question has not yet been decided by any
court, this history and interpretations by the DOJ and the FARC
of other provisions of the section lead almost inescapably to the
conclusion that the e-rate program is covered by Section 508.
Nevertheless, application of this or other civil rights
requirements on e-rate beneficiaries and grantees has thus far proved
surprisingly difficult. For the first three years of the program's
operation, e-rate discounts valued at about $6 billion were awarded
to schools and libraries without any explicit requirements or requiring
any assurances from them that accessibility would be provided to
the telecommunications services funded with e-rate monies for people
(students and library patrons) with disabilities. Eventually, meetings
between NCD and the FCC in 2000 resulted in the inclusion of a generic
accessibility notice in e-rate applications.
NCD expected that this was the first step in a process
that would rapidly lead to revision of the FCC's e-rate application
form and Web site to incorporate specific requirements for assurances
from schools and libraries that they will adhere to federal accessibility
mandates. To the dismay of many, the additional regulatory notices
and procedural steps necessary to make accessibility requirements
explicitly applicable to e-rate subsidy recipients have not yet
occurred. No measures designed to make accessibility a specific
legal compliance issue or even to require assurances from recipient
institutions regarding their awareness and intentions concerning
accessibility have yet been taken.
If, on the one hand, the FCC believes for any reason
that it lacks legal authority to apply the requirements of Section
508 (or those of Section 504) to e-rate recipients, it should say
so. Then it could join with advocates in seeking congressional action
to endow it with the necessary jurisdiction. On the other hand,
if the commission regards itself as possessing the requisite authority
to promulgate such regulations, it should proceed to do so without
further delay. There is no excuse in the year 2002 for those who
receive public subsidies, through surcharges paid on telephone use
by all, for the benefit of all, to make the benefits of universal
access available only to some. As long as people with disabilities
pay the surcharges that fund the e-rate, it is unthinkable that
they or their children should be denied its benefits.
5. SECTION 255
Section 255 of the Federal Communications Act, as
added to the law by the Telecommunications Act of 1996, requires
that providers of telecommunications services (such as local and
long-distance phone companies) and manufacturers of telecommunications
equipment and customer premises equipment (CPE) must make their
products and services "accessible to" and "usable by" individuals
with disabilities where it is "readily achievable" to do so. Guidelines
defining and applying the concepts and provisions of the law were
jointly developed by the Access Board and the FCC, and were adopted
by the FCC as regulations.120
Although we have only had about three years of experience
implementing Section 255 and operating under the FCC's 255 regulations,
that experience, coupled with the emergence of new technologies,
has revealed two key problems in the administration of the current
law. Both problems are believed to be within the FCC's power to
correct, or at least to substantially influence, and both require
urgent action if the goals of accessibility are to be attained.
a. ENFORCEMENT
The FCC has sole jurisdiction over enforcement of
Section 255. No appeals from its decisions or lawsuits are permitted.
The enforcement of the law lies solely within the commission's control.
For that reason, the commission's enforcement practices and their
results must be the subject of special scrutiny.
As a basis for enforcement, the Access Board and the
FCC undertook production of a periodic market monitoring report
(MMR). This survey of telecommunications services and CPE accessibility
was designed to identify areas of progress and areas of difficulty
and to help the commission and industry focus resources in those
product and service areas where progress toward accessibility was
limited or slow. After being published once, the MMR has not been
issued again. Because the MMR was widely believed to be a useful
tool and because the FCC has not expressed any public dissatisfaction
with the process of preparing it or with the results of its publication,
the failure to update and maintain this resource is regrettable.
NCD recommends that the FCC indicate whether it
no longer believes the MMR to be a valuable information resource
in its enforcement of Section 255 and, if it does believe the MMR
to be inappropriate, to indicate how it proposes to gather broad-based
compliance information. If the commission regards the MMR as a viable
tool, it should revive the regular publication of this report, in
cooperation with the Access Board.
A related issue concerns pattern-and-practice oversight.
NCD is not aware of the exercise of any such oversight jurisdiction
on the commission's part. Rather, it appears that the commission
relies almost entirely on consumer complaints as a basis for its
enforcement of the law. This is an inadequate basis for exercising
its statutory and exclusive responsibility.
No studies are known to exist measuring the extent
of consumer awareness of Section 255. Without evidence that the
law is widely known or understood, complaints are likely to be relatively
few in number. Moreover, such complaints are not necessarily representative
either of the nature or the scope of accessibility and usability
problems encountered by telecommunications users and customers with
disabilities.
As significant, the commission's approach to complaint
handling may further discourage recourse to the Section 255 complaint
process by consumers with disabilities. On balance, the commission
appears to favor complaint resolution by negotiation between the
parties over adjudication or investigation by its own staff. The
commission leaves it to the complainant, after contact with the
respondent service provider or manufacturer, to indicate whether
he or she is satisfied or dissatisfied with the resolution, and
if the complainant is satisfied, the commission takes no further
action. The commission is not known to have entered a finding against
any respondent in a 255 case, and it has never made clear exactly
what sanctions it would impose.
Although reliance on the parties to settle complaints
themselves is appropriate in many situations, it may not be the
best strategy when the parties come to the table with such vastly
unequal resources. Ordinary customers do not have the means for
evaluating manufacturer claims that one or another access feature
is "not readily achievable," nor does the customer have the technical
information or capacity to know whether, when a manufacturer or
service provider claims that a requested accessibility feature is
not readily achievable, this contention is accurate or is based
on full knowledge of the state of current technology and research.
Finally, as is more and more the case, where accessibility and usability
barriers result from the complex interaction between equipment and
network components, isolated consumers have no authority to bring
manufacturers and service providers together to determine how the
responsibility for resolving problems can be most effectively allocated
between them.
Faced with these disparities of knowledge and power,
and lacking active investigation or representation by the FCC, consumers
are left in a position in which, as a practical matter, they must
either accept whatever respondents offer or confront the likelihood
of gaining no redress at all. How voluntary and how informed can
complainant acquiescence really be under these circumstances? In
many cases, such expression of satisfaction may result from just
this perception or may at best mean nothing more than that a manufacturer
or service provider was attentive and courteous.
Although application of Section 255 to the facts of
any complaint is a highly individualized matter, certain provisions
of Section 255 can be enforced without reference to consumer satisfaction
or complaints. For example, the law requires manufacturers and suppliers
to make certain product information, manuals, and other relevant
materials available in accessible formats on request. Provision
must also be made--on the box or otherwise--to inform consumers
of the availability of these accessible formats. The FCC could conduct
random spot checks of products in stores to ascertain whether this
is being done.
Similarly, the law requires that companies covered
by Section 255 designate points of contact for 255-related issues.
For this purpose, the commission has developed a list of covered
companies and their designated 255 contacts. Once again, spot checks
should likewise be conducted, through calls to technical support
and customer services lines and through e-mails to the designated
255 company contact officials, to determine whether these assignments
have been maintained, whether the names and contact numbers are
accurate, and whether help desk personnel who deal with the public
are aware of 255 and know how to channel 255-related questions or
calls to the named individual.
Generally speaking, the FCC's approach to enforcement
of Section 255 can only be described as passive. If the customers
the law was intended to enfranchise and the companies it was intended
to guide could play on a level playing field, such an approach might
be acceptable. Where the role of technical information and legal
acumen create enormous disparities in their levels of knowledge
about key legal and factual matters or in their ability to have
any overview of industry practices, such an approach is tantamount
to nonenforcement. If unchanged, this approach will amount to agency
nullification of a major civil rights law.
b. TELECOMMUNICATIONS VERSUS INFORMATION SERVICES
It may come as a surprise to some, but under the law,
the term "telecommunications services" does not mean all the services
provided to the public by phone companies or other telecommunications
services providers. Strictly speaking, the term applies only to
those traditionally regulated services that facilitate and carry
voice communication from one point to another. Similarly, the requirement
of Section 255 that CPE be accessible and usable refers only to
those components of such equipment as are involved in the voice
communication process. Other services, ranging from e-mail to high-speed
data transmission, are labeled "information services" and are generally
exempt from regulation.
Because of this distinction between categories of
service and between the equipment items or components used to facilitate
and carry each of them, Section 255 is in danger of becoming applicable
to a progressively smaller and less relevant portion of the e-commerce,
education, and employment-related activity conducted over, or supported
by, the communications networks of our country. Section 255 is in
jeopardy of becoming trivial and anachronistic, unless something
is done to make it applicable to the equipment and services that
people more and more depend on and use.121
Recognizing the devastating potential of this situation,
the FCC, in its regulations implementing Section 255, asserted the
right to broaden the definition of covered telecommunications services
to include a more realistic range of activities and functions. Through
creation and use of an "adjunct-to-basic services" category,122
the FCC undertook to apply Section 255 to all the features and functions
necessary to make and complete calls, including those that could
be used for e-mail, fax, data ,and graphics transmission, as well
as for the placing, transmission, and receiving of traditional voice
calls.
Subsequent to the implementation of these Section
255 regulations, the FCC has sought input from industry and the
public regarding the need for further broadening the scope of Section
255 in the information services arena.123
What the commission will do with the information received remains
uncertain.
NCD recommends that the FCC act quickly to apply
Section 255 to those information services that have become critical
and staple parts of America's information society. To do less
would be the equivalent of condemning Americans with disabilities
to travel by horse and buggy while the rest of the population speeds
past in modern cars.
In the event the FCC determines that it lacks legal
authority to extend the coverage of Section 255 to the services
that most impact education, economic activity, and quality of life
today, the commission should immediately make this view known and
join with advocates to request that Congress grant it the necessary
authority or otherwise amend the law to ensure that the term "telecommunications
services" is given a viable meaning. Finally, NCD recommends
that Congress, in its consideration of telecommunications deregulation
legislation,124 ensure that existing
civil rights protections under Section 255 (as well as those that
may accrue from other laws) are not inadvertently jeopardized, confused
with economic regulations, and held hostage to conflicts among the
telecommunications and media industries.
6. E-GOVERNMENT
Broadly speaking, the term "e-government" refers to
the variety of services, activities, information resources, and
citizen-government interactions that the government provides, conducts,
or supports in whole or in part through the use of E&IT. Like
e-commerce, e-government has grown rapidly at the federal and state
levels, and has become either the modality of choice or, in many
cases, the sole available modality for carrying out a growing array of
governmental functions. In areas from telecommuting and agency Web
sites to online tax return filing, e-government affects our lives
and defines and structures our options more and more with each
passing day.
Whereas some people, having real choice in the matter,
undoubtedly actively opt to minimize their participation in e-government,
even they are affected by it. But at least for them, less access
to federal information and services is a consequence they choose
to accept. For all too many others, including millions of Americans
with disabilities, denial or restriction of access to the technologies
and resources of e-government is not a matter of choice but a matter
of exclusion and deprivation. For these Americans, the digital divide
is an increasingly sinister and crushing barrier to education, economic
self-sufficiency, and full participation in community and civic
life.125
Away from the Internet, the issues are no less pressing.
We would not think of opening a post office or a new federal building
today that did not provide physical access for wheelchairs, yet
we continue to encounter new examples of e-government, including
at the state and local levels, that are more or less inaccessible
to persons with disabilities. And even short of sophisticated e-government
applications, even inaccessible "low-tech" continues to abound.
For example, if directories and directional signage are available
only in print, if one's turn to talk to an official is made known
only by a name or number being called out by a digitized voice,
if no assistance is offered in the completion of informational forms,
or if questions are required to be answered verbally, all of which
are common, people with disabilities inevitably suffer serious disadvantage
and exclusion. Technology, much of it now simple and routine, coupled
with flexibility and creativity in the rules governing its use,
can correct many of these situations, but if new technology continues
to be deployed without due and timely consideration of all these
users, only growing inequality and estrangement from government
will result.
Another key fault line for e-government relates to
the expectations the government holds for those who use E&IT
on its behalf and with public funds. When the government partners
with state, nonprofit, or for-profit private sector entities, it
imposes a number of expectations on these partners. These expectations,
of course, vary with the law under which the relationship exists
and with the objectives of the partnership, but all contractors,
grantees, joint venturers, and operating agents are generally expected
to comply with civil rights laws. No one would tolerate discrimination
by these partners on the basis of race, religion, or gender. Yet,
when inaccessible E&IT is deployed, resulting in lesser opportunities
for people with disabilities than for others, discrimination is
certainly what occurs.
Where once it may have been plausible to say that
unequal access, because unintentional or unavoidable, was not discriminatory,
progress in access technology and widespread information on its
availability and importance no longer allow regret to suffice. Whether
or not it is actionable or culpable, the failure to at least evaluate
accessibility options and costs can no longer be regarded as accidental.
Some may argue that imposition of accessibility requirements
in all federal partnership relationships goes beyond the authority
of the Federal Government. But what law exempts e-applications and
e-activities and services from the coverage of civil rights laws?
Because of a number of technical issues--including
variations among enabling and authorizing statutes creating the
myriad relationships in question--the process of implementing e-civil
rights, as mentioned earlier in this report, must begin with a DOJ
assessment of the current scope of federal authority and responsibility
in this area. To the degree that the DOJ finds imposition of accessibility
requirements on e-government partners to be legally permissible,
agencies should be instructed and assisted to move forward on including
appropriate notices and requirements in their regulations, bid solicitations,
contracts, grants, and other instruments. To whatever extent various
laws are found to permit the establishment of such requirements,
the DOJ should work with NCD and other appropriate bodies to develop
suitable guidelines for use by line agencies in exercising this
important option.
7. THE INTELLECTUAL PROPERTY AND CIVIL RIGHTS CONFLICT
IN CYBERSPACE
As early as 1931, provision was made in our law for
the transcription of books into braille by the Library of Congress
for distribution through a national library system to persons who
are blind and, subsequently, also to people who have other reading
disabilities. Most recently, the Copyright Act was amended in 1996
to allow for the reproduction of all published books in "specialized
formats" by a variety of nonprofit organizations other than the
Library of Congress National Library Service for the Blind and Physically
Handicapped for use by persons with reading disabilities.126
Various safeguards are included in the law to prevent its being
used as a subterfuge for damaging the economic rights of copyright
holders, including bans on the distribution of the material for
money.
Notwithstanding the willingness of the publishing
industry to accept this legislation, recent developments suggest
that the relationship between the access rights of persons with
disabilities and the intellectual property rights of copyright holders
may no longer be so benign. Developments occurring in the past year
suggest that the intersection between technology and law has created
new issues.
Pursuant to the Digital Millennium Copyright Act of
1998 (DMCA),127 the DOJ appears
to have taken the position that copyright protection extends to
software created for copying electronic documents into formats other
than those prescribed by the producer. In one widely publicized
case, Russian computer programmer Dmitry Sklyarov was prosecuted
in this country for writing and selling a program that allowed Adobe
e-books to be copied into other formats not approved by the manufacturer.
Without going too far into the complexities of the case, it is enough
to note that by interpreting the DMCA as it did, the DOJ took the
view that not only the informational content but also the format
in which information is presented comes under the umbrella of intellectual
property. Ominously, the term widely used for what the programmer
did was interfering with the "access controls" that the producer
had a legal right to establish and enforce. In fact, development
and dissemination of this program that allowed Adobe e-books to
be copied into other formats was alleged to constitute a criminal
violation of the Copyright Act, as well as conspiracy under the
federal criminal code.
Although the defendant in this case does not appear
to have been primarily motivated by accessibility concerns, the
program he developed was said to represent the most effective means
for blind persons who use screen-readers to gain access to these
e-books. By the same token, no indication exists that the DOJ would
have considered Sklyarov's program legal, even if it had been intended
to facilitate access and had been distributed without charge only
to persons eligible for the Library of Congress program.
Under these circumstances, concern is warranted over
whether the DMCA will be interpreted to allow a variety of activities
done for the sake of access but potentially deemed violative of
the new law. If the DMCA does not authorize the disregard of "access
controls" for the sake of accessibility, especially where the alleged
infringement represents the only means for rendering the text in
a format that computer users with disabilities can access, what
options does the law provide for customers with disabilities to
access the e-books published in a proprietary format, such as Adobe's?
It is one thing for the law to contain no requirements that e-books
be made accessible. It is quite another when the refusal of an e-publisher
to provide them in an accessible format is backed by the weight
and sanction of the criminal law. It is comforting to assume that
no one would ever be prosecuted under these circumstances, but,
although comforting, is it necessarily true?
NCD recommends that the Library of Congress make
a determination regarding the means, if any, by which electronic
publications provided in inaccessible formats can legally be made
accessible to individuals with disabilities. It may be that
the "fair use" doctrine adequately covers such cases, but in the
face of the expansive definition accorded to intellectual property
rights in the electronic realm by industry and by federal criminal
law enforcers, this important question cannot be left to guesswork.
8. WIRELESS ACCESS FOR USERS OF HEARING AIDS
NCD congratulates the FCC for its issuance in October
2001 of a notice of proposed rulemaking (NPRM),128
under the authority of the Hearing Aid Compatibility Act of 1988
(HACA), which will signal the beginning of a full inquiry into the
current potential for requiring that mobile phones be made compatible
with hearing aids. The 1988 legislation had exempted mobile phones
from the hearing aid compatibility requirements applicable to other
phones but had instructed the FCC to periodically review this exemption
in the light of changing technology. This NPRM will facilitate the
development of a complete record of the technological, economic,
and other dimensions of the subject.
NCD hopes and believes that it will thus prove possible
for the FCC to determine that the exemption is no longer warranted
and therefore take action to establish a meaningful timetable for
bringing cellular phones into full compliance with the accessibility
provisions that apply generally throughout the telephone system.
9. ASSISTIVE TECHNOLOGY ACT REAUTHORIZATION
Earlier in this chapter we discussed the program for
AT loans that is prominently endorsed by the NFI. As noted, the
AFP operates under Title III of the Assistive Technology Act of
1998, but equipment loans are not the only important activity supported
by this legislation.
The AT Act--which had its origins in the Technology-related
Assistance for Individuals with Disabilities Act of 1998, or the
Tech Act as it is commonly called--also provides for the operation
of state-based assistive technology programs that carry out a variety
of advocacy, systems-change, technical assistance, information dissemination,
public awareness, and other activities on behalf of AT at the state
level. From their vantage point, these projects are uniquely positioned
to participate effectively in policy debates at the crucial state
level, and it is widely believed that they have played an instrumental
role in bringing about the consideration or incorporation of AT
into a wide variety of settings and decisions.
The AT Act had been scheduled to sunset at the end
of FY 2001, but action late in the first session of the 107th Congress
forestalled this by extending the program through September 30,
2002. With this reprieve, we must consider whether it should be
reauthorized and what form any long-term reauthorization should
take.
Congress is expected to hold hearings on the AT Act
early in the 2002 session. NCD believes that the AT Act should be
reauthorized. Without this statute, it is unclear who could perform
the many valuable functions currently carried out by the state-based
AT projects. It is also unclear what could replace the voice for
AT and accessibility in the councils of state government that the
AT Act projects represent.
The state AT projects have also been responsible for
operating the loan funds favored by the Administration. Were these
state AT programs not to continue, other alternatives for the operation
and accountability of the loan programs would need to be identified.
In many areas, the experience and knowledge of the
AT Act programs are unique and irreplaceable. Before we abolish
these small but tremendously instrumental programs, we must be able
to answer the question of who or what will take their place. NCD
believes that in the absence of any entity or institution readily
available to fulfill the roles played by these small programs at
state level, the AT Act should be reauthorized.
Another part of the AT Act has involved the provision
of funds to the state-based protection and advocacy (P&A) programs
for AT work. These funds, though again small in amount, have facilitated
the development of nationwide expertise on a variety of legal issues
surrounding AT and have contributed to the development of important
public policy and legal initiatives.
While the P&As derive their funds from a number
of program sources, the AT Act is the only source that focuses on
AT. Again, in the absence of any alternative resources willing and
capable of taking their place in this work, Congress should preserve
this valuable resource, which we believe yields far more than its
minimal cost. Accordingly, NCD recommends that P&A funding
be continued as an element of the AT Act program.
Chapter 12
International
1. INTERNATIONAL CIVIL RIGHTS
Early in 2001, NCD wrote to the secretary of state
requesting that American foreign policy initiatives ensure protection
of the civil rights of persons with disabilities.129
Although respectful of other cultures, including those with values
differing from our own, we believe that many legitimate opportunities
exist within the framework of the variety of international aid and
development programs, cultural exchanges, and bilateral and multilateral
relationships we maintain to encourage the fullest possible inclusion
of people with disabilities in all activities and benefits.
NCD appreciates that the State Department has been
totally absorbed in other concerns of the most fateful sort during
the final months of 2001.
In the experience of these recent months are strong
indications of the wisdom of incorporating a strong civil and human
rights commitment into the fabric of our nation's relations with,
and outreach to, other lands. For reasons that need no repetition
here, the treatment and the rights of women have become a centerpiece
of our foreign policy to a degree as never before. We have come
to understand that in the oppression of women and in the denial
of their human rights, many unpleasant truths about other societies
can be glimpsed, and we have learned that by pressing for recognition
of the dignity of women, other benefits can result.
As it may relate to Afghanistan, NCD believes that
many of the same truths, the painful and the hopeful alike, underscore
the aspiration for equal rights and opportunity for people with
disabilities. As that nation struggles to lift itself from the crushing
burdens of the past twenty years of foreign occupation, civil war,
and despotism, we hope that the values of such laws as Section 504
or Title II of the ADA can find their way into its new laws and
practices.
Tragically, one enduring legacy of the past two decades
is likely to be the presence of a significant number of people with
disabilities in Afghani society. Any measures that facilitate the
fullest participation of these individuals in society cannot help
but be advantageous to reconstruction and to the future.
NCD believes that in due time, circumstances will
be presented for NCD to resume its work with the State Department
on behalf of the application of disability rights in a broad range
of settings and under a number of programs. NCD also believes that
it is necessary for the Council to render its assistance to the
State Department to continue to craft a foreign policy that respects
and advances all human rights.
2. UNITED NATIONS CONVENTION
On November 30, 2001, the United Nations General Assembly
approved by consensus the Mexican resolution calling for the establishment
of an ad hoc committee, open to participation of all member
states and accredited observers, to consider proposals for a comprehensive
international convention to protect and promote the rights and dignity
of persons with disabilities.130
In cooperation with the United States International Council on Disability
(USICD), NCD co-sponsored a meeting in June 2002 that brought together
disability and international human rights advocates to discuss the
rationale for the convention and to explore the application of the
future convention to the human rights of people with disabilities.
NCD is proud to participate in this effort and looks forward to
the development and eventual ratification of the proposed convention.
3. INTERNATIONAL DAY OF DISABLED PERSONS
The annual International Day of Disabled Persons ceremonies
were held on December 7, 2001. President Vicente Fox of Mexico,
the lead sponsor of the UN resolution described above, was honored.
Also honored for their human and disability rights work were seven
eminent American women who served in the previous Administration
and who continue to serve the cause of human and civil rights in
a variety of capacities today. We know that members of the current
Administration will in due course be honored for their share of
accomplishments on behalf of these great causes.
Chapter 13
Homeland Security
From a term that would have evoked various interpretations
and a great deal of puzzlement among the general public as recently
as last summer, "homeland security" has emerged as a central concern
of government and citizens and as a major component of national,
state, and local budgets. In too many instances, NCD has learned
of the emergence of assumptions and stereotypes of people with disabilities--for
example, restricting the access of people with disabilities to lower
levels of workplaces, places of public accommodations, and housing.
In planning for how our nation will respond to contingencies that
all hope will never occur, the presence among us of more than 50
million Americans with disabilities must not be overlooked or forgotten.
Experience in the grim and terrifying hours of September
11 illustrates many of the issues facing this segment of our population.
People who were deaf often could not follow news reports on TV,
because of the lack of captions. If life-and-death instructions
were conveyed by the emergency warning broadcast system today, would
their accessibility to people who cannot hear be ensured?
Evacuation plans for major buildings and facilities
did not always include provisions to ensure that people with disabilities
could have an equal chance of making it out. If a major facility
had to be evacuated today, would occupants who are blind have the
means of knowing the location of emergency exits? Would persons
using wheelchairs know where to go or what to do if elevators were
turned off? Would persons who cannot hear be alerted by visual alarms
to the need for swift action? Would people with vocal communication
disabilities be heard when rescuers searched for those in need of
help?
Throughout this report we have discussed many issues
bearing on equality of opportunity and equality of treatment. As
the imperatives of domestic security and national preparedness make
more vividly clear than ever, these concerns are far from abstract.
To put the matter in yet starker terms, if a nuclear facility were
to be the target of terrorism and public health officials were to
distribute potassium iodide to protect the populace against the
effects of radiation, would people with disabilities know where
to get it, have physical access to the distribution centers, be
able to open the packages or seals, or be able to read the usage
instructions? It is easy to say that someone would help them, would
do it for them, but is that comforting expectation enough?
Let us learn from our tragedy and let us use our solidarity
and shared sense of national purpose to ensure accessibility and
equality, not only in our reaction to danger but as well in the
pursuit of our hopes. The values we embrace and offer to others
are not values for some. They are nothing if not values for all.
Endnotes
1. Major
NCD reports, recommendations, and policy analyses include Toward
Independence: An Assessment of Federal Laws and Programs Affecting
Persons with Disabilities (1986); Meeting the Unique Needs
of Minorities with Disabilities: Report to the President and the
Congress (1993); Progress in Advancing the Status of People
with Disabilities Around the World: The Work of the United States
Delegation to the 33rd Session of the Commission for Social Development
of the United Nations (1993); Sharing the Risk and Ensuring
Independence: A Disability Perspective on Access to Health Insurance
and Health-related Services (1993); Study on the Financing
of Assistive Technology Devices and Services for Individuals with
Disabilities (1993); Inclusionary Education for Students
with Disabilities: Keeping the Promise (1994); Making Health
Care Reform Work for Americans with Disabilities: Summary Information
on Five Town Meetings on Health Care Reform (1994); Disability
Perspectives and Recommendations on Proposals to Reform the Medicaid
and Medicare Programs (1995); Access to the Information Superhighway
and Emerging Information Technologies by People with Disabilities
(1996); Foreign Policy and Disability (1996); Guidance
from the Graphical User Interface (GUI) Experience: What GUI Teaches
about Technology Access (1996); Outreach to Minorities with
Disabilities and People with Disabilities in Rural Communities
(1997); Equality of Opportunity: The Making of the Americans
with Disabilities Act (1997); Impact of the Welfare Reform
Legislation on Legal Immigrants with Disabilities (1997);
Assisted Suicide: A Disability Perspective Position Paper (1997);
Grassroots Experiences with Government Programs and Disability
Policy (1998); Reorienting Disability Research (1998); Access
to Multimedia Technology by People with Sensory Disabilities
(1998); Implementation of the National Voter Registration Act
by State Vocational Rehabilitation Agencies (1999); Implementation
Plan for Executive Order 13166: Improving Access to Services for
Persons with Limited English Proficiency.
2. P.L.
101-336, codified at 42 USC Sec. 12101 et seq.
3. Title
I, 42 USC Sec. 12111.
4. Title
II, 42 USC Sec. 12131.
5. Title
III, 42 USC Sec. 12181.
6. 47
USC. Sec. 255 (currently available at http://www.fcc.gov/cgb/dro/telecom_language.html).
Implementing regulations at 36 CFR. Part 1193 (currently available
at http://frWebgate.access.gpo.gov/cgi-bin/get-cfr.cgi?TITLE=36&PART=1193&SECTION=1&YEAR=2001&TYPE=TEXT).
7. P.L.
105-220, Sec. 408(b), codified at 29 USC Sec. 794d (currently available
at, among other Web sites, http:///www.access-board.gov/sec508/guide/act.htm).
Guidelines and interpretive regulations are at 36 CFR Part 1194,
and 48 CFR Parts 2, 7, 10-12, and 39 (currently available at http://www.section508.gov/docs/final9967A.doc).
8. See,
e.g., http://www.w3.org.
9. The
Bobby program was developed by the Center for Applied Special Technology
(CAST) (the latest version of this tool can be reached through http://www.cast.org).
10.
Fact Sheet: Steps Taken to Ensure New Security Requirements Preserve
and Respect the Civil Rights of People with Disabilities (Office
of the Assistant General Counsel for Aviation Enforcement Proceedings,
and Aviation Consumer Protection Division, U.S. Department of Transportation
October 29, 2001) (currently available at http://www.dot.gov/airconsumer/01-index.htm).
11.
P.L. 101-431.
12.
47 USC Sec. 613 (b). Under the authority of the same section, the
FCC has adopted rules requiring the provision of a specified number
of hours of video description on network and major cable TV broadcasts.
Video description (sometimes also called audio description or descriptive
video) is the inclusion in breaks in the dialogue of spoken narration
described the visual elements of the program. These rules are scheduled
to take effect April 1, 2002. (FCC Docket MM 99-339.)
13.
President Bush's statement announcing the New Freedom Initiative
(NFI) (February 2001) (currently available at http://www.whitehouse.gov/news/freedominitiative/text/freedominitiative.html).
Compare, Investing in Independence: Transition Recommendations
for President George W. Bush (NCD, January 2001) (currently
available at http://www.ncd.gov/newsroom/publications/2001/bush.htm).
14.
P.L. 105-17, codified at 20 USC Sec. 1400 et seq.
15.
The Developmental Disabilities and Bill of Rights Act, as amended,
P.L. 106-402, codified at 42 USC Sec. 6000 et seq.
16.
Social Security Act Title XIX, codified at 42 USC Sec. 1896 et seq.
17.
The federal Rehabilitation Act of 1973, as most recently amended
by Title IV of the Workforce Investment Act of 1998, P.L. 105-220,
codified at 29 USC. Sec. 701 et seq.
18.
The Assistive Technology Act of 1998, P.L. 105-394, codified at
29 USC Sec. 3011.
19.
P.L. 103-218.
20.
The Ticket to Work and Work Incentives Improvement Act of 1999,
P.L. 106-170 (1999).
21.
Executive Order 13217 (June 18, 2001).
22.
Delivering on the Promise: Preliminary Report of Federal Agencies'
Actions to Eliminate Barriers and Promote Community Integration
(HHS 12stbastja) (available at http://www.hhs.gov/newfreedom/presidentrpt.html).
23.
Summary Report of Priority Areas and Indicators for IDEA Focused
Monitoring (October 2001) (currently available at http://spannj.org/priorityareas-indicators.htm).
Also, Panel Discussion on Focused Monitoring: A Video Web Cast of
the U.S. Department of Education's Office of Special Education and
Rehabilitative Services (OSERS), October 9, 2001 (currently available
at http://www.connectlive.com/events/osers).
24.
From Privileges to Rights: People Labeled with Psychiatric Disabilities
Speak for Themselves (NCD 2001) (currently available at http://www.ncd.gov/newsroom/publications/2000/privileges.htm).
Also, News Release, (NCD 01-318, January 3, 2001) National Council
on Disability Acknowledges Surgeon General's Report on Children's
Mental Health. Compare, Surgeon General's Conference on Children's
Mental Health: A National Action Agenda (currently available at
http://www.surgegeneral.gov/cmh/childreport.htm).
25.
List of the five civil rights reports: Promises to Keep: A Decade
of Federal Enforcement of the Americans with Disabilities Act
(2000) (available at http://www.ncd.gov/newsroom/publications/2000/promises_1.htm);
Back to School on Civil Rights (2000) (currently available
at http://www.ncd.gov/newsroom/publications/2000/backtoschool_1.htm);
Enforcing the Civil Rights of Air Travelers with Disabilities:
Recommendations for the Department of Transportation and Congress
(1999) (currently available at http://www.ncd.gov/newsroom/publications/1999/acaa.htm);
The Accessible Future (2001)(currently available at http://www.ncd.gov/newsroom/publications/2001/accessiblefuture.htm);
Reconstructing Fair Housing (2001) (currently available at
http://www.ncd.gov/newsroom/publications/2001/fairhousing.htm).
26.
Achieving Independence: The Challenge for the 21st Century
(1996) (currently available at http://www.ncd.gov/newsroom/publications/1996/achieving.htm).
27.
National Disability Policy: A Progress Report, November 1999-November
2000 (NCD 2001, available at http://www.ncd.gov/newsroom/publications/2001/progressreport2000.htm).
28.
See, e.g., the Hale article, available at http://www.bls.gov/opub/mlr/2001/06/ressum1.htm.
Compare, the three reports issued by the Presidential
Task Force on Employment of Adults with Disabilities (PTFEAD): Recharting
the Course, 1998 Report to the President (currently available
at http://www.dol.gov/_sec/programs/ptfead/rechart.htm);
Recharting the Course: If Not Now, When? 1999 Report to the President
(currently available at http://www.dol.gov/_sec/programs/ptfead/ifnotnow.htm);
and Recharting the Course: Turning Points, Third Report to the
President, 1999 (currently available at http://www.dol.gov/_sec/programs/ptfead/2000rpt/index.htm).
29.
See, e.g., The ADA Notification Act of 2000, HR 3590 (106th Cong.
Second Session); S. 782 and HR 914 (107th Cong. First Session).
30.
Progress Report, Note 27 supra.
31.
Sutton v. United Air Lines, 527 US 471 (1999); Murphy
v. United Parcel Service, 527 US 516 (1999); Albertsons Inc.
v. Kirkingburg, 527 US 555 (1999).
32.
Board of Trustees of the University of Alabama v. Garrett,
531 US 356 (2001).
33.
Olmstead v. L. C. 527 US 581 (1999).
34.
Ex Parte Young, 209 US 123 (1908).
35.
The Supreme Court in Garrett (531 US at 374) recognizes
the distinctions arising from jurisprudence under Young,
but the key question is what will happen when a suit, though nominally
for prospective, nonmonetary relief, comes along, if that relief
requires the state to spend money.
36.
Promises to Keep, Note 25 supra.
37.
The Department of Justice's quarterly reports on enforcing the ADA
are available through the department's ADA home page at http://www.usdoj.gov/crt/ada/adahom1.htm.
38.
The DOJ'S amicus briefs in Pallozzi v. All State Life Insurance,
198 F. 3d 28 (2d Cir. 1999), amended and rehearing denied en banc
(204 F. 3d 392 2000); Leonard F. v. Israel Discount Bank of New
York, 199 F. 3d 99 (2d Cir. 1999); and Hooks (Docket
No. 9950891, 5th Cir. 2000, unpublished opinion) (amicus brief currently
available at http://www.usdoj.gov/crt/briefs/hooks.htm).
NCD has also filed amicus briefs in the Supreme Court in major cases,
including Toyota Motor Mfg., Kentucky v. Williams, decided
in favor of the employer in January 2002, which addresses the criteria
for determining who is entitled to request reasonable accommodations
from an employer under Title I of ADA (brief available at http://www.ncd.gov/newsroom/publications/toyota_amicus.htm).
39.
Apart from judicial advocacy, the state of Minnesota has waived
its 11th Amendment immunity by statute. (Minn. Laws of 2001, can.
159).
40.
Compare, NCD amicus brief in the Supreme Court in Garrett
(currently available at http://www.ncd.gov/newsroom/publications/amicus_99-1240.htm).
41.
29 USC Sec. 794.
42.
See NCD's Position Paper on Genetic Discrimination Legislation
and Principles for Genetic Discrimination Legislation
(March 4, 2002) (currently available at http://www.ncd.gov/newsroom/publications/geneticdiscrimination_positionpaper.htm).
43.
The Voting Rights for the Elderly and Handicapped Act, P.L. 98-435
(1984).
44.
Currently available at http://www.ncd.gov/newsroom/publications/electionreform.htm.
Compare, Voters with Disabilities: Access to Polling Places and
Alternative Voting Methods, (U.S. General Accounting Office,
10staestja; GAO-02-107) (currently available at http://www.gao.gov/new.items/d02107.txt).
45.
HR 3295 (107th Cong. First Session). Compare, Inclusive Federal
Election Reform (NCD Web site) (currently available at http://www.ncd.gov/newsroom/publications/electionreform.htm).
46.
2 USC Sec. 1302 (b).
47.
Interim Section 102 (b) Report: Electronic Information Systems
Review and Report on the Applicability to the Legislative Branch
of Section 508 of the Rehabilitation Act of 1973 as Amended
(U.S. Cong., Office of Compliance 11stacstja) (currently located
at http://www.compliance.gov/images/section508.pdf).
48.
Carrying On the Good Fight: Summary Paper from Think Tank 2000--Advancing
the Civil and Human Rights of People with Disabilities from Diverse
Cultures (2000) (currently available at http://www.ncd.gov/newsroom/publications/2000/think2000.htm).
49.
RSA's award of a $2.5 million grant for the establishment of the
National Technical Assistance Center for Asian Americans and Pacific
Islanders, at the University of Hawaii Manoa, was announced December
14, 2001, in a release from disabilitydirect--announcement at www.disabilitydirect.gov.
The name and citation given to the 1999 Asian Americans and Pacific
Islanders Executive Order.
50.
Lift Every Voice: Modernizing Disability Policies and Programs
to Serve a Diverse Nation (1999) (currently available at http://www.ncd.gov/newsroom/publications/1999/lift_report.htm).
51.
Kimel v. Florida Board of Regents, 528 US 62 (2000).
52.
Buckhannon Board and Care Home Inc. v. West Virginia Department
of Health and Human Resources, 532 US 598 (2001).
53.
West Side Mothers v. Haveman, 133 F. Supp. 2d 549 ED Mich.
2001) (appeal pending in the Seventh Circuit).
54.
After this report was drafted but prior to its publication, the
Sixth Circuit ruled in May 2002 in favor of West Side Mothers
in rejecting the argument that sovereign immunity shields state
officials accused of depriving citizens of a federal right.
55.
Alexander v. Sandoval, 531 US 1049 (2001).
56.
See The Sandoval Ruling (August 17, 2001) (currently available
at http://www.ncd.gov/newsroom/publications/sandoval.htm),
an analysis developed by Professor Robert L. Burgdorf Jr. for NCD
on the U.S. Supreme Court decision in Alexander v. Sandoval
and its implications for key disability rights laws.
57.
NCD letter of November 8, 2001, to the assistant attorney general
for civil rights (currently available at http://www.ncd.gov/newsroom/correspondence/boyd_11-08-01.htm).
58.
DOJ Supreme Court amicus brief in Chevron Inc. v. Echazabal
(currently available at http://www.usdoj.gov/osg/briefs/2001/3mer/1ami/2000-1406.mer.ami.html).
59.
After this Report was drafted but prior to its publication the Supreme
Court decided in favor of Chevron. NCD's next progress report will
report on this and other Supreme Court decisions involving the ADA.
60.
Letter from NCD to the U.S. solicitor general, August 29, 2001 (currently
available at http://www.ncd.gov/newsroom/correspondence/olson_08-29-01.htm).
61.
It may be that the DOJ'S role in this case, supporting a rule promulgated
by the EEOC, reflects an administrative consideration or an interagency
responsibility that supersedes the department's view on the merits
of the case.
62.
HR 1 (107th Cong. First Session), enacted as P.L. 107-110.
63.
Progress Report, Note 27 supra..
64.
H. Rep. 107-334 (107th Cong. First Session, December 2001).
65.
Back to School on Civil Rights, Note 27 supra. Also, NCD's
IDEA reauthorization white paper (currently available at http://www.ncd.gov/newsroom/reauthorizations/idea/idea.htm).
See also http://spannj.org/priorityaeas-indicators.htm.
Also, Summary Report of Priority Areas, Note 23 supra.
66.
Released October 3, 2001 (currently available at http://www.whitehouse.gov/news/releases/2001/10/20011003-1.htm).
67.
Testimony of Secretary Rod Paige before the House Committee on Education
and the Workforce regarding the Overidentification of Minority Students
Under the Individuals with Disabilities Education Act, October 4,
2001 (currently available at http://www.ed.gov/speeches/10-2001/011044.html).
68.
Note 63 supra.
69.
Progress Report, Note 27 supra.
70.
Id.
71.
NCD letter to the chair of the Senate Finance Committee, April 18,
2001 (currently available at http://www.ncd.gov/newsroom/correspondence/grassley_4-18-01.html#dmain).
72.
Position Paper on Patients' Bill of Rights (March 30, 2001) (currently
available at http://www.ncd.gov/newsroom/publications/patientsbillofrights.htm).
Also, Testimony of Marca Bristo, Society's Great Challenge: The
Affordability of Long-Term Care, submitted to the Senate Committee
on Finance (April 18, 2001) (currently available at http://www.ncd.gov/newsroom/testimony/bristo_4-18-01.htm).
73.
See also NCD's Position Paper on Patients' Bill of Rights Legislation
(March 30, 2001) (currently available at http://www.ncd.gov/newsroom/publications/patientsbillofrights.htm).
74.
From Privileges to Rights, Note 24 supra.
75.
P.L. 106-515.
76.
HR 2260/S. 1272 (106th Cong. Second Session 2000).
77.
Note 1, supra.
78.
CIM 60.9. same citation to the CMS decision rescinding the AAC national
coverage decision.
79.
Olmstead v. L. C., 527 US 581 (1999).
80.
Delivering on the Promise, Note 22 supra.
81.
Disability Rights Education and Defense Fund (DREDF) press release
of August 27, 2001, announcing denial by federal district judge
of motion by defendant's to dismiss suit by independent living advocates
against rebuilding of hospital (available at http://www.dredf.org/press_releases/laguna.html).
82.
Transition and Post-School Outcomes report, Note 1 supra.
83.
Progress Report, Note 25 supra.
84.
Executive Order 13078 (March 13, 1998), Section 2 (h) as amended
October 25, 2000.
85.
U.S. Department of Labor, Office of Disability Employment Policy,
press release, October 1, 2001. Lists of grant categories and grantees
are included (available through http://www.dol.gov/dol/odep/public/media/press/).
86.
Keeping the Promise, Note 25 supra.
87.
TWIIA, Note 20 supra. (Information on the status of the TWIIA program
is available at http://www.ssa.gov/work/ticket/ticket.html).
88.
Further information on the Medicaid infrastructure grants is available
at http://www.hcfa.gov/medicaid/twwiia/infrastr.htm`#;d.
89.
The OPM reasonable accommodation suggested language interim rule
is currently available through www.opm.gov/fedregis/index.htm.
90.
P.L. 105-220.
91.
For an illustration of one well-intentioned effort by a federal
agency, in this case the FCC, to grapple with these legal complexities,
consider the FCC Report and Order on Docket Nos. 98-204 and 96-16
(currently located at http://www.fcc.gov/Bureaus/Mass_Media/Orders/2000/fcc00020.pdf).
92.
Internal Revenue Code (IRC) Sec. 44, codified at 26 USC Sec. 44.
93.
26 USC Sec. 190.
94.
26 USC Sec. 51.
95.
26 USC Sec. 67 (d).
96.
P.L. 104-193. Also, Indicators of Welfare Dependence, Annual
Report to Congress by the Department of Health and Human Services
(March 2001) (currently available at http://aspe.hhs.gov/hsp/indicators01/index.htm).
Also, fact sheet: Welfare Reform: Implementing The Personal Responsibility
and Work Opportunity Reconciliation Act of 1996 (currently available
at http://www.hhs.gov/news/press/2001/pres01/fswelre=m.html).
97.
See http://www.hud.gov/reform/strategicplan.pdf,
pages 28 and 45, about homeownership disparities. See also, http://www.huduser.org/publications/pdf/brd/04Gabriel.pdf.
98.
Delivering on the Promise, Note 22 supra.
99.
Reconstructing Fair Housing (NCD 2001) (currently available
at http://www.ncd.gov/newsroom/publications/2001/fairhousing.htm).
100.
Fair Housing Act of 1968, 42 USC Sec. 3601.
101.
The Fair Housing Amendments Act of 1988, P.L. 100-430.
102.
NCD letter to the secretary of HUD, November 21, 2001 (currently
available at http://www.ncd.gov/newsroom/correspondence/martinez_11-21-01.htm).
103.
The HUD accessibility survey.
104.
For example, HR 421 and HR 674 (107th Cong. First Session).
105.
The Wendell H. Ford Aviation Investment and Reform Act for the 21st
Century (AIR-21 Act) of 2000. Progress Report, Note 27 supra.
106.
Fact Sheet, Note 10 supra.
107.
TEA-21, the Transportation Equity Act for the 21st Century. Progress
Report, Note 27 supra.
108.
James v. Peter Pan Transit Management Inc. (EDNC) and Richardson
and Steele v. City of Steamboat Springs Colo. (D. Colo.) (cases
in which the DOJ has intervened to support the accessibility rights
of public transit users). For further discussion, see Progress Report,
Note 27 supra.
109.
Press release, distributed by Justice For All, December 11, 2001
(currently available through http://www.jfanow.org).
110.
Correspondence among NIDRR, state AFP grant recipients, and the
national technical assistance provider, indicating NIDRR's views
regarding will and what will not qualify as a match under the program.
111.
P.L. 106-170 Sec. 303 (1999). The study was launched in late 2001
and results are expected in 2002.
112.
Progress Report, Note 27 supra.
113.
Access Board guidelines, Note 7 supra
114.
Federal Acquisition Regulation (FAR), Note 7 supra.
115.
The Accessible Future (NCD 2001) (currently available at
http://www.ncd.gov/newsroom/publications/2001/accessiblefuture.htm).
116.
Note 8, supra.
117.
Web Obstacles Abound, Federal Computer Weekly (October 22,
2001) (summarizes research findings of Jakob Nielsen regarding costs
and difficulties associated with the existence of Web sites that,
although meeting legal accessibility requirements, are not readily
usable) (currently available at http://www.fcw.com/fcw/articles/2001/1022/Web-access-10-22-01.asp).
118.
Progress Report, Note 27 supra.
119.
P. L. 104-104 Sec. 708.
120.
Note 6, supra.
121.
Preamble to Section 255 implementation guidelines, 36 CFR. Part
1193 (currently available at http://www.access-board.gov/telecomm/html/telfinal.htm).
122.
Id.
123.
The possibility that Section 255 would apply only to a comparatively
narrow range of telecommunications activities was not discussed
during the congressional deliberations over inclusion of civil rights
protections in the Telecommunications Act. It came as a shock to
many advocates.
124.
For example, HR 1542 (107th Cong. First Session 2001).
125.
Gould, Martin. Building an Inclusive E-government Agenda for
All Americans (in press, Mary E. Switzer Seminar Monograph).
Compare, S. 803 and H. Res. 2458 (107th Cong. First Session).
126.
Interestingly, this change in the law enabled qualifying nonprofit
membership and service organizations to make such copies without
securing permission from the copyright holder. However, large print
was excluded from the definition of specialized formats, presumably
because there is a commercial market for large print materials.
127.
The Digital Millennium Copyright Act of 1998 (DMCA), P.L. 105-304.
128.
FCC Notice of Proposed Rulemaking (NPRM), November 14, 2001, In
Re: Section 68.4 of the FCC's Rules Governing Hearing Aid-compatible
Telephones (especially statement of Commissioner Abernathy).
129.
NCD letter to the secretary of state, February 12, 2001 (currently
available at http://www.ncd.gov/newsroom/correspondence/cpowell-02-12-01.htm).
130.
NCD Bulletin (December 2001) (currently available at http://www.ncd.gov/newsroom/bulletins/1201.htm).
PART II
Major Activities Summary--Fiscal
Year 2001
The National Council on Disability (NCD) continues
to be a leader in the development and analysis of disability civil
rights policies that affect 54 million Americans with disabilities
and their families. With a budget authorization of $2,615,000, NCD
conducted a large array of activities in fiscal year (FY) 2001.
Those activities promoted policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities,
regardless of the nature or severity of the disability, from all
cultural backgrounds. They also helped individuals with disabilities
realize the promise of the Americans with Disabilities Act (ADA)
by empowering them to achieve economic self-sufficiency, independent
living, inclusion, and integration into all aspects of society.
In FY 2001, NCD continued to review and evaluate new
and emerging policy issues that have an impact on people with disabilities.
NCD continued to identify the overall needs and concerns of people
with disabilities by conducting hearings, forums, and conferences
throughout the country and by responding to thousands of telephone,
e-mail, and written inquiries on ADA and other disability civil
rights issues.
NCD also continued its Disability Civil Rights Monitoring
Project by completing research and comprehensive reviews of the
first 12 years of enforcement efforts under the 1988 Fair Housing
Amendments Act and related legislation and of the first 27 years
of enforcement efforts under Section 504 of the Rehabilitation Act
of 1973, as amended.
Also during this fiscal year, NCD began research on
the implementation of the Civil Rights of Institutionalized Persons
Act of 1980 and the landmark U.S. Supreme Court decision in Olmstead
v. L.C. 527 U.S. 581. Both studies are part of NCD's series
of reports known as Unequal Protection Under Law.
The Disability Civil Rights Monitoring Project, or
Unequal Protection Under Law series, grew out of NCD's 1996 national
policy summit, at which more than 300 disability community leaders
from diverse backgrounds called on NCD to work with federal agencies
to develop strategies for greater enforcement of existing disability
civil rights laws. On March 18, 1999, NCD produced its first report,
Enforcing the Civil Rights of Air Travelers with Disabilities.
The second report, Back to School on Civil Rights, on the
enforcement of the Individuals with Disabilities Education Act,
was issued on January 25, 2000. The third report, Promises to
Keep: A Decade of Federal Enforcement of the Americans with Disabilities
Act, was released on June 27, 2000. The fourth report, The
Accessible Future, was issued on June 21, 2001. The enforcement
reports to follow in this series will be on the Fair Housing Amendments
Act of 1988 and Section 504 of the Rehabilitation Act. They will
be released in FY 2002.
Major activities for FY 2001 also included the release
of several other publications that include The Accessible Future,
National Disability Policy: A Progress Report, Position Paper
on the Patients' Bill of Rights Legislation, Inclusive Federal
Election Reform, Applied Leadership for Effective Coalitions,
and Investing in Independence: Transition Recommendations for
President George W. Bush.
NCD also established a Cultural Diversity Advisory
Committee, which provides advice and recommendations to NCD on issues
affecting people with disabilities from culturally diverse backgrounds.
Specifically, the committee will help identify issues, expand outreach,
infuse participation, and elevate the voices of underserved and
unserved segments of this nation's population. This will help NCD
develop federal policy that will address the needs and advance the
civil and human rights of people from diverse cultures.
ACTIVITIES FOR FY 2001
NCD conducted a variety of activities in FY 2001 that
significantly increased consumer input into public policy issues
affecting people with disabilities and provided information on NCD's
daily operations. A summary of those activities follows.
NCD Sponsors International Conference
October 20-26, 2000
NCD joined the Social Security Administration in sponsoring
the International Disability Law and Policy Conference held in Washington,
D.C. Other federal sponsors included the Presidential Task Force
on Employment of Adults with Disabilities; the President's Committee
on Employment of People with Disabilities; the Department of State;
the Department of Health and Human Services, Center for Mental Health
Services; the U.S. Agency for International Development; the U.S.
Information Agency; and the Department of Education, Office of Special
Education and Rehabilitative Services.
During the five-day conference, more than 130 international
disability law and policy subject-matter experts from more than
40 countries discussed legal theories, practical implementation
issues, and strategies to advance or implement laws and policies
to protect people with disabilities from discrimination and exclusion.
One important outcome of the conference was broad support for an
international convention on the human rights of people with disabilities.
NCD Updates Web Site
November 22, 2000, Washington, D.C.
NCD added three new features to its award-winning
Web site (www.ncd.gov) that will help
people with disabilities and those with limited English proficiency
(LEP). One of the biggest challenges on the Web is finding what
you are looking for. To help users find information more quickly,
NCD has added a Netscape Web Publisher search function. This search
function will allow users to quickly pinpoint specific information
anywhere within the NCD Web site. Users can search through NCD documents
for a specific word, obtaining search results that list all documents
that match the query. Users can then select a document from the
list to browse in its entirety. This function provides easy access
to server content.
To help people with LEP, NCD has added a language
translation function. Known as Babel Fish, this automatic translation
service removes language barriers across the World Wide Web. Babel
Fish translates to and from English, French, German, Italian, Portuguese,
and Russian.
A list of frequently asked questions (FAQs) was also
added to the NCD home page to help users answer standard questions
about NCD, its mission, and the availability of disability resources.
NCD Seeks Research Contractors
December 20, 2000, Washington, D.C.
NCD published two requests for proposal (RFPs) in
Commerce Business Daily. The first sought an independent
contractor to develop and conduct a study evaluating the extent
to which people with disabilities living in institutions are being
served consistent with the Civil Rights of Institutionalized Persons
Act and the Americans with Disabilities Act. The study will analyze
data on institutional practices from a sampling of state institutions
(varying from those with best practices to those with documented
violations) to present findings about existing practices, assess
compliance, and make recommendations for improving the quality of
life and safeguarding the human and civil rights of people with
disabilities who live in institutions. Findings and recommendations
from this study will be a point of reference for NCD's study evaluating
states' implementation of the Olmstead v. L.C. Supreme Court
decision, which gave people with disabilities the legal right to
choose community-based support options over institutional living.
The second RFP sought an independent contractor to
develop and conduct a study of current strategies (including NCD's
Closing the Gap: Ten-Point Strategy for the Next Decade of Disability
Civil Rights Enforcement (http://www.ncd.gov/newsroom/publications/2000/gap.htm)
for the swift and effective implementation of the 1999 Supreme Court
decision in Olmstead v. L.C. This decision mandated a systemic
change having major impacts for national and state-funded residential
options for people with severe physical and mental disabilities.
Despite a January 2000 directive to states from the Health Care
Financing Administration strongly encouraging timely implementation,
recent research indicates that the pace of progress is very slow
in many states. The study will identify barriers to community placement
and include recommendations for their removal.
NCD Welcomes New Members
January 3, 2001, Washington, D.C.
On January 3, President Clinton made two recess appointments
to NCD. NCD said goodbye to outgoing member Shirley W. Ryan, who
made numerous contributions to the empowerment of people with disabilities,
especially in the areas of youth and the Individuals with Disabilities
Education Act (IDEA). NCD member Michael Unhjem was also replaced.
NCD welcomed new members Edward Correia of Bethesda, Maryland, and
Gerald S. Segal of Haverford, Pennsylvania.
NCD Submits Transition Recommendations
to President Bush
January 17, 2001, Washington, D.C.
On February 1, President George W. Bush released his
New Freedom Initiative (www.whitehouse.gov/news/freedominitiative.html),
which lays out a blueprint to increase investment in and access
to assistive technologies and a high-quality education and to help
integrate Americans with disabilities into the workforce and into
community life.
NCD presented the Bush Transition Team with a copy
of NCD's disability policy plan titled Investing In Independence:
Transition Recommendations for President George W. Bush. (www.ncd.gov/newsroom/publications/bush.htm).
The document was provided to assist with transition efforts that
involve disability policy. President Bush's New Freedom Initiative
provides opportunities for the necessary changes to occur through
the implementation of a coordinated, informed transition plan. NCD
has, over the past several years, issued numerous civil rights evaluations
and disability policy reports directly related to the areas articulated
in the New Freedom Initiative. In submitting its transition recommendations,
NCD offered its expertise and wealth of collective grassroots experience
to help President Bush at the outset of his new administration and
beyond.
NCD Conducts Community Briefing
February 6, 2001, Myrtle Beach, SC
NCD conducted a community briefing for people with
disabilities that focused on NCD's latest findings and recommendations
on federal disability civil rights laws.
NCD Publishes Applied Leadership
for Effective Coalitions
February 14, 2001, Washington, D.C.
NCD published Applied Leadership for Effective
Coalitions (www.ncd.gov/newsroom/publications/appliedleadership.htm),
which was designed to cultivate leadership development and coalition
building across diverse cultures and disabilities with the hopes
that we will continue to find common ground. The need for this guide
grew out of an NCD-sponsored meeting among people from diverse cultures
in May 2000.
NCD Releases Position Paper on Election
Reform
March 15, 2001, Washington, D.C.
NCD released a position paper on Inclusive Federal
Election Reform (www.ncd.gov/newsroom/publications/electionreform.htm),
which contains recommendations to effectively address the broad
range of issues related to voting accessibility for people with
disabilities and to develop strategic actions at the national level.
Disability Community Mourns the
Loss of Rae Unzicker
March 22, 2001, Sioux Falls, SD
Rae Unzicker, a longtime disability civil rights advocate
and beloved member of NCD since 1995, died at her home in Sioux
Falls, South Dakota. She was 52. Her work on behalf of people with
psychiatric disabilities is internationally known. NCD's 2000 report
From Privileges to Rights: People Labeled with Psychiatric Disabilities
Speak for Themselves (www.ncd.gov/newsroom/publications/privileges.htm)
was the brainchild of Rae Unzicker. She was a passionate speaker
who wrote articles and made appearances on numerous television talk
shows. Her contributions were significant. We will miss her dearly.
NCD Announces Third Fellowship
March 1, 2001, Washington, D.C.
In 1999, NCD established the National Disability Fellowship
Program in Washington, D.C., to identify and develop new leaders
with disabilities to enhance NCD's policy capacity. NCD began accepting
applications for the third appointment, which will begin January
7, 2002.
NCD Releases Patients' Bill of Rights
Position Paper
March 30, 2001, Washington, D.C.
NCD released its Position Paper on Patients' Bill
of Rights Legislation
(www.ncd.gov/newsroom/publications/patientsbillofrights.htm).
As part of its health care agenda, NCD has long supported
the enactment of a comprehensive and enforceable patients' bill
of rights. In its 1996 report Achieving Independence (www.ncd.gov/newsroom/publications/achieving.htm),
NCD asserted that "all managed care plans, including those that
serve only privately insured persons, should be required to meet
federal standards to ensure access to specialty care, adequate grievance
and appeals procedures, and equitable utilization review criteria."
People with disabilities and chronic illnesses are
often high users of health care services and devices and thus are
a litmus test for assessing the effectiveness of patients' rights
legislation. In other words, if a patients' bill of rights protects
people with disabilities, it is bound to adequately protect the
rights of all health care consumers.
NCD has identified the aspects of a patients' bill
of rights that are most important to people with disabilities and
chronic illnesses. NCD does not endorse any specific legislation.
Rather, NCD supports any approach that meets the principles that
are identified and described in this document. NCD's hope is that
members of Congress and their staff, other federal and state policymakers,
and people with disabilities view this position paper as a valuable
tool as Congress continues to debate this important issue,
NCD Participates in Air Carrier
Access Act Conference
May 3, 2001, Washington, D.C.
NCD participated in a U.S. Department of Transportation-sponsored
forum on "Working
Together to Improve the Air Travel of Passengers with Disabilities."
The purpose of this invitation-only forum was to provide disability
community organizations, representatives of the airline industry,
airport authorities, airport associations, and government officials,
including officials from the Federal Aviation Administration and
NCD, an opportunity to exchange ideas and start a dialogue that
will enable all parties to work together to better understand the
needs of travelers with disabilities and explore ways of making
accessible air travel a reality for all.
NCD Makes Hill Visits
May 2, 2001, Washington, D.C.
NCD members and staff visited various congressional
offices to educate members of Congress and staff about NCD's activities.
Congressional Accountability Act
May 10 and 31, 2001
NCD met with the staff of the Office of Compliance,
which was established to implement and enforce the Congressional
Accountability Act (CAA) of 1995, to discuss how Congress could
ensure that full coverage of the Americans with Disabilities Act
and the Rehabilitation Act is extended to all instrumentalities
of Congress, including the General Accounting Office, the Government
Printing Office, and the Library of Congress.
NCD Participated in IDEA Meeting
June 4, 2001, Washington, D.C.
A stakeholder coalition group--Parent Training and
Information Centers, National Association of Protection and Advocacy
Systems, National Association of State Directors of Special Education,
and Part C/Early Intervention lead agencies--working with the U.S.
Department of Education, Office of Special Education Programs (OSEP)
and NCD in refining OSEP's process for monitoring and enforcement
of IDEA conducted a collaborative effort to improve results for
children and youth with disabilities and their families. The stakeholder
coalition group developed a plan to be carried out and seeks input
about both the product and the process that created it.
NCD Releases Disability Status Report
June 14, 2001
NCD released its annual National Disability Policy:
A Progress Report (www.ncd.gov/newsroom/publications/progressreport2000.htm),
confirming that despite great strides toward equality, people with
disabilities still confront major barriers of discrimination and
suffer the consequences of weak federal enforcement.
Because of the persistency of these barriers to equal
opportunity, NCD believes that the president and Congress must set
a standard of greater federal commitment to deliver on the promises
of disability and other civil and human rights laws.
The report uses as benchmarks the recommendations
for change made by disability leaders from throughout the country
and captured in the 1996 NCD document Achieving Independence:
The Challenge for the 21st Century (www.ncd.gov/newsroom/publications/achieving.htm).
These recommendations--elaborated on in subsequent annual progress
reports--reflect a wide array of public policy areas designed to
advance inclusion, empowerment, and independence of people with
disabilities of all ages from diverse backgrounds consistent with
the vision of the Americans with Disabilities Act of 1990 (ADA).
The report covers the period November 1999 through
November 2000, the end of the 2nd Session of the 106th Congress.
It reviews federal policy activities by major issue areas, noting
progress where it has occurred and making further recommendations
where necessary. The recommendations apply to the executive and
legislative branches of the Federal Government.
NCD Releases Accessible Technology
Report
June 21, 2001, Washington, D.C.
On June 21, 2001, the day Section 508 regulations
went into effect, NCD held a news conference at the National Press
Club in Washington, D.C., to highlight the release of its report
The Accessible Future (www.ncd.gov/newsroom/publications/accessiblefuture.htm).
Among other things, the report found that access to electronic and
information technology (E&IT) is a civil right and there is
a need for a national accessibility policy.
Speakers at the event included Bonnie O'Day, Ph.D.,
NCD member; Ethel D. Briggs, NCD executive director; David M. Capozzi,
director, Technical and Information Services, U.S. Architectural
and Transportation Barriers Compliance Board; Cheryl Cumings, minority
outreach coordinator, Massachusetts Commission for the Blind; and
Laura Ruby, program manager, Regulatory and Industry Affairs, Microsoft
Accessible Technology Group.
Panelists included Mary Brooner, director of telecommunications
and strategy, Global Government Relations Office, Motorola; Deborah
Cook, director, Washington Assistive Technology Alliance; Denice
Gant, program director, Hewlett-Packard Accessibility Solutions;
Susan K. Palmer, associate director, regulatory affairs, Cingular
Wireless LLC; Kelly Pierce, disability specialist, Cook County State's
Attorney's Office; Greg Pisocky, civilian agency liaison, Government
Systems, Adobe Systems Incorporated; and Michael Takemura, director,
Accessibility Program Office, COMPAQ Computer Corporation.
NCD issued an appeal to the Federal Government, private
industry, and consumers to join forces to increase access to E&IT
for people with disabilities. The appeal stems from the reality
that increased access will improve the quality of life for people
with disabilities. A strong partnership among the government, private
industry, and consumers will accelerate what all Americans desire,
which is a better life--in this case, for people with disabilities.
NCD Submits Recommendations to House-Senate
Education Conferees
July 19, Washington, D.C.
Before the first meeting of the House-Senate conference
on the No Child Left Behind Act of 2001 (H.R. 1) education bill,
NCD submitted recommendations to all House-Senate conferees. The
House and Senate bills (H.R. 1, as amended and S. 1) include damaging
amendments that would allow schools to remove students from the
classroom and cease the provision of services to these students
for behavior violations of school or behavioral code. A review of
NCD research makes it clear that these amendments would thoroughly
undermine the educational gains that have been made in this country
over more than 25 years for students with disabilities. Both the
House and Senate "discipline" amendments are inconsistent with research
findings of NCD and with recommendations NCD previously submitted
to Congress through assessment studies of the IDEA implementation.
Students with disabilities need the guarantee of consistency in
their education. The social cost of abandoning this guarantee is
far too high to justify these amendments.
NCD, educators, students, and their parents have found
that IDEA is a good, solid law. If IDEA were fully funded and implemented,
classroom behavior would not be an issue for debate. Therefore,
NCD recommended (1) removing the discipline amendments in both bills;
(2) replacing them with assurances that appropriate training, supports,
and services will be provided to teachers and students; and (3)
accepting the full funding amendment, with language that instructs
the Department of Education and the Department of Justice to work
together to ensure full compliance with the law in every state.
NCD Participates in Government Technology
Summit
July 23, 2001, Washington, D.C.
NCD delivered remarks at the National Summit on Accessibility
for Government IT, which was sponsored by the Performance Institute.
The presentation highlighted NCD's report The Accessible Future,
access to electronic and information technology, which includes
the Internet, the World Wide Web, and information/transaction machines.
NCD Releases Position Paper on Supreme
Court Ruling in Sandoval
July 31, 2001, Washington, D.C.
NCD released its position paper The Sandoval Ruling
(http://www.ncd.gov/newsroom/publications/sandoval.htm)
on the U.S. Supreme Court's decision in Alexander v. Sandoval
and on its implications for litigation under the ADA, Section 504
of the Rehabilitation Act, and IDEA.
The Supreme Court of the United States issued a decision
in Alexander v. Sandoval, 121 S.Ct. 1511 (2001), on April
24, 2001. The Sandoval case involved a class action claim
brought by non-English-speaking residents of the state of Alabama
against the director of the Alabama Department of Public Safety.
The plaintiff class claimed that the department's offering Alabama's
driver's licensing exams only in English had the effect of discriminating
against them on the basis of their national origin. The plaintiffs
argued that such discrimination violated Title VI of the Civil Rights
Act of 1964 and the implementing regulations promulgated pursuant
to § 602 of the Act by the Departments of Justice and Transportation.
Section 601 of the Civil Rights Act prohibits discrimination on
the basis of race, color, or national origin in federally funded
programs. 42 U.S.C. § 2000d. Section 602 authorizes federal agencies
to issue regulations to effectuate the requirements of § 601. 42
U.S.C. § 2000d-1. A bitterly divided Court ruled 5 to 4 that there
is no private right of action to enforce the disparate impact regulations
promulgated under Title VI. That means that private individuals
do not have the right to file lawsuits under Title VI alleging that
they have suffered disparate impact discrimination by recipients
of federal funds.
NCD Files Amicus Brief with U.S.
Supreme Court
August 31, 2001, Washington, DC
NCD filed an amicus curiae brief with the Supreme
Court for the respondent in the case Toyota Motor Manufacturing,
Kentucky, Inc. v. Ella Williams (No. 00-1089) (http://www.ncd.gov/newsroom/publications/toyota_amicus.htm),
which presented the question whether "an impairment precluding an
individual from performing only a limited number of tasks associated
with a specific job qualifies as a disability." Toyota argued that
a plaintiff must be totally unable to do even modified tasks in
order to be "substantially limited" in manual tasks and/or working,
thus qualifying for ADA protection. NCD argued that Toyota's position
demonstrates the erroneous view that Congress intended to extend
ADA protection only to the "truly disabled" (i.e., those who are
so severely restricted that they are unable to meet the essential
demands of daily life). NCD argued that the clear guidelines provided
by the Court in Sutton v. United Airlines, Inc., 527 U.S.
471 (1999), Murphy v. UPS, 527 U.S. 516 (1999), and Albertson's,
Inc. v. Kirkingburg, 527 U.S. 555 (1999) would allow a jury
to properly find that Williams is "disabled" within the meaning
of ADA because she is significantly restricted as to the condition,
manner, and duration of performing manual tasks compared with the
average person in the general population.
ADVISORY COMMITTEES
NCD has four advisory committees. They are the Cultural
Diversity Advisory Committee, International Watch, Technology Watch,
and the Youth Advisory Committee. All NCD advisory committees are
governed by the Federal Advisory Committee Act (FACA), 5 U.S.C.
App. 2, which was enacted to promote good government values, such
as openness, accountability, and balance of viewpoints consistent
with administrative efficiency and cost-containment.
The following is a summary of the activities of NCD's
advisory committees:
Cultural Diversity Advisory Committee
Established during FY 2001, the purpose of NCD's Cultural
Diversity Advisory Committee (www.ncd.gov/newsroom/advisory/cultural/cultural.htm)
is to provide advice and recommendations to NCD on issues affecting
people with disabilities from culturally diverse backgrounds. Specifically,
the committee will help identify issues, expand outreach, infuse
participation, and elevate the voices of underserved and unserved
segments of the nation's population. This will help NCD develop
federal policy that will address the needs and advance the civil
and human rights of people from diverse cultures.
This committee conducted its first meeting on July
31, 2001.
International Watch
The purpose of International Watch (www.ncd.gov/newsroom/advisory/international/international.htm)
is to share information on international disability issues and to
advise NCD on the development of policy proposals that will advocate
for a foreign policy that is consistent with the values and goals
of the Americans with Disabilities Act. International Watch has
two working groups: International Convention on the Human Rights
of People with Disabilities and Inclusion of People with Disabilities
in Foreign Assistance Programs.
Meeting dates:
September 20, 2001
September 6, 2001
July 19, 2001
June 29, 2001
May 30, 2001
May 4, 2001
April 26, 2001
April 12, 2001
March 14, 2001
March 8, 2001
February 15, 2001
Technology Watch
The purpose of Technology Watch (www.ncd.gov/newsroom/advisory/technology/technology.htm)
is to assist NCD in monitoring, analyzing, and promoting technology
access issues. The intent is to make the information superhighway
accessible to and usable by people with disabilities by recommending
government policies and industry practices that facilitate this
vision.
Although Tech Watch did not meet formally during the
fiscal year, it did provide advice to NCD on the development of
its report The Accessible Future (www.ncd.gov/newsroom/publications/accessiblefuture.htm).
Youth Advisory Committee
The purpose of the Youth Advisory Committee (www.ncd.gov/newsroom/advisory/youth/youth.htm)
is to provide advice to NCD on various issues such as NCD's planning
and priorities. NCD is seeking this type of input to make sure NCD's
activities and policy recommendations respond to the needs of youth
with disabilities.
Meeting Dates:
August 6, 2001
March 14, 2001
CONGRESSIONAL TESTIMONY
In FY 2001, NCD provided formal testimony to Congress
on two occasions:
February 28, 2001, testimony submitted to the U.S.
House of Representatives.
NCD testified (www.ncd.gov/newsroom/testimony/01testimony.htm)
before the House Committee on Government Reform on the Individuals
with Disabilities Education Act.
April 18, 2001, testimony submitted for the record
of the U.S. Senate.
NCD submitted written testimony (www.ncd.gov/newsroom/testimony/bristo_4-18-01.htm)
on patients' rights principles to the Senate Committee on Finance
hearing (March 27) on Society's Great Challenge: The Affordability
of Long-Term Care.
INFORMATION DISSEMINATION
Information dissemination continued to grow at record
levels for NCD, as it responded to thousands of telephone calls,
e-mail messages, and letters from concerned people and organizations
about disability issues. In addition, NCD published its monthly
newsletter, NCD Bulletin, which reaches more than 15,000
people and organizations. All NCD publications are available in
alternative formats, such as braille, large print, and audiocassette.
This information is also available at NCD's award-winning Web site
(www.ncd.gov), which now receives
more than two million hits per year.
NCD QUARTERLY MEETINGS
As required by Section 400(3)(c) of the Rehabilitation
Act of 1973, as amended, NCD met on four occasions during FY 2001.
In addition, NCD also met once by conference call.
August 6-7, 2001, Washington, DC
July 11, 2001, conference call
May 21-23, Arlington, VA
February 5-6, 2001, Myrtle Beach, SC
December 4-5, 2000, San Diego, CA
Appendix
Mission of the National Council
on Disability
Overview and Purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the president of the
United States and confirmed by the U.S. Senate. The overall purpose
of NCD is to promote policies, programs, practices, and procedures
that guarantee equal opportunity for all individuals with disabilities,
regardless of the nature or significance of the disability, and
to empower individuals with disabilities to achieve economic self-sufficiency,
independent living, and inclusion and integration into all aspects
of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis,
policies, programs, practices, and procedures concerning individuals
with disabilities conducted or assisted by federal departments
and agencies, including programs established or assisted under
the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act, as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, 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 act as
disincentives for individuals to seek and retain employment.
- Making recommendations to the president, Congress,
the secretary of education, the director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies about ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion and
integration into all aspects of society for Americans with disabilities.
- Providing Congress, on a continuing basis, with
advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (42 U.S.C. 12101 et seq.).
- Advising the president, Congress, the commissioner
of the Rehabilitation Services Administration, the assistant secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner of the Rehabilitation
Services Administration with respect to the policies and conduct
of the administration.
- Making recommendations to the director of the National
Institute on Disability and Rehabilitation Research on ways to
improve research, service, administration, and the collection,
dissemination, and implementation of research findings affecting
persons with disabilities.
- Providing advice regarding priorities for the activities
of the Interagency Disability Coordinating Council and reviewing
the recommendations of this council for legislative and administrative
changes to ensure that such recommendations are consistent with
NCD's purpose of promoting the full integration, independence,
and productivity of individuals with disabilities.
- Preparing and submitting to the president and Congress
an annual report titled National Disability Policy: A Progress
Report.
International
In 1995, NCD was designated by the Department of State
to be the U.S. government's official contact point for disability
issues. Specifically, NCD interacts with the special rapporteur
of the United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
Although many government agencies deal with issues
and programs affecting people with disabilities, NCD is the only
federal agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, veteran status, or other
individual circumstance. NCD recognizes its unique opportunity to
facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of people with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, NCD originally proposed what eventually became
the Americans with Disabilities Act. NCD's present list of key issues
includes improving personal assistance services, promoting health
care reform, including students with disabilities in high-quality
programs in typical neighborhood schools, promoting equal employment
and community housing opportunities, monitoring the implementation
of the ADA, improving assistive technology, and ensuring that those
persons with disabilities who are members of diverse cultures fully
participate in society.
Statutory History
NCD was initially established in 1978 as an advisory
board within the Department of Education (P.L. 95-602). The Rehabilitation
Act Amendments of 1984 (P.L. 98-221) transformed NCD into an independent
agency.
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