National Disability Policy: A Progress Report
December 2002-December 2003
National Council on Disability
December 9, 2004
National Council on Disability
1331 F Street, NW, Suite
Washington, DC 20004
National Disability Policy: A Progress Report
December 2002-December 2003
This report is also available in alternative formats and on NCD's award-winning Web site (www.ncd.gov).
Publication date: December 9, 2004
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The views contained in this 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
December 9, 2004
The President
The White House
Washington, D.C. 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD), it is my duty and honor 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.
The report covers the period from December 2002 through December 2003. It reviews federal policy activities by issue areas, notes input by other federal agencies on their progress where it has occurred, and makes further recommendations where necessary, primarily to the executive and legislative branches of the Federal Government.
As indicated in the report, NCD has observed examples of progress in disability policy and the broader policy arena. Among these are the findings and recommendations of the President's New Freedom Commission on Mental Health in its report on recovery from mental illnesses and a proposed transformation of the nation's approach to mental health care; the Department of Health and Human Services' funding of several model projects (Demonstration to Improve the Direct Service Community Workforce) designed to develop and implement programs that recruit and retain personal assistance workers for people with disabilities and people who are aging; and critical attention to the needs and inclusion of people with disabilities in preparation for emergency situations, such as the Department of Homeland Security's work and coordination with other agencies.
Under NCD's statutory mission, examination of the status of disability policy discloses that incremental progress made in some areas is clouded by other major barriers and challenges that continue to block paths available to the general population. Gaps in necessary services and supports remain to the extent that, as stated in NCD's 2002 report on progress, far too many Americans with disabilities are undereducated and unemployed.
NCD encourages all government agencies and Congress to use our work as a reference point and source of data for recommendations and in future investigations of disability policy issues. NCD offers its readiness to work with the Administration, Congress, federal agency partners, and members of the public in ways that have a bearing on the lives of people with disabilities.
Sincerely,
Lex Frieden
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
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Analyst
Pamela O'Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
CONTENTS
Executive Summary
Chapter One: Disability Statistics and Research
Chapter Two: Civil Rights
Chapter Three: Education
Chapter Four: Health Care
Chapter Five: Long-Term Services and Supports
Chapter Six: Youth
Chapter Seven: Employment and the Workforce Development System
Chapter Eight: Welfare Reform
Chapter Nine: Housing
Chapter Ten: Transportation
Chapter Eleven: Technology and Telecommunications
Chapter Twelve: International Affairs
Chapter Thirteen: Homeland Security
Chapter One. Disability Statistics and Research
Introduction
The Premise of Disability Statistics
Limitations in the Approach
New Directions and Approaches
The New Paradigm
New Directions in Research
Conclusion
Recommendations Summary
Recommendations to the Administration
Recommendation to Congress
Recommendation to the Census Bureau
Chapter Two. Civil Rights
Introduction
The ADA
Continued Erosion of Rights in the Courts
The Need for New Approaches to the Judicial Process
New Federal Legislation
Section 504 of the Rehabilitation Act
Accountability in Civil Rights Enforcement
Genetic Discrimination
Voting Rights
Conclusion
Recommendations Summary
Recommendations to the Judicial Conference and the
Administrative Office of the Courts
Recommendations to Congress
Recommendations to the Department of Justice
Chapter Three. Education
Introduction
IDEA Reauthorization
Student Discipline
Full Funding
Due Process
Textbook and Multimedia Accessibility
Coordination of IDEA and NCLB
Application of Average Yearly Progress
Teacher Qualifications
Educational Technology
Accountability
Higher Education
School-to-Work Transition
Transition Savings Accounts and IRAs
Individual Development Accounts
Conclusions
Recommendations Summary
Recommendations to Congress
Recommendation to the Department of Education
Recommendation to the Department of the Treasury
Chapter Four. Health Care
Introduction
Medicaid
Institutional Bias
Medicaid Waivers
Consumer-Directed Services
Medicaid Buy-In
Medical Device Review
HIPAA Privacy Regulations
Medicare Reform
Choosing Coverage
The Mix of Services
Dual Medicaid and Medicare Eligibility
Mental Health Parity and Services
Insurance Premiums
Conclusion
Recommendations Summary
Recommendations to Congress
Recommendation to the Administration
Recommendations to CMS
Recommendations to HHS
Recommendation to FDA
Chapter Five. Long-Term Services and Supports
Introduction
The Looming Crisis
Community Integration
Key Pending Legislation
Actions Necessary
Insurance
Cost Effectiveness and Accountability
Conclusion
Recommendations Summary
Recommendations to Congress
Recommendations to CMS
Chapter Six. Youth
Introduction
Juvenile Justice
Recognizing the Problem
Coordination
Outcomes
Youth Leadership Development and Empowerment
The Youth Advisory Committee
National Youth Leadership Network
Definitions
Conclusion
Recommendations Summary
Recommendations to the Administration
Recommendation to DOJ
Recommendation to OMB
Chapter Seven. Employment and the Workforce Development System
Introduction
The Workforce Investment Act
Antidiscrimination and Accessibility
Outcome and Performance Measures
Aging of the Workforce
The Navigator Program
Outreach by One-Stop Centers
The Vocational Rehabilitation System
Order of Selection
Technical Assistance
Other Resources and Issues
Loan Programs
Tax Incentives
Ticket To Work
Conclusion
Recommendations Summary
Recommendations to Congress
Recommendations to the Administration
Recommendations to DOL
Recommendations to ED
Chapter Eight. Welfare Reform
Introduction
Time and Benefits Limits
Work Requirements
Individual Development Accounts
The Streaming Problem
Conclusion
Recommendations Summary
Recommendations to Congress
Recommendation to HHS
Recommendation to DOJ
Chapter Nine. Housing
Introduction
Coordination
Existing Programs
Civil Rights
Interagency Efforts
Voluntary Compliance Agreements
Research
Training and Technical Assistance
Disability and Homelessness
Incentivizing Accessibility
Disclosure
Definitions
Visitability
Conclusion
Recommendations Summary
Recommendations to Congress
Recommendations to the Administration
Recommendations to HUD
Chapter Ten. Transportation
Introduction
The Legal Framework
Community Integration
Olmstead
Assistive Technology Mobility Devices
Air Travel
Civil Rights and Nondiscrimination
ACAA Enforcement
Ticket Machines and Other Technologies
The Transportation Act
Budget
Olmstead
Other Accessibility Issues
Paratransit
Conclusion
Recommendations Summary
Recommendations to Congress
Recommendations to the Administration
Recommendations to DOT
Chapter Eleven. Assistive Technology and Telecommunications
Introduction
The Assistive Technology Act
The Federal Communications Commission
Cell Phone Access for Hearing Aid Users
Section 255
Closed Captioning
Video Description
E-Rate
Section 508
Monitoring
Outstanding Legal Issues
Conclusion
Recommendations Summary
Recommendation to Congress
Recommendations to the FCC
Recommendations to DOJ
Recommendation to GSA
Chapter Twelve. International Affairs
Introduction
The Legal Framework
Foreign Assistance
Section 504 and ADA
UN Convention
Technical Assistance
Conclusion
Recommendations Summary
Recommendations to the Administration
Recommendations to the Department of State
Chapter Thirteen. Homeland Security
Introduction
Nondiscrimination
Emergency Preparedness
Private Organizations
Conclusion
Recommendations and Summary
Recommendations to the Department of Homeland Security
A Compilation of Report Recommendations to Congress, the Administration, and Federal Agencies
Part I. Recommendations to Congress
Chapter One-Disability Statistics and Research
Chapter Two-Civil Rights
Chapter Three-Education
Chapter Four-Health Care
Chapter Five-Long-Term Services and Supports
Chapter Six-Youth (no specific recommendations to Congress)
Chapter Seven-Employment and the Workforce Development System
Chapter Eight-Welfare Reform
Chapter Nine-Housing
Chapter Ten-Transportation
Chapter Eleven-Assistive Technology and Telecommunications
Chapter Twelve-International Affairs (no specific
recommendations for Congress)
Chapter Thirteen-Homeland Security (no specific
recommendations for Congress)
Part II. Recommendations to the Administration
Chapter One-Disability Statistics and Research
Chapter Two-Civil Rights (no specific recommendations to
the Administration)
Chapter Three-Education (no specific recommendations to
the Administration)
Chapter Four-Health Care
Chapter Five-Long-Term Services and Supports(no specific recommendations to the Administration)
Chapter Six-Youth
Chapter Seven-Employment and the Workforce Development System
Chapter Eight-Welfare Reform (no specific recommendations for the Administration)
Chapter Nine-Housing
Chapter Ten-Transportation
Chapter Twelve-International Affairs
Chapter Thirteen-Homeland Security (no specific recommendations for the Administration)
Part III. Recommendations to Federal Agencies, Offices, and Courts
Chapter One-Disability Statistics and Research
Chapter Two-Civil Rights
Chapter Three-Education
Chapter Four-Health Care
Chapter Five-Long Term Services and Supports
Chapter Six-Youth
Chapter Seven-Employment and the Workforce Development System
Chapter Eight-Welfare Reform
Chapter Nine-Housing
Chapter Ten-Transportation
Chapter Eleven-Assistive Technology and Telecommunications
Chapter Twelve-International Affairs
Chapter Thirteen-Homeland Security
Appendix I-Mission of the National Council on Disability
Appendix II-List of Acronyms
Endnotes
Executive Summary
This National Council on Disability
(NCD) annual progress report to the President and Congress is prepared pursuant
to NCD's statutory responsibility to make a full report of its activities,
findings, and recommendations in key areas to the leaders of our nation.
The report covers subjects on which NCD must report according to the law.
It also addresses several additional subjects that NCD believes to be of
importance to Americans with disabilities and to the nation.
This report's 13 chapters address disability
statistics and research, civil rights, education, health care, long-term
services and supports, youth, employment and the workforce development system,
welfare reform, housing, transportation, assistive technology and telecommunications,
international affairs, and homeland security. Each chapter recounts developments
of importance from the previous year, describes the key issues likely to
emerge or open for discussion in 2004, and addresses long-term trends and
interconnections between subject areas that NCD believes must inform our
analysis. Each chapter also contains detailed recommendations, addressed
to specific agencies or decision makers. The chapters call for actions that
NCD has concluded would contribute to improvement of the opportunities available
in society for people with disabilities. For easy reference, these recommendations
are numbered and grouped by targeted institutions-Congress, the Administration,
implementing entities, and courts-at the end of each chapter. The final section
of the report is a compilation of the recommendations into three sub-sections
directed to Congress, the Administration, and specific federal agencies and
courts.
NCD's 2003 Progress Report contains
the following salient findings and recommendations.
Chapter One: Disability Statistics and Research
Findings
-Based on an examination of the methods and uses of disability
research over recent years, problems with research techniques and inconsistencies
among data sources have made reliable assessment of many issues difficult,
including even such fundamental questions as the precise number of Americans
with disabilities. Because of the difficulties associated with obtaining
adequate data, and because even good data does not necessarily point the
way clearly toward the most effective solution, there may be a need to reassess
the kinds of research being conducted and the purposes for which that research
is done.
Recommendations-
Congress should authorize research to supplement the accumulating
baseline data and to conduct forward-looking experiments designed to create
new statistics by observing and measuring the impacts of various innovations
on people's lives. Prospective designs that observe and measure the results-instead
of relying on retrospective methods of trying to determine impact-would prove
far more useful in creating meaningful statistics and clarifying policy options.
Disability-related questions need to be retained and improved in the 2010
census. The Census Bureau should seek whatever authority is needed to make
improvements.
Chapter Two: Civil Rights
Findings-
A succession of Supreme Court decisions narrowly interpreting
the Americans with Disabilities Act (ADA) and ruling against individuals
with disabilities have combined with other factors to create great unease
among Americans with disabilities regarding the robustness of our nation's
commitment. Among other concerns are the failure of the federal courts to
take voluntary actions, such as making more of their electronic documents
accessible; the need for improved accountability in civil rights enforcement;
growing concerns about genetic discrimination; and questions about accessibility
issues linked to voting technology.
Recommendations-
Pilot experimental implementation programs are suggested
to the federal courts to provide them with the kind of experience that would
lead to more informed and balanced adjudication of disability rights claims
in the future. With the increasingly complex issues of our time, intergovernmental
efforts are required to ensure that consistent and effective application
of Section 504 is carried out to achieve greater civil rights. This recommendation
coincides with the recommendations of NCD's recent major report on Section
504 of the Rehabilitation Act (Rehabilitating Section 504). On accountability,
NCD recommends that methods be developed for establishing the relative value
of various approaches (e.g., agency reporting of numerical data reflecting
settlements, cases processed, technical assistance, or other dimensions of
civil rights implementation), alone or in combination with civil rights enforcement.
NCD also calls for the prompt enactment of pending legislation that would
prohibit the use of genetic information to deny people employment, housing,
insurance, or other basic opportunities. Finally, NCD advises that vote verification
is important, but this must not be achieved at the cost of hard-won accessibility
rights. Congress should ensure full implementation of the Help America Vote
Act.
Chapter Three: Education
Findings
-Behind the debate over such hot-button issues as school
discipline, full funding, and high-stakes testing, important decisions are
due to be made by Congress that will affect the lives and futures of many
school-age Americans with disabilities via reauthorization of major components
of the Individuals with Disabilities Education Act (IDEA). Despite strides
made in reconciling the operation and tenets of IDEA and the No Child Left
Behind Act (NCLB), much work remains to be done in applying the philosophies
of the two Acts seamlessly and in a manner that will be wholly respectful
of each. Issues of paying for and obtaining appropriate supports, services,
and accommodations for postsecondary or other continuing education still
confront students with disabilities and institutions of higher education
working with these students. Despite government efforts to address transition
through more effective cooperation between educational, rehabilitation, and
other adult service systems, smooth transition from secondary school to postschool
pursuits for people with disabilities has remained elusive in all too many
cases.
Recommendations-
Because adequate data does not yet exist to justify curtailment
of parental due-process rights in special education, Congress should undertake
definitive research to provide empirical evidence on the impact of appeals
and attorneys on special education before it further restricts family rights.
Congress should also ensure that when disciplinary considerations require
the removal of students with disabilities from the mainstream, integrated
classroom, such students are ensured the right to uninterrupted educational
and related services consistent with their Individualized Education Program
(IEP) and with evolving assessments and needs in the most appropriate educational
settings. In this way, no child will be left behind. Building on approaches
the Administration has taken to help resolve other persistent problems and
to contribute to the ability of families to advance their children's education,
NCD suggests new tax-based strategies that may help to improve the availability
of transition resources.
Chapter Four: Health Care
Findings
-Changes in Medicaid (e.g., budgetary and structural), along
with what is known as the institutional bias of the Medicaid program, have
major implications for people with disabilities. Aspects of the recent Medicare
reform legislation also have a distinct bearing on the lives of people with
disabilities and need to be addressed. A related matter-medical device review-presents
issues important to assistive technology (AT) users. The need for parity
in insurance coverage for mental and physical health services continues.
The report of the President's New Freedom Commission on Mental Health confirmed
many of NCD's earlier reports of major shortcomings and coordination and
systemic problems in current arrangements for the provision of mental health
treatment and services, and made important, far-reaching recommendations
for reform.
Recommendations
-Congress should begin the process of facilitating expanded
use of Medicaid buy-in programs, in light of their potential to reduce the
number of uninsured Americans, by adopting the Family Opportunity Act and
by enacting the Money Follows the Person legislation. Federal agency leadership
in improving medical device review will need to give attention to low-incidence
AT device users, coordination of device regulations, and review between the
Food and Drug Administration and the Centers for Medicare and Medicaid Services.
Congress needs to establish a national commission to study the question of
how consumer participation and direction can be maximized throughout the
federal health insurance programs, with a view to adding the findings and
recommendations of this study to future Medicaid reform proposals. In view
of the accumulating weight of findings and data that point to parity needs,
NCD urges Congress to implement the major recommendations of the President's
New Freedom Commission on Mental Health and NCD reports. The Administration
should publish detailed, point-by-point reactions to the findings and recommendations.
Chapter Five: Long-Term Services and Supports
Findings
-The nation could face a crisis as life expectancy increases,
unless our nation finds some way to reallocate the growing costs of long-term
care and provide the same attention to long-term services as health care
or income support has received. NCD fully shares the vision of the President's
New Freedom Initiative (NFI) in support of home and community-based services
(as alternatives to institutional settings) as a means to achieving greater
equality and full participation in society for people with disabilities.
NCD commends the Administration for sponsoring important research into a
number of key related issues. However, in view of the variety of legal and
economic forces operating to slow Olmstead implementation, strong
and concerted measures are required at the national level to overcome barriers
to community integration. NCD recognizes the role of private insurance in
any comprehensive effort to reform our systems of long-term care. Accountability
and cost-effectiveness continue a major theme throughout this report and
require the development of means for assessing the efficacy of various public
expenditure patterns.
Recommendations-
The Department of Health and Human Services Centers for Medicare
and Medicaid Services should require timely planning for and documented achievement
of Olmstead goals as a condition for states to receive federal funds
under the Medicaid program. NCD also recommends measures and research designed
to tap the potential of the private sector in this area, with significant
partnership and involvement of the nation's insurance industry. Congress
should hold hearings to fully explore the potential role of the insurance
industry, the tax code, the employer community, and existing programs in
fashioning experimental models of coverage that can be tested and studied.
Chapter Six: Youth
Findings-
NCD's 2003 juvenile justice report paralleled the findings
of major reports by the Government Accountability Office and the President's
New Freedom Commission on Mental Health. Children and young adults with disabilities
continue to be overrepresented among incarcerated juveniles. There is a continuing
need for knowledge about what constitutes effective programs that may prevent
entry into the juvenile justice system, ways to address and provide clear
governmental support for ongoing youth leadership programs, and efforts to
increase the direct input of youth with disabilities in decision making.
Recommendations-
The Administration should appoint a high-level national commission
to make recommendations about juvenile justice systems and disability interconnections.
A federal official should be designated with authority to speak for the Administration.
The findings must be formally reviewed, adopted, rejected, or otherwise responded
to by the appointed federal official as part of follow-up work on the commission's
advice. The Administration should instruct each federal agency that implements
programs and services for youth with disabilities or their families to develop
ways of obtaining and considering opinions, experiences, and recommendations
of this constituency in future program planning.
Chapter Seven: Employment and the Workforce Development System
Findings-
Among the key findings are the need for antidiscrimination
provisions in legislation, the development of program outcome measures as
they relate to individuals with disabilities, and increased attention to
the implications of the aging of the workforce for people with disabilities.
The latter observation also portends a substantial increase in the proportion
of people with disabilities in the workforce, given the strong correlation
between disability and aging. The new role of the vocational rehabilitation
(VR) system operating through One-Stop Centers raises questions that VR needs
to address. Finally, the availability and feasibility of resources to support
employment of people with disabilities will require addressing issues linked
to various loan programs, employment tax incentives, and the Ticket to Work
and Work Incentives Improvement Act (TWWIIA).
Recommendations-
A critical proposal focuses on ensuring that evolving principles
of accountability can be applied to enhance the ability of the workforce
development system, in its mainstream and specialized components, to respond
most effectively to the employment needs and aspirations of Americans with
disabilities. The Department of Labor (DOL) needs vigorously monitor and
enforce the law, as one key means for ensuring full participation in the
workforce and employment development system by all job seekers. DOL should
also develop outcome measures that take due account of all the relevant variables
involved in working with job seekers with disabilities-including not only
the potential costs of working with this population within a mainstream setting,
but also the benefits to the taxpayers of commitment and success in such
work. The Administration should establish a blue-ribbon task force for expedited
study and recommendations to Congress on ways to strengthen the capacity
of the economy to retain and benefit from the services and experience of
older workers with adult-onset disabilities. Recommendations are also made
for clarifying the objectives of loan programs, enhancing the reach of the
Work Opportunity Tax Credit (currently awaiting reauthorization), and responding
to key research findings on the adequacy of TWWIIA incentives and procedures
to meet the needs of people with disabilities.
Chapter Eight: Welfare Reform
Findings-
Rigid application of recipient time and benefits limits and
work requirements-central to the current Temporary Assistance for Needy Families
(TANF) legislation and which seem likely to be retained in some form in the
reauthorization-may not serve the goals of promoting independence and self-sufficiency.
People with disabilities may have unique training and/or supports (including
AT) needs in order to reach their goals of joining the workforce. Individual
Development Accounts (IDAs) are a source of increased funds for goods and
services needed for success in employment, but currently applicability to
TANF recipients with disabilities is limited in ways that are easily correctable.
Recommendations-
As Congress considers reauthorization of TANF, flexible interpretation
and application of the law that provides for structured relationships between
the welfare and disability services sectors, including VR, are recommended
to ensure that the goal of people with disabilities joining the workforce
is served. Congress should broaden the definition of qualifying savings goals
for TANF IDAs to include assistive or universally designed technology and
modified vehicles or other specialized transportation services needed in
order to work. Before sanctioning or curtailing benefits based on time and
duration limits, states should ensure that any individual with a significant
disability, a hidden disability, or whose service needs as primary caregivers
for family members with disabilities have been offered a full medical-vocational
assessment through the state's Office of Disability Determination and its
VR agency.
Chapter Nine: Housing
Findings-
Problems are inherent in the lack of coordination among programs
and agencies. Improvement is needed in evaluating the effectiveness of existing
housing programs that have unique implications for people with disabilities
or that were designed to specifically impact the lives of people with disabilities.
Civil rights enforcement continues to play a key role in bringing about an
increase in the supply of accessible and affordable housing. The marketplace
needs incentives to build accessible housing and modify existing units to
make them accessible.
Recommendations-
Agencies need to ask basic questions in order to evaluate
the effectiveness of housing programs. The Departments of Justice (DOJ) and
Housing and Urban Development (HUD) should systematically address each of
the housing accessibility and discrimination issues and jointly publish guidelines
delineating the management of cases from HUD (or Fair Housing Assistance
Program) complaint to DOJ or judicial disposition. Procedures and standards
could be applied to ensure that antidiscrimination provisions are meaningfully
implemented and that they contribute to the achievement of their objectives.
The Administration should appoint a high-level national commission-composed
of economists, housing and transportation experts, tax practitioners, legal
analysts, architects, land-use planners, and individuals with disabilities-to
map a long-term strategy for steadily increasing the proportion of the nation's
housing stock that meets standards of accessibility. Pending the full demonstration
and realization of the broad-based benefits of greater housing accessibility,
interim recommended measures include stronger federal encouragement of the
visitability concept and the modernization of standards for what constitutes
accessibility.
Chapter Ten: Transportation
Findings-
Without attention to transportation, important goals in employment,
education, access to medical care, and even the ability to live in the community
may all be put at risk. The Transportation Security Administration (TSA)
can build on its successes in incorporating the rights of people with disabilities
into the nation's airport security screening system. The expected reauthorization
of the Transportation Equity Act for the 21st Century raises issues
such as authority for NFI transportation programs and other specialized transit
demonstrations and programs of particular interest to people with disabilities.
New challenges confront paratransit programs, such as the practice of determining
trip eligibility on a trip-by-trip basis, as well as new needs created by
changing residential and employment patterns.
Recommendations-
TSA should build on its successes with disability rights
by clarifying for consumers the distribution of authority for civil rights
enforcement, and incorporating accessibility considerations into the design
of new airport technologies. Coordination of transportation planning with
state-based efforts to implement the Olmstead Supreme Court decision
is also recommended. How the practice of determining trip eligibility on
a trip-by-trip basis affects the users of the service should be investigated.
Chapter Eleven:
Technology and Telecommunications
Findings-
The Assistive Technology Act is in danger of sunsetting if
not reauthorized. Key areas of Federal Communications Commission (FCC) jurisdiction
have important bearing on the technological infrastructure regarding equal
opportunities for people with disabilities. The DOJ is recognized for undertaking
to survey federal agencies regarding various aspects of their implementation
of Section 508 of the Rehabilitation Act.
Recommendations-
Congress should move forward to reauthorize the Assistive
Technology Act. The FCC needs to enforce Section 255 of the Federal Communications
Act-the law vests the FCC with jurisdiction to enforce requirements for accessibility
of telecommunications equipment and services-in the manner intended by Congress
or necessary for achievement of the law's objectives. The FCC should also
ensure that schools and libraries receiving subsidized telecommunications
services will make those services accessible to persons with disabilities.
Further research is needed on agencies' practices in areas such as how exemptions
to Section 508 of the Rehabilitation Act requirements are granted.
Chapter Twelve:
International Affairs
Findings-
U.S. foreign assistance programs can be made responsive to
the rights and interests of persons with disabilities within the countries
receiving aid. Civil rights protections afforded to Americans under such
laws as Section 504 and the ADA can be brought to bear on behalf of Americans
serving their nation abroad and even on behalf of the residents of other
nations.
Recommendations-
Successful efforts to incorporate human rights or other ethical
concerns into the administration of foreign assistance should be used as
examples of how to ensure U.S. foreign assistance programs are responsive
to human rights and interest of people with disabilities. Strong Administration
support for the treaty of the pending United Nations Convention on the Rights
of People with Disabilities, including a commitment to ratification, is recommended.
Chapter Thirteen:
Homeland Security
Findings-
TheDepartment of Homeland Security (DHS) has taken steps
to incorporate nondiscrimination into its programs. Models and technical
assistance supporting dissemination and application of the models for including
people with disabilities in emergency preparedness planning at all levels
are vitally necessary. NCD commends efforts to address the issue on the federal
interagency level.
Recommendations-
NCD applauds DHS efforts on inclusion and offers its assistance
in the agency's continued application of nondiscriminatory policies and practices
to a variety of situations and contexts. Emergency preparedness models should
be extended to the private sector. DHS should study its contractors' policies
and practices and provide them with the technical assistance necessary to
ensure that in the development of all technology and procedures, users with
disabilities will be included in the testing process and otherwise be taken
fully into account. Civil rights protections need to be extended to the variety
of private sector entities doing product and systems development on behalf
of homeland security.
As stated previously, a compilation
of all specific recommendations to Congress, the Administration, federal
agencies, courts, and other entities can be found at the end of the report.
Chapter One
Disability Statistics and Research
Introduction
Statistics play a large role in all
we do. From the role of population and relative wealth and poverty in determining
the allocation of various federal funds among the states, to the use of trend
data about various diseases that influences the allocation of medical research
funds, statistics are a constant source of data for policy and decision making.
In the area of disability, the need
for good baseline statistical data and the complexities encountered in collecting
that data are considerable. This chapter reviews some established strategies
and assumptions and suggests some new approaches that may help to break new
ground in the gathering and effective use of statistical data.
The first section reviews some of the
major assumptions that have gone into the collection of disability-related
statistics over the years. The next section discusses limitations in our
traditional approach. The third section addresses new approaches for defining
and obtaining the statistical information we need.
The Premise
of Disability Statistics
No one is likely to dispute the premise
that the more we can learn about the number of people with disabilities in
this country, about the types of disabilities they have, and about the kinds
of lives they live, the better informed decision making will become. Such
evidenced-based data can inform public policy; give direction to the allocation
of time and resources; and offer baseline data from which trends, improvements,
or deterioration can be measured.
On this premise, we have concentrated
considerable attention on the long form used by the Census Bureau for the
decennial censuses of 1990 and 2000, the Census Bureau's American Community
Survey (ACS) program, and research funded under the auspices of the Centers
for Disease Control and Prevention (CDC). Efforts were undertaken in collaboration
with the National Institute on Disability and Rehabilitation Research (NIDRR)
and other government agencies. Common to these efforts were objectives focused
on (a) determining the number of people with disabilities; (b) establishing
the levels of income, employment, and education of these citizens; and (c)
comparing existence and experience data on people with and without disabilities
in a variety of areas.1
By and large, this research has taken
as its point of departure the notion of disability as a static, although
often subjective, fact. When people are asked in self-reporting surveys whether
they have a disability or condition that limits one or more major life activities,
including a work disability, we assume that, although two people in very
similar situations may answer the question differently, or the same person
may even answer it differently at different times, the answer given reflects
some assessment of factual data by the respondent at that moment.
One may characterize this research as
one dimensional as it relates to employment, education, health care, or other
intervention programs. That is to say, it seeks to develop direct correlations
and draw conclusions based on the premise that the existence of a disability
gives rise to certain consequences and predicts the need for and the utility
of certain services and programs.
Because reliable and comprehensive data
has proved difficult to collect, researchers and decision makers have found
themselves without effective means to fully evaluate and validate the intervention
strategies and program models we have used. While continuing to refine data
collection techniques in traditional demographic areas, perhaps it is time
to pursue new avenues of research as well. Further discussion in this regard
is presented in the sub-section below on new directions in research.
Limitations
in the Approach
In its annual progress reports over
the past several years, NCD has discussed in detail the limitations confronting
the collection and use of current disability statistics and research data.2 We do not propose to repeat those findings here. Suffice it to say, a number of factors have combined with bureaucratic
and interagency coordination issues to stymie the collection and use of current
disability statistics and research data. Examples include varying definitions
of disability from statute to statute and program to program, ambiguities
in the wording of questions, and variations in the precise wording of questions
among survey instruments. In addition, many respondents are unaware of the
availability of assistive technology or other resources that could overcome
functional limitations and legal restrictions on eligibility under various
programs (which in effect force people to assume lesser roles in society).3
Nor is it even clear that more reliable
statistics would have a definite impact on public policy. Debate persists
over the number of Americans with disabilities, with estimates varying widely.
But is there any ground for supposing that the competing approaches to improving
participation levels and quality of life for people with disabilities would
differ depending on if there were 40 or 60 million such persons? For example,
answers to one of the six disability-related questions on the Census 2000
long form suggest significantly higher levels of employment than other data
does. Can the people who follow one set of policies be readily distinguished
from those who advocate another set of policies based on their belief as
to the reliability of the answers to this census question? The answer is
no. Everyone agrees that the unemployment number is still too high, and disputes
over the kinds of programs to adopt are not fought on the basis of clearly
differentiated positions on the trajectory of disability employment.
NCD strongly supports the continued
collection and refinement of all possible data. To that end, NCD recommends
that disability-related questions be retained and improved in the 2010 Census.
If the Census Bureau believes that it lacks legislative authority to retain
or enhance these questions, it should immediately seek the necessary legislative
authority from Congress.
NCD further recommends that the U.S.
Government's Interagency Committee on Disability Research (ICDR) be given
all possible resources, status, and visibility by the Administration to carry
out the interagency research and coordination so vitally necessary to the
collection and rationalization of disability statistics.
While these important efforts go forward,
new directions in statistical research are urgently needed. These efforts
will not only lead to clear answers to important questions, but by spotlighting
new questions they can help to improve and modernize policy and law affecting
people with disabilities in many areas of American life.
New Directions
and Approaches
The New Paradigm
NCD believes, in concert with the growing
body of opinion among people with disabilities and others, that a disability
is not an objective or static fact or event. Consistent with the approach
taken by the International Classification of Functioning, Disability and
Health (ICF),4 NCD believes that disability,
too often confused with impairment, exists not in the individual, but in
the inadequate interface between the individual and society.
We know that when buildings are made
accessible, people with mobility disabilities can enter, learn, shop, and
work there. We know that when information is provided in an accessible format,
persons with sensory disabilities can obtain and use it in the same manner
as anyone else. In a world in which technology and society reflect the fact
that the interface between the individual and the environment is what determines
function and possibilities, there is little point or meaning in asking people
whether they have a substantial limitation in one or more major life activities
due to a physical or mental impairment.5 The
source or measure of substantial limitation resides not within the individual,
but rather in the absence of an elevator, a sign-language interpreter, or
assistive technology resources.
There is nothing new in this paradigm.
What may be new is to ask a perennial question in a different way: If we
recognize and embrace the role of technology, convenience, and infrastructure
in the lives of Americans at large, how can there still be debate over whether
it is the presence or absence of these, rather than any individualized limitations,
that in aggregate terms defines the participation and function of America's
nearly 60 million citizens with disabilities?
New Directions
in Research
From the limitations of existing data
and from this new paradigm, it follows that new kinds of research are urgently
needed. The growing awareness of the need for accountability in public expenditure
and programs also points the way toward, and emphasizes the need for, new
directions in investigation.
Broadly speaking, the need is for vastly
more data on the effects of various societal decisions and arrangements on
people with disabilities, and on the diverse costs and benefits to society
of changes in those arrangements. For example, under most of our disability
civil rights laws, what constitutes a reasonable accommodation under the
Americans with Disabilities Act (ADA)6 is
conditioned on whether the necessary measure would represent an "undue burden" to
the employer, state or local government, or public accommodation. Of course
it is appropriate to make this determination and vital to avoid making demands
on any sector of society that would be disproportionate, counterproductive,
or unachievable. But the matter cannot end there.
Too often, as is increasingly the government's
approach in Office of Management and Budget (OMB) or other assessments of
proposed actions or regulations, inquiry and official interest focus on short-term
financial impact on a small group of entities. This may be small businesses,
large businesses, or units of government, depending on the circumstances.
Again, it is just as important to avoid disproportionately burdening or harming
definable sectors of society as it is to avoid doing such harm to individuals
or single companies. But again, this cannot be the end of the discussion.
We must also pursue with equal vigor, and with equal methodological
rigor, the related question of the effects on people with disabilities of the
particular decision at issue. What will be the opportunity costs of exclusion,
and what will be the benefits of fuller participation and access?
Today, we have few tools for reliably addressing these issues,
particularly in connection with policy proposals that involve upfront expenditures
but will yield their full economic return to society over a number of years.
Statements such as "every dollar spent on rehabilitation returns $7 in taxes
and consumer demand" are gospel to some people, urban myth to others; but until
we have reliable means for evaluating them, and for placing their results on
a par with the interests and prospects of other groups in society, can we hope
to develop or implement effective policy?
Throughout this report, we will encounter instances in which the
existence and application of new analytical tools would, to a great degree,
inform and clarify decision making. The process of developing these tools is
by no means simple, but as competition for scarce resources intensifies and
the need for accountability grows, what alternative do we have?
Accordingly, NCD recommends that Congress authorize research studies
into the effectiveness of a number of leading programs and intervention strategies.
The first step might be assessing key indicators-such as the employment and
income status of persons with disabilities who have been employed following
successful completion of vocational rehabilitation (VR) programs--and comparing
the information obtained to the disability population generally and the working-age
population as a whole. Additional avenues of study should look at the employment
and income status of persons with disabilities who have graduated from college
and/or those who are in a pilot experiment, ensured of full and uninterrupted
access to comprehensive medical care after they enter employment. Other research
should address the impact-again through a pilot experiment, if necessary-of
the provision of adequate transportation in rural areas on nursing home admissions
and care costs. Finally, the research could focus on the level of employment
sustainability achievable in a sample of persons who are allowed to retain
their Social Security Income (SSI)cash benefits for two years after they enter
work, subject to gradual phase out over a multiyear period.
Such studies will not resolve differences in approach and will
not answer all questions as to what is fair or appropriate. But such studies
will provide data on the basis of which such underlying philosophical and pragmatic
disagreements can be more responsibly discussed and addressed. Until such data
begins to become available across a broad range of programs and issues, we
can have little confidence in the wisdom of current approaches or in the relative
merits of alternative proposals.
Even more broadly, we need analytical tools for measuring the
diverse effects-short- and long-term, direct and indirect-of current or prospective
policy. While the law of unintended consequences may be the one law we can
always be sure of, methods can be improved for assessing the knowable consequences
of our acts, especially the indirect implications for one program, group of
people, or action taken with particular reference to other programs or target
populations. Accordingly, NCD recommends that the Administration appoint a
high-level presidential task force that includes leaders in economics, demographics,
health care, education, and law, and leaders from within the disability community.
This task force should begin the task of identifying econometric, statistical,
observational, forecasting, and other techniques and tools that may be available
to bring greater accountability to disability policy. It should also identify
the range of outcomes, consequences, implications, and relationships that must
be taken into account in designing policy and assessing its effects. This presidential
task force should be charged with developing methods for identifying long-term
benefits that are as reliable and persuasive as those methods we now use for
measuring short-term costs. It should assemble all data on the investment value
of public expenditures and on the relative impact of various forms of subsidy
and cross-subsidy arrangements, including those we now utilize. It should also
develop and apply techniques for measuring opportunity costs and for measuring
other hitherto conjectural, but nonetheless increasingly real and powerful,
dimensions of our collective experience.
Conclusion
This chapter has reviewed the assumptions and issues surrounding
current and traditional disability statistics collection and research. It has
suggested the strengths and weaknesses of such research, and it has indicated
the reasons for believing that emerging new value systems call for new statistical
approaches aimed at gathering and validating new categories of information.
The chapter suggests some of the techniques that might be used and outcomes
that might be foreseen. The chapter closes with the confidence and hope that
better research techniques, resulting in the availability of better data, and
dealing with the pressing issues of our time, cannot help but be useful, whatever
strategy or approach they tend to support.
Recommendations
Summary
Recommendations
to the Administration
Recommendation 1.1-NCD recommends that the Administration
give the Interagency Committee on Disability Research (ICDR) all possible resources,
status, and visibility to carry out the interagency research and coordination
so vitally necessary to the collection and rationalization of disability statistics.
Recommendation 1.2-NCD recommends that the Administration
appoint a high-level presidential task force, including leaders in economics,
demographics, health care, education, and law, and leaders from within the
disability community, to begin the task of identifying econometric, statistical,
observational, forecasting, and other techniques and tools to bring greater
accountability to disability policy, and to identify the range of outcomes,
consequences, implications, and relationships that must be taken into account
in designing policy and assessing its effects.
Recommendation
to Congress
Recommendation 1.3-NCD recommends that Congress authorize
research studies into the effectiveness of a number of leading programs and
intervention strategies. The first step might be assessing key indicators such
as the employment and income status of persons with disabilities who have been
employed following successful completion of vocational rehabilitation programs
and comparing the information obtained to the disability population generally
and the working-age population as a whole. Additional avenues of study should
look at the employment and income status of persons with disabilities who have
graduated from college and/or those who are in a pilot experiment, ensured
of full and uninterrupted access to comprehensive medical care after entering
employment. Other research should address the impact-again through a pilot
experiment if necessary-of the provision of adequate transportation in rural
areas on nursing home admissions and care costs. Finally, the research could
focus on the level of employment sustainability achievable in a sample of persons
who are allowed to retain their SSI cash benefits for two years after they
enter work, subject to gradual phase out over a multiyear period.
Recommendation
to the Census Bureau
Recommendation 1.4-NCD recommends that disability-related
questions be retained and improved in the 2010 Census. If the Census Bureau
believes that it lacks legislative authority to retain or enhance these questions,
it should immediately seek the necessary legislative authority from Congress.
Chapter Two Civil Rights
Introduction
This chapter presents a number of threats to and opportunities
in the area of civil rights. It also addresses issues that need to be discussed
publicly in developing policies to maximize and ensure the fullest effectiveness
of civil rights laws.
This chapter addresses the Americans with Disabilities Act, examines
Section 504 of the Federal Rehabilitation Act, discusses accountability in
civil rights enforcement, examines concerns about genetic discrimination, and
considers voting rights.
The ADA
Continued Erosion
of Rights in the Courts
The year 2003 witnessed continuation of the trend of Supreme Court
and lower federal court decisions narrowing the scope of the ADA and complicating
reliance on its provisions. Supreme Court decisions of note this year included
the Clackamas case, an employment discrimination case that narrowly
defined the term "employee" for purposes of determining whether a medical facility
had the minimum number of employees (15) required for coverage under Title
I of the ADA.7 In
another major decision, the Raytheon case, the Supreme Court was called
on to determine whether a firm's refusal to rehire a rehabilitated substance
abuser violated the law. The Court did not answer the question, but found instead
that the lower court had applied an improper analysis and remanded the case
for further proceedings. The Court acknowledged that discrimination claims
based on disparate treatment (the intention to discriminate against an individual
because of his disability) and cases based on disparate impact (facially neutral,
but discriminatory in effect) are cognizable under the ADA. However, the Court
stated that, in a claim of disparate treatment, if an employer applies a neutral,
generally applicable no-hire policy in rejecting an employment application,
the ADA is not violated.8
Perhaps as important as the cases that were addressed or resolved
by the Supreme Court in 2003 are the issues that were not. Several cases presenting
major issues were settled, withdrawn, or otherwise terminated short of Supreme
Court adjudication. These cases raised issues such as how undue burden was
to be measured when a city that had failed to comply with the ADA's requirements
for sidewalks and curb cuts for more than a decade now claimed that requiring
it to make up for lost time would be too financially burdensome.9 Yet
another case would have raised the issue of whether the ADA covers decisions
by state boards regarding professional licenses.10
As 2003 ended, attention focused on a case that was argued before
the Supreme Court on January 13, 2004. The much-publicized case of Tennessee
v. Lane11 squarely
raised the question of whether Title II of the ADA can be used for lawsuits
by private individuals for money damages against states, or whether, as with
cases alleging employment discrimination under Title I, such suits are barred
by the doctrine of sovereign immunity under the Eleventh Amendment to the Constitution.12 The
case has received as much attention as any disability rights case, or perhaps
more.13 One
reason may be the compelling facts of the case: A citizen who uses a wheelchair,
after first crawling up two flights of stairs to an inaccessible courtroom,
refused to do so again and as a result was arrested for failure to appear.
Or the attention may stem from the poignant fact that access, not merely to
public services in the abstract, but specifically to the courts, is at issue;
from the absolutist position taken by the state, which argued that its actual
behavior is not at issue because the Constitution bars the suit;14 or
perhaps from the potentially large sums of money at stake, depending on whether
or not citizens are permitted to sue states for damages under Title II.
NCD wishes to commend the Department of Justice (DOJ) and the
solicitor general for the amicus brief supporting the constitutionality of
the ADA filed with the Supreme Court in this case.15 The recognition by an Administration,
generally committed to states' rights, of the need for application of a federal
statute in this case affirms the importance of the rights at stake in Lane.
NCD prepared a policy brief on the issues raised by the Lane case
and recommended that the Court uphold the constitutionality of Title II as
a whole.16 Limiting
the Title II remedy to recognized constitutional violations or to violations
based on the Due Process Clause would impose arbitrary limitations on the reach
of the remedy because it would exclude situations in which Congress was well
within its power to legislate under Section 5 of the Fourteenth Amendment,
and where the states have demonstrated a record of constitutional violations.
However, it is likely that the Lane case will be decided in favor of
a disabled individual's right to sue states for disability-based discrimination
for failing to make judicial proceedings accessible, leaving unanswered questions
about how the Supreme Court will interpret the constitutionality of Title II
as applied in other state programs and services.
The Need for
New Approaches to the Judicial Process
To the degree that many Supreme Court decisions limiting the ADA
involve constitutional issues, advocates have been at something of a loss to
know how to respond to or reverse these decisions. Amending the Constitution
would be difficult and dangerous, and would in any event take many years to
accomplish. Short of such a drastic and impractical measure, efforts to educate
judges, greater awareness as they see more cases, and perhaps even their own
personal experiences as they and their family members grow older may, in time,
result in some reassessment of their views, even of their constitutional philosophies;
but these, too, are long-term and highly uncertain prospects.
To expedite the learning processes that we hope and believe will
take place, NCD urges that the Judicial Conference of the United States, through
the Administrative Office of the Courts, undertake a number of discretionary
measures that may be helpful in better acquainting courts with the human suffering
that discrimination entails and also with the usually simple strategies available
for preventing its occurrence. First, NCD recommends that attorneys and judges
with disabilities be invited to participate in seminars at institutes and meetings
of and for federal judges held under various auspices during the year. Second,
NCD recommends that, in several sample federal districts and circuit courts
of appeals, the courts undertake a comprehensive ADA self-assessment, including
physical, programmatic, and communications barriers. We believe that such an
assessment would serve three goals. First, it would familiarize judges and
administrators with hitherto unexposed issues that are of concern to citizens,
litigants, employees, journalists, and attorneys with disabilities. Second,
it would demonstrate how relatively unobtrusive and nonburdensome elimination
of most of these barriers can be. Third, once judges and court administrators
realize the great benefits and the minimal disruption associated with nondiscrimination
and barrier removal, they are likely to incorporate such new knowledge into
their actions in the management of the courts and into the ways they approach
cases coming before them.
One serious but easily remedied barrier to access to the federal
courts is the inaccessibility of many electronic versions of court documents,
including judicial decisions. Although this inaccessibility occasionally results
from the design of the Web sites on which the materials are published, the
major problem appears to be that they are created in a PDF format, which is
not readily accessible to persons using screen-readers-people who are blind,
who have low vision, and who have other disabilities that interfere with reading
standard print.
It is not our purpose here to review the methods that other branches
of the Federal Government have successfully used and smoothly adopted to make
a wide variety of documents, including documents of record, available in formats
accessible to citizens. Suffice it to say that, without compromising the independence
or autonomy of the judicial branch in any way, resources and technical assistance
for doing this are readily available within and outside the government.
Accordingly, NCD recommends that the Judicial Conference of the
United States adopt the standards and protocols for Web site accessibility
and document formatting and design embodied in Section 508 of the Rehabilitation
Act; seek and provide the technical assistance resources that each court will
need to implement these principles; establish realistic but meaningful timetables
for completion of the work; and seek the input of persons with disabilities,
including attorneys, litigants and court employees, as well as jurists, to
provide input and feedback as the process goes forward.
Even if these experimental measures do not effect trends in constitutional
jurisprudence or judges' senses of where the balance between competing rights
and principles should be struck, they can hardly fail to have a large impact
on the growing array of critical cases where statutory interpretation rather
than constitutional adjudication is involved.
The judicial branch should, at its discretion and under its sole
management and control, undertake additional consciousness-raising efforts.
Such efforts might include surveying federal judges about the number of law
clerks with disabilities they have employed or interviewed. Similar research
in the past, conducted within and outside the court system, has disclosed a
significant lack of ethnic and cultural diversity in the ranks of high-level
judicial personnel and has resulted in levels of awareness that one hopes are
leading to remedial action and renewed outreach.17
Efforts to educate the federal judiciary must also proceed along
the traditional lines of legal scholarship and argumentation. NCD has published
a series of some 20 Righting the ADA policy briefs since late 2002,
carefully and comprehensively analyzing the legal issues raised by the Supreme
Court's ADA decisions.18 These
policy briefs offer a wealth of insights and data for those wishing to advance
legal arguments on behalf of the rights of Americans with disabilities in a
variety of settings or forums.
But these briefs also do something more, something for which,
in this age of accountability, the judiciary needs to acknowledge and accept
responsibility. They show that in many legal contexts, the Supreme Court has
adopted shifting standards and result-oriented analytical principles, in ways
that compel the conclusion that many of the decisions are preordained. This
progress report is not the place to reiterate or summarize the inconsistencies
and patterns in question, but mention of a few of the most glaring examples
may at least help to explain why the disability community may be growing apprehensive
and mistrustful of our courts.
Three illustrations may be cited. First, gratuitous language in
a number of the opinions reflects hostility to the civil rights claims of individuals
with disabilities. Second, in many disability rights cases, normal and well-established
maxims of statutory construction, such as the principle that civil rights statutes
should be broadly construed to achieve the purposes of the law, are rejected,
without explanation, in favor of narrow constructions-for example, the definition
of "substantial limitation of a major life activity." Third, in cases where
reliance on the administrative interpretations of law made by federal oversight
agencies such as the Equal Employment Opportunity Commission (EEOC) support
a decision against the disability rights claim, the court embraces deference
to agency expertise. But in cases where such reliance would support a finding
in favor of the civil rights claim, agency interpretations of the law are dismissed,
usually without explanation as to why they are being treated differently.19 This
pattern gives disparate impact a whole new meaning.
Citizens, of course, have no means of holding appointed, life-tenured
judges accountable for their actions, nor would anyone advocate curtailment
of the independence and autonomy of the courts. All that citizens and advocates
can do is call on the conscience of the judicial and legal communities to search
their law books and hearts to ensure that, whether the decisions come out for
or against this or that interest or value system, they are made in accordance
with neutral principles of law and without fear or prejudgment.
New Federal
Legislation
The year 2003 witnessed reintroduction in Congress of the ADA
Notification Act,
20 a
bill that would require potential ADA litigants to give defendants 90 days' notice
of their intention to sue. While justified on grounds of giving defendants
an opportunity to avoid litigation by remedying violations of the law, this
proposal treats the threat of ADA litigation differently from that of lawsuits
under any other federal statute; nowhere else in the law are potential defendants
given this benefit. To comprehensively provide for a warning period in the
case of all civil suits under all federal statutes would be one thing; to single
out the ADA this way, particularly when the ADA Notification Act would also
restrict the availability of attorneys' fees, is something else, reflecting
an agenda having little to do with balance or justice.
The proposed ADA Notification Act also would likely restrict the
ability of individuals to obtain emergency injunctive relief to prevent imminent
and irreversible harm. The proposal appears to make no exception to the notice
requirement in such cases, and certainly nothing in the bill would prevent
the courts from interpreting it to apply to suits for emergency injunctive
relief as well as to conventional lawsuits brought under the ADA.
NCD is gratified by President Bush's opposition to this proposal.21 If
Congress wishes to consider waiting periods for all civil lawsuits, including
suits by large and powerful entities against individuals, the disability community
would hope to play a part in such deliberations.
While the yearly reintroduction of legislation such as the ADA
Notification Act has naturally placed the focus of the disability community
on forestalling ill-advised legislation, and while many have feared that opening
the ADA to any amendment would be dangerous in the absence of the broad consensus
that brought about its passage 14 years ago, the time may have come when the
risks of new legislation are outweighed by the risks of inaction. Leaving aside
the Supreme Court's constitutional decisions, court rulings interpreting and
applying the ADA on statutory grounds have combined to render the law a virtual
nullity in many of the settings to which it was widely expected and presumably
intended to apply. In such areas as the meaning of "substantial limitation," the
role of "mitigating measures," the definition of "regarded as" having a disability,
the availability of damages, the procedures applicable to mediation, the role
of seniority systems, the meaning of "place" in the concept of public accommodations,
and numerous other areas where the courts have interpreted the statute adversely
to the interests of individuals with disabilities, Congress has the authority
and the responsibility for determining whether the existing judicial determinations
are in accord with its intentions or with the goals of full participation in
society that President Bush's New Freedom Initiative (NFI) has so consistently
and clearly espoused.
In connection with the ADA and in other areas as well, the Supreme
Court's constitutional decisions over the past decade have dramatically altered
the balance of power among the three branches of our government, depriving
Congress of much of the authority that liberals and conservatives alike have
assumed it possessed, whether wisely or unwisely exercised, over the past 70
years. What Congress can or should do to restore its prerogatives is beyond
the scope of this report, but Congress can address the statutory dimensions
of ADA implementation to a considerable and important degree.
Accordingly, NCD recommends that Congress enact an ADA Restoration
Act, which will responsibly recalibrate the balance between fairness and individual
dignity on the one hand, and institutional costs and convenience on the other,
by addressing many of the interpretive and procedural issues noted above.
Section 504
of the Rehabilitation Act
With so much attention focused on the ADA, it may not be surprising
that another equally important federal civil rights statute has been pushed
into the shadows. This is Section 504 of the Rehabilitation Act of 1973,22 the
first statute to declare discrimination against persons with disabilities by
entities and programs utilizing federal funds to be illegal. Because of neglect
in enforcing this law, and because of its continued legal and symbolic importance,
NCD has sought to restore attention to Section 504 and to evaluate its implementation
and its prospects in a major report, Rehabilitating Section 504, published
in February 2003.23
The latest in NCD's series of major civil rights monitoring reports,24 Rehabilitating
Section 504 examines the enforcement of the law by the five major federal
agencies responsible for its implementation (namely, the Departments of State,
Education [ED], Health and Human Services [HHS], Justice [DOJ], and Labor
[DOL]). In findings that are systemic and of long standing, and that implicate
Administrations of all parties, NCD's careful review and assessment finds
significant absences of leadership, resources commitment, and focus in connection
with the exercise by these agencies of their responsibilities under the law.
Though a number of agency initiatives-including HHS's Web site, ED's technical
assistance guidance, and DOL's reasonable accommodations information-warrant
praise and emulation, the report discloses large-scale indifference to Section
504 on the part of the Department of State. Significantly, with respect to
DOJ, which has a preeminent responsibility and a unique opportunity through
its coordinating role, the report finds that DOJ has largely failed to meet
its obligations in this area.
Specifically, the report finds that the Interagency Disability
Coordinating Committee (IDCC), the designated vehicle for Section 504 coordination
across the range of involved federal agencies, is essentially defunct. The
group has not accomplished what is needed to put any alternative mechanisms
in place.
The report's findings offer a blueprint and a starting point for
necessary and long-overdue reforms. Its appearance is particularly timely because,
for a number of reasons, Section 504 may actually be as important legally as
it has been at any time since the passage of the ADA-or more so. Section 504
and the ADA parallel each other in certain respects-for example, in the obligations
they impose on state and municipal recipients of federal funds-but the two
laws also differ in material respects-including what entities and activities
are covered, who is protected, and what actions are barred or mandated by the
law.25 As ADA enforcement becomes more and
more problematic, this parallel statute may become more and more important.
Section 504 also has important applications, alongside but separate from those
in the Individuals with Disabilities Education Act (IDEA), in the area of education
of students with disabilities.26
This report cannot address in detail all the specific areas where
Section 504 may uniquely apply or where it creates rights, responsibilities,
and opportunities distinctive from those established under other laws. Suffice
it to say that, in the absence of effective implementation, including, especially,
coordination of resources, planning, priorities, and procedures, the law's
purposes and benefits cannot hope to be achieved.
Accordingly, NCD recommends that DOJ reactivate and support the
work of the IDCC, with a view to developing, publicizing, and implementing
a cross-agency plan for the implementation and administration of Section 504
that will ensure clarity, consistency, and predictability for both individuals
with disabilities and entities receiving federal financial assistance.
Beyond making up for lost time, major new issues also confront
the enforcement of Section 504. In order to avert potential litigation, there
are issues that DOJ needs to address by regulation or other authoritative pronouncement.
Especially noteworthy in this regard is the changing meaning of the concept
of "federal financial assistance."
As the Federal Government utilizes more and new kinds of contractual
relationships in its efforts to enlist partners in the delivery of public services
and in the creation of new service-delivery models that emphasize competition
and choice, the question of which of these contractual relationships are covered
by Section 504 emerges with increasing urgency. Existing case law does not
appear to offer clear guidance on the question of whether all or only certain
contractual relationships involving the allocation of federal funds to private,
nonprofit, faith-based, and state and local governmental entities constitute "federal
financial assistance" within the meaning of the law. If, for example, the Medicare
program pays or reimburses a managed care organization for the provision of
prescription drugs or other health care coverage, does the transfer of federal
funds to that HMO or other managed care entity constitute federal financial
assistance? Would the answer to that question depend to any degree on whether
the federal payment was regarded as reimbursement only, or whether it contained
an additional component designed to incentivize the HMO's participation in
the Medicare program? Would Section 504 come into play if a participating prescription-drug
discount-card provider refused to include drugs needed by people with certain
major disabilities in its formulary?
Similarly, if a faith-based organization providing services under
contract with the Federal Government declines or is unable, for reasons of
conscience or doctrine, to comply with the requirements of Section 504 in some
respect, does that organization fail to meet the obligations required of an
entity receiving federal financial assistance? If it does, can a First Amendment
religious freedom argument be interposed to block the application of Section
504?
Faced with these and other new issues, NCD urges DOJ to initiate
rulemaking or other processes, based on extensive input from the public, to
identify and resolve all current and potential ambiguities in the application
of the law. Only in this way can the legitimate interests of people with disabilities
and of funds recipients be served with certainty and predictability. Likewise,
if DOJ's effort reveals the need for new or clarifying legislation, the Administration
and Congress can work together to fashion the necessary new measures. For those
people, from either end of the political spectrum, who worry about the undue
involvement of the courts, such prophylactic measures are likely to prove of
great value.
Accountability
in Civil Rights Enforcement
Beyond the specifics of ADA or Section 504 philosophy and implementation,
our nation today faces unique demands for effective administration of the law,
persistent budgetary pressures that mandate the most efficient possible deployment
of resources, and, above all, strong and long-overdue demands for accountability
in the administration of all laws and programs. Because these relate to civil
rights, they suggest the need for an inclusive national dialogue on the priorities
and assumptions underlying current approaches to the enhancement of civil rights
and on the means available for determining what approaches are most successful.
For example, testifying in February 2003 before the House Judiciary
Subcommittee on the Constitution, the assistant attorney general for civil
rights spoke proudly of the Administration's increased rate of settlements
of civil rights complaints.27 Needless to say, reducing backlogs
and avoiding costly or protracted litigation are in the best interests of everyone.
But as with the buying or selling of houses, you can always make a deal if
you are willing to raise or lower the price enough. For all those affected
by the civil rights enforcement process, the key questions to ask relate to
the nature of these settlements, to how the commitments and undertakings made
by parties to these settlements are tracked and monitored, and to how effective
current settlement policies prove to be in bringing about compliant behavior
and positive long-term change among complainants and defendants alike.
It is not the place of this report to guess whether settlement
policies are too lenient or too harsh, or whether they foster long-term compliance
or contribute to an atmosphere of gamesmanship and hair-splitting. What it
is appropriate for this report to do is suggest that the criteria for settling
cases, and the goals sought by current settlement policies, be a matter of
public record and open to input from the disability, business, and other relevant
communities.
This question is not unique to DOJ, as we will see in our discussion
of the enforcement of the Air Carrier Access Act in Chapter Ten.
Two broader issues are raised by an inquiry into settlement practices
and standards. These critical but relatively unexplored issues lead directly
back to the question of accountability. The first question is how and whether
the criteria used and the goals sought to be served by various choices of enforcement
strategy can be made known to the public and be subject to input from the public.
The other question bearing directly on accountability is how to measure the
relative effectiveness and impact of various approaches, and how to combine
the best of all approaches to achieve a comprehensive response.
Broadly speaking, Administration policies, consistent with the
aspirations for partnership and cooperation embodied in the President's NFI
and consistent with the belief that information dissemination and technical
assistance represent the best long-range strategies for fostering inclusion
and full participation, have tended to deemphasize traditional law enforcement
sanctions as a means for achieving progress toward equality. But no less than
with strategies for responding to human needs in other areas, the principles
of accountability must likewise be applicable here. The Administration and
the public need to know whether the deemphasis on enforcement is, in fact,
resulting in greater progress toward equality of opportunity than a traditional
approach to vigorous enforcement would. Based on the available data, there
is yet no way to know.
Along with the growing attention to accountability as a touchstone
of public policy, our nation must strive to develop techniques for answering
the questions that accountability raises. We do not presume to know at this
point exactly what methodology would provide sufficient rigor for reliable
comparison of alternative or competing approaches to civil rights achievement.
But we know that in an age of accountability, the need to evaluate all policies
and approaches cannot be avoided or denied. It may be that current, nonconfrontational
strategies have resulted in more access, at less cost, and with less disruption
or animosity than would otherwise have been the case. But if the lack of progress
toward reducing the unemployment rates among people with disabilities (see
Chapter Seven) can in any way be related to the way the government approaches
the question of employment discrimination, then perhaps accountability leads
to different conclusions.
In this connection, NCD is concerned that cost-benefit analysis
of the sort supported by OMB appears to focus largely on the potential costs
to industry of various civil rights measures, while largely lacking the means
or sources of information for tracking other key elements of the overall cost-benefit
equation.28 Consideration of the alleged costs
to one sector of society, without equal reference to a variety of other costs
and of potential benefits to others, is tantamount to conducting a trial at
which only one side is allowed to introduce evidence or is called to testify.
Once again, a true commitment to accountability as a guiding principle requires
better methodology and broader input than often appears to be forthcoming.
Until or unless the costs of exclusion in the lives of untold millions of people
can be measured with as much certainty as are the costs of civil rights enforcement
on identifiable institutions, until or unless the benefits of inclusion command
as much of our attention as do its burdens, we cannot say that we have achieved
either accountability or balance in the implementation of our civil rights
laws or in the pursuit of our civil rights goals.
Genetic Discrimination
Going back to its white paper on the subject[29 and
in detail in its annual progress reports over the past three years, NCD has
called attention to the dangers of genetic discrimination in insurance, employment,
and other areas, and to the pressing need for legislation barring employers,
insurers, and others from making decisions about people's lives based on their
genetic makeup.
Having previously set forth the issues in detail, little purpose
would be served by their repetition here. However, it is important to note
three major changes in the context of the discussion that have taken place
over the past year. First, the Senate adopted the Genetic Information Nondiscrimination
Act of 2003,30 which would bar the use of genetic
information in most employment and insurance decisions. NCD commends the Senate
for its action and recommends the House of Representatives follow suit as early
as possible.
The second major change in the context of the genetic discrimination
discussion is the implementation in spring 2003 of the regulations implementing
the medical-records privacy provisions of the Health Insurance Portability
and Accountability Act of 1996 (HIPAA).31 To
whatever degree arguments may have existed for delaying genetics nondiscrimination
legislation until the potential of HIPAA to safeguard genetic privacy could
be determined, these arguments would appear to no longer apply. HIPAA is not
expected, even by its strongest adherents, to curtail current uses, or to prevent
expanded future collection and use, of genetic information.
No evidence is known to NCD that acquisition of or access to genetic
testing and information by employers, health insurers, or others has been materially
reduced or prevented as a result of HIPAA. Nor is there any reason to believe
that HIPAA, whatever bearing it may have on the transfer or sharing of sensitive
information, will prevent employers, insurers, even landlords from conducting
blood, urine, or other tests or otherwise requiring information that can yield
genetic data. As a result, the legal case for genetic antidiscrimination legislation
is stronger than ever.
The third, and in some ways perhaps the most profound, new development
occurring within the past year is the publication in October of Beyond Therapy:
Biotechnology and the Pursuit of Happiness, a report of the President's
Council on Bioethics.32 This
thoughtful analysis strives to distinguish between the legitimate uses of our
growing potential for genetic engineering and manipulation, and those uses
that, while conducive to our vanity, our desire for greater intelligence, enhanced
beauty, or longer life, are more questionable or even at variance with basic
moral values. But if genetic science cannot properly or morally be used to
enhance our prospects in romance, competitive sports, or intellectual pursuits,
how can it simultaneously be allowable for such information to be used by institutions
that would deny people full freedom of opportunity and choice?
It may be argued that the insurers or employers or landlords who
deny insurance coverage or employment or housing based on perceived genetic
risk or vulnerability are not manipulating genes, and hence are not implicated
by the findings and warnings of the bioethics report. But the matter is more
complex. How can any reasonable person expect individuals to forgo any possibility,
however spurious, for genetic enhancement or correction, so long as they know
that others, with potentially immense power over their lives, will be utilizing
genetic information to exercise that power?
Voting Rights
Few attributes of citizenship can be more important than the right
to vote, and NCD was proud to have occasion in last year's annual progress
report to hail the passage of the Help America Vote Act of 2002 (HAVA).33
For people with disabilities, the right to vote privately and
safely requires more than a statute. It requires facilities that are accessible
and voting machines that are independently usable. HAVA established for the
first time a national commitment and the right to these opportunities.
NCD remains mindful, though, that no rhetorical commitment or
statutory requirement is any better than the day-to-day willingness and ability
of a variety of participants in the process to make it work. As that awareness
relates to the achievement of voting rights under HAVA, it means that congressional
appropriations, HHS oversight (including through the development, in collaboration
with the Federal Elections Commission and DOJ, of voluntary guidelines), state
decisions, and continued voter involvement are all critical to the success
of the law.
Subject to several concerns (including those relating to adequacy
of HAVA appropriations, to availability of appropriate technology to meet the
independent voting aspirations of people with various disabilities, to resistance
by some state and local elections officials, and to potential apathy among
large segments of the voting public), NCD believes that significant progress
has been made during the year toward implementation of HAVA. We particularly
note with appreciation the indication given by DOJ in December that it intends,
as of the law's January 1, 2006, effective date, to enforce the law literally,
so far as its applicability to each polling place is concerned.34
Because HAVA will not come fully into effect for another two years,
the risk that many Americans with disabilities will be excluded from the national
election process of 2004 must be confronted. In that connection, while there
is little that HAVA can do to overcome this problem, there are other legal
issues that may bear significantly on the enfranchisement of Americans with
disabilities before and in tandem with HAVA.
A number of cases currently making their way through the courts
appear to indicate that the ADA plays a role in voting rights.35 Litigation
and related advocacy in the District of Columbia have contributed to the implementation
of unprecedented accessible voting rights for D.C. residents this year, and
cases underway in Florida and elsewhere suggest similar possibilities.36
NCD recommends that DOJ support the applicability of the ADA to
the polling place and the voting booth by initiating cases or intervening in
cases where reasonable measures on the part of state and local elections officials
could result in meaningful increases in the independent and accessible voting
opportunities for Americans with disabilities.
One issue that has emerged as an area of increasing concern is
the verifiability of the vote totals reported by touchscreen or other so-called
direct recording equipment (DRE) voting machines. NCD takes no position on
whether current models of these machines are sufficiently reliable, or on whether
the lack of a so-called audit trail imperils the integrity of the electoral
process. NCD does insist, however, that no changes be made that would compromise
or jeopardize the levels of accessibility and independent voting mandated in
HAVA.
The disability community is also concerned with the possible use
of accessibility as a pretext for DRE manufacturers' refusal or inability to
modify their systems. We cannot believe that it is beyond the technical ingenuity
of these manufacturers to modify their designs in ways that meet election security
concerns while preserving the hard-won rights and legitimate expectations of
Americans with disabilities.
Conclusion
This chapter has addressed a number of perceived threats to the
progress of civil rights for individuals with disabilities. It has indicated
why these trends are regarded as dangerous and also suggested means by which
they can be reversed. It has also addressed fundamental questions that must
be asked and answered through public dialogue and through research in the formulation
of strategies and procedures for effectuating a broad range of civil rights
goals.
Recommendations
Summary
Recommendations
to the Judicial Conference and the Administrative Office of the Courts
Recommendation 2.1-NCD recommends that attorneys and judges
with disabilities be invited to participate in seminars at institutes and meetings
of and for federal judges held under various auspices.
Recommendation 2.2-NCD recommends that, in several sample
federal districts and circuit courts of appeals, the courts undertake a comprehensive
ADA self-assessment, including physical, programmatic, and communications barriers.
Recommendation 2.3-NCD recommends that the Judicial Conference
of the United States adopt the standards and protocols for Web site accessibility
and document formatting and design embodied in Section 508 of the Rehabilitation
Act; seek and provide the technical assistance resources that each court will
need to implement these principles; establish realistic but meaningful timetables
for completion of the work; and seek the input of persons with disabilities,
including attorneys, litigants, and court employees, as well as jurists, to
provide input and feedback as the process goes forward.
Recommendations
to Congress
Recommendation 2.4-NCD recommends that Congress enact an
ADA Restoration Act that will responsibly recalibrate the balance between fairness
and individual dignity on the one hand, and institutional costs and convenience
on the other, by addressing many of the interpretive and procedural issues.
Recommendation 2.5-NCD urges the House of Representatives
as early as possible in the second session of the Congress to join the Senate
in adopting genetic antidiscrimination legislation.
Recommendations
to the Department of Justice
Recommendation 2.6-NCD recommends that DOJ reactivate and
support the work of the Interagency Disability Coordinating Committee, with
a view to developing, publicizing, and implementing a cross-agency plan for
the implementation and administration of Section 504 that will ensure clarity,
consistency, and predictability for both individuals with disabilities and
entities receiving federal financial assistance.
Recommendation 2.7-NCD recommends that, pending the full
implementation of the Help America Vote Act, DOJ support the applicability
of the ADA to the polling place and the voting booth by initiating cases or
intervening in cases where reasonable measures on the part of state and local
election officials could result in meaningful increases in the independent
and accessible voting opportunities for Americans with disabilities.
Chapter Three Education
Introduction
Discussion of the education of children and youth with disabilities
involves the identification and integration of educational knowledge and practice,
along with an understanding of issues, barriers, methods, and technologies
that are of particular relevance to the education of students with disabilities.
Thus, for example, as discussed in our previous reports,37 provisions
of the No Child Left Behind Act of 2002 (NCLB)38 (which
applies to all public schools and public school students across our nation)
must be interpreted and applied in the context of special education. At the
same time, the Individuals with Disabilities Education Act (IDEA) must be developed
and applied in ways that are consistent with and complementary to NCLB, but
that still recognize the issues and situations that IDEA and special education
are intended to address. This chapter addresses some of the key issues currently
raised by that intersection. It also discusses issues of higher education and
of transition from school to adult life outside of education.
It looks at the forthcoming reauthorization of IDEA, coordination
between IDEA and NCLB, higher education, and school-to-work transition.
IDEA Reauthorization
IDEA was scheduled for reauthorization last year, ordinarily an
occasion for amending the law to reflect the issues and experience accrued
during the period since the last reauthorization. Congress did not complete
the reauthorization process in 2003, but instead extended the existing law
for a year.39 Meanwhile,
the two houses have continued working on their respective versions of the reauthorization
statute.
With a version of IDEA reauthorization legislation already passed
by the House, and with the Senate's version40 well
along and awaiting action, NCD recognizes that this second session of the 108th
Congress does not come to the issue of IDEA reauthorization with the same range
of options and choices that would be available if legislation were being considered
from scratch. There are a number of key differences between the House-passed
bill and the version pending in the Senate. Whatever language the Senate eventually
adopts, there will be opportunities for the conference committee to reconcile
the House-Senate differences and attempt to craft new language that will satisfy
both houses.
This being so, NCD wishes to direct the attention of the Senate
and the House-Senate conferees to a number of key issues and to the impact
that Congress's imminent decisions will have on the lives and destinies of
students with disabilities, as well as for education as a whole. NCD therefore
directs congressional attention to the following key issues.
Student Discipline
IDEA includes procedures for the discipline of students with disabilities
receiving special education services. Perhaps because of the existence of these
specific provisions, some people seem to believe that students with disabilities
are somehow exempt from the normal rules of school discipline or, worse, from
responsibility for the consequences of their actions.
In fact, as has been made clear by NCD in a number of reports,
no such free pass exists. There is, of course, legitimate scope for debate
over whether the disciplinary procedures specified for use under IDEA do or
should differ from those in effect for school students generally, and if so,
in what ways and to what extent. NCD believes that they do need to differ in
certain key respects, and we believe there are strong reasons this remains
so.
Addressing these questions, Congress should bear in mind the following
points. All students have the right to an education, which means as a practical
matter that they have the right to various educational and related services.
No parents would be permitted to withdraw their child from school because of
their determination that the child was incorrigible, uneducable, or unable
to attend or learn. Yet some would argue that school districts should, in effect,
be permitted to do so.
Because education is not something to which children somehow earn
or forfeit a right, Congress should ensure that, when disciplinary considerations
require the removal of students with disabilities from the mainstream, integrated
classroom, such students are ensured the right to uninterrupted education,
special education, and related services consistent with their Individualized
Education Program (IEP) and with evolving assessments and needs in the most
appropriate educational settings. In this way, no child will be left behind.
Full Funding
In previous reports NCD has advocated strongly for full funding
of special education. NCD recognizes that in the current budgetary climate,
significantly increasing the percentages of special education costs met out
of federal funds is not realistically possible. NCD applauds the efforts made
by Congress and the Administration to maximize funds for special education
within current fiscal constraints.
But NCD also trusts that, were the fiscal situation different,
congressional and Administration leaders would join with advocates in the belief
that full funding (meaning approximately 40 percent of total special education
expenses) is a desirable goal. Therefore, while continuing to maximize current
funding, NCD recommends that Congress and the Administration undertake a study
of possible methods and sources for increasing, over time, the level of federal
participation in special education to 40 percent. Several potential sources
are recommended for investigation in this regard. For instance, substantial
savings are expected to accrue to the educational system through reduction
of paperwork, elimination of reporting requirements, and other administrative
reforms already embodied in NCLB and likely soon to be paralleled by reforms
in the reauthorized IDEA. To the extent that the Administration and Congress
are proved correct in their expectations for such savings, consideration might
be given to earmarking some of these recovered resources for use in raising
the federal participation rate in special education.
Accordingly, NCD recommends that Congress establish a commission
to study the long-term costs of special education and to recommend strategies
for ensuring the financial stability of state education agencies (SEAs) and
local education agencies (LEAs) in meeting national educational goals for students
with disabilities.
Due Process
Many people have expressed considerable concern about the role
of parental due process as a cause of inadvertent delay or complication of
the provision of special education services to students with disabilities.
Some, including the President's National Commission on Excellence in Special
Education report,41 have
argued that the right to file administrative complaints or lawsuits has been
abused, in part because of the law's provision for reimbursement of attorneys' fees
to parents who prevail in their claims.42 Accordingly,
many people have come to believe that, however we may favor measures to increase
parental involvement in the educational process, the legal process is not an
effective or appropriate tool for achieving such empowerment.
NCD believes that rather than focusing on real or presumed abuse
demonstrated by isolated incidents or widely reported anecdotes, Congress should
focus on the question of what means and resources are available to parents
for providing input to schools about the services their children need and in
seeking to find and develop the documentation necessary to bring those services
to bear. Equally, from the standpoint of balance, no one has ever suggested
that school districts should be denied access to legal counsel in even the
most routine or trivial of matters, and no one has ever suggested that such
counsel should not be fully compensated at prevailing rates for their work.
Similarly, no one has ever suggested that school district determinations about
the contents of students' IEPs are always correct or based strictly on educational,
non-cost-related considerations. Given these indisputable facts, the question
Congress must ask before it curtails parents' right to counsel is: How, in
the absence of the right to retain counsel and prosecute appeals, can parents' input
and parents' knowledge about their children be fully, clearly, and reliably
reflected in school system IEP decisions?
In its last reauthorization of IDEA, Congress established procedures
for limiting frivolous complaints and suits. It also established procedures
for mediation and arbitration before the bringing of suit, as well as requirements
of sufficient notice of pending complaints to give school officials ample time
to review student records and modify their decisions before litigation begins.43 In light of this background, NCD recommends
that before the enactment of any further curbs or restrictions of a procedural
or economic nature, Congress should fully review the impact and efficacy of
these provisions. Under a legal framework that precludes the award of attorneys' fees
to other than "prevailing parties," and in light of other legal developments
since the last reauthorization of IDEA narrowing the definition of the term "prevailing
party" for purposes of a variety of right-to-counsel laws, it seems improbable,
indeed little short of incredible, that unmeritorious suits could in any way
be motivated or fueled by attorneys' desires for fees or by parents' expectations
of having nothing to lose if suit is filed.
If, after such an in-depth inquiry, Congress believes that the
current level of IDEA due process litigation is injurious to the goals or the
operation of the special education system, or that the educational resources
soaked up by even meritorious litigation could be used more effectively in
other pursuits, then Congress should authorize a controlled experiment to test
what the effects of further restricting or completely eliminating parental
appeals from school-district IEP decisions or IEP implementation practices
would be. NCD would be happy to work with Congress in the design of such a
study, which would invite school districts to offer themselves for controlled,
empirical, outcomes-based research, as test sites for a detailed comparison
between current and litigation-free special education environments.
Accordingly, NCD recommends that, because adequate data does not
yet exist to justify the curtailment of parental due process rights in special
education, Congress undertake definitive research that would provide empirical
evidence on the subject of the impact of appeals and of attorneys on special
education before further restricting family rights.
Textbook and
Multimedia Accessibility
Essential to mainstream school participation is access to the
curriculum and to the instructional media and technology that are central to
education. For that reason, it is critically important that school technology
and educational resources, including software, textbooks, and multimedia instructional
materials used by students, are accessible to all students, including students
with disabilities.
In the 2002 Progress Report, NCD recommended that the Department
of Education (ED) take steps to adopt a national file format (NFF) to help
ensure that access occurs. The NFF would specify certain technical standards,
having nothing whatever to do with content, that textbook and other media producers
and providers would have to meet in order to ensure that their products can
be made accessible to students with a variety of disabilities. The NFF would
also require that electronic files embodying these features be made appropriately
available along with actual printed textbooks, videos, or other media.
NCD has questioned the approach adopted by ED for developing the
NFF. The Department sought agreement on the appropriate technical standards
among the textbook-publishing, educational, and disability communities through
a voluntary and nonbinding standards-setting process. We had expressed concern
that wholly voluntary, open-ended efforts might not be successful, because,
though negotiating in total good faith, the needs and views of the key stakeholders
might be too far apart to allow them to reach agreement.
Against this backdrop, we are gratified to report that developments
of 2003 appear to have produced consensus recommendations and have garnered
the support of the textbook-publishing industry for a set of voluntary standards
that they can implement and that should go a long way toward meeting students' and
educators' needs.44
Voluntary standards will go only part of the way toward solving
the problem, for they will not fully reconcile the numerous and inconsistent
state requirements bearing on this issue, which have contributed substantially
to the need and demand for a strong national standard in the first place. If
the voluntary NFF is adopted, it will not necessarily supersede inconsistent
or even conflicting state laws, and it will not by itself bring about the national
standardization that is desirable.
Accordingly, NCD recommends that Congress, in its reauthorization
of IDEA, include provisions calling for adoption of ED's consensus NFF (or,
if a comment period reveals that this standard is unsatisfactory, then for
development of another one) that would have to be met as a condition for textbook
purchase. Congress should also adopt the provision in the Senate draft bill
calling for the establishment of a national repository of computer files so
that books can effectively and promptly be made available to those schools
and students that need them in accessible formats.45
Coordination
of IDEA and NCLB
If IDEA is to be effective and if it is to achieve consistency
with national educational principles and goals, IDEA must be written and interpreted
with NCLB in mind. NCD commends ED and its Office of Special Education Programs
(OSEP) and Rehabilitation Services Administration (RSA) components for their
efforts during 2003 toward development and dissemination of teacher-training
and teacher-qualification standards and guidelines. NCD commends the Department
for its provision of technical assistance to the states in the area of teacher
qualifications and certification, including for special education teachers.46 Most of all, NCD applauds ED for its
efforts to clarify the interaction between standardized schoolwide performance
testing of students on the one hand, and the need for alternative achievement
methods and reasonable accommodations for students with disabilities on the
other. NCD urges that these efforts be continued and wishes to offer several
specific recommendations on how these initiatives can be carried forward most
effectively.
Application
of Average Yearly Progress
At the heart of NCLB accountability lies the concept of adequate
yearly progress (AYP). Based on year-to-year comparisons of student performance
on standardized tests, federal funding, technical assistance, and other resources
are allocated to schools. In cases where schools fail to demonstrate the requisite
AYP over two or more years, students of those schools are given transfer rights
that would not otherwise be available.
From the beginning, the application of AYP has created controversy.
Many of the controversies surrounding application of the concept are well known
and beyond the scope of this report. Several of the key issues relate directly
and specifically to the status of students with disabilities, however.
In this connection, one question of concern to special education
advocates, school district administrators, and parents has been whether or
when schools' AYP figures must count all students, including students with
disabilities. Schools have argued that because some students with disabilities
learn differently or perhaps less quickly than other students, use of the same
standardized testing strategies and methods to evaluate them would result in
the lowering of aggregate student scores. This, they argue, is unfair to the
schools and school districts, which stand to lose funding or prestige if scores
are not seen to increase as rapidly as expected.
In December 2003 ED issued regulations clarifying that, while
all students must be counted when determining school test performance, some
students with severe cognitive disabilities can be tested through the use of
alternate achievement or assessment methods. Subject to temporary waiver by
the Secretary of Education, not more than 1 percent of the students in a designated
student population can be assessed with alternative methods.47
While this rule represents an important example of how the needs
for uniformity on the one hand and for individualization on the other can be
balanced, it goes only part way toward answering the many serious and often
perplexing questions that still surround AYP and students with disabilities.
If school districts are to be given a full and fair opportunity to maximize
their scores, and, as important, if students with disabilities are to be given
an adequate opportunity to learn, compete, and demonstrate what they know,
as well as to avoid being scapegoated, a number of other critical issues must
be addressed.
We address two of the most pressing among them here. First is
the question of reasonable accommodations. Not only may students with disabilities
sometimes learn differently, they may also often need different resources and
technology to fully demonstrate what they know. Sometimes testing conditions
are suitable for or are modified to allow for these differences; sometimes
they are not. Even when they are, the goals of comparability are undermined
if standardized and well-understood requirements for and definitions of appropriate,
necessary accommodations do not exist or are not applied.
For example, students who are blind will obviously perform differently
on written tests if the test questions are available in an accessible format-such
as Braille, synthetic speech, or large print-than if the students have to squint
at standard print or interpret material read by a third party whose reading
style and level of knowledge also have an impact on the test-taking experience.
Likewise, students who are deaf will hardly be able to show what they have
learned when responding to oral tests if sign-language interpretation is not
available; moreover, the skill and experience of an available interpreter will
be a variable, albeit an imprecisely measured one, in the equation of the final
outcome.
Schools vary widely in their awareness of and responsiveness to
reasonable accommodations. People who think about reasonable accommodations
usually do so in the context of the ADA. While the issue has been widely discussed
in the context of requests for extra time, such requests, so far as they are
deemed to raise legal issues, have generally been decided under the ADA48 and
have not necessarily been decided with a view to educational policy. But whether
in the area of extra time, accessible media, or assistive technology, rationalization
of our nation's reasonable accommodations policy remains vitally necessary
if the goals of school-system accountability and individual achievement are
to be reconciled.
Accordingly, NCD recommends that Congress include in the IDEA
reauthorization provisions and resources supporting the conduct of a detailed
national study on the availability of, need for, and impact of a variety of
accommodations that have been used in various school settings. This study should
be conducted with a view to identifying approaches to the development of a
national strategy that will meet the ultimately complementary needs of students
with disabilities and needs of school systems. The study should also attempt
to assess the impact of various accommodations on test outcomes, so their impact
can be taken into account in the norming of tests and in ensuring fairness
and compatibility of results.
The second key issue surrounding the AYP arises directly out of
the first. To the degree that schools do provide reasonable accommodations
in test taking, the success of these measures depends in large measure on the
availability of suitable training in their use and on instructional resources
that allow the educational process to succeed for those with varying learning
styles. To say that a given accommodation is available is not to say that its
impact will not be subject to the experience of the school in administering
it and to the ability of the student to utilize it. NCLB has made an understanding
of these variables more important than ever before.
Like it or not, NCLB already has changed special education. Twenty
years ago, the notion was enshrined in law that IDEA requirements were satisfied
by resources and services that provided a minimally adequate education. But
now that NCLB requires across-the-board improvement in student performance
each year, mere adequacy is no longer enough; definite progress, meaning something
more than maintenance of baseline performance or results, is clearly required.
Congress, in its reauthorization of IDEA, must therefore articulate
standards, not only for outcomes, but also for resources and services that
will ensure such steadily improving outcomes. And Congress must at least acknowledge,
whether or not it has material means to address the problem at this time, that
it is easy to mandate outcomes, but that without the resources to reasonably
achieve them, the responsibility cannot be carried out by those charged with
its fulfillment, no matter their levels of creativity and commitment.
For these reasons, NCD recommends that Congress include in the
reauthorized IDEA an instruction to the Secretary of Education to collect data
on the availability and utilization of accessible instructional materials and
assistive technology in the schools, and collect all available data on the
connection between the application of such resources and a variety of reasonable
accommodation strategies with measures of the status and outcomes of students
with disabilities.
Teacher Qualifications
NCD commends ED for the outreach efforts it has undertaken to
acquaint states and local school districts with the requirements of NCLB regarding
teacher training and qualification, and for the technical assistance it is
providing to states in this critical area. Nonetheless, we remain concerned
that key issues regarding the application of NCLB professionalization requirements
to special education remain inadequately addressed and unresolved.
The list of disciplines, graduate programs, and types of expertise
available to and potentially necessary for the provision of special education
or related services is long. The circumstances under which students receive
educational and related services vary, and as with so much of public education,
issues of supply and demand play heavily into the deployment of resources and
into the matching of teachers and other professionals with students and classrooms.
Congress and ED need to decide whether and how the professionalism requirements
for staff providing services under IDEA can or should be identical or similar
to those generally applicable under NCLB. For this reason, NCD recommends that
the Department of Education promulgate detailed policy guidance that applies,
so far as deemed appropriate and with such differences as are deemed necessary,
the teacher qualification provisions embodied in NCLB to the unique needs and
conditions existing in special education and to the special education and related
services disciplines deemed to come within the scope of NCLB. In this regard,
NCD further urges Congress to incorporate in the reauthorized IDEA resources
and authority for the Secretary of Education to conduct a detailed assessment
of the personnel and personnel-preparation needs for students with disabilities,
of the current resources available for training specialized personnel, and
of means by which the resources required to fulfill identified intermediate-
and long-term specialized training and personnel needs can be reliably and
stably met.
Educational
Technology
Pursuant to the provisions of NCLB requiring iteration of a new
National Education Technology Plan (NETP),49 NCD recognizes the efforts of ED to
seek input in the development of such a plan. Where we have concerns is in
the extent to which this plan incorporates awareness of the technology issues
and options that bear most heavily on students with disabilities.
Specifically, NCD believes that no plan can fulfill the NETP designation
unless it includes a recognition that all educational technology used in or
by schools must be accessible to all students. Accordingly, NCD recommends
that the NETP set forth as a cornerstone and a fundamental requirement of America's
education technology policy that all technology resources and tools created
or used must be accessible to and usable by all students, irrespective of disability.
If preparation for living in the 21st century is at issue, as the Department
has indicated in formulating the NETP, then such preparation cannot be denied
to students with disabilities, any more than it can be withheld from students
on the basis of the economic status of their communities or the ethnic composition
of their schools.
Accountability
A perhaps even broader question posed by the interplay between
IDEA and NCLB is this: To the degree that accountability has been made the
touchstone of educational practice in this country for all students, how can
it be likewise incorporated into special education in ways that retain the
needed individuality and flexibility that create incentives for positive results
without stigmatizing the work and efforts of those schools and education professionals
whose achievements cannot always be measured in conventional or statistical
terms, or who lack adequate resources or training to effectively bring about
the requisite outcomes?
While most people share the same goals of full participation and
high achievement for students with disabilities as for all students, it is
not clear that aggregate school-by-school, district-by-district, or state-by-state
statistical comparisons are the best or even an appropriate basis for rewarding
progress or measuring outcomes. An example of the problem can be seen in the
recently issued alternative-methods regulations discussed above. School districts
are permitted to include scores achieved with alternative testing methods for
up to 1 percent of their students, but what expectations and what measurement
tools apply to the remainder of students with severe cognitive disabilities,
if such students amount to more than 1 percent of the potential test population
and no Secretary of Education waiver of the limit is forthcoming? How are schools
to be made accountable for their performance? Even with regard to students
whose alternative-testing scores are counted, how will IDEA relate to NCLB
in ensuring that these students also matter on an individual level? How will
the law ensure that these students, too, make progress from year to year, and
how will it monitor whether they, as a subset of the entire student population,
do make such progress? Can the individualization necessary for special education
be squared with the NCLB's statistical approach? And if schools receive extra
help, or if their students are allowed to transfer because a school falls short
of AYP, what measures are in place for ensuring that the extra help is meaningful
for and accessible to all students, or that available transferee schools are
accessible to all students, including those with disabilities?
It should be borne in mind that all of IDEA is not in need of
reauthorization. Several of its key components, including Part B, dealing with
state grants for special education, do not in fact sunset. Accordingly, NCD
recommends that if Congress cannot address these substantive issues in a manner
that their complexity and importance warrant, and in a manner that ensures
the necessary level of program accountability, Part B should not be modified
or changed but should be left in tact until the necessary further deliberations
can take place.
Higher Education
With unemployment among persons with disabilities remaining stubbornly
high despite a variety of federal initiatives and public-private partnerships
designed to improve the situation, and with long-term job prospects and income
potential for people without college education looking increasingly grim, it
should be more apparent than ever before that, wherever possible, higher education
is key to the economic prospects and aspirations for independence of youth
with disabilities. In this connection, as Congress also turns its attention
to reauthorizing the Higher Education Act,50 it
is particularly important and timely to note and commend to congressional attention
the findings and recommendations in the September 2003 report of NCD's Youth
Advisory Committee (YAC).51 The YAC's findings and recommendations
are too detailed and far-reaching for full recounting here. The report is highly
recommended, both for its analysis and for the fact that to a great extent
the issues it raises are framed and portrayed in the voices of those whose
futures and destinies are most at issue-our youth themselves.
Perhaps most disturbingly, the report shows that significant financial
barriers to higher education exist for many students with disabilities and
suggests that these barriers are made worse by their persistence, notwithstanding
a number of provisions in the current Higher Education Act that, to the casual
observer, appear sufficient to eliminate or prevent them. As only a report
based on the experiences of people affected can do, this YAC study documents
and humanizes many of these barriers.
Specific findings include the following:
Owing
to a lack of coordination among vocational rehabilitation, student financial
aid, Social Security, and medical assistance programs, benefits and services
forthcoming under one program can inhibit eligibility for needed services under
another.
Contrary
to provisions in the Higher Education Act allowing for student financial aid
awards to be increased where circumstances give rise to added disability-related
educational expenses, student financial aid officers are reluctant to exercise
their discretion to increase financial aid to help meet such costs.
Tension
or even conflict exists between vocational rehabilitation and student disability
services offices as to the allocation of costs and responsibility for various
needs and services, and students have no leverage for bringing about any reliable
measure of coordination or cooperation between these entities.
Students
with disabilities are often excluded from work study jobs or paid internships
in a discriminatory manner, thus depriving them of opportunities for earning
income that are available to other students.
NCD recommends that Congress hold hearings on the barriers facing
students with disabilities as part of its consideration of the Higher Education
Act reauthorization, and that students with disabilities be invited and encouraged
to share their views and experiences with lawmakers.
Because many of the issues that are addressed by IDEA are also
pertinent to postsecondary students with disabilities, NCD recommends that
Congress expand its assessment by incorporating into the Higher Education Act
provisions paralleling the textbook and technology accessibility measures recommended
above for IDEA. NCD recommends that if Congress lacks time or inclination to
conduct a thorough review of higher education in relation to students with
disabilities at this time, Congress should include in the reauthorization an
instruction and resources for the Secretary of Education to conduct a thorough
study of these issues, through the appointment of a national commission composed
of representatives and members of all relevant constituencies, including youth
with disabilities. The mandate and work of this commission should mirror that
of the President's Commission on Excellence in Special Education. Its report
should be submitted to Congress within one year after the commission meets,
with the understanding that the Administration, to the extent the recommendations
are credible and persuasive, will work energetically with Congress to adopt
necessary reforms, and that the Administration will expeditiously implement
those reforms that are within its regulatory and oversight authority.
School-to-Work
Transition
Not all students graduate from high school, and not all those
who do go on to postsecondary education. While some will pursue vocational
education and other forms of training, many will seek to enter the adult world
without benefit of additional formal training or certification.
Recognizing both the importance and the cost of higher education,
our nation has developed many strategies to assist students and families in
paying the costs of college. In addition to the federal student financial aid
system, we have utilized a number of tax-based strategies to help pay for a
college education.52 For students with disabilities who
face larger expenses than others or who come from families of lesser means,
the effectiveness of many of these measures is questionable. For students with
disabilities seeking to transition into adult life, the relative absence of
parallel strategies and resources to assist or empower them financially must
be a matter of concern.
NCD has analyzed the problem of transition at great length and
has made detailed recommendations in our recent annual progress reports as
well as in other major studies. Instead of repeating those recommendations
here, we wish to offer additional proposals, modeled on the measures we use
to facilitate college attendance, but aimed at facilitating transition for
youth with disabilities who do not pursue higher education.
Transition Savings
Accounts and IRAs
Many readers will be familiar with Section 529 education savings
accounts; with tax-deductible, prepaid state school tuition plans; and with
related measures designed to help build resources for college, and in some
cases for primary and secondary education. Might it not be useful if families
of children with disabilities were allowed to broaden the use of such accounts
or prepayments, so that they would become not merely education savings but
transition savings vehicles? NCD recommends that the Department of the Treasury
study and report to Congress on the potential, from revenue and administrative
standpoints, of establishing tax-deductible, contributory transition savings
accounts, the proceeds of which would remain tax-exempt when spent for qualifying
transition activities, services, or purposes. In conducting this study, which
should be completed within one year, Treasury should seek the input of the
disability community regarding all key points, including the potential impact
of such a program; the range of activities, goods, and services that should
be eligible to qualify for transition expenditure; and the time frames within
which funds should be expended.
Individual Development Accounts
Many young people with disabilities come from lower-income families,
and the benefit from tax-based strategies such as those suggested in the previous
section will be limited for them. NCD believes that other measures are needed
to infuse capital and resources into the transition process to facilitate entry
into higher education, vocational education, or other pursuits. In particular,
we believe that expanded use of individual development accounts (IDAs) could
perform several important functions in this regard.
As established under both the Assets for Financial Independence
Act of 1998 (AFIA)53 and the Personal Responsibility and
Work Opportunity Reconciliation Act (the welfare reform law) of 1996,54 IDAs are savings accounts that allow
specified categories of individuals and entities to contribute money for designated
asset-building and life-enhancing purposes, ranging from job training to first-time
home ownership. While there are various kinds of IDAs, applicable to different
categories of people and having differing permissible savings goals and administrative
rules, all IDAs have two basic features in common. They involve contributions
by the saver and matching contributions from other public or nonprofit entities,
and the funds saved in the IDA are not ordinarily countable in determining
eligibility for other benefits or programs. Less clear, in the case of some
IDA types, is the tax status of the funds when they are withdrawn.
In order to make IDAs a more effective tool for facilitating asset
accumulation and entry into mainstream society, NCD urges Congress to commission
a feasibility study of the broadening of the IDA concept to make this modality
available to all students with disabilities for transitional purposes and to
clarify the availability of a broad range of expenditure categories as permissible
within this framework. The tax deductibility of all contributed funds and the
tax-exempt status of all properly withdrawn funds should also be made clear,
as should the exclusion of IDA funds from means-testing under any other federal
or state program.
Conclusions
This chapter has addressed issues faced by Congress in the reauthorization
of IDEA and a variety of pressing issues that require coordination between
IDEA and NCLB for their resolution. It has also covered procedures for addressing
concerns relating to the accessibility of school technology. The chapter addresses
key concerns recently identified in higher education access and suggests innovative
new strategies for helping to meet the seemingly intractable problems associated
with transitional programs and services.
Recommendations
Summary
Recommendations
to Congress
Recommendation 3.1-Congress should ensure that when disciplinary
considerations require the removal of students with disabilities from the mainstream,
integrated classroom, such students are ensured the right to uninterrupted
education, special education, and related services consistent with their IEPs
and with evolving assessments and needs in the most appropriate educational
settings.
Recommendation 3.2-NCD recommends that Congress and the
Administration undertake a study of possible methods and sources for increasing
over time the level of federal participation in special education to 40 percent.
Recommendation 3.3-NCD recommends that Congress establish
a commission to study the long-term costs of special education and to recommend
strategies for ensuring the financial stability of state and local education
agencies in meeting national educational goals for students with disabilities.
Recommendation 3.4-NCD recommends that before the enactment
of any further curbs or restrictions of a procedural or economic nature on
the due process rights of parents, Congress fully review the impact and efficacy
of these existing provisions designed to curb litigation and complaints.
Recommendation 3.5-NCD recommends that because adequate
data does not yet exist to justify the curtailment of parental due process
rights in special education, Congress undertake definitive research that would
provide empirical evidence on the impact of appeals and of attorneys on special
education before further restricting family rights.
Recommendation 3.6-NCD recommends that Congress, in its
reauthorization of IDEA, include provisions calling for adoption of ED's consensus
NFF (or if a comment period reveals that this standard is unsatisfactory, then
for development of another one) that would have to be met as a condition for
textbook purchase. Congress should also adopt the provision in the Senate draft
bill calling for the establishment of a national repository of computer files
so that books can effectively and promptly be made available in accessible
formats to those schools and students who need them.
Recommendation 3.7-NCD recommends that Congress include
in the IDEA reauthorization provisions and resources supporting the conduct
of a detailed national study on the availability, need for, and impact of a
variety of accommodations that have been used in various school settings. This
study should be conducted with a view to identifying approaches to the development
of a national strategy that will meet the ultimately complementary needs of
students with disabilities and the needs of school systems. The study should
also attempt to assess the impact of various accommodations on test outcomes,
so their impact can be taken into account in the norming of tests and in ensuring
fairness and compatibility of results.
Recommendation 3.8-NCD recommends that Congress include
in the reauthorized IDEA an instruction to the Secretary of Education to collect
data on the availability and utilization of accessible instructional materials
and assistive technology in the schools, and to collect all available data
on the connection between the application of such resources and of a variety
of reasonable accommodation strategies, with measures of the status and outcomes
of students with disabilities.
Recommendation 3.9-NCD recommends that the NETP set forth
as a cornerstone and a fundamental requirement of America's education technology
policy that all technology resources and tools created or used must be accessible
to and usable by all students, irrespective of disability.
Recommendation 3.10-NCD recommends that if Congress cannot
address these substantive issues in a manner that their complexity and importance
warrant, and in a manner that ensures the necessary level of program accountability,
Part B of IDEA should not be modified or changed but should be left in tact
until the necessary further deliberations can take place.
Recommendation 3.11-NCD recommends that Congress hold hearings
on the barriers facing students with disabilities as part of its consideration
of the Higher Education Act reauthorization, and that students with disabilities
be invited and encouraged to share their views and experiences with lawmakers.
Recommendation 3.12-NCD recommends that Congress expand
its assessment by incorporating into the Higher Education Act provisions paralleling
the textbook and technology accessibility measures recommended above for IDEA.
NCD recommends that if Congress lacks time or inclination to conduct a thorough
review of higher education in relation to students with disabilities at this
time, Congress should include in the reauthorization an instruction and resources
for the Secretary of Education to conduct a thorough study of these issues,
through the appointment of a national commission composed of representatives
and members of all relevant constituencies, including youth with disabilities.
Recommendation 3.13-NCD urges Congress to commission a
feasibility study of the broadening of the IDA concept to make this modality
available to all students with disabilities for transitional purposes and to
clarify the availability of a broad range of expenditure categories as permissible
within this framework. The tax deductibility of all contributed funds and the
tax-exempt status of all properly withdrawn funds should also be made clear,
as well as the exclusion of IDA funds from means-testing under any other federal
or state program.
Recommendation
to the Department of Education
Recommendation 3.14-NCD recommends that ED promulgate detailed
policy guidance that applies, so far as deemed appropriate and with such differences
as are deemed necessary, the teacher qualification provisions embodied in NCLB
to the unique needs and conditions existing in special education and to the
special education and related services disciplines deemed to come within the
scope of NCLB. In this regard, NCD further urges Congress to incorporate in
the reauthorized IDEA resources and authority for the Secretary of Education
to conduct a detailed assessment of the personnel and personnel-preparation
needs for students with disabilities, of the current resources available for
training specialized personnel, and of means by which the resources required
to fulfill identified intermediate- and long-term specialized training and
personnel needs can be reliably and stably met.
Recommendation
to the Department of the Treasury
Recommendation 3.15-NCD recommends that the Department
of the Treasury study and report to Congress on the potential, from revenue
and administrative standpoints, of establishing tax-deductible, contributory
transition savings accounts, the proceeds of which would remain tax-exempt
when spent for qualifying transition activities, services, or purposes. In
conducting this study, which should be completed within one year, Treasury
should seek the input of the disability community regarding all key points,
including the potential impact of such a program; the range of activities,
goods, and services that should be eligible to qualify for transition expenditure;
and the time frames within which funds should be expended.
Chapter Four Health Care
Introduction
This chapter presents current issues and concerns about the health
care system. It highlights issues of general concern in terms of the particular
ways they affect people with disabilities, and it addresses issues that are
likely to become more widely discussed in the near future, as well as several
issues that have resisted solution for some years.
The first section addresses the Medicaid program. The next section
reviews testing and approval of assistive technology (AT) devices by the Food
and Drug Administration (FDA) and by the Centers for Medicare and Medicaid
Services (CMS). The following section concerns the implications of the new
HIPAA privacy regulations for people with disabilities. Later sections address
Medicare at the dawn of its coverage of prescription drugs, revisit the dual
Medicare- and Medicaid-eligible population, consider issues of mental health
services and parity, and discuss possible tax-based strategies for making health
insurance more affordable.
Medicaid
Medicaid is the primary program for the provision of health care
to low-income Americans, including older persons, children, and people with
disabilities. The past year has been a tumultuous and important one in the
history of Medicaid, as this and the next few years promise to be. Because
most of the discussion of Medicaid's future appears to take place with little
reference to the specific concerns of beneficiaries with disabilities, NCD
deems it extremely important, as we have in a succession of annual progress
and specialized reports,55 to
continue addressing these concerns and bringing them within the focus of the
overall public policy and budgetary debate.
Institutional
Bias
Because Medicaid pays for nursing home care for eligible persons,
including many older Americans and Americans with disabilities, it is more
than a conventional health insurance program. We will discuss its central role
in our nation's long-term care strategy in the next chapter. Here it is enough
to reiterate the concerns voiced by many in the disability community that the
legal structure of the Medicaid program includes powerful financial disincentives
against allowing people to age-in-place, remain in their own homes, and live
and die in their own communities. Instead, the structure of the program creates
conditions that force people into institutions who would not choose to go into
an institution if given a full and free choice in the matter, and who would
not need to if services now provided only in institutions were available in
home and community settings. Proposed legislation could assist the needs that
are unmet in these areas.56
As a program established a generation ago, before the notion of
aging-in-place or of community-based services and supports was widely known
or well-established, and because it is a program that was established 25 years
before the ADA enshrined the values of community integration in federal law,
Medicaid's favoritism for nursing home placements and services over in-home
supports and community services can initially be understood as an artifact
of history. But as the issues and options become better known, more widely
understood, and more pressing, contemporary causes play a larger and larger
role in explaining the program's structure.
How does Medicaid foster and perpetuate a bias in favor of institutions
over homes and communities? It does this in two main ways. First, the services
authorized under the Medicaid law are divided into two major categories: those
that are mandatory (meaning that states must provide them as a condition for
participation in and receipt of federal funds under the program) and those
that are optional (meaning that, with certain minor exceptions, states are
free to provide them or not, and in some instances to define them as they see
fit).57 In addition, a third category of Medicaid
services includes those provided under what are known as waiver programs.58 Nursing home services are among the
mandatory services, but the variety of in-home services required by people
who wish to and who could remain in their own homes and communities are either
optional or are provided as waiver services.
Faced with dramatic budget shortfalls over the past three years,
many states, called on to make difficult choices among conflicting expenditure
and taxing priorities and confronted with rapidly rising Medicaid costs, have
taken steps to curtail Medicaid expenditures. Because cutting mandatory services
is difficult or even impossible, this has meant cutting optional or waiver
services, which can be cut with much less need of federal approval or risk
of federal disapproval.
Various studies have estimated that some 70 percent of Medicaid
long-term care expenditures currently go to institutional care.59 Although
the President's NFI under the Choice Program and through other efforts has
included a number of infrastructure, experimental, and direct-services grants
aimed at enhancing community-based services, no data is known to us showing
whether these initiatives have generated sufficient additional support for
home and community-based services to offset the impact of state budget cuts
on these optional Medicaid services or to lower the percentages of Medicaid
long-term care expenditures going to institutional services.
As a starting point for understanding and addressing the institutional
bias problem, NCD recommends that Congress hold hearings on the issue as early
as possible in the second session of the 108th Congress in 2004. Such hearings
are particularly urgent because other major reforms in Medicaid are under consideration.
In conjunction with such hearings, NCD recommends that CMS (the
agency that administers the Medicaid program) begin publishing and updating
on a regular basis detailed information on the proportion of Medicaid, Medicare,
and other federal health care funds going to the provision or support of institutional
versus home and community-based services and care. For people of low and moderate
means living in or planning for retirement, such information may be as important
as many other datasets and indexes the government publishes, such as nursing
home quality data.60
Medicaid Waivers
In an effort to facilitate experimentation and innovation, and
in order to maximize state flexibility in the administration of the Medicaid
program, CMS has made extensive use of its authority to grant states various
waivers.61 This
means that states are exempted from provisions of the Medicaid law in order
to provide different services or to provide established services in different
ways that would otherwise be impossible. A sense of what Medicaid waivers were
intended to do can perhaps be gleaned from what is still the best-known waiver,
namely, the Katy Beckett waiver.62 Dating back to 1982, this waiver was
created to allow Medicaid services to be provided in the homes of children
with disabilities. This occurred under circumstances in which family income
would have entitled them to services only if the children entered nursing homes.
In view of attempts to broaden the mix of services available under
Medicaid, waivers have generally been regarded as either benign or positive
by advocates and beneficiaries alike. But recent indications are that the intention
and impact, as well as the scope, of waivers may be changing in order to facilitate
not the provision of new services, but the reduction or elimination of existing
ones.
As waivers have proliferated in number, often each with its own
eligibility rules, budget allocation, or waiting list, tracking them and using
them to coordinate services has, according to many accounts reaching us, become
increasingly complex and difficult. Recent reports suggest that the Administration
is considering offering states a new kind of waiver.63 Under
this approach, states would receive both short-term financial relief and much
greater administrative flexibility, but they might receive these in return
for agreeing to long-term limits on how much they could spend on the program.64
Medicaid has traditionally been an entitlement program, in the
sense that states were ensured of their applicable match (somewhere between
50 percent and 80 percent, depending on the amount of their permissible Medicaid
expenditures and other factors). There was no absolute dollar limit on what
they could receive or spend. Eligibility standards and the medical needs of
beneficiaries would determine their expenditure and reimbursement levels.
But by agreeing to long-term expenditure caps in return for short-term
financial relief and greater management flexibility, states and the Federal
Government risk fundamentally changing the structure of the program. Under
this new waiver approach, states would agree to caps on how much they could
receive. In essence, a contractual approach aimed at capping Medicaid expenditures
would be used where a statutory authorization is unavailable.
The word "flexibility" is often heard in discussion of such potential
waivers, but it can be used to justify many things, including potential cuts
in availability or narrowing the definitions of various services; reduction
of eligibility criteria to lower caseloads; changes in fee schedules or capping
of expenditures for various services; limitations in the number of procedures,
services, or visits allowed; and a host of other measures, all of which have
been used in one place or another to help stem the steep rise in Medicaid costs.
NCD lacks sufficient information to offer an opinion on the desirability
of these so-called super waivers. But we are certain that if they are to be
fully evaluated, their potential impact on Medicaid beneficiaries with disabilities,
including beneficiaries with low-incidence disabilities or unusual medical
conditions, needs to be fully analyzed.
NCD also believes that because of the growing importance of waivers
in the lives of Medicaid recipients, the process by which state waiver applications
are developed, reviewed, and approved needs to be overhauled, regularized,
and standardized. Transparent, open, and accountable procedures, which give
due and guaranteed scope for beneficiary and public input and comment, must
be developed and implemented without delay. In too many states, administrative
procedure acts do not provide means for the public to participate in the development
of waiver proposals or in the setting of budgetary or service priorities. The
current system excludes the public and, most important, those segments of the
public most profoundly affected by changes from any meaningful opportunity
to take part in the development of Medicaid policy. Accordingly, NCD recommends
that the Department of Health and Human Services (HHS) require that state Medicaid
plans include detailed descriptions of how waiver requests will be developed
in ways that permit and encourage public and community input, and that each
waiver request include detailed information about the nature of public and
community input, pro and con, that was received. Further, to make certain that
the waiver process is as open and accountable as the regulations that waivers
modify, NCD recommends that HHS's own Medicaid waiver review processes be opened
to public participation through publication of all waiver requests in the Federal
Register with opportunity for comment, that the substance of comments be
published with HHS decisions on them, and that all waivers be initially approved
on a time-limited basis and be subject to review and renewal or modification
after a specified period of time. If HHS determines that it lacks statutory
authority to implement these reforms, or if HHS otherwise declines to take
these steps, NCD recommends that Congress amend the Medicaid law to empower
or require the Department to take the necessary steps.
Consumer-Directed
Services
NCD commends CMS for its efforts to evaluate, test, and expand
the use of self-directed, cash-and-counseling, waiver-based, and other strategies
for increasing the opportunities for Medicaid recipients to select their own
services and service-providers and to take an increased role in the management
of their own services.65 Such efforts should continue and need
to be fully incorporated into any comprehensive Medicaid reform effort.
Important questions exist about the extent to which such efforts
can be expanded beyond home care services into some of the more traditional
areas of medical care, and how these traditional medical services can be most
effectively linked with community resources. The crucial role of patients and
their families as active participants in the planning and implementation of
their own treatment plans has become widely recognized and accepted. Medicaid
(and Medicare) need to take as broad a look as possible into how these practices
can be introduced into all phases of the federal health insurance programs.
Even if only as a means of encouraging patient compliance with treatment plans,
such participation is increasingly central to the efficacy of all medical treatment
and care. It needs to be no less a part of the federal health care programs
as it is coming to be in those operating in the private sector. Accordingly,
NCD recommends that Congress establish a national commission to study the question
of how consumer participation and direction can be maximized throughout the
federal health insurance programs, with a view to adding the findings and recommendations
of this study to such Medicaid reform proposals as the Administration and Congress
may in due course develop.
Pending the report of this commission, NCD recommends that Congress
enact the Money Follows the Person (MFP) legislation currently before it.66 Apart
from its possible role in defining the scope of services that Medicaid will
support, MFP would substantially enhance patients' participation in and consumers' direction
of the Medicaid health care services they receive. Enactment of MFP would not
be premature. As it relates to the prospective reform of Medicaid as a whole,
MFP (and Medicaid Community Attendant Services and Supports Act [MiCASSA],
discussed in the next chapter) would provide a template for consideration of
other major reforms.
Medicaid Buy-In
Though the reasons are complex and controversial, current trends
point to the continuation of a long-term crisis in the availability of health
insurance in our country. Whatever the reasons and whatever the solutions,
large numbers of Americans, including children, are denied access to meaningful
health insurance by cost, by preexisting condition exclusions, by lifetime
cost caps, or by other factors outside their control. Medicaid buy-in programs,
which encourage and assist states to offer insurance coverage on a sliding-scale
cost basis to persons above the normal federal poverty lines, represent one
viable strategy for dealing with this problem.
Elsewhere in this report we discuss the role of buy-in as a tool
for reducing work disincentives for persons with disabilities. But this by
no means represents the entirety of what such programs can do. NCD recommends
that Congress begin the process of facilitating expanded use of Medicaid buy-in
programs, in light of their potential to reduce the number of uninsured Americans,
by adopting the Family Opportunity Act.67 This
legislation would expand buy-in opportunities for families with children, contributing
in many ways to the health and well-being of generations to come and to the
functionality and stability of families today. NCD urges Congress to enact
the Family Opportunity Act without delay.
Medical Device
Review
In 2002 Congress passed and the President signed the Medical Device
User Fee and Modernization Act (MDUFMA).68 In last year's progress report, NCD
expressed both its hopes for and its concerns about this new law. The intervening
year has not witnessed the progress or yielded the clarifications that we had
hoped for.
MDUFMA was enacted in response to backlogs in the review of medical
devices by FDA. Through a combination of user fees paid by device manufacturers
and increased budget appropriations, the Act sought to reduce the time periods
required for device review and otherwise to reform and rationalize the review
process. What continues to concern NCD is the extent to which AT devices or
universally designed devices that fall within the medical-device orbit can
or will receive adequate attention under this new system.
FDA's device review program should take steps to ensure that persons
with knowledge of disability and AT will be available, either as regular staff
members or as consultants, to help review devices designed for use by, or with
particular implications for, persons with disabilities. To the degree that
user fees may permissibly and openly play a role in the prioritization accorded
to the products of particular manufacturers, FDA should also bear in mind that
the producers of assistive and universally designed technology may often be
small companies with little capacity to pay such fees.
Because AT devices may serve low-incidence populations and seemingly
rare needs, FDA should remember that many such devices are also highly innovative
and unique, and that their availability or unavailability can make critical
differences in the lives of prospective users and in the prospects of the companies
that manufacture and distribute them. The small number of people sometimes
affected is outweighed by the large impact AT devices can have on users' lives.
For these reasons, NCD recommends that FDA develop and publish a comprehensive
plan for ensuring that assistive and universally designed devices with particular
applicability to the lives of people with disabilities are evaluated on a priority
basis by people who are knowledgeable about the issues and people such technology
is designed to address.
An important parallel development that underscored the need for
effective coordination must also be noted. The Medicare reform legislation
enacted in December 2003, commonly known as the Medicare Modernization Act
(MMA),69 includes
provisions to expedite Medicare review of medical devices for coverage under
the program. Specifically, the law provides for national coverage decisions
governing the availability of various devices to be issued within specified
periods. It seems likely that the activities of FDA and CMS do, or should,
overlap significantly in this area. Accordingly, NCD requests information from
HHS, as the cabinet department with jurisdiction over both FDA and CMS, on
the nature and extent of FDA and CMS interactions in the device review realm,
and the measures taken to ensure the requisite coordination, cooperation, and
sharing of information and of what may be limited resources and expertise in
the AT area. Based on the results of this inquiry, NCD recommends that HHS
develop and implement a comprehensive plan for ensuring that the resources
of FDA and CMS will be brought to bear in a coordinated fashion to assess and
review AT and universally designed medical devices. This coordination will
ensure the earliest and most effective determinations possible on the suitability
of such equipment for coverage under Medicare and other insurance programs.
HIPAA Privacy
Regulations
One milestone of 2003 was the coming into force of major new patient
privacy guidelines under the Health Insurance Portability and Accountability
Act.70 These HIPAA regulations give patients
increased rights with respect to the dissemination and use of their personal
medical information, but the methods used to implement the law raise some important
issues for people with disabilities. Research and monitoring are needed to
determine how and how well the rights afforded to patients by the law are being
made known and available to persons with intellectual or sensory disabilities
that may prevent them from reading, understanding, or otherwise accessing legalistic
written forms. Are consent forms or informed consent notices made available
in clear and understandable language, and, when necessary, are they being supplemented
by individualized explanation? Are printed materials pertaining to rights under
the law being made accessible in alternative, nonprint formats to persons with
visual impairments? Are suitably skilled and discreet interpreters available
when persons who are deaf or hard of hearing have questions about their rights
or about the forms?
NCD is aware of no broad-based effort to describe or evaluate
the accessibility practices of health care practitioners, hospitals, insurers,
or other relevant entities in the HIPAA implementation context. Such data is
vitally needed, especially in light of the further complexity resulting from
the involvement of third parties as sign-language interpreters, people who
read material aloud, or other intermediaries in the creation of media or exchange
of information. Accordingly, NCD recommends that HHS, through its Office on
Disability or such other unit as the Secretary deems appropriate, undertake
a study into the methods used for implementation of HIPAA requirements for
people with disabilities, and into the effectiveness of these methods as they
relate to the particular access needs faced by various subgroups of people
with disabilities. To do less runs the risk that HIPAA will become beneficial
to only some Americans.
Medicare Reform
Although the Medicare reform legislation enacted in late 2003
has been discussed by the press largely in terms of its impact on the availability
of prescription drugs for older Americans, the new law in fact changes the
Medicare program in many ways and raises important questions for people with
disabilities. At this early point, as implementation of transitional prescription
drug availability through drug discount cards begins on June 1, 2004, and as
longer-term plans are made for full implementation of the law beginning in
2006, time is still available for ensuring that the new law does not unknowingly
harm Medicare recipients with disabilities, whether over or under the age of
65. This section of our report alerts policymakers, insurers, health care practitioners,
and Medicare beneficiaries to some of these emerging concerns.
Choosing Coverage
A variety of competitive interim drug benefit plans, offering
the drug discount card, are likely to be made available to Medicare beneficiaries.
While the broad parameters of income eligibility and amount of subsidy are
standard, many other features of the program, including the precise range of
pharmaceuticals to be covered under each company's discount card and the sources
for obtaining them, are likely to vary. The variety of options and plans will
undoubtedly include some plans that are more or less appropriate for every
need, but their variety and complexity may also impose a heavy burden of knowledge
and choice on consumers to select the plan, if any, that is best for them.
For this reason, it is imperative that background information about the plans,
sign-up forms, and other key consumer information not only exist, but be accessible
to people with disabilities. Therefore, NCD recommends that in its oversight
of the discount-card program and its role in approving proposals from insurers
or drug providers, CMS require (and thereafter monitor for evidence of compliance)
that all materials utilized or published by discount-card providers be available
in a variety of written, accessible Web-based, telephone-based, and other formats.
CMS should also ensure that reliable and readily accessible sources of assistance
in understanding and comparing program provisions, and thereafter in negotiating
the details of program participation, are available. At a minimum, this includes
accessible Web sites, alternative formats, accessible facilities, and potentially
individualized or auxiliary measures when necessary for Medicare recipients
with disabilities. To accomplish these goals, NCD recommends that CMS provide
appropriate mechanisms with precise guidelines for ensuring that the requirements
in Sections 504 and 508 of the Rehabilitation Act for nondiscrimination and
equal access are applicable to all documentation and outreach activities undertaken
by private sector providers under the new law. To the extent that private sector
managed care organizations and other drug and Medicare benefit and services
providers will be federally financed to encourage their participation in the
Medicare program, NCD recommends that CMS clarify whether it regards these
entities as coming within the coverage of the antidiscrimination provisions
of Section 504 of the Rehabilitation Act. Moreover, to the degree that these
entities provide information to the public, directly or indirectly via electronic
and information technology, on behalf of the Federal Government and about federal
programs, their communications with the public should be subject to the provisions
of Section 508 as well.
The Mix of Services
Although it is likely that discount-card providers will offer
one or more medications in each of a number of major drug categories and for
the treatment of most common conditions, the law vests broad discretion in
providers to develop the drug formularies that best meet the needs of their
programs and the needs of the intended target audiences. This still leaves
open the possibility that, short of intentional discrimination, some plans
may make choices that result in the relative unavailability of key medicines
and services to persons with high-cost or low-incidence disabilities. As a
result, the benefits of heightened consumer choice may, in practice, be denied
to some Medicare beneficiaries with disabilities.
CMS needs to ensure that all eligible Medicare beneficiaries who
choose to avail themselves of the prescription drug discount program can in
fact get the prescribed drugs they need. More broadly, and on a long-term basis,
CMS must ensure that Medicare beneficiaries with disabilities who elect to
seek their Medicare services through managed care or another private-sector
program partner (as the incentive systems being put in place under the new
law will inevitably lead many people to do) will have access, irrespective
of disability, to all the Medicare-covered services and facilities that they
need. Accordingly, NCD recommends that CMS begin a planning process designed
to ensure that the individual decisions of providers will not result in any
Medicare recipients with disabilities being forced to choose between the increasing
advantages of managed care and access to the particular treatments, modalities,
and practitioners they need. If Medicare beneficiaries with low-incidence,
high-cost disabilities are to have access to the advantages of drug discounts
and managed care, it is important for this consideration to be incorporated
into the planning process from the earliest days of the program.
Dual Medicaid
and Medicare Eligibility
Because low-income Medicare recipients are often eligible for
Medicaid, too, they become what are known as dual eligibles. Although two insurance
coverages would normally be assumed to be better than one, this is not always
the case. As we have pointed out in prior reports, and as has been the subject
of several major federal court cases,71 the two insurance programs have some
contradictory procedures.
For example, Medicaid payment for many durable medical equipment
(DME) devices requires prior authorization by the state Medicaid agency. A
Medicaid recipient, even if somehow able to afford such devices, could not
go out and buy them first, then seek Medicaid reimbursement afterward. By contrast,
Medicare coverage for such equipment is determined in most cases only when
the beneficiary seeks reimbursement after having already purchased the device.
Under Medicare, denial of a request for DME is generally not appealable unless
the individual has already paid for the device and is seeking reimbursement
for its cost.
So what do dual-eligible individuals do? If they somehow manage
to go out and buy the device, they forfeit Medicaid coverage, with no certainty
that Medicare will cover it. If they await Medicaid prior authorization and
appeal any denial, they cannot in most situations hope to get any payment from
Medicare. So in the end, the choice of either funding source, though made with
no certainty as to the outcome, precludes recourse to the other funding source.
Very good reasons may exist for operating each of these programs
in different ways. It is not our purpose to condemn or prefer either model.
The problem, though, is that real people seeking assistive technology mobility
devices (ATMD) or other DME are affected by the jagged interface between the
two programs.
Faced with this situation, NCD recommends that Congress enact
legislation providing for a pilot demonstration study under which the prior-authorization
approach would be used exclusively with one group of dual-eligibles and the
purchase-first approach with another matched group. The results and implications
should then be compared, and the solution and best practices that emerge from
the research should be implemented.
Mental Health
Parity and Services
As we have done in previous reports,72 NCD
continues to recommend to Congress that it adopt legislation to ensure that
all health insurance provides benefits for mental health treatment that are
equal to the benefits it provides for the treatment of physical illness. In
an era when separation of the mind and the body, of the physical, mental, emotional,
and spiritual, have come to be recognized as outmoded, the justification for
maintaining separate reimbursement systems and categories is no longer sustainable.
Furthermore, by enshrining pharmaceuticals as the primary treatment modality
for mental and emotional illness, we have acknowledged the primacy of organic
factors in both physical and mental conditions. If both physical and mental
illnesses are treated as organic conditions, the question of how insurance
companies can justify systemic differences in payment for medical and pharmaceutical
services becomes more compelling.
To the degree that a specialized system for the diagnosis and
treatment of mental and emotional health conditions does exist, the year 2003
witnessed an important contribution to our knowledge about that system. Confirming
many of the findings of NCD's own earlier study, the report of the President's
New Freedom Commission on Mental Health was issued.73 This
report, like NCD's, identified major shortcomings-coordination and systemic
problems-in our current arrangements for the provision of mental health treatment
and services and made important and far-reaching recommendations for reform.
In view of the accumulating weight of findings and data, NCD recommends
that Congress take steps to implement the major recommendations of these reports.
To that end, NCD also recommends that the Administration publish detailed,
point-by-point reactions to the findings and recommendations, and that OMB
be instructed by the President to prepare detailed estimates of the costs,
savings, and benefits that would accrue from the adoption of each of the recommendations.
Insurance Premiums
Universal agreement exists for the proposition that too many Americans
are without health insurance. But as widespread as the conviction that something
must be done may be, opinions and proposals for how to reduce these numbers
vary widely.
Consistent with its approach to various problems, the Administration
has indicated its support for tax-based measures as one major technique for
tackling the affordability problem. NCD notes that a number of tax-based strategies
have already been brought to bear in this connection. From increased deductibility
of the health and long-term care premiums paid by self-employed persons,74 to the health care tax credit (HCTC)75 that helps defray the costs of health
insurance premiums for persons who have lost jobs due to certain developments
in international trade or whose retirement pensions have been taken over by
the Pension Benefit Guaranty Corporation, the tax system has been utilized
to subsidize largely individually purchased insurance coverage.
While taking no position on the wisdom of further use of tax subsidies
to achieve coverage goals, let alone on the utility of any particular proposal,
NCD recommends that as a prerequisite to the adoption or modification of the
law in this area, Congress instruct the Internal Revenue Service (IRS) to undertake
a study of the relative potential of such measures to reduce levels of noncoverage
and to make coverage more affordable to moderate- and lower-income persons.
The study should also include information on the likely impact of such subsidization
on the premiums charged and the rating and other actuarial practices that health
insurers use.
Conclusion
This chapter addressed major developments in the health care system
during 2003, specifically as they affect and relate to persons with disabilities.
It dealt with the ability of the government to formulate and execute health
policy and discussed the implications of a number of proposals.
Recommendations
Summary
Recommendations
to Congress
Recommendation 4.1-NCD recommends that Congress hold hearings
on the issue of institutional bias in Medicaid as early as possible.
Recommendation 4.2-NCD recommends that Congress amend the
Medicaid law to empower or require HHS to take the necessary steps to make
the Medicaid waiver process open and accountable to the citizenry.
Recommendation 4.3-NCD recommends that Congress establish
a national commission to study the question of how consumer participation and
direction can be maximized throughout federal health insurance programs, with
a view to adding the findings and recommendations of this study to such Medicaid
reform proposals as the Administration and Congress may in due course develop.
Recommendation 4.4-NCD recommends that Congress enact the
Money Follows the Person legislation currently before it.
Recommendation 4.5-NCD recommends that Congress begin the
process of facilitating expanded use of Medicaid buy-in programs by adopting
the Family Opportunity Act.
Recommendation 4.6-NCD recommends that Congress enact legislation
that would provide for a pilot demonstration study under which the prior-authorization
approach would be used exclusively with one group of dual-eligibles and the
purchase-first approach with another matched group. The results and implications
of the study should be compared and the solution and best practices that emerge
from the research should be implemented.
Recommendation 4.7-NCD continues to recommend to Congress
that it adopt legislation to ensure that all health insurance provides benefits
for mental health treatment that are equal to the benefits it provides for
the treatment of physical illness.
Recommendation 4.8-NCD recommends that Congress take steps
to implement the major recommendations of the reports by NCD and the President's
New Freedom Commission on Mental Health.
Recommendation
to the Administration
Recommendation 4.9-NCD recommends that the Administration
publish detailed, point-by-point reactions to the findings and recommendations
of the report of the NFI Mental Health Commission, and that OMB be instructed
by the President to prepare detailed estimates of the costs, savings, and benefits
that would accrue from the adoption of each of the recommendations.
Recommendations
to CMS
Recommendation 4.10-NCD recommends that CMS (the agency
that administers the Medicaid program) begin publishing and updating on a regular
basis detailed information on the proportion of Medicaid, Medicare, and other
federal health care funds going to the provision or support of institutional
versus home- and community-based services and care.
Recommendation 4.11-NCD recommends that in its oversight
of the Medicare discount-card program and its role in approving proposals from
insurers or drug providers, CMS require (and thereafter monitor for evidence
of compliance) that all materials utilized or published by discount-card providers
be available in a variety of written, accessible Web-based, telephone-based,
and other formats, and that reliable and readily accessible sources of assistance
in understanding and comparing program provisions, and thereafter in negotiating
the details of program participation, be available.
Recommendation 4.12-NCD recommends that CMS provide appropriate
mechanisms with precise guidelines for ensuring that the requirements for nondiscrimination
and equal access embodied in Sections 504 and 508 of the Rehabilitation Act
are applicable to all documentation and outreach activities undertaken by private
sector providers under the new law.
Recommendation 4.13-NCD recommends that CMS clarify whether
it regards private sector managed care organizations and other drug and Medicare
benefit and services providers as covered by the antidiscrimination provisions
of Section 504 of the Rehabilitation Act.
Recommendation 4.14-NCD recommends that CMS begin a planning
process designed to ensure that the individual decisions of providers will
not result in any Medicare recipients with disabilities being forced to choose
between the increasing advantages of managed care and access to the particular
treatments, modalities, and practitioners they need.
Recommendations
to HHS
Recommendation 4.15-NCD recommends that HHS require state
Medicaid plans to include detailed descriptions of how waiver requests will
be developed in ways that permit and encourage public and community input,
and that each waiver request be required to include detailed information about
the nature of public and community input, pro and con, that was received.
Recommendation 4.16-NCD recommends that HHS's own Medicaid
waiver review processes be opened to public participation through publication
of all waiver requests in the Federal Register with opportunity for
comment, that the substance of comments be published with HHS decisions in
response to them, and that all waivers be initially approved on a time-limited
basis and be subject to review and renewal or modification after a specified
period of time.
Recommendation 4.17-NCD recommends that HHS develop and
implement a comprehensive plan for ensuring that the resources of FDA and CMS
will be brought to bear in a coordinated fashion to assess and review AT and
universally designed medical devices to ensure the earliest and most effective
possible determinations on the suitability of such equipment for coverage under
Medicare and other insurance programs.
Recommendation 4.18-NCD recommends that HHS, through its
Office on Disability or such other unit as the Secretary deems appropriate,
undertake a study into the methods used for implementation of HIPAA requirements
for people with disabilities, and into the effectiveness of these methods as
they relate to the particular access needs faced by various subgroups of people
with disabilities.
Recommendation
to FDA
Recommendation 4.19-NCD recommends that FDA develop and
publish a comprehensive plan for ensuring that assistive and universally designed
devices with particular applicability to the lives of people with disabilities
are evaluated on a priority basis and by people who are knowledgeable about
the issues and people such technology is designed to address.
Chapter Five Long-Term Services and Supports
Introduction
Through Social Security, our nation provides a system of income
support for its senior citizens. Through Medicare, these citizens, as well as
many younger people with disabilities, are also provided with health insurance
and medical care, including most recently some assistance in meeting
prescription drug costs. While both of these programs are buttressed by
recipients' personal resources and by a variety of nongovernmental
institutions, Social Security and Medicare programs are the bulwark of the
security to which many people reasonably aspire.
However, with respect to long-term care not necessarily of a
medical nature, ranging from help with activities of daily living (ADL) to
institutional or custodial care, it does not seem unreasonable to say that
America is without a system. Medicaid is probably the largest source of public
sector participation in the provision and financing of long-term services and
supports, both for older Americans and for many Americans with disabilities of
all ages. Yet Medicaid was not designed to meet the range of needs that the
aging of the U.S. population is bringing into ever-sharper focus.
This chapter attempts to articulate the scope of the challenge
faced and to suggest some parameters for analyzing and responding to it. It
describes the looming crisis that the country faces, introduces the concept of
community integration, addresses the role of insurance, and urges application
of the concepts of accountability and cost effectiveness to current policy.
The Looming Crisis
Although it is not widely appreciated today, one of the major reasons
President Franklin D. Roosevelt proposed Social Security as a cornerstone of
the New Deal in 1935 was to facilitate national economic recovery. Economists
reasoned that, beyond the reduction of poverty and the easing of suffering,
Social Security would free up large amounts of private capital for investment.76
Instead of having to spend their income to support their elderly
parents, people of working age could invest that money in houses, cars,
appliances, and other goods and services that would create demand and stimulate
economic recovery. As the situation was with income replacement and maintenance
in 1935, so is it rapidly becoming with long-term services and care today. With
life expectancy increasing, unless our nation finds some way to reallocate the
growing costs of long-term care, many middle class baby-boomers will live long
enough to be driven into poverty, and many of their children will be forced to
bear long-term care cost burdens. Such expenses could starve the economy of the
capital needed for investment, purchase of housing, and stimulation of consumer
demand.
When one considers how the costs of education for these
caregivers' children are also rising, the consequences of this ticking social
time bomb become even more frightening. Hence, long-term services are not just
an issue for the people who need them today. They may be the most significant
domestic economic issue facing this country. In an increasingly interdependent
world, they may also have implications for our competitiveness, standing, and
influence in the world that reach far beyond U.S. borders.
To draw out the comparison between Social Security and long-term
services, this report also notes that income replacement at less than 100
percent was the issue for Social Security. With long-term services and
supports, by contrast, the costs of minimally necessary measures may in some
cases exceed what income replacement would have cost. That is to say, one would
not ordinarily ever expect a social insurance program to replace 100 percent of
a retiree's full-time earnings during the peak earning years. Yet with
long-term care, the costs of even a modest array of services can easily exceed
what the individual earned. In the case of persons with disabilities who
receive personal assistance services while working, the costs can exceed what
they are currently earning and certainly what they are able to pay.
While awaiting the results of NCD's study on long-term
services and supports,77
raising awareness around the scope and seriousness of the problem is necessary.
That consciousness requires attention to the following key facts:
In any discussion of the economics and demographics of
long-term care, issues of disability and of aging converge.
The number of people likely to need some sort of assistance in
daily living, wherever they live, will increase dramatically as the population
ages.
Americans trumpet the medical advances that have prolonged
life but appear to have little appreciation for the quality-of-life and
resource allocation issues that come with responsible application of these
medical advances.
Thus far, funding for long-term services and supports
overwhelmingly is directed toward nursing homes and other forms of
institutional care. This occurs largely because programs such as Medicaid that
channel long-term services funds derive from an acute care model of medical
care, and the assumption has built up that those people who need nursing home
care face more acute situations than people who do not.
There has been reliance on unpaid family labor to subsidize a
considerable portion of the costs of home care, and little data regarding the
impact of such subsidization on the economy or on the ability of families to
sustain or improve their standard of living has been collected.
We have failed to develop partnerships (other than several
developed experimentally in a few states) between government, employers, and
insurers. Such partnerships would help middle class families to meet the costs
of in-home support services associated with advancing age and with disability.
Community
Integration
Without identifying the source from which needed long-term
support resources will come or how large those resources will need to be, the
fundamental allocation questions facing society are: What resources and services
are provided with the funds, and to whom are the funds provided? As discussed
in the preceding chapter on health, to the extent that Medicaid-the principal
source of federal involvement in long-term care funding-maintains policies that
favor institutional placement over home and community living, to continue the
favoritism flies in the face of, and resists, a number of powerful and
countervailing values and trends. Relying on experience under ADA-with its
commitment to full participation, to the values of consumer-directed
service-planning and individual choice, to the value placed on maintaining the
family, to intensifying concerns for cost effectiveness-it is clear that these
countervailing factors combine to necessitate a fundamental reassessment of
Medicaid's role in long-term care as part of the thorough review of the entire
Medicaid program that is likely to become a part of deliberations in the next
Congress.
Regarding the equitable availability of home- and
community-based services under Medicaid, the argument is not that institutional
care should be denied to those who need and want it. Nor should the range of
intermediate residential options, including various assisted living and group
residential models that define the spectrum between one's own home and nursing
home living, be excluded. All that is being argued is that people should have a
fair and free choice, and that resources to support all choices should be
available to support individual and family decision making.
The Supreme Court's now-famous 1999 Olmstead v. LC decision is the most powerful legal support for the
current rebalancing effort.78
It is not disputed in the wake of Olmstead
that needless segregation of persons with disabilities in institutional
settings violates ADA. However, because the Olmstead
decision is not self-executing, the articulation and application of the
community-based living realization have proved slower and more difficult than
many advocates and supporters had hoped.
To facilitate the process, the Federal Government has adopted a
variety of means to encourage and oblige states to enter into formal Olmstead-implementation planning
processes. In this regard, NCD particularly commends the Administration's
decision to include in its federal budget funds for incentive and demonstration
programs designed to assist and reward states in their Olmstead implementation efforts.79
NCD also commends the Administration for sponsoring important research into a
number of key related issues. While these measures, and the actions of states
to date, will surely yield impressive, replicable, and persuasive models and
findings that can become the norm and point the way to best practices over
time, the harsh truth may be that we do not have the luxury of time to await
percolation of the experiments and examples through the relevant official and
consumer communities. More forceful and focused federal responses are urgently
needed.
Research suggests that nursing home reimbursement has been far
more resistant to, if not immune from, state budget cuts than home- and
community-based services have been over the past five years (in other words,
since Olmstead).80 In
light of the discussion of institutional bias in the previous chapter on
health, this is not surprising. What findings such as these clearly indicate is
this: In view of the variety of legal and economic forces operating to slow Olmstead implementation, strong and
concerted measures are required at the national level to overcome the barriers
and the inertia that perpetuate the design and habits of any long-established
program.
Key Pending
Legislation
Two legislative proposals currently making their way through
Congress represent a readily available point for jump-starting this reform
effort. They are Money Follows the Person (MFP),81
already discussed in the previous chapter, and the Medicaid Community Attendant
Services and Supports Act (MiCASSA).82
Taken together, these two laws would go a long way toward making
Medicaid more equitable. MFP would give Medicaid beneficiaries greater choice
in how funds are allocated among existing covered services. MiCASSA would
expand the home- and community-based services from which beneficiaries could
choose and, hence, the services their money could follow.
Accordingly, NCD recommends that Congress adopt MFP legislation
and MiCASSA without delay, as keystones in the new arch of long-term services
policy in this country.
Actions
Necessary
Community integration has been a hallmark of this
Administration's commitment since its earliest days in office. A number of
innovative and exciting NFI initiatives in choice and in the design of
services, involving various federal agencies, continue to reflect this profound
commitment.83
Yet, consistent with NFI, there is still much the Federal Government can and should
do to increase Olmstead implementation
and achieve NFI's outcome goals for community integration and living for all
Americans.
First and foremost, measurable outcome goals and time frames
must be established for state Olmstead
planning and implementation efforts. Indeed, it may not be unreasonable to
suggest that something akin to the adequate yearly progress (AYP) approach used
in the education arena is applied here to require states to demonstrate
measurable progress year after year toward the achievement of Olmstead NFI goals. For this reason, NCD
recommends that CMS require timely planning for and documented achievement of Olmstead goals as a condition for states
to receive federal funds under the Medicaid program. It would be one thing if
the incentive funding currently available were enough to make a real difference
in most or all states. In the absence of such funding, the pairing of
incentives with the prospect of significant sanctions for noncompliance will
bring about the requisite level of effort and change within a reasonable period
of time.
Second, action is necessary to ensure that the CMS time frames,
planning requirements, and outcome measures and the implementation strategies
states develop for themselves will be achievable and responsive to the needs
and concerns of all Medicaid constituencies. In this regard, NCD recommends
that CMS initiate a formal and intensive information-gathering process. This
should be preparatory to rulemaking and designed to result in the issuance,
within 18 months, of proposed regulations governing the new Olmstead priority. Furthermore, NCD
recommends that if CMS believes that it is not authorized by the existing
Medicaid statute, ADA, or the Supreme Court's Olmstead decision to take these actions, HHS should immediately
seek from Congress the necessary legislative authorization.
To expedite the articulation and achievement of Olmstead NFI goals, NCD believes there
are a number of powerful incentive measures that the Federal Government could
take that would contribute to the speed and effectiveness of Olmstead implementation by states. In FY
2004, states received a three-percent increase in the federal matching
percentage under the Medicaid program.84
It is widely believed that the federal budget deficit plus an improving state
revenue picture will preclude the extension of this one-time bonus.
Nonetheless, the effect of selective extension of an enriched match formula
could be disproportionate, if targeted to the key planning and implementation
efforts critical to the success of Olmstead.
For this reason, NCD recommends to Congress that the
three-percent increase in federal matching percentage be retained, but
specifically for application to those reimbursable Medicaid activities and
services that are related to the development and provision of home- and
community-based services. To that end, CMS should develop guidelines to clarify
exactly when and for what expenditures such heightened reimbursements will be
available, so that, assuming Congress adopts this recommendation, states will
be in no doubt regarding their options.
A third necessary action pertains to a measure Congress should
take to ease the short-term problem related to helping current family
caregivers cope with their burdens. Specifically in this regard, NCD recommends
enactment of the Lifespan Respite Care Act.85
Along with this legislation, Congress should authorize the Secretary of HHS, in
conjunction with the Secretary of Labor, to conduct a study of the costs to the
economy, in terms of education, employment, income forgone, and transfer
payments, due to the demands of family caregiving on parents, spouses,
siblings, and children.
Insurance
Much attention in our nation is directed toward the number of
Americans without health insurance. Surprisingly little attention, by contrast,
seems to be directed toward the nature and availability of long-term care
insurance. For example, especially lacking is attention to long-term care
insurance that provides meaningful coverage for home- and community-based services
and supports, as distinguished from or in addition to, nursing home care.
Even if Medicaid buy-in, MiCASSA, and MFP are all enacted, it is
highly unlikely that Medicaid will ever be able to cover, or should ever cover,
anything approaching the majority of people who will need help in paying for
long-term services and care. Without significant partnership and involvement of
the nation's insurance industry, no solution to this problem is possible. Yet
these matters need to be addressed, whether through expansion of the scope of
Medicare, redefinition of existing lines of disability insurance, or the
creation of entirely new insurance options and products. NCD recommends that
Congress hold hearings to fully explore the potential role of the insurance industry,
the tax code, the employer community, and existing programs in fashioning
experimental models of coverage that can be tested and studied.
In order that Congress has the benefit of the most accurate and
up-to-date information, NCD recommends that these hearings be scheduled to
coincide with the completion and publication of the study of long-term care
financing being undertaken by NCD this year. Pending the findings of this
important study, NCD will withhold any recommendations on the scope or sources
of funding and organizational and statutory change that may be necessary to
meet the foreseeable demand for long-term services and supports, home as well
as institutional, in this country. However, one point is critical to keep in
mind, even as the results of the study are awaited. The economic assumptions
underlying current federal policies relevant to long-term care have never been
subjected to rigorous evidentiary testing.
Cost
Effectiveness and Accountability
It is conventionally assumed that incorporation of home- and
community-based services into the federal budget on a level equal to that of
nursing home or other institutional services would be exceedingly expensive.
Needless to say, if Congress believed community-based services would be
significantly cheaper, it would probably have adopted the policy of directing
of funds in that area by now. However widespread, the belief that major policy
change would entail substantial additional cost remains unproved. It is strange
indeed that in this era of evidence-based policymaking, when even the smallest
programs are obliged to demonstrate their effectiveness and value, the
assumption on which turns the expenditure of literally billions of dollars in
public funding has never, to our knowledge, been subjected to rigorous testing
or disciplined analysis.
Evidence submitted to the courts in a variety of
deinstitutionalization cases, as well as the results of other studies,
consistently indicate that on a per-capita basis, in-home and community
supports are generally less expensive than the costs of nursing home care.86 How
then do we entertain what may be contradictory beliefs?
Part of the answer may lie in numbers. Largely unexamined, it
may seem superficially obvious to policymakers that if home care services and
supports were paid for on the same basis as institutional care, any per-capita
savings that might be accrued would be offset by the potentially large number
of people who would be eligible for and who would want such services. Moreover,
if Medicaid undertook greater responsibility for these services, to what degree
would the unpaid attendant-services labor of family caregivers need to be made
reimbursable?
As related to people with significant disabilities, above and
below the age of 65, at risk of nursing home placement, little information is
available on these questions. In addition, thus far little is known about how
much the demand for nursing homes for these same populations could be reduced
through the provision of comprehensive community-based alternatives, enhanced
screening of nursing home admissions, regular periodic review of placements,
and nursing home preventive services delivered in the community and in the
home. A broad understanding is lacking with regard to the meaning of community
supports, including integrated housing and transportation policy, and how
support would affect the balance of choices between nursing home and personal
home or the relative costs, per capita and in the aggregate, of the two
systems.
It is expected that NCD's long-term care financing study will
shed light on some of these questions and will point the way to the further
research needed to answer other questions. NCD looks forward to the discussion
that will result from publication of this long-term care financing study and to
contributing to the innovative strategies and new solutions that will be
fashioned in the coming months and years.
Conclusion
A long-term care crisis has stolen upon us, almost unnoticed and
unannounced. This chapter attempted to soberly suggest the severity of the
problem. It has identified possible strategies for analyzing and responding to
the growing need for long-term care and has identified assumptions and
institutions that can play an instrumental role in responding to this need.
Recommendations
Summary
Recommendations
to Congress
Recommendation 5.1-NCD
recommends that Congress adopt Money Follows the Person (MFP) and the Medicaid
Community Attendant Services and Supports Act (MiCASSA) without delay, as
keystones in the new arch of long-term services policy in this country.
Recommendation 5.2-NCD
recommends to Congress that the three-percent increase in federal matching be
retained, but specifically for application to those reimbursable Medicaid
activities and services that are related to the development and provision of
home- and community-based services.
Recommendation 5.3-NCD
recommends enactment of the Lifespan Respite Care Act.
Recommendation 5.4-NCD
recommends that Congress hold hearings to fully explore the potential role of
the insurance industry, the tax code, the employer community, and existing
programs in fashioning experimental models of long-term care coverage that can
be tested and studied.
Recommendations
to CMS
Recommendation 5.5-NCD
recommends that CMS require timely planning for and documented achievement of Olmstead goals as a condition for states
to receive federal funds under the Medicaid program.
Recommendation 5.6-NCD
recommends that CMS initiate a formal and intensive information-gathering
process, preparatory to rulemaking, designed to result in the issuance, within
18 months, of proposed regulations governing the new Olmstead priority.
Recommendation 5.7-NCD
recommends that if CMS believes that neither the existing Medicaid statute,
ADA, nor the Supreme Court's Olmstead
decision authorizes it to take these actions, HHS should immediately seek from
Congress the necessary legislative authorization.
Chapter Six Youth
Introduction
Separating out youth issues is always difficult. Everything that
we do affects our children. In recent years people have seemed to demonstrate
awareness of how tax policy has been affected by concerns for children-for
example, in the increase in the child tax credit-yet no one would initially
think of tax policy as a subject for inclusion in a chapter about the young.
Elsewhere, this report discusses a number of issues of concern
to children and youth. For example, the discussion of education in Chapter
Three, most notably of transition services, is about youth; and a number of the
issues raised in Chapter Seven on employment will also have particular
importance for youth. Nevertheless, this chapter attempts to identify a number
of issues and themes that uniquely or disproportionately affect youth that are
not covered under education, health, employment, or elsewhere in this report.
The first section concerns the treatment of youth with
disabilities in the juvenile justice system. The next two sections address
leadership and empowerment programs for youth and examine alternative
definitions of youth as they relate to funding sources for youth development
programs.
Juvenile
Justice
Recognizing the Problem
In May 2003 NCD issued its paper, Addressing the Needs of Youth with Disabilities in the Juvenile Justice System: The Status of
Evidence-Based Research.87
Paralleling in many important ways the findings of major reports by the
Government Accountability Office (GAO)88
and the President's New Freedom Commission on Mental Health,89
NCD's study points up issues that cannot be overlooked or minimized, if we value
the human potential of our young and believe in fairness.
The report findings will not be reiterated here.
However, certain key points are worth mentioning:
There is little dispute that persons with disabilities are
significantly overrepresented in the juvenile justice system, particularly as
inmates or residents of juvenile corrections facilities.
Existing delinquency prevention and juvenile justice programs
do not, by and large, take cognizance of the existence, characteristics, or
size of this subpopulation or of the issues involved in working effectively
with it.
Limited overall knowledge of how to prevent delinquency and
redeem youth who are in the juvenile justice system indicates that the issues
are even less explored or understood in relation to youth with disabilities.
Coordination
An all-too-familiar theme runs through the reports mentioned
above. It is the lack of coordination. Although the NCD report identified an
existing interagency council on delinquency and a presidential task force, and
saw both as potentially useful coordinating bodies, whatever latent potential
they possess has yet to be realized for the most part. For an effective
response to be fashioned nationally to the issues facing youth with
disabilities in the juvenile justice system, education, law enforcement, civil
rights, medical, and other program areas need to be involved and effectively
coordinated.
Outcomes
As important as aligning the players, and potentially more
difficult, will be the clarification of assumptions and objectives. At a time
in our nation when the juvenile justice system is generally tending to
emphasize punishment and personal accountability over rehabilitation,
causation, and education, the danger must be candidly confronted that efforts
to address the specific needs and situations of youth with disabilities can all
too easily be misinterpreted as leniency or excuse-making. Nothing could be
further from the truth.
What concerns NCD here, pending the conduct of further research,
is that whatever policy initiatives come to characterize our juvenile justice
system and guide its course in the coming years, they be developed and
implemented with attention to some key variables and with a clear sense of who
are the objects of system interventions. For instance, pretrial diversion
programs (that is, programs that give many youth and adults charged with minor
or first offenses the opportunity to avoid conviction or imprisonment by
participating successfully in certain programs) that offer educational options
cannot be fairly or effectively administered unless their design incorporates
certain elements. For example, the programs must recognize that youth with
reading difficulties or other learning disabilities need appropriate
instructional techniques, resources, supports, and accommodations to produce
highly positive results.
Similarly, aggressive behavior can, in many instances, be the
result of emotional or behavioral illness. With no wish to excuse such
behavior, only serious efforts to find and treat its causes can hold out
meaningful, cost-effective hope of preventing its recurrence. In this light,
NCD recommends that DOJ appoint a high-level national commission to
authoritatively and accountably review all available evidence on juvenile
justice systems and disability interconnections. We need to be sure that
assessment and screening procedures for youth coming into the system are
adequate to identify youth with disabilities; that court and agency procedures
are fully accessible and afford youth with disabilities the fullest opportunity
to participate in and understand the legal process and the related psychosocial
assessments in which they are involved; that juvenile detention and treatment
facilities have the knowledge and resources necessary to ensure that youth with
disabilities will be able to participate in and benefit from the training that
is made generally available to other youth, and have the knowledge and
resources to identify and obtain specialized resources and training that may be
necessary for youth with disabilities; and that we ensure that postrelease or
alternative-to-incarceration programs and supports are serving the needs of
youth with disabilities as well as they are intended to serve other
participants.
In order to ensure continuity in the way we deal with these
issues, NCD recommends that the findings of the above-recommended national
commission be formally reviewed, adopted, rejected, or otherwise responded to
by a federal official with authority to speak for the Administration, and that those
findings that are accepted be implemented under conditions that include
accountability time frames against which success or failure can be measured.
For the sake of accountability, the national commission should
include in its deliberations as detailed an assessment as available data will
permit of the degree to which deficiencies in the juvenile justice system's
recognition and treatment of youth with disabilities may be contributing to
increases in the proportion of individuals with disabilities among the adult
offender and prison population. Additionally, the national commission should
explore the potential for timely and effective intervention with youthful
offenders with disabilities to reduce the overall long-term costs to our nation
of youth and adult corrections. Finally, the national commission should address
the role of health insurance in addressing and combating behavioral health
issues that may lie at the root of some antisocial or delinquent conduct.
We may decide as a society that the offense-not its cause,
prevention, or treatment-is the key or sole relevant event in determining our
handling of delinquent youth and lawbreaking adults. But if that is to be our
decision, it should be one based on full knowledge, for only then can such a
decision be adequately justified. Above all, whatever our objectives, common
sense and accountability require that we take all possible steps to determine
whether we are succeeding.
Youth
Leadership Development and Empowerment
Too often, programs that bear heavily on the lives of young
people are devised by people with expertise and commitment, but exclude direct
input from young people. To know what youth are thinking, or how they are
reinterpreting, articulating, and answering the fundamental questions for their
generation, direct input is essential.
The Youth
Advisory Committee
As discussed elsewhere in this report, youth not only have the
most vital stake in the programs that centrally affect them, but they may have
unique and highly valuable contributions to make in the formulation of policy
in education, career development, health promotion, and other areas. Beyond the
specifics arising out of their experience, young people can also learn valuable
lessons of leadership, civic responsibility, and democracy through
participation in forums and activities that give them an opportunity to express
their views on matters of concern and to be heard by others with an interest in
them, their opinions, or their programs.
In support of all of these goals, NCD is proud of the work done
by its Youth Advisory Committee (YAC).90
Rather than reviewing the contents of our recent report here, we commend it to
the attention of readers. Also, NCD recommends that the Administration instruct
each federal agency that deals in any particular way with youth with
disabilities or their families to develop means by which the opinions,
experiences, and recommendations of this constituency or target population can
be obtained and taken into account in future program planning. Given the wide range
of mechanisms available for doing this, NCD does not suggest any particular
approach or structure. The approach taken by NCD with the YAC has been noted as
an effective approach, but there will be many other appropriate strategies as
well. The point is that agencies should be encouraged to experiment with these
strategies, to make use of the input and feedback, and to share with one
another and with the public information about what works.
In the area of disability, such an approach may be particularly
important, because even agencies with considerable expertise in various
subject-matter areas may have no means for anticipating or assessing the impact
of their decisions upon youth with disabilities.
National Youth
Leadership Network
In its annual progress reports over the past three years, NCD
has discussed the work of the National Youth Leadership Network (NYLN).91
Having done so, we will not repeat that discussion here. We do, however, feel
compelled to reiterate a concern that has been growing ever more urgent. NCD
recommends that the Administration make clear at the earliest possible moment
its intentions with respect to its opinion and use of the work of the NYLN to
date, and its intentions regarding continued federal support for the work of
this project. If federal support is, for whatever reason, to be withdrawn, then
time will still exist for consideration of structural and financial
alternatives.
Definitions
Somewhere between childhood and adulthood we find youth. No
overall legal definition of the term has ever been needed or desirable. Each
federal program that specifically addresses youth adopts the definition of this
population that best suits the purpose of the law that authorizes each program.
In that connection it is interesting to note a recent decision
by the Social Security Administration (SSA). In October 2003 SSA announced its
Youth Transition Process Demonstrations (YTPD).92
While the YTPD is interesting in several respects, its main importance here
lies in the fact that it defined eligible youth as being between the ages of 10
and 25.
Though important in itself as a basis for broadening the
jurisdiction and the sweep of important programs operating under various
agencies' auspices, SSA's definition is important for another, very practical
reason as well. It creates funding opportunities for a variety of
not-for-profit and faith-based organizations that may seek to work with young
people but may find conventional definitions of youth too narrow from the
standpoint of the early intervention strategies or other modalities they seek
to utilize. Such entities and those who fund them should be alerted by this
action on SSA's part to the fact that considerably more discretion than they
had supposed may exist for defining the youthful population to be served. For
this reason, NCD recommends that OMB develop and disseminate a brief statement,
to be included on all relevant federal transmittals, grant applications, and
contract documents and notices, reminding partners of the importance of
establishing clearly under each program and with each agency with which they
may work the parameters of "youth" under applicable law. Agencies should also
be encouraged and authorized to approach the definition of youth in as flexible
a manner as possible, consistent with the goals of the governing statute and
the purposes of the program in question.
Conclusion
This chapter has addressed issues of concern to youth that do
not readily lend themselves to discussion under broad areas such as health,
education, or employment. We have suggested areas in which, while inseparable
from those of the population as a whole, the issues affecting, and the
resources available for, youth with disabilities may differ from those
applicable to the general population.
Recommendations Summary
Recommendations
to the Administration
Recommendation 6.1-NCD
recommends that the findings of the recommendations of a national commission
appointed by the Administration be implemented. The findings must be formally
reviewed, adopted, rejected, or otherwise responded to by a federal official
with authority to speak for the Administration. Findings that are adopted must
be implemented under conditions that include accountability time frames against
which success or failure can be measured.
Recommendation 6.2-NCD
recommends that the Administration instruct each federal agency that deals in
any way with youth with disabilities or their families to develop means by
which the opinions, experiences, and recommendations of this constituency or
target population can be obtained and taken into account in future program
planning.
Recommendation 6.3-NCD
recommends that the Administration make clear at the earliest possible moment
its intentions with respect to its opinion and use of the work of the National
Youth Leadership Network to date, and its intentions regarding continued
federal support for the work of this project.
Recommendation
to DOJ
Recommendation 6.4-NCD
recommends that DOJ appoint a high-level national commission to authoritatively
and accountably review all available evidence on juvenile justice systems and
disability interconnections.
Recommendation
to OMB
Recommendation 6.5-NCD
recommends that OMB develop and disseminate a brief statement, to be included
on all relevant federal transmittals, grant applications, and contract
documents and notices, reminding partners of the importance of establishing
clearly under each program and with each agency with which they may work the
parameters of "youth" under applicable law.
Chapter Seven Employment and the Workforce Development
System
Introduction
This chapter focuses on the major entities, programs, and issues
involved in the effort to increase the number of people with disabilities who
work and the quality, stability, and productivity of the jobs they hold. It
deals with this broad and complex subject in two ways. First, it addresses
specific employment and career-development programs that are of primary
importance to job seekers with disabilities. Second, it analyzes some of the
key linkages among these programs, with a view to developing mechanisms for
enhancing their coordination. This chapter also seeks to stimulate discussion
about how to create and apply critical concepts of accountability on a
systemwide basis to public sector efforts and public-private partnerships in
the job training and employment development and support arenas.
The first section considers the Workforce Investment Act,
including the nation's One-Stop Centers. The next section examines the
separately funded and administered vocational rehabilitation system for
individuals with disabilities. The final section reviews a number of other
resources and issues of relevance to the employment prospects of Americans with
disabilities, including loan programs, tax incentives, and programs designed to
reduce work disincentives in the Social Security system.
We undertake this discussion against a particularly sobering
backdrop. For NCD, no less than for the Administration as a whole, employment
is understood to be one of the most crucial issues facing Americans with
disabilities. Indeed, within days of his inauguration, President Bush laid
special stress on this concern in announcing his New Freedom Initiative (NFI).93 For
this reason, the apparent resistance of the problem to many of the new and
creative approaches adopted under NFI must give grounds for reflection and
concern.
Experts and advocates from all parties and perspectives
recognize the extent and severity of the problem. A number of emerging trends
suggest that the problem is about to take on a new urgency and new forms. While
discussion of these trends is outside the scope of this report, their existence
and implications for employment of Americans with disabilities cannot be
ignored in the assessment of current measures or the development of strategies
for the future. These trends include the following:
A changing fit between labor market demand and worker training
and skill sets (which bears on assessment and training options offered to those
job seekers with disabilities who do not already have established career
patterns or goals, or who need retraining if their skills are to be brought
into line with employer needs);
The aging of the workforce (which foretells a growing
proportion of people with disabilities among the nation's workforce, and which
raises new issues surrounding the kinds of interventions and resources that
will prove effective in enabling people with adult-onset disabilities to remain
productive for as long as possible); and
The outsourcing (including the off-shoring) of jobs.
At the same time, indications are that the traditional safety
net, which cushioned some of the consequences of joblessness for many persons
with disabilities, may be coming under unprecedented pressure as an aging
nation seeks ways to deal with growing long-term budgetary challenges. As
attention turns to curtailing the growth and costs of Medicaid and to the
solvency and long-term viability of all Social Security trust funds and funding
streams, the assumptions for various income-support programs, including the
Social Security Disability Insurance (SSDI) and Social Security Insurance (SSI)programs that play a major role as
sources of income support in the lives of many people with disabilities, must
inevitably be subject to careful reassessment.
In an era of heightened concern for program outcomes, no program
or approach can be exempt from accountability for its results. We discuss this
issue further in the third section of this chapter. For the moment, it is
enough to say that what most concerns NCD, above and beyond the efficacy of
numerous worthy but isolated employment and training initiatives, is how
evolving principles of accountability can be applied in ways that will enhance
the ability of the workforce development system, in its mainstream and
specialized components, to respond most effectively to the employment needs and
aspirations of Americans with disabilities.
Few challenges have proved as resistant to our efforts as that
of facilitating the entry of Americans with disabilities into productive
employment on a par with that expected by other Americans. Indeed, perhaps in
no area of civic, economic, or personal life has the experience of people with
disabilities so radically diverged from that of the population as a whole.
Consider what would be the effect-psychological, economic, and political-if
more than 60 percent of adults of working age were unemployed. Rates of
unemployment estimated at half that much during the Great Depression produced
consequences that have continued to guide our public policy and sear our
memories for three generations. Yet precisely these rates of unemployment
remain the lot of Americans with disabilities, largely resistant thus far to
all efforts at reform.
NCD commends the Administration for its focus on reducing these
tragic disparities. With continued innovation, emphasis on applying new
concepts of coordination and accountability to all the interconnected
components of the employment development system, and attention to matters such
as those discussed in this chapter, NCD hopes that the ongoing commitment by so
many in this area can begin to yield meaningful statistical results and
meaningful outcomes in the lives of Americans with disabilities, as well as
yield attendant benefits to society, taxpayers, and the economy.
The Workforce
Investment Act
The Workforce Investment Act of 1998 (WIA)94 was
scheduled for reauthorization in 2003. In anticipation of that reauthorization,
NCD's annual progress report issued in July 2003 included detailed
recommendations and analysis regarding the Act.95
WIA is important to Americans with disabilities for two reasons.
First, it sets out the parameters of and requirements for the One-Stop Centers
system, which forms the core of federal job placement services for all
Americans; and second, it encompasses the federal-state vocational
rehabilitation (VR) system, which provides specialized vocational services to
individuals with disabilities.
WIA was not reauthorized as scheduled, but during the period
covered by this report, it was expected to be reauthorized during the second
session of the 108th Congress during 2004. Because a version of the legislation
passed the House in 200396
and a Senate bill was well along97
at the writing of this report, NCD recognizes that the opportunity for
additional input to the legislation at this juncture may be limited. The
majority of the discussion here therefore pertains to features of the bill that
are likely to emerge as part of the final legislation and pose issues that can
and should be addressed by the administrative agencies vested with
responsibility for implementing the law.
Antidiscrimination
and Accessibility
Section 188 of the existing WIA98
contains important antidiscrimination requirements applicable to the One-Stop
Centers and other entities operating under the Act. NCD commends the Department
of Labor (DOL) for its issuance in 2003 of a Section 188 checklist designed to
assist program operators in identifying their antidiscrimination obligations,
assessing their performance, and identifying resources that can be of
assistance.99
But valuable as this checklist unquestionably is, we are concerned about
whether this form of technical assistance is sufficient to ensure that One-Stop
Centers are able to provide the degree of physical, information-technology, and
programmatic accessibility required by the law and by the practical realities
of full participation for people with disabilities. For example, if One-Stop
Centers lack neither the resources nor the communications technology to implement
accessibility of their facilities, neither the checklist nor associated
technical assistance will solve the problem.
In order to determine whether One-Stop Centers are complying
with the law and, as important, the reasons they do not succeed in complying,
DOL needs to be vigorous in its monitoring and enforcement of the law. This is
one key means for ensuring full participation in the workforce and employment
development system by all job seekers, irrespective of disability. Various
means of maintaining strengthened enforcement are therefore recommended for
DOL's consideration. NCD recommends that DOL establish and publicize a
complaint procedure for use by individuals who have been denied access,
incorporate accessibility guarantees in requirements for state workforce
development plans, and insist on inclusion of representatives of people with
disabilities (or at least of state VR agencies) on state and local workforce
investment boards (WIBs). To achieve these ends, NCD recommends that DOL,
acting through its Office of Disability Employment Policy (ODEP) or through its
Office of Inspector-General (OIG), jointly develop with DOJ a plan for vigorous
and proactive enforcement of the antidiscrimination and accessibility
requirements of the law bearing on the ability and willingness of One-Stop
Centers to serve customers with disabilities.
Outcome and
Performance Measures
NCD supports ongoing efforts to develop outcome measures and
performance indicators through which the efficacy and impact of the One-Stop
Centers and WIA as a whole can be assessed. But we remain concerned that simple
formulas such as those that place a premium on per capita cost or even on
per-employment-outcome cost could have the unintended and counterproductive
effect of discouraging One-Stop Centers from working with people who need
extensive or individualized services, including persons with disabilities.
If program evaluation formulas are to be used that make no
allowance for the potentially higher-than-average costs that may be incurred in
working with individuals with disabilities, then at the very least NCD urges
DOL, led by ODEP, to adopt a formula that takes equal account (through use of
actuarial, survey, and other data) of the savings to the Treasury that result
from successful job placement of individuals with disabilities. In evaluating
the cost effectiveness of One-Stop Centers, it would be both unnecessary and
unfair to take into account the add-on costs of working with job applicants
with disabilities while failing to acknowledge the potentially
more-than-offsetting savings to the public resulting from the successful
employment of such applicants. Accordingly, NCD recommends that DOL develop
outcome measures that take due account of all the relevant variables involved
in working with job seekers with disabilities, including not only the potential
costs of working with this population within a mainstream setting, but also the
benefits to the taxpayers of commitment and success in such work.
WIA recognizes the obligation of the One-Stop Centers to work
with hard-to-serve individuals who may need specialized or individualized
services. In fulfillment of that recognition, NCD commends DOL for the
demonstration customized employment grants it has made. Preliminary figures
indicating achievement of gainful employment by 595 of the first 1,292 persons
served suggest that such programs have a role to play within even a system as
large as that created under WIA.
Aging of the
Workforce
Our nation's workforce is aging, perhaps even faster than the
population as a whole is. In addition to demographics, dramatic losses in
middle class wealth stemming from stock market declines in the 2000-2002
period, coupled with the raising of the retirement age for receipt of full
Social Security retirement benefits, along with likely declines in the
provision of employer-sponsored retiree health insurance, are all likely to
combine to increase the number of older persons remaining in our workforce.
Any increase in the number of older workers portends a substantial
increase in the proportion of the workforce with disabilities, given the strong
correlation between disability and aging.100
If the economic stability of these workers and their families is to be
preserved, and if potentially large and unnecessary increases in the costs of
public and private disability pensions and other services due to early
retirement are to be avoided, the Federal Government needs to begin fashioning
a strategy in concert with industry to ensure that the productive work lives of
these workers are not cut short. Indeed, the very stability of the retirement
system may depend in part on our ability to maintain older workers, with and
without disabilities, in employment for as long as they are willing and able to
perform their jobs.
Clearly, the job resumption or retention issues surrounding
older workers with late-onset disabilities-many with established careers and
premium skills-differ from the issues faced by younger persons with
disabilities seeking to enter the workforce. Urgent research is needed on the
role and capabilities of the VR system, the disability insurance system, the
range of federally supported technical assistance and informational programs,
and a variety of other resources and strategies as tools for facilitating retention
of productive employment by older workers who incur disabilities but who need
not leave work prematurely on that account. To this end, NCD recommends that
the Administration establish a blue-ribbon task force to study this topic on an
expedited basis and to make recommendations to Congress on measures that could
be taken to strengthen the capacity of the economy to retain and benefit from
the services and experience of older workers with adult-onset disabilities.
The Navigator Program
The workforce development system established under WIA, while
centrally focusing on the One-Stop Centers as a single entry point for access
to information and services, ultimately depends for its effectiveness on the
coordination, cooperation, and capacity of a variety of community partners,
including "mandatory partners" under the law.101 The process of coordination among
both mandatory and voluntary partners is never an easy one, even when they
share the same objectives and the same knowledge base.
In the case of individuals with disabilities seeking services
from mainstream sources such as the One-Stop Centers system, one key problem
relates to the strategies available for enabling One-Stop Centers' staff to
be apprised as fully as possible of the range of specialized resources and
services that can be brought to bear on behalf of customers with disabilities.
A closely related problem involves how different elements in the workforce
development system, including DOL, SSA's recently established area work incentive
coordinators (AWICs), and SSA's work incentive cadres, can work together most
effectively. In the efforts to improve this coordination and maximize the sharing
of information and resources, NCD congratulates DOL and SSA on their establishment,
on a pilot basis, of the Disability Navigator Program,102 which
should go a long way to ensuring that the needed expertise will be available
and accessible to One-Stop Centers staff and service users.
The Navigator Program places in One-Stop Centers staff members
who are knowledgeable about the range of specialized services available to
assist job seekers with disabilities. With the Navigator Program, along with
other strategies such as co-location of VR and One-Stop Centers facilities,
NCD is hopeful that seamlessness will be attained to the highest possible degree.
Yet more may be necessary to ensure that One-Stop Centers do all they can and
should in providing effective services to all people who seek their assistance.
Outreach by
One-Stop Centers
Earlier in this chapter we discussed the critical importance of
One-Stop Centers accessibility, in terms of access to facilities, to information
technology used in the job-training and job-search processes, and to all aspects
of the One-Stop Centers program. In ensuring this needed level of accessibility,
one key step we believe needs to be taken involves the community partners-employers,
training entities, referral sources, schools, employer associations, and others-with
which One-Stop Centers and WIBs work and with which they have referral and
planning relationships. Without imposing burdens on them that risk inhibiting
their willingness or ability to cooperate in the creation of a coherent labor
market system, means should be found by which One-Stop Centers can work to
ensure that these entities, too, are as responsive and welcoming as possible
to individuals with disabilities.
As important as it is for One-Stop Centers to be accessible, that
accessibility may in the end do little good if the employers or training programs
to which the One-Stop Centers refer job seekers are not. While One-Stop Centers
lack legal authority or practical leverage to enforce consistently high accessibility
standards on the variety of entities in the communities with which they deal,
a number of ways and a variety of situations may exist in which One-Stop Centers
can tip the balance in favor of reasonable accommodation, accessibility, and
success. As a first step, NCD recommends that DOL survey One-Stop Centers and
people with disabilities who have received referral services through them to
determine the measures the One-Stop Centers have used to monitor the treatment
that people with disabilities receive at the hands of community partners, and
the means the One-Stop Centers have developed for sharing expertise and resources
with such providers in ways aimed at ensuring accessibility.
The Vocational
Rehabilitation System
As part of WIA, NCD expected that the Rehabilitation Act, governing
the VR system for persons with disabilities, would be reauthorized before the
publication of this annual progress report.103 Accordingly,
as with WIA as a whole, attention here is directed primarily to issues and
provisions that are not likely to be modified by the new law, as indicated
by the versions currently making their way through Congress.
Order of Selection
Well over half the states are currently operating their VR systems
under what are called orders of selection.104 An
order of selection is imposed when the state agency lacks funds to meet all
the legitimate demands of eligible individuals for service. The order of selection
declaration authorizes the state to limit and prioritize services to those
persons with the most significant disabilities.
In rationing VR services under an order of selection, states are
required to use criteria that will ensure that distinctions between people
who will and who will not receive services are made solely on the basis of
severity or significance of disability.105 While critical attention has tended
to focus on the fairness of orders of selection and on the appropriateness
of the selection criteria used by states to determine which persons have the
most significant disabilities, less attention appears to have been paid to
other potentially serious consequences of the use of orders of selection. Before
these service-rationing procedures become so commonplace as to be more or less
taken for granted, NCD believes that some of these other consequences should
be explored and questioned.
The widespread and increasing use of orders of selection by many
states for all or parts of consecutive years suggests a serious disjuncture
between resources on the one hand and statutory obligations, as well as consumer
need and demand, on the other. If resources are so chronically inadequate as
to render it impossible year after year for many states to meet their full
obligations under the law, then a very serious problem exists. Beyond urging
due attention to the matter, NCD believes that suggesting specific solutions
would be premature at this juncture. In order to better understand the problem
and identify the most appropriate solutions, NCD recommends that Congress fully
explore the consequences arising from the fact that the eligibility standards
the law prescribes and the services it authorizes may not, in fact, be making
their way through the pipeline to all intended end-users and service providers
in communities around the country. If the VR system is not to reach all the
people nominally eligible for its services, or is to provide a narrower range
of services than officially prescribed, our nation ought to have a full and
open dialogue about whether the scope of VR should be curtailed, whether new
avenues for the delivery of necessary services need to be developed, or whether
the resources available to the system should be increased and, if so, how.
In its actual effects even on people who make the cut and continue
to receive the services they need, order of selection poses significant risks.
The VR system functions as a primary service provider of course, and also as
a key link in a larger service system, through a web of partnerships and reciprocal
relationships, including mandatory partnerships with One-Stop Centers and WIBs,
relationships with Ticket to Work and Work Incentives Improvement Act (TWWIIA)
employment networks, connections with school systems through joint responsibility
for transitional services, relationships with SSA, and a host of other interactions
through which services and resources are developed and provided. Under the
law applicable to order of selection, people referred by or in need of referral
to any of these partners, and people receiving joint services (such as AT from
the VR agency and placement services from another source) are accorded no special
preference or priority. Some of the people affected by these referral relationships,
joint service situations, or memoranda of understanding may well qualify for
continued services under order of selection criteria; and some partners such
as the TWWIIA program may have developed certain prioritized rights to VR services
on behalf of ticket holders, but others may not. The results can be confusing
and devastating.
So far as NCD can determine, the impact of order of selection
on the ability of a variety of mainstream partners to adequately and fully
serve the specialized needs of job seekers with disabilities has never been
assessed. Nor, to our knowledge, has the impact been assessed of order of selection
on the level of trust and confidence mainstream entities have in the reliability
of VR as a partner. For a seamless, coordinated system to develop and take
root, these dimensions of the subject need to be explored and analyzed.
As an indispensable adjunct to the building of effective collaboration,
RSA must identify all the consequences of chronic and intermittent reliance
on orders of selection. Accordingly, NCD recommends that RSA establish an investigative
procedure to determine, through outreach to a variety of VR partners, the extent
to which the aspirations and obligations of these partners to work collaboratively
and smoothly with VR are adversely affected or unduly complicated by recourse
to orders of selection. Persons with disabilities who have experienced breakdowns
or time-sensitive discontinuities in services should be included in this research
so the human dimensions of the problem will not be overlooked in favor of mere
statistical presentations alone. It is one thing to find that X percent of
partners were affected to this or that degree. It is quite another to say that
actual people were deprived of services under circumstances that contributed
to their failure to obtain or retain employment, or that tended to undermine
the effect and value of other services for which the public has paid.
Technical Assistance
Beyond the strengths and weaknesses of state VR agencies as direct-service
providers, as purchasers of services, or as referral sources, one of the important
and emerging roles for these agencies is that of providing technical assistance
to partners in the workforce development system. Because this role is a rapidly
evolving one, NCD believes that more information is needed on how it is being
performed and with what results. Accordingly, NCD urges RSA to survey state
VR agencies on their outreach and technical assistance activities and, depending
on the findings, to consider including in state VR plans a requirement that
states describe their activities and relationships in these areas.
Other Resources
and Issues
The job training, job placement, and employment support system
of this country is composed of a large, if not bewildering, array of entities.
For people with disabilities this can be even more the case than for the population
at large. A number of new entities and programs have become part of the employment
development system, and these must be taken into account in planning and evaluation.
Loan Programs
In the past three years, two major AT loan programs have been
developed for people with disabilities. Operating under the authority of Title
III of the Assistive Technology Act of 1998106 and under the combined rubric of
alternative financing mechanisms, these are the Alternative Financing Program
(AFP) for equipment loans and the Access to Telework Fund aimed at enhancing
opportunities for telework by people with disabilities. Whereas the AFP program
makes equipment loans available for a variety of purposes, whether self-employment
or employment by a company or other entity, the telework program is exclusively
focused on the latter and is regarded as a major component of NFI.
While such loan programs are valuable in extending available resources,
drawing in new community partners, and allowing persons with disabilities to
exercise new options for self-determination, their impact on the ways existing
programs perform their statutory obligations and their impact on the creation
of employment, the generation of borrower income, and the improvement in quality
of life needs to be carefully evaluated. Likely a number of years will be required
before any meaningful statements about the overall impact of these programs
can be made.
In this connection, NCD applauds the National Institute on Disability
and Rehabilitation Research (NIDRR) for the provision of technical assistance
to these state-based programs through the Rehabilitation Engineering and Assistive
Technology Society of North America (RESNA), and we commend the parallel activities
of a group of federal agencies to evaluate the suitability of various categories
of home-based employment as sources of employment for persons with disabilities.
We are concerned, though, at how the job categories to be studied were selected.
A news release about the program indicates that call centers and medical transcription
are the two areas to be studied. NCD wonders whether these were selected based
on data suggesting that they represented areas of potential demand and of reasonable
income levels for home-based workers within the United States.107
NCD is also concerned about certain administrative features of
the programs, such as why there needs to be the complexity, or the potential
overlap or gaps, resulting from the existence of two such closely related but
separate programs. Concern may also be warranted as to whether the targeting
of funds specifically for telework or telecommuting, rather than for employment
broadly, may not inadvertently create a tilt in favor of work at home that
may not be entirely consistent with the values of community integration and
mainstream participation.
A third concern is that state AT Act projects or newly created
state loan program-administering entities have expressed worry about the nature
of federal matching fund requirements applicable to state participation in
the loan program.108 Concerns
have reached us about requirements for upfront cash derived from state coffers,
which may inhibit program effectiveness and prevent the development of new
and creative partnerships utilizing noncash resources of potential importance
to end-users. Accordingly, NCD recommends that, at least until states' fiscal
situations improve significantly, NIDRR waive upfront cash requirements and
accept a variety of other forms of documentable matching contributions, including
noncash matches, so long as these in-kind or other noncash resources are reasonably
amenable to valuation.
Yet a fourth concern with these AT loan programs relates to their
potentially salient role in helping to establish the creditworthiness of borrowers.
Numerous anecdotal reports indicate that, although borrower defaults can readily
be reported to credit reporting agencies, timely and successful compliance
with loan repayment obligations are much harder to put into an individual's
credit record. This anomaly appears to result from the fact that the major
credit reporting agencies will not accept favorable reports on individuals,
but require such reports to be bundled so that at least a minimum of 100 at
a time are transmitted to them. Because the loan funds are still relatively
small and do not yet serve large numbers of individuals at one time, any aggregation
requirement for the reporting of positive credit history data may work a hardship
on these programs and on loan recipients. To investigate the extent of and
bases for this problem, NCD recommends that the Department of Education, through
its Office of Civil Rights (OCR), open an inquiry into the sources of these
policies, and if they are found to exist as described to us, seek to remove
this barrier to the establishment of positive credit history records by borrowers
with disabilities. If possible, representations should be made to the major
credit reporting agencies that would allow for avoidance of the aggregation
requirement for these small loan programs, and for community development credit
unions and other community-based organizations that deal with relatively small
numbers of people for whom establishment of credit histories reflective of
their demonstrated levels of responsibility and commitment would make a big
difference.
Tax Incentives
With the expiration on December 31, 2003, of the current version
of the Work Opportunity Tax Credit,109 attention once again turns to the
question of tax incentives for the employment of underemployed populations,
including persons with disabilities. The work opportunity credit (which was
expected to be reauthorized before publication of this report) subsidizes a
portion of first-year wages paid by employers to new hires from "targeted" groups.
People with disabilities have been one of the targeted groups, but only indirectly.
That is, recipients of SSI and VR systems referrals, both of which groups are
likely to be largely or exclusively composed of people with disabilities, are
two of the targeted groups.
NCD has long advocated, and reiterates its recommendation here,
that if Congress deems this credit worth renewing, the credit's availability
should be extended to all persons with disabilities in need of employment.
That is, the credit's availability should not be limited to the two disability
subgroups just noted, but should be extended to jobless persons with disabilities
who are recipients of SSDI, participants in Ticket to Work programs, and any
long-term unemployed persons who are otherwise readily verifiable as meeting
established definitions of disability. Accordingly, NCD recommends that Congress
revise the Work Opportunity Tax Credit so that all long-term unemployed persons
with disabilities are eligible to benefit from the incentives it offers, and
so that employers are free to hire any appropriate person with a disability
and still receive this credit.
Another problem with the credit up to now is that it has not been
available for rehires. Yet, for persons with disabilities seeking to return
to the workplace, often after lengthy periods of unemployment, frequently doing
very different work, return to a previous employer may be far more like starting
a new job than like recommencing an established one. Job duties may be quite
different, and the reciprocal fears and expectations of both employee and supervisors
may belie and strain any preexisting relationship. Under these circumstances,
NCD recommends that any reenactment of the credit, or any review of the credit
in the context of broader tax legislation, include provisions making it available
for people returning to their former employers following significant periods
of separation after the onset of a disability.
Ticket To Work
When it was enacted at the end of 1999 as the last piece of major
federal legislation of the 20th century, the Ticket to Work and Work Incentives
Improvement Act (TWWIIA)110 was hailed as a landmark development
in providing new employment opportunities and resources for people with disabilities
and in removing the disincentives to employment associated with the risk of
losing health insurance as a result of earning income.
In its July 2003 annual progress report, NCD noted a number of
problems that have been identified with the design of the program and with
the interface between TWWIIA and the Social Security Act.111 This
year, the ongoing monitoring of the program is expected to result in the issuance
of a number of important reports and findings by the TWWIIA advisory panel
(TWWIAP) (including the congressionally mandated Adequacy of Incentives [AOI]
report),112 established
by the law to advise SSA on the efficacy and implementation of the law. Should
these reports disclose opportunities to improve the program, NCD recommends
that the Administration move swiftly to remedy the problems uncovered, either
by interagency, executive branch action or by proposing and supporting appropriate
legislation, as the case may be.
Pending the results of this review of the TWWIIA program, NCD
will refrain from making further recommendations at this time. We do note,
however, that given the twofold purpose of TWWIIA to increase the range of
employment-services options available to Social Security program beneficiaries
and to reduce the disincentives resulting from the risk of loss of income or
of health-insurance coverage under Social Security programs, any attempt to
thoroughly assess and to fully effectuate the goals of TWWIIA requires us to
take full account of the intersection between employment policy and health
policy. And reference to the potentially significant but indirect results for
employment of policies in the health care area brings us back to where we began,
to the issues of coordination and accountability.
It may be that erosion of TWWIIA is among the prices that must
be paid for needed budget cuts, such as cuts in Medicaid made by many states
over the past three years; but if that is so, the choice should be made known
in a manner that supports informed decision making and demonstrates accountability
to citizens with disabilities and to the public at large.113 Accordingly,
NCD recommends that Congress study the health insurance-related work disincentives
problem anew, in the context of Medicaid cutbacks. This matter is further discussed
in Chapter Four on health care.
Conclusion
Beginning with the reasons for believing that unemployment among
persons with disabilities is on the point of becoming a national crisis, this
chapter has addressed the overall workforce development system as it relates
to individuals with disabilities. It has also reviewed the specialized programs
that attempt to enhance training and employment for members of this population,
along with a discussion of tax incentives designed to promote the employment
of people with disabilities and loan programs designed to augment existing
resources.
Recommendations
Summary
Recommendations
to Congress
Recommendation 7.1-NCD recommends that Congress fully explore
the consequences arising from the fact that because of order of selection,
the eligibility standards the VR law prescribes and the services it authorizes
may not, in fact, be making their way through the pipeline to all intended
end-users and service providers in communities around the country.
Recommendation 7.2-NCD recommends that Congress revise
the Work Opportunity Tax Credit so that all long-term unemployed persons with
disabilities are eligible to benefit from the incentives it offers, and so
that employers are free to hire any qualified person with a disability and
still receive this credit.
Recommendation 7.3-NCD recommends that any congressional
reenactment of the Work Opportunity Tax Credit, or any review of the credit
in the context of broader tax legislation, include provisions making it available
for people returning to their former employers following significant periods
of separation after the onset of a disability.
Recommendation 7.4-NCD recommends that Congress study the
health insurance-related work disincentives problem anew, in the context of
state Medicaid cutbacks.
Recommendations
to the Administration
Recommendation 7.5-NCD recommends that the Administration
establish a blue-ribbon task force to study the aging of the workforce on an
expedited basis and to make recommendations to Congress on measures that could
be taken to strengthen the capacity of the economy to retain and benefit from
the services and experience of older workers with adult-onset disabilities.
Recommendation 7.6-NCD recommends that the Administration
move swiftly to remedy any problems uncovered by forthcoming studies on the
Ticket to Work program, either by interagency or executive branch action or
by proposing and supporting appropriate legislation, as the case may be.
Recommendations
to DOL
Recommendation 7.7-NCD recommends that DOL establish and
publicize a complaint procedure for use by individuals who have been denied
access to One-Stop Centers, incorporate accessibility guarantees in requirements
for state workforce development plans, and insist on inclusion of representatives
of people with disabilities (or at least of state VR agencies) on state and
local WIBs.
Recommendation 7.8-NCD recommends that DOL, acting through
its ODEP or through its OIG, jointly develop with DOJ a plan for vigorous and
proactive enforcement of the antidiscrimination and accessibility requirements
of the law bearing on the ability and willingness of One-Stop Centers to serve
customers with disabilities.
Recommendation 7.9-NCD recommends that DOL develop outcome
measures that take due account of all the relevant variables involved in working
with job seekers with disabilities, including not only the potential costs
of working with this population within a mainstream setting, but also the benefits
to the taxpayers of commitment and success in such work.
Recommendation 7.10-NCD recommends that DOL survey One-Stop
Centers and people with disabilities who have received referral services through
them to determine the measures the One-Stop Centers have used to monitor the
treatment that people with disabilities receive at the hands of community partners,
and the means they have developed for sharing expertise and resources with
such providers in ways aimed at ensuring accessibility.
Recommendations
to ED
Recommendation 7.11-NCD recommends that the Department
of Education's RSA establish an investigative procedure through outreach to
a variety of VR partners to determine the extent to which the aspirations and
obligations of these partners to work collaboratively and smoothly with VR
are adversely effected or unduly complicated by recourse to orders of selection.
Recommendation 7.12-NCD recommends that, at least until
states' fiscal situations improve significantly, ED through NIDRR should waive
upfront cash requirements and should accept a variety of other forms of documentable
matching contributions, including noncash matches, so long as these in-kind
or other noncash resources are reasonably amenable to valuation.
Recommendation 7.13-NCD recommends that ED, through its
OCR, open an inquiry into the sources of policies that may hinder establishment
of positive credit histories, and if they are found to exist as described to
us, seek to remove this barrier to the establishment of positive credit history
records by borrowers with disabilities.
Chapter Eight Welfare Reform
Introduction
This country operates numerous programs that provide federal subsidies
to individuals on various bases. Some of these programs are grouped under the
imprecise heading of "welfare." The definition of what programs are considered
welfare, what programs are subsidies, what programs are investments, and so
forth is largely a function of the observer's beliefs and priorities. Whatever
one's definition of the scope of welfare, it seems clear that the term has
acquired a deeply pejorative meaning. When someone describes a program as welfare,
often the comments are generally disparaging the program to a greater or lesser
degree.
Various programs that seek to aid people of low income, including
food stamps programs, nutrition programs such as the Special Supplemental Nutrition
Program for Women, Infants and Children (WIC), and state and local general
assistance, have widely been characterized as welfare. Yet the one program
that has most universally received this designation, whether as condemnation
or tribute, is Temporary Assistance to Needy Families (TANF), formerly known
as Aid to Families with Dependent Children (AFDC).
Since enactment of the Personal Responsibility and Work Opportunity
Reconciliation Act of 1996 (PRWORA),114 which changed the program name, dramatically
overhauled the system by incorporating benefit-amount limits and time limits,
and established work requirements for recipients, the number of families receiving
welfare has fallen steeply. While these declines in the welfare rolls have
been widely hailed, concern has grown as to how recipients with disabilities
have fared under the new law.
Perhaps because TANF was not viewed as a disability program, little
data is available on the specific experience of people with disabilities under
the 1996 legislation or its impact on their lives. Such data would be extremely
valuable, however, in view of a GAO report that found that some 40 percent
of TANF recipients were either individuals with disabilities or the parent
or caretaker in families containing one or more children or other persons with
a disability.115 As welfare caseloads have continued
to shrink, leaving only a more hard-to-employ population among recipients,
it is likely that this 40 percent figure may be even higher today.
PRWORA was scheduled for reauthorization in 2003. In the hope
of assisting Congress in its deliberations, NCD published a major report on
TANF in 2003,116 and
our 2003 annual progress report also contained detailed recommendations on
provisions that NCD's research found to be critical to the effective implementation
of the law.
Although a reauthorization bill was passed in the House117 and
a version was marked-up in the Senate,118 Congress did not reauthorize the
law. Instead, temporary extensions were used, and it was expected that the
reauthorization legislation would be adopted in the second session of the 108th
Congress during 2004. Based on the importance of the issues and because the
concerns they reflect can be addressed in a variety of forums, including the
adoption and revision of regulations implementing the new law, NCD believes
it useful to summarize our major concerns and recommendations here.
The sections that follow discuss time limits and benefits caps,
consider recipient work requirements, describe the potential of individual
development accounts, and examine how individuals with disabilities may end
up on welfare or as SSDI/SSI recipients.
Time and Benefits
Limits
Two of the features of the current law certain to be retained
in the reauthorization of TANF are lifetime limits on the length of time to
collect benefits and the amount of funding available to individuals and families
under the program. For most people, transition to employment within these parameters
(five years under the current program, for example) should be possible. But
for some recipients with disabilities, these limitations can pose a problem.
While the law cannot be expected or designed to anticipate every
individual circumstance, Congress should bear in mind that for many people
with disabilities, the ability to enter or maintain gainful employment will
depend on the availability of specialized support services and resources of
a nature that would not be needed by other recipients and that may be unfamiliar
to program administrators or evaluators. For these reasons, we continue to
advocate two key measures. First, NCD recommends that Congress grant state
TANF administrators expanded discretion to waive time or benefits limits in
those cases where the support services needs resulting from disability cannot
be sufficiently met to facilitate successful employment. From rehabilitation
training, to assistive technology, to accessible transportation, to appropriately
skilled child or spousal care, to adequate health insurance coverage, to the
ability and willingness of employers to provide reasonable accommodations-any
or all of these may prove crucial for the desired employment outcome to be
achieved and sustained.
Second, to ensure that these key resources are identified in a
timely fashion and are incorporated in the recipient's Personal Responsibility
Plan (PRP), NCD recommends that the Secretary of HHS issue regulations requiring
state TANF program administrators to set up screening and cooperative service-provision
partnerships with state VR agencies (or where orders of selection prevent the
state VR agencies from effectively offering their services to new people, with
other appropriate entities) that can offer the expertise needed to ensure that
TANF recipients' disability-related training and other employment-support needs
will be properly identified and effectively met.
Work Requirements
To ensure that people progress satisfactorily toward employment,
the law is certain to retain work requirements bearing on how many hours a
week recipients must engage in work activities during the transition period.
The law is also certain to retain sanctions for those recipients who do not
comply and are not excused from these requirements.
An important question for people with disabilities relates to
the definition of work activities, specifically to whether and how much participation
in rehabilitation or vocational training programs can count toward fulfilling
the work requirements of the law.
The Pathways to Independence Act (S. 1523) was introduced by a
bipartisan group of senators in 2003 and provided for up to six months of participation
in rehabilitation services counting toward meeting the work requirement. NCD
recommends that Congress adopt the Pathways to Independence Act as part of,
or as an amendment to, the overall PRWORA reauthorization. We also recommend
that Congress grant states the discretion to waive this six-month limit in
cases where additional time would likely make the difference in bringing about
long-term gainful employment.
Individual Development
Accounts
In our society, access to lifelong education and training is increasingly
essential to meaningful employment. At the same time, the ability to amass
financial assets, ranging from home ownership to retirement savings, has emerged
as the indispensable pathway to long-term financial independence. For people
who work regularly in reasonably well-paying employment, it is generally expected
that the proceeds from their wages will be available as the basis for the creation
of such financial assets.
For low-income people, including those leaving welfare for entry-level
jobs, the resources necessary to begin the accumulation of assets may often
be quite limited and elusive. For any number of reasons, opportunities for
savings, investment, or access to credit may be quite limited.
Recognizing this and wishing to experiment with new modalities
and partnerships for breaking the cycle of poverty, Congress enacted the Access
to Financial Independence Act of 1998 (AFIA).119 Among other things, AFIA provided
for the creation and use of individual development accounts (IDAs) in a number
of settings to help designated categories of people accumulate the resources
necessary to achieve employment and other important life goals. IDAs supplement
earnings or other funds and are saved toward the attainment of designated,
predetermined goals. They allow the accountholders to save funds, without penalties
from other means-tested programs, and they allow these saved funds to be matched
by various public and not-for-profit sources.
PRWORA carries this principle further with specific reference
to welfare recipients by establishing what are known as TANF IDAs.120 These
accounts would appear to have great potential for all TANF work aspirants,
but their applicability to TANF recipients with disabilities is limited in
easily correctable ways.
Under current law, TANF IDAs can be created for three purposes:
education and training, first-time home ownership, and small-business capitalization.
Clearly, any and all of these are of as much pertinence to people with disabilities
as to people without, but there are other categories of expenditure that people
with disabilities confront in returning to work, categories that are often
more difficult to fund, that TANF IDAs should be expanded to cover.
Assistive technology and accessible transportation are two leading
examples of such costs. Difficulty in meeting the costs associated with these
two resources surely plays a role in preventing many motivated people with
disabilities from entering, retaining, or advancing in work. For this reason,
NCD recommends that Congress broaden the definition of qualifying savings goals
for TANF IDAs to include assistive or universally designed technology and modified
vehicles or other specialized transportation services needed in order to work.
With respect to the existing TANF IDA provisions specifying first-time
home acquisition as a qualifying IDA savings objective, NCD also recommends
that DOJ evaluate whether, in order to comply with ADA, the definition of permissible
acquisition expenses should be broadened to include the costs of home modifications
where such modifications are necessary to make the home accessible for a person
with a disability.
The Streaming
Problem
Although no data is known to exist, there is reason to suspect
that of the 40-percent disability rate among TANF recipients found by the GAO,
a number of people are eligible for Social Security Disability Insurance (SSDI)
benefits. Nor is it unreasonable to suppose that happenstance or randomness
played a role in determining which system these people were channeled into.
Their status as welfare recipients versus SSDI recipients could result less
from any systematic assessment than from the vagaries of who they spoke to,
what office they went to, or what agencies they contacted. As important as
it is that all people, with and without disabilities, and regardless of what
benefits they receive, have their employment potential maximized, it would
be both arbitrary and unjust for people who cannot readily work to be sanctioned
or otherwise denied benefits without a full assessment of their overall circumstances.
Accordingly, NCD recommends that Congress require that before
sanctioning any individual with a significant disability, or before curtailing
benefits due to exhaustion of time limits to persons who may have a hidden
disability or whose service needs as primary caregivers for family members
with disabilities have not been fully assessed by knowledgeable persons, states
ensure that these persons are offered the opportunity for a full medical-vocational
assessment through the state's Office of Disability Determination and its VR
agency.
Conclusion
This chapter has addressed some of the major features of the welfare
system as they relate to the circumstances faced by many individuals with disabilities.
Believing that all people can and should work, NCD has proposed measures that
would ultimately facilitate that goal for the largest number of people, while
avoiding undue harshness to those who cannot readily be absorbed or accommodated
in the current labor market.
Recommendations
Summary
Recommendations
to Congress
Recommendation 8.1-NCD recommends that Congress grant state
TANF administrators expanded discretion to waive time or benefits limits in
those cases where the support services needs resulting from disability cannot
be sufficiently met to facilitate successful employment.
Recommendation 8.2-NCD recommends that Congress adopt the
Pathways to Independence Act as part of, or as an amendment to, the overall
PRWORA reauthorization. We also recommend that Congress grant states the discretion
to waive the Act's six-month limit in cases where additional time would likely
make the difference in bringing about long-term gainful employment.
Recommendation 8.3-NCD recommends that Congress broaden
the definition of qualifying savings goals for TANF IDAs to include assistive
or universally designed technology and modified vehicles or other specialized
transportation services needed in order to work.
Recommendation 8.4-NCD recommends that Congress require
that before sanctioning any individual with a significant disability, or before
curtailing benefits due to exhaustion of time limits to persons who may have
a hidden disability or whose service needs as primary caregivers for family
members with disabilities have not been fully assessed by knowledgeable persons,
states ensure that these persons are offered the opportunity for a full medical-vocational
assessment through the state's Office of Disability Determination and its VR
agency.
Recommendation
to HHS
Recommendation 8.5-NCD recommends that the Secretary of
HHS issue regulations requiring state TANF program administrators to set up
screening and cooperative service-provision partnerships with state VR agencies
(or where orders of selection prevent the state VR agencies from effectively
offering their services to new people, with other appropriate entities) that
can offer the expertise needed to ensure that TANF recipients' disability-related
training and other employment-support needs will be properly identified and
effectively met.
Recommendation
to DOJ
Recommendation 8.6-NCD also recommends that with respect
to the existing TANF IDA provisions specifying first-time home acquisition
as a qualifying IDA savings objective, DOJ evaluate whether, in order to comply
with ADA, the definition of permissible acquisition expenses should be broadened
to include the costs of home modifications where such modifications are necessary
to make the home accessible for a person with a disability.
Chapter Nine Housing
Introduction
Affordable housing is a serious and growing problem throughout
our nation. But for people with disabilities, who typically have lower incomes
than other citizens and who have nearly twice the poverty rate as the population
as a whole, the problem of affordability is compounded. Added to the basic
affordability problem is the scarcity of accessible housing for those who need
it. And finally, overarching all, is the widely perceived failure of housing
programs to address the specific educational, informational, financial, and
other issues confronting many people with disabilities.
NCD has addressed the subject of housing in a number of studies
and settings, including our in-depth report of two years ago.121 In
last year's annual progress report, we followed up the Reconstructing Fair
Housing study with an inquiry into the extent to which the Department of
Housing and Urban Development's (HUD's) five-year planning process succeeded
in taking into account the issues facing people with disabilities.122
This year, we focus on issues surrounding the linkages needed
to maximize the effectiveness of a number of housing programs for people with
disabilities and on measures that HUD and Congress can take to improve the
supply of accessible housing.
This chapter addresses coordination in the creation and implementation
of national housing policy, reviews existing housing programs of special interest
to people with disabilities, discusses civil rights enforcement, and introduces
a number of strategies for increasing the accessibility of the housing stock
through incentives to the public and private sectors.
Coordination
NCD recognizes that HUD does not have the kind of comprehensive
jurisdiction or oversight responsibility that would allow it to be held accountable
for the success or failure of all federal housing policy in relation to people
with disabilities. Depending on whether the goal is rental or home ownership,
numerous other entities-ranging from Fannie Mae to local public housing agencies
(PHAs) to mortgage brokers and lenders to community-based organizations (CBOs)
to benefits counselors (who may need to assist people under means-tested benefits
programs to understand the pitfalls and overcome the program participation
disincentives)-may all need to be involved.
But even if all these entities are willing and able to work together
to maximize the number of people with disabilities who can find affordable
housing, widespread and systemic problems, such as the imperative to increase
the proportion of accessible housing in the nation's housing stock, require
the participation of yet additional entities. From DOJ (in its enforcement
of ADA, the Fair Housing Act [FHA], the Architectural Barriers Act, and other
laws) to the successive Administrations and Congresses (in their failure thus
far to target the considerable incentive power of the home mortgage interest
deduction or the low-income housing tax credit toward the building and renovation
of accessible housing) to many other institutions that could be mentioned,
any systematic effort to address the housing needs of persons with disabilities
must necessarily require levels of coordination and partnership, not to mention
vision, that simply do not exist and for which we have no proven models.
As the population ages, the critical problems of affordability
and accessibility are likely to grow more pressing. Faced with this chronic
but potentially worsening situation, NCD recommends that the Administration
appoint a high-level national commission-composed of economists, housing and
transportation experts, tax practitioners, legal analysts, architects, land-use
planners, and individuals with disabilities-to map a long-term strategy for
steadily increasing the proportion of the nation's housing stock that meets
standards of accessibility.
Existing Programs
All housing programs, whether aimed at supporting rental or ownership
or designed to facilitate construction, have the capability and effect of benefiting
people with disabilities along with everyone else. But a number of programs
either have features that operate differently for people with disabilities
or are designed specifically for this population. For example, HUD's Housing
Choice Voucher program includes one competitive grant program specifically
designated for rental housing assistance for families including members with
disabilities.123 Local PHAs apply specifically for
these funds. Similarly, under the Section 8 home ownership program, individuals
with disabilities may be eligible for mortgage assistance with lower annual
incomes than would otherwise be the case.124
Taken together, programs such as these, along with other initiatives
such as Fannie Mae's 3-percent down payment Home Choice Mortgage program,125 the
set-asides and savings achievable under the Family Self-Sufficiency (FSS) program,
and the use of IDAs, can contribute significantly to the ability of many people
with disabilities to obtain quality, affordable housing.
While these programs, used individually or in combination, can
never be large enough to make a material dent in the problem, it is nevertheless
important that they are utilized as effectively, and by as many people, as
possible. The questions NCD believes need to be asked in this connection are:
How widely are these programs known, understood, and, above all, utilized by
the housing community and by people in search of housing? What resources exist
or are needed to ensure maximum access to and utilization of these programs
by people with disabilities? And what linkages and community partnerships need
to be put in place to ensure that these programs can be effectively accessed?
Concern exists that the complexities attaching to these programs
and the barriers to accessing them may well undermine their potential to a
troubling degree. Income eligibility, documentation requirements, timing, and
many other issues must be confronted in identifying the barriers and making
these programs work.
For example, IDAs are one vehicle for amassing capital for home
buying. But for IDAs to be fully excluded from the computation of assets under
means-tested benefits programs such as SSI, it is generally necessary that
the matching funds going into them come from public rather than nonprofit sources.
Similarly, while people who establish IDAs as a means of transitioning out
of welfare under the TANF program are generally required to fund their portion
of their IDAs solely out of earned income, this may not always be the case
with other IDAs. How many community-based organizations understand these nuances,
and how many low-income individuals with disabilities feel fully confident
to use them, or even know about them, are all open to question and concern.
Through such resources as the Protection and Advocacy Services
program for Benefits Planning, Assistance and Outreach (BPA&O), many people
with disabilities can find assistance in understanding and resolving these
and other disincentive conundrums in the law. Untangling the knots can still
be extremely difficult and time-consuming and presents unique challenges in
individual cases.
NCD commends HUD for the variety of technical assistance and outreach
efforts it has launched in conjunction with other agencies to acquaint the
housing community with the requirements of fair housing and to provide technical
assistance in other areas. But we believe that to deal with this dimension
of the housing gap (namely, access to the variety of specialized, small, but
instrumental programs mentioned in this section), additional measures and new
strategies are required. Accordingly, NCD recommends that HUD develop and disseminate
a comprehensive publication explaining all the rental and home ownership programs
available, with particular reference to the specific provisions dealing with
people with disabilities. Through illustrations and case studies, HUD should
be explaining all major potential interactions with other laws and benefit
programs. This publication should be made widely available in a variety of
accessible formats and should be supplemented with one-to-one assistance via
a toll-free line or Internet where required (as is provided for the Medicare
drug-discount program by HHS or for the tax code by IRS). To ensure the responsiveness
of the publication to a broad range of concerns, an advisory committee including
housing advocates and community and disability groups should be convened to
oversee and review the development of the document.
Civil Rights
NCD wishes to commend HUD for the commitment to civil rights awareness
and enforcement reflected in a number of its ongoing initiatives. From its
conduct of an increased number of Section 504 compliance reviews, to its establishment
of a Fair Housing Training Academy, to its plans to create a unit within the
Office of Fair Housing and Equal Opportunity (FHEO) to investigate complex
cases and pattern-and-practice cases, HUD's efforts represent an important
commitment to the vital role of civil rights laws and civil rights enforcement
in the implementation of federal housing policy.126 In
a spirit of constructiveness and encouragement, NCD would like to continue
the dialogue with HUD and make several suggestions that we believe can improve
the focus and outcomes of these efforts.
Interagency
Efforts
While HUD's involvement in and sponsorship of a number of interagency
efforts is gratifying, we continue to be concerned about serious discontinuities
in policies arising from gaps in the relationship between HUD and DOJ. Recognizing
that these are not necessarily within HUD's control, their centrality to effective
enforcement of civil rights laws in the housing area nevertheless requires
that they be discussed here.
In a recent letter to NCD, following up on the recommendations
in last year's progress report and responding to additional inquiries,127 HUD
described a number of joint efforts with DOJ, including operation since 1991
under a memorandum of understanding (MOU) that governs the referral of Fair
Housing Act cases by HUD to DOJ.128 Whether comparable MOUs exist in
connection with referrals under the other key fair housing jurisdictions-Section
504 of the Rehabilitation Act, and Titles II and III of ADA-was not made clear.
However, somewhat shocking was the indication, elsewhere in the letter, that
HUD's referral to DOJ of recently uncovered Section 504 violations by the City
of Baltimore's Housing Authority represents the first instance in which such
a referral has been made.
It is by no means clear that in the instances where cases have
been referred to DOJ, HUD carries out any follow-up with regard to DOJ's disposition
of matters referred to it, that DOJ has procedures in place for seeking and
incorporating HUD's expertise in its disposition of such cases, or that HUD
and DOJ have collaborated in ways that would ensure the presentation of referred
cases in a way most useful to DOJ.
HUD's letter indicates the expectation that referral of the Baltimore
case to DOJ will send a powerful message to other housing authorities that
HUD is serious about Section 504, but NCD is concerned that without equally
resolute DOJ follow-up, much of this lesson may be lost. Under these circumstances,
NCD recommends DOJ and HUD systematically address each of these issues and
jointly publish and thereafter adhere to guidelines delineating the management
of cases from HUD (or Fair Housing Assistance Program) complaints to DOJ or
judicial disposition.
Voluntary Compliance Agreements
HUD's letter recounts the undertaking of some 93 Section 504 compliance
reviews of housing agencies throughout the country operating HUD-funded programs
during FY 2003. The letter indicates that four of these reviews were managed
out of the department's headquarters office. The letter further notes that
four (possibly the same four as were centrally conducted) of the reviews found
some degree of noncompliance sufficient to result in the commencement of negotiations
to remedy these defects through entry into voluntary compliance agreements
(VCAs) between the Department and the municipalities in question.
Left unanswered is the key question of what these compliance reviews
tell us about the nature and level of noncompliance in the creation of accessible
housing units and in other dimensions of Section 504 adherence by local PHAs.
If these four major urban housing authorities were selected for review because
of reports or complaints of noncompliance, that is one thing. But if they were
selected randomly, then the fact that they all had problems is a matter of
grave concern. Even if only 4 of 93 agencies were found to have problems, the
question remains, is this number dangerously high or acceptably low?
As part of its effort to identify the nature and extent of discrimination
in publicly supported housing, NCD therefore recommends that HUD undertake
a study aimed at determining the extent and nature of noncompliance not only
with Section 504, but also with Title II of ADA by local housing authorities
and state PHAs.
Research
NCD looks forward to the publication this fall of the results
of HUD's research, utilizing matched pairs of testers, into the extent and
nature of housing discrimination against people with disabilities.129 While
unquestionably very useful in uncovering certain types of housing discrimination,
there remain many other forms of serious discrimination that are not likely
to be detected by these techniques. The failure of architects and builders
to incorporate required accessibility features into their designs or major
renovations may occur long before there is any prospective buyer or renter
to look at the property. While the failure to maintain working elevators, accessible
paths of travel, or safe walkways, does not amount to the denial of accommodations,
it achieves the same result by indirect, perhaps even unintended, means.
Accordingly, while encouraging HUD to publish the findings of
its research on schedule, and while commending the several federal agencies
that have devoted considerable effort to the dissemination of technical assistance
to the architectural and building-management communities, NCD recommends that
HUD develop research strategies, going beyond the use of testers in matched
pairs, aimed at identifying instances of discrimination occurring at nonpublic
points in the housing process.
Training and
Technical Assistance
Through programs like its Fair Housing Accessibility First Initiative
(the FIRST program), HUD has devoted important resources to the provision of
training and technical assistance and to the dissemination of information to
architects, builders, and others in the housing community. HUD's letter indicates
that this program has had successful initial results in the broadening of knowledge.
While NCD is pleased at this assessment, we are concerned that
in this era of accountability the Department's conclusions are too vague and
subjective to dispel serious worries. By what standard does the Department
purport to know that the hotline and related modalities used for this information
dissemination have resulted in a sustained increase of relevant knowledge in
the housing community? If by caller self-assessment, is such verification regarded
as valid or reliable in the research community? If by random follow-up sampling,
what level of specificity and what time frames were involved?
More significant than the question of whether knowledge was disseminated
is the question of whether it is knowledge at all, rather than behavior, that
matters. People know that they should not smoke, drink, eat to excess, or drive
without seat belts, yet we hardly measure the effectiveness of public health
interventions by the abstract knowledge gained by information recipients or
by the volume of information disseminated. So, too, with housing discrimination
or the accessibility requirements of the law, it is not people's knowledge
that matters, but whether their behavior and practices are changed as a result
of the training and technical assistance they receive.
While recognizing the notorious difficulty of deriving meaningful,
objective evidence of the long-term impact of training and technical assistance
programs, NCD believes that HUD must devise methods for assessing these outcomes
of its work. This need is particularly great where, as is currently the case,
the Federal Government has not demonstrated its regard for traditional means
of enforcement as the primary means for vindicating the law or the rights it
protects. For this reason, NCD recommends that HUD, in collaboration with OMB,
develop a research model for assessing behavior or other actual change, and
thereafter conduct in-depth follow-up interviews after 6 and 12 months with
a random sample of training and technical assistance recipients across the
spectrum of programs utilizing these resources. The purpose of the research
and follow-up is to determine the actual impact of this training on the way
recipients carry out their work, on the manner in which they make decisions,
and on the content of those decisions.
In this connection, the differences between new laws and those
that have been in existence for 14 to 21 years (as have Sections 504, the Fair
Housing Act Amendments, and ADA) must be emphasized. Technical assistance aimed
at acquainting people with the existence and scope of new laws is one thing.
But when technical assistance is still thought necessary to familiarize housing
industry professionals with the provisions of laws that have been on the books
for years, then some more fundamental questions need to be asked and some rethinking
is in order. In an age of accountability, we have neither the time nor the
funds to continue pouring out mere informational pieces, under circumstances
where we have no evidence of how well they work, by themselves or relative
to other strategies. Until or unless we know what works and why, the folly
of continuing to do what we have been doing is clear, and the failure to analyze
our approach is increasingly untenable.
Disability and
Homelessness
NCD appreciates HUD's important contributions to the work and
recommendations of the NFI Mental Health Report published in 2003. Perhaps
because of its engagement with the difficult issues surrounding discrimination,
homelessness, and support services for persons with mental illnesses, much
of HUD's discussion in its letter (which we continue to use as the basic source
of reference for these comments) concerns itself with a variety of initiatives
designed to prevent homelessness. Where NCD wishes HUD were more expansive
is in the elaboration of its views on the connection between disability and
homelessness, its views on whether people with disabilities are at greater
risk of homelessness than other populations, and its assessment of what is
cause and what effect in any such relationship.
By and large, HUD programming in the disability and homelessness
arena appears to take as its point of departure that economics, need for support
services, lack of job or negotiating skills, and perhaps discrimination all
combine to explain the occurrence of the problem. Albeit on a small and experimental
scale, the variety of worthy, competitive grant programs HUD runs to address
all these issues are likely to amass valuable data on best practices and to
create replicable program models. Although programs like the Section 811 program
need enhanced funding to meet existing needs, Section 811 and the other programs
designed to break the link between disability and homelessness appear to reflect
little recognition of other major factors that may be involved.
Even if we succeed in preventing homelessness among people with
disabilities, we will have done little to alleviate the other problems associated
with a shortage of affordable and accessible housing. As discussed in the first
section of this chapter, HUD appears to not yet have an overall plan for how
to make America's housing stock accessible, except to wait for its complete
replacement by new housing over what could prove to be a century or more.
Even when not homeless, people with disabilities suffer many distortions
and disruptions in their lives due to the shortage of accessible housing. HUD
needs to know by how much the relative scarcity of accessible dwellings may
itself contribute to the circle by exacerbating, as so many forms of social
instability tend to do, the stress and sense of dislocation underlying much
mental and emotional illness. HUD needs to know how much low incomes, per se,
and how much higher housing costs contribute to such phenomena as the shockingly
low rate (estimated at less than 10 percent, compared to more than 60 percent
for the general population) of home ownership among persons with disabilities.
HUD needs to understand whether people with disabilities who commute to their
jobs are obliged to live further from their work, owing to the shortage of
accessible, affordable housing, than the average employee; and HUD needs to
have some sense of whether such longer commutes, if found to exist, could contribute
in any way to the high levels of unemployment among people with disabilities.
HUD needs to know whether local agencies and private sector partners who build
accessible housing units do so in any consultation with transit agencies. And
HUD needs to know what, if anything, local housing agencies carrying out federally
funded programs are doing to respond to the Olmstead mandate, given
that the inability of some people, perhaps many, to leave or avoid institutions
may result from the unavailability of accessible and affordable housing or
from the lack of any nexus between housing and transportation.
Accordingly, as a basis for establishing coherence and priorities
in housing planning and policy, NCD recommends that the high-level national
commission recommended above to study how to expand the nation's accessible
housing stock also be charged by executive order to include these issues in
its mandate.
Incentivizing
Accessibility
Pending the completion of the research recommended above, NCD
believes there are a number of measures that can be taken to improve the accessibility
supply-and-demand equation.
Disclosure
NCD has made recommendations over the years for a number of measures
that could bring economic incentives to the incorporation of accessibility
features into residential properties of various types. We have suggested, for
example, that consideration might be given to making the accessibility status
of property a disclosure item for purposes of property sale or purchase. Such
a requirement, while imposing no new mandate of any kind on the private sector
or the real estate market, could go a long way to demonstrating that, far from
being a negative factor in home valuation, accessibility, particularly in an
aging population, contributes positively to the value and attractiveness of
many properties. Accordingly, NCD recommends that Congress authorize an experiment
in a number of diverse states or regional housing markets under which accessibility
status, as defined by HUD, would be added to the list of disclosure items under
the Real Estate Settlements Procedure Act.
By way of additional measures aimed at encouraging voluntary efforts
to make residential units and property accessible, NCD recommends that Congress
study the feasibility and impact of tax-based and other measures for increasing
the economic attractiveness of accessibility, such as measures that would speed
up the recovery period for the costs of accessibility modifications, measures
that would increase the availability of federally backed mortgage funds for
the construction or transfer of accessible units, and measures that would target
benefits under the housing tax credit to projects that incorporate universal
accessibility.
Definitions
The definitions of several key concepts used in the implementation
of federal law are in need of updating. For instance, responding to NCD's questions
about the meaning and application of the requirement of the law that 2 percent
of federally financed housing units must be accessible to persons with sensory
disabilities, HUD indicates that the meaning of this requirement is determined
under the Uniform Federal Accessibility Standards (UFAS). The UFAS are 20 or
more years old, were adopted long before the enactment of ADA, and contain
no reference to or awareness of a variety of technologies and design strategies
that have come into existence in the intervening decades, and that for all
practical purposes have come to define what accessibility actually entails.
Continuing to make policy decisions based on such outmoded guidelines is tantamount
to making public health decisions based on what we knew about cigarettes or
diet a generation ago.
HUD cannot and should not be expected to address these issues
alone. The involvement of other public sector and nongovernmental partners
will be needed if the work is to be done. However, HUD can and should show
leadership and vision in laying out the research agenda and challenging us
to identify policy options and data sources that reflect contemporary values
and knowledge.
A related definitional issue concerns how we measure disparities
in housing to begin with. We have traditionally defined adequate housing in
such terms as whether people's housing costs exceed 30 percent of their income;
in terms of minimal square footage per person; in terms of heat, light, air,
insulation, and other features. Are these still the parameters of adequate
housing, or do definitions need to be updated to take account of new values,
technologies, and needs, such as accessibility? And even using just the traditional
criteria, is there a significant disparity between the percentage of people
with disabilities who can find adequate housing and the percentage of people
without disabilities who can? If there is significant disparity, what should
be done about accepted definitions of minimally acceptable housing?
Faced with the necessity of reviewing and updating these and other
key definitions of what we do, what we require and how we assess our progress,
NCD recommends that HUD undertake a study of these and other definitions to
determine what, if any, changes, through administrative action or legislative
change, need to be made to bring definitions, technical requirements, and standards
into compliance with modern precepts, and to ensure that what we ask members
of the housing community to do continues to represent the most effective allocation
of public and private resources.
Visitability
Short of achieving full accessibility in all new construction
or major renovations, visitability (involving a degree of accessibility that,
while short of complete, at least allows persons with disabilities to enter
and avail themselves of the basic amenities of buildings) appears to represent
one of the most exciting interim strategies for broadening the social and residential
choices available to Americans with disabilities and to those without disabilities
who would welcome them into their homes. NCD gratefully acknowledges HUD's
indication of support for this concept, but we believe more can be done to
hasten its progress.
Since 1998 preferences have been given in competitive HUD funding
awards under several Notice of Funds Availability (NOFA) competitions to applicants
who include visitability in their plans or facilities.130 But
these competitive funding programs represent only a small and relatively temporary
portion of HUD expenditures, let alone total housing-related, federal expenditures.
To increase the use of visitability, NCD recommends that Congress study ways
through which visitability could be incorporated into all federal funding streams.
Such a study should include a review of ways that the tax subsidies associated
with the building and ownership of residential property could be enhanced for
properties that are made visitable or accessible.
The resources emanating from the Federal Government in the form
of direct and indirect subsidies and incentives constitute a mighty engine.
Few better ways could be found to enlist those resources on the side of full
inclusion and opportunity, and in the service of the President's oft-stated
and deeply held goals, than these that encourage and reward the important work
that needs to be done.
Conclusion
This chapter has examined some of the structural and systemic
problems faced in increasing the supply of affordable and accessible housing
for people with disabilities. Recommendations for research, experimentation,
and statutory change were presented that would have significant short- and
long-term potential to bring about greater equality in the housing expectations
and opportunities available to Americans with disabilities.
Recommendations
Summary
This chapter includes recommendations to Congress, the Administration,
the Department of Justice, the Office of Management and Budget, and the Department
of Housing and Urban Development.
Recommendations
to Congress
Recommendation 9.1-NCD recommends that Congress authorize
an experiment in a number of diverse states or regional housing markets under
which accessibility status, as defined by HUD, would be added to the list of
disclosure items under the Real Estate Settlements Procedure Act.
Recommendation 9.2-NCD recommends that Congress study the
feasibility and impact of tax-based and other measures for increasing the economic
attractiveness of accessibility, such as measures that would speed up the recovery
period for the costs of accessibility modifications, measures that would increase
the availability of federally backed mortgage funds for the construction or
transfer of accessible units, and measures that would target benefits under
the housing tax credit to projects that incorporate universal accessibility.
Recommendation 9.3-NCD recommends that Congress study ways
through which visitability could be incorporated into all federal funding streams.
Such a study should include a review of ways that the tax subsidies associated
with the building and ownership of residential property could be enhanced for
properties that are made visitable or accessible.
Recommendations
to the Administration
Recommendation 9.4-NCD recommends that the Administration
appoint a high-level national commission-composed of economists, housing and
transportation experts, tax practitioners, legal analysts, architects, land-use
planners, and individuals with disabilities-to map a long-term strategy for
steadily increasing the proportion of the nation's housing stock that meets
standards of accessibility.
Recommendation 9.5-NCD recommends that the high-level national
commission recommended above to study how to expand the nation's accessible
housing stock also be charged by executive order to include these issues in
its mandate.
Recommendations
to HUD
Recommendation 9.6-NCD recommends that HUD develop and
disseminate a comprehensive publication explaining all the rental and home
ownership programs available, with particular reference to the specific provisions
dealing with people with disabilities, and, through illustrations and case
studies, explaining all major potential interactions with other laws and benefits
programs.
Recommendation 9.7-NCD recommends that DOJ and HUD jointly
publish and thereafter adhere to guidelines delineating the management of cases
from HUD (or Fair Housing Assistance Program) complaint to DOJ or judicial
disposition.
Recommendation 9.8-NCD recommends that HUD undertake a
study aimed at determining the extent and nature of noncompliance not only
with Section 504, but also with Title II of ADA by local housing authorities
and state PHAs.
Recommendation 9.9-NCD
recommends that HUD develop research strategies, going beyond the use of
testers in matched pairs, aimed at identifying instances of discrimination
occurring at nonpublic points in the housing process.
Recommendation 9.10-NCD
recommends that HUD, in collaboration with OMB, develop a research model
for assessing behavior or other actual change, and thereafter conduct in-depth
follow-up interviews after 6 and 12 months with a random sample of training
and technical assistance recipients across the spectrum of programs utilizing
these resources. The purpose of the research and follow-up is to determining
the actual impact of this training on the way recipients carry out their
work, on the manner in which they make decisions, and on the content of those
decisions.
Recommendation 9.11-NCD
recommends that HUD undertake a study of definitions to determine what, if
any, changes, through administrative action or legislation, need to be made
to bring definitions, technical requirements, and standards into compliance
with modern precepts, and to ensure that what we ask members of the housing
community to do continues to represent the most effective allocation of public
and private resources.
Chapter Ten Transportation
Introduction
In a June 18, 2004, letter to Congress,
NCD recognized there has been significant progress in the accessibility of
public transportation systems since enactment of the Americans with Disabilities
Act and the supporting provisions of the Transportation Equity Act. Yet a
substantial portion of the disability population is still unable to participate
fully in many aspects of community life as a result of inadequate accessible
transportation options. To continue the progress experienced to date in the
growth and accessibility of the nation's transportation system, to address
the problems and barriers remaining for people with disabilities in accessing
transportation, and to meet the transportation challenges of the future,
NCD presented four recommendations for congressional support: (1) House bill
(H.R. 3550) approach to funding for New Freedom Initiatives that establish
transportation solutions as a separate and distinct program with more flexibility
and greater opportunities than other proposals by offering consumer-directed,
innovative transportation solutions and allowing for the development of promising
practices; (2) House bill approach to funding for Project Action, a highly
successful federal program that brings transportation providers and people
with disabilities together to improve access to transportation; (3) express
inclusion of individuals with disabilities in all aspects of transportation
plans and projects, as was done in identified sections of the House bill;
and (4) provisions in the House bill that call for coordination of transportation
resources at the federal, state, and local levels. (See http://www.ncd.gov/newsroom/correspondence/2004/conrad_06-18-04.htm.)
Transportation is often thought of as
a subject in its own right. It is governed by laws and administered by agencies
with the word "transportation" in their titles. While it is, of course, true
that transportation is a distinct subject matter, it is equally true that
it interacts with every other subject we consider.
Transportation options and systems affect
our ability to get to school or work, to obtain health care, or to live independently
in the community. Without recognition of its role in each of these areas
of our lives, we cannot hope to understand the importance or grasp the complexity
of the issues raised in any discussion of transportation policy in our country.
This chapter on transportation addresses
the legal framework surrounding disability-related transportation issues,
examines air travel, discusses issues and programs under the Transportation
Equity Act for the 21st Century, and addresses concerns related to paratransit systems.
The Legal Framework
Discussion of national transportation
policies and resources for Americans with disabilities requires consideration
of three important statutes: the Americans with Disabilities Act (ADA),131 the Air Carrier Access Act (ACAA),132 and
the Transportation Equity Act for the 21st Century (TEA-21),133 scheduled for reauthorization this
year. Responsibility for implementing regulations, administrative oversight,
and budgetary appropriations is distributed among at least three cabinet-level
departments and many sub-agencies.
For this reason as much as for any other,
NCD's assessment, while beginning with commendation for a number of ongoing
implementation strategies and innovative efforts undertaken by the agencies
involved, must also draw attention to emerging transportation issues that
do not yet clearly fall within the scope of existing agency jurisdictions
or oversight responsibilities.
Community Integration
Requirements for accessible mass transit,
antidiscrimination rules, and paratransit services have contributed greatly
to the ability of Americans with disabilities to lead full lives within their
communities; but shifting demographics, changing patterns of residency and
employment, and cutbacks in mass transit may all be combining to blunt this
positive momentum. Given the focus of NFI on transportation access, and given
the inclusion in recent federal budget proposals of important seed funds
and authorization for innovative and experimental, community-based transportation
projects, it would be especially regrettable if unmet challenges undermined
the progress we have made.
One such new challenge exists in the
area of paratransit, which was designed to provide parallel transportation
access to people with disabilities who, for various reasons, cannot access
or use fixed-route transit. But will paratransit's relevance be reduced if
the role of fixed-route mass transit in our society continues to decline?
Data from the 1990s suggests that the average commuting distances Americans
traveled to and from work grew. With increasing suburban sprawl, Americans
are not abandoning their use of the private automobile, and in many cases
have no practical alternative to it. Soaring real estate markets continue
to push moderate and low-income workers further and further from centers
of employment in their search for affordable places to live. Funding cutbacks
have resulted in the reduction or elimination of many mass transit options
for all people.
While these circumstances create problems
for many people, their impact may prove especially severe for those with
disabilities who cannot drive or who lack the funds to purchase accessible
vehicle modifications. Indeed it may not be too great a stretch to suggest
that in today's America, inability to drive (most often resulting from disability)
is itself a major disability, leading as it does to limitations of almost
every major life activity and of every form of participation in economic,
community, and family life.
We will discuss paratransit in more
detail in the final section of this chapter. For the moment, the question
must be asked whether a paratransit system that provides alternatives to
fixed-route transit is meeting a sufficient part of the need for transportation
alternatives where fixed-route service itself is a meaningful option for
fewer and fewer people. Paratransit essentially duplicates fixed-route service
so far as hours of service, coverage areas, and other features are concerned.
If the fixed-route service is declining, it is inevitable, if paradoxical,
that paratransit service will decline as well.
Olmstead
Considerable controversy surrounds the
planning efforts undertaken by states and the leadership and resources offered
by the Federal Government in meeting the community-integration requirements
of ADA as embodied in the Supreme Court's 1999 Olmstead decision.134 Incorporation of transportation
as an integral element of Olmstead planning appears to be less widespread
than is necessary to make community integration successful. Anecdotal information
suggests that for substantial numbers of people (particularly people living
in depopulating agricultural and rural areas), the decision to enter a nursing
home may frequently be predicated in whole or in part on the unavailability
of adequate transportation and to the isolation and vulnerability that follow
in its wake, rather than to any literal need for the care services such institutions
may offer.
The time may be at hand when, if we
are to decrease unnecessary institutionalization and promote return to the
community where possible, we must take a fundamental and thorough look at
the role of transportation in our society. Many variables that are not initially
obvious bear heavily on this matter. Even such questions as the availability
of volunteer drivers are adversely influenced by current automobile insurance
practices that make it increasingly risky for community volunteers to transport
passengers in private vehicles. This risk is not entirely offset by recent
volunteer liability protection laws.
Accordingly, NCD recommends that the
Administration undertake a comprehensive study into the need for, availability
of, and prospects for transportation resources and services in this country,
not as an end in themselves but as they relate to the achievement of a variety
of other national priorities and objectives, with a view to developing and
documenting measures for assessing the impact of transportation investments,
resources, and facilities on the participation of people with disabilities
in employment, education, and community living. The report on personal transportation
discussed in the next sub-section could have furnished a model for such a
study, but regrettably, it fails to connect the dots or facilitate coordinated
problem solving.
Assistive Technology
Mobility Devices
The Assistive Technology Mobility Devices
(ATMDs) Task Force report, ordered by presidential executive memorandum in
February and published in August 2003,135 raises
important questions about the necessary relationships between transportation
planning and other programs. While the task force dealt with funding sources
for, and access to, personal ATMDs (powered wheelchairs, scooters, manual
wheelchairs, etc.), the charge of the task force was too limited in scope
to adequately address the full range of issues and barriers confronted by
people with disabilities in obtaining ATMDs.
Although commissioned out of the recognition
that personal mobility is an element of transportation and the further recognition
that transportation plays a key role in access to education and employment,
the ATMD report does not offer a comprehensive approach for improving access
to appropriate ATMDs for people with disabilities. The report does contain
valuable information about the efforts underway at several federal agencies
regarding improving access to ATMDs, and a helpful list of potential ATMD
funding sources. NCD recommends that the ATMD Task Force be reconvened and
given a broader charge to evaluate the aggregate impact of all personal mobility-related
policies and programs on the ability of Americans with disabilities to get
to and from work or school on terms of rough equality with other Americans,
and to make comprehensive recommendations to ensure our nation is meeting
the need for ATMDs to enhance access to education and employment for all
people with disabilities.
Air Travel
Broadly speaking, the process of traveling
by air begins with making a reservation and ends with arrival at one's destination.
For people with disabilities, each step of this process poses some issues
that differ from those faced by other travelers.
Civil Rights
and Nondiscrimination
A variety of laws and oversight agencies
are implicated in the effort to ensure access to air travel for people with
disabilities. Depending on whether an air carrier, airport operating authority,
terminal business concession, or contractor is involved, issues of access
to air travel may be governed by Titles II or III of ADA, Section 504 of
the Rehabilitation Act, ACAA, or even state and local law. Likewise, on the
federal level, a number of agencies, ranging from the Department of Transportation
(DOT), the Department of Homeland Security (DHS), and DOJ, as well as various
sub-agencies, may have responsibility.
Because of the potential confusion arising
from this complexity, NCD, in last year's progress report, requested clarification
on several key questions of jurisdiction and agency responsibility. NCD appreciates
DOT's response to our inquiry. Significant further guidance is needed if
air travel consumers, airlines, and airports are to fully understand their
rights and responsibilities.
In previous reports, NCD has commended the combined work
of several federal agencies in producing fact sheets and other materials dealing
with the interplay between disabled passenger rights and airport security.
We now believe that a new type of fact sheet is urgently needed, prepared with
input from DOT's Office of General Counsel's Office of Aviation Enforcement
and Proceedings, the Federal Aviation Administration (FAA), the Transportation
Security Administration (TSA), and DOJ's Disability Rights Section, addressing
actual or foreseeable situations encountered in the course of air travel. The
fact sheet should specify the following for each situation:
What
service does the passenger have a right to expect?
What
rights does a passenger have to refuse some or all demands or proffered services?
What
rights does a passenger have in connection with services offered to the public
by various components of the travel industry before and outside the airport?
What
entity or official at the airport can be contacted if the required service
is not provided or the passenger believes that discrimination has occurred?
What
documentation or other records can or should be sought or created?
What
recourse is available through federal oversight agencies, and how can such
agencies be contacted (by phone and, if so, what hours, in writing, or by email)?
What
potential remedies are available, and what follow-up is appropriate?
The scenarios included in the new fact
sheet, together with the way these questions are answered, should be extremely
specific and field-tested with passengers, as well as staff of airlines,
airports, and private vendors to make certain the scenarios are clear.
ACAA Enforcement
During 2003, DOT's Office of Aviation
Enforcement and Proceedings instituted a number of actions against domestic
airlines for various violations of ACAA.136 Most
of these arose from consumer complaints, but at least one resulted from the
agency's proactive investigation.137 Each
case was resolved by a settlement, which included imposition of a fine against
the carrier. As part of the settlements, however, these fines were waived,
provided that the funds would be used for staff training or other ACAA awareness
and compliance activities.
While NCD agrees that cases should be
resolved as quickly and equitably as possible, and that fines generally represent
a far less productive use of resources than staff training or education,
we are nevertheless concerned that such settlements, unless accompanied by
appropriate follow-up, may inadvertently send the message to air carriers
that ACAA violation bodes no serious consequences. NCD is concerned about
the absence from published reports about the settlements of any information
about monitoring or follow-up aimed at ensuring full and continuing adherence
by the carriers to the terms of their agreements. NCD is also concerned about
the apparent lack of any clear statement from DOT in the context of these
settlements that repeated violations, violations that jeopardize passenger
health or safety, or violations that reflect severe disregard for passenger
dignity will be viewed and dealt with more harshly.
For this reason, while favoring an approach
that emphasizes technical assistance, customer and staff education, and cooperative
effort, NCD recommends that in order to make the ACAA complaint process meaningful
for both passengers and carriers, DOT make clear by regulation or other appropriate
advisory that serious or repeat violations of the law will and must be dealt
with by imposing significant sanctions, and not merely by obliging carriers
to use fine remittances for activities that under the law they already should
have been carrying out.
Ticket Machines
and Other Technologies
From devices for weighing and measuring
baggage, to self-service cafeterias, to automated monorails, airport passenger
services and airport commerce are making increased use of technology. More
and more, this technology allows or requires passengers to interact directly
with various devices.
One labor- and time-saving technology
that has proved particularly popular is the airport ticket machine used for
paying for tickets with credit cards and for issuing boarding passes. While
these machines have unquestionably resulted in significant time savings for
many passengers, they have also created significant new disparities between
the travel experiences of those people for whom they are a convenience and
those to whom they are inaccessible. As airlines continue to reduce the number
of counter agents, these new inequalities can only grow.
Because such machines are inaccessible
and unusable by persons who are blind and potentially by persons with other
disabilities, NCD, in last year's annual progress report, raised the question
of which law governed these machines (ADA or ACAA). In a letter to the Council,
DOT indicated that these machines were governed by ACAA.138 Acknowledging that their inaccessibility
and the inequalities that result are a matter of legal concern, the Department
suggested that passengers could speed up their check-in process by using
first-class ticket lines. Even as a short-term measure, we believe this suggestion
would neither equalize waiting times nor remedy fundamental inequality.
Resentment by other passengers of apparent
line-jumping, along with inevitable disputes over who did and did not have
a relevant disability, would certainly arise. Ongoing training efforts would
be required to ensure that airline personnel were aware of the policy and
followed it. Moreover, the increasingly prevalent, low-cost, no-frills airlines
typically offer only one class of service, so have no first-class lines at
all.
From bank ATMs to mass transit fare
machines, building directories, and voting machines, access technology is
widely in use that allows people with disabilities to independently access
and use a variety of information technology and terminal machines (ITMs).
Given the wide deployment, broad experience, and demonstrated cost effectiveness
of accessible electronic and information technology, there is absolutely
no reason to believe that airport ticket machines cannot be made accessible,
and there is no justification for the apparent failure of the airline industry
to investigate, let alone attempt to do, this given that airport ticket machines
came into use long after access technology had been successfully deployed
and widely publicized in a variety of comparable settings. NCD recommends
that DOT immediately require, as a critical dimension of ACAA compliance,
that all ticket machines hereafter designed, installed, or modified be made
accessible. Because machines are being rolled out rapidly, failure to act
immediately could result either in the long-term loss of a precious opportunity
to achieve equality of access to air travel, or in retrofitting costs that
will greatly exceed what doing the job right in the first place would have
cost.
As suggested at the beginning of this
sub-section, ticket machines are not the only example of interactive technology
coming into increasing use at airports. Passengers may soon be weighing their
own carry-ons, measuring their check-ins, and even screening their own checked
bags at security kiosks and sensors. They may be interacting with biometric
identification systems, using specialized identification documents to qualify
for less intrusive screening, and purchasing their snacks from self-service
or even automated food-service facilities. All of these new technologies,
and others now on the drawing board, have potentially important access and
dignity implications for passengers with disabilities. Within the framework
of current or needed law and technology development, DOT must find means
to anticipate and address the implications of new labor-saving and security-enhancing
technologies for their impact on travelers with disabilities.
Accordingly, NCD recommends that FAA,
the Secretary of Transportation, and TSA develop mechanisms to ensure that
whenever new airport technology is designed or tested, passengers with disabilities
are included in the evaluation and testing processes. Such participation
and the findings that result must be a standard, formal, and documented part
of the development and testing phases of all new airport technology.
The Transportation
Act
With the anticipated reauthorization
of TEA-21139 scheduled for 2003,
NCD's 2002 Annual Progress Report made recommendations for provisions
that we believe should be retained in or added to the law. The law, which
is most commonly and most significantly called the nation's highway bill,
was not rewritten during the time expected.
NCD recognizes that as a practical matter,
our opportunity for further input to the reauthorization debate may be limited.
Many provisions of the bill are already determined, and the bill was expected
to be enacted before publication of this report. Bearing in mind the
many and important ways in which the legislation influences the lives of
Americans with disabilities, we wish to urge consideration by Congress of
several key points, whether in this bill or in other related legislation.
Budget
NCD has been heartened by the inclusion
of funds in Administration budget requests for NFI appropriations for innovative
community-based transportation experiments and demonstrations designed to
increase community participation for people with disabilities. NCD urges
the Administration to continue its support for such programs in its FY 2005
budget proposal and urges Congress to include such funds in any continuing
resolutions or regular appropriations it adopts for the remainder of FY 2004.
We also urge Congress to include appropriate funding authorization in TEA-21
reauthorization and in its FY 2005 budget resolution.
As important as the inclusion of maximum
possible funding for the conduct of NFI initiatives and projects is, though,
something else is of great importance. NCD recommends that Congress, in addition
to adequate funding authorization, include in the transportation legislation
authority for NFI funds to be used for a wide variety of programs, including
operating assistance, and that funds not be limited to the purchase or modification
of vehicles.
In this connection, we also wish to
note the Section 5310 program that provides funds for a variety of transportation
projects aimed specifically at enhancing transportation access and options
for people with disabilities, particularly in underserved areas, that is
operated primarily through not-for-profit entities. NCD recommends that the
funding and authority for this program be retained and optimized by Congress,
and that its resources continue to flow to the nonprofit sector, without
restrictions or limitations that would in any way inhibit the development
of projects that serve people with disabilities in an integrated or community-based
setting.
Some may argue that, though small, we
cannot afford these expenditures in light of current budgetary pressures
on domestic spending. However, in view of the large size and many interlocking
purposes, including job creation, of the federal highway program, these small
but highly leveraged expenditures on behalf of community integration and
personal empowerment of people with disabilities can hardly be regarded as
less worthy than many of the other projects supported under the bill.
Olmstead
Much controversy surrounds the adequacy
of states' responses to the Olmstead decision. One 2003 study indicated
that many states did not have adequate plans in effect.140 In
view of the centrality of transportation to the ability to live and remain
in the community, as well as its central role in employment, education, and
receipt of health care, NCD believes the time has come when full and formal
integration of transportation planning and other services and systems must
be made obligatory. For this reason, NCD recommends to Congress that, just
as the level of federal highway funds over the years has been tied to state
adoption of many national policies and priorities ranging from lowered blood
alcohol levels to mandated seatbelt use, so now the availability of highway
funding should be partially conditioned on state efforts to meaningfully
incorporate transportation policy and agencies into the Olmstead implementation
process. Accordingly, NCD recommends that the Secretaries of Health and Human
Services and of Transportation require joint certification of such incorporation
each year before states' full allocation of highway funds can be released.
Other Accessibility
Issues
As discussed in earlier reports, there
are a number of key overlaps, points of connection, and areas for coordination
between TEA-21 and ADA. For example, it is vital that pedestrian access and
safety, including for people with disabilities, are incorporated into the
design of federally supported transportation projects. Such measures include
safe and accessible pathways between bus and light-rail stations and the
commercial, cultural, or other facilities they serve.
The law must also strengthen its support
for research into traffic management systems that appropriately balance the
unimpeded flow of vehicular traffic with the safety of those seeking to cross
busy thoroughfares. In this regard, NCD is particularly mindful of the support
for accessibility-related pedestrian-safety research emanating from a number
of federal agencies and conducted under a number of program rubrics.
Against this backdrop, NCD recommends
that Congress vigorously support research into issues ranging from audible
traffic signals and textured surfaces to traffic light placement and intersection
design. The costs of such research and thereafter for strong federal financial
support for the dissemination of successful strategies and models are small
and become even smaller when balanced against the number of lives that will
be saved.
In this connection, a further issue
relates to the efficacy of state statutes known as "white cane laws." Adopted
between the 1930s and 1960s, these statutes generally impose obligations
on motorists to yield the right-of-way to blind pedestrians using white canes
or dog guides. These statutes also modify the allocation of responsibility
when accidents occur, holding motorists more strictly responsible than when
they hit other pedestrians.
Anecdotal reports reaching NCD from
around the country indicate that these statutes are not well known to drivers
or sometimes even to law enforcement officers, and that even when known are
rarely applied or enforced. Indeed, the pattern in these disturbing reports
is sufficiently consistent to suggest the belief on the part of some police
and prosecutors that blind people (and therefore by implication surely others
with disabilities as well) who venture out on the streets alone are inherently
negligent and do so at their own risk.
Admittedly, road systems, traffic laws,
and driver attitudes have changed a great deal since these laws were passed,
but until the extent of current enforcement and impact can be better understood,
the possible need for their updating or revision cannot be adequately assessed.
Therefore, NCD recommends that Congress authorize a study of the contents,
utilization, impact, relevance, and possible need for modernization of state
white cane laws.
Paratransit
The first section of this chapter raised
questions about the future viability of paratransit in a changing transportation
environment. Concerns also exist, however, regarding the way paratransit
works today, and how well it is meeting its current responsibilities.
In last year's report, NCD expressed
concerns about the practice unofficially but commonly known as "conditional
eligibility." This practice, also known as "trip eligibility," involves determining
eligibility for paratransit service on a trip-by-trip basis. Trip eligibility
applies when an individual is capable of making some trips using fixed-route
service, but is in need of paratransit service for other trips. The paratransit
provider determines when paratransit service will actually be provided.
In its response to our inquiries on
this point, DOT made clear its belief that adequate monitoring and oversight
are in effect to ensure that trip eligibility is being implemented in a legally
acceptable fashion. DOT is satisfied that both the procedures and the criteria
used to evaluate trip requests are consistent with the law.
NCD is concerned that much more needs
to be known about how trip eligibility works, especially in light of indications
that its use is increasing and will increase further as demand for services
grows. Moreover, to say that trip eligibility is being administered within
the law still does not tell us how paratransit operators are prioritizing
various trips or what aggregate impact their decisions are having on the
lives of Americans with disabilities.
For this reason, NCD recommends that
DOT undertake intensive inquiries in a random sample of locations in order
to determine what the real impact of trip eligibility has been and whether
the practice is enhancing the independence of people with disabilities.
Conclusion
This chapter has addressed changing
transportation needs as they affect people with disabilities in such areas
as paratransit and federal transportation legislation. It has examined the
need for new resources and initiatives in the air transportation arena, and
it has discussed informational needs critical to the formulation of public
policy in the transportation sector. It has also addressed the need for integration
of transportation and other major areas of planning if the goals of NFI are
to be fully achieved.
Recommendations
Summary
Recommendations
to Congress
Recommendation 10.1-NCD
recommends that Congress, in addition to adequate funding authorization,
include in the transportation legislation authority for NFI funds to be used
for a wide variety of programs, including operating assistance, and that
funds not be limited to the purchase or modification of vehicles.
Recommendation 10.2-NCD
recommends that the funding and authority for the Section 5310 program be
retained and optimized by Congress, and that its resources continue to flow
to the nonprofit sector, without restrictions or limitations that would in
any way inhibit the development of projects that serve people with disabilities
in an integrated or community-based setting.
Recommendation 10.3-NCD
recommends to Congress that, just as the level of federal highway funds over
the years has been tied to state adoption of many national policies and priorities
ranging from lowered blood alcohol levels to mandated seatbelt use, so now
the availability of highway funding should be partially conditioned on state
efforts to meaningfully incorporate transportation policy and agencies into
the Olmstead implementation process.
Recommendation 10.4-NCD
recommends that Congress vigorously support research into issues ranging
from audible traffic signals and textured surfaces to traffic light placement
and intersection design.
Recommendation 10.5-NCD
recommends that Congress authorize a study of the contents, utilization,
impact, relevance, and possible need for modernization of state white cane
laws.
Recommendations
to the Administration
Recommendation 10.6-NCD
recommends that the Administration undertake a comprehensive study into the
need for, availability of, and prospects for transportation resources and
services in this country, not as an end in themselves, but as they relate
to the achievement of a variety of other national priorities and objectives,
with a view to developing and documenting measures for assessing the impact
of transportation investments, resources, and facilities on the participation
of people with disabilities in employment, education, and community living.
Recommendation 10.7-NCD
recommends that the ATMD Task Force be reconvened with the charge of going
beyond the list of agencies and their statements of what they do, to an assessment
of whether, in fact, there are any Americans who face barriers to education,
employment, or health care that could be overcome by the heightened availability
of ATMD for personal transportation, and if so, how federal programs can
be modified or better coordinated to bring about greater access.
Recommendations to DOT
Recommendation 10.8-NCD
recommends the development of a fact sheet that addresses actual or foreseeable
situations encountered in the course of air travel, and for each, lists the
key points included in the text accompanying this recommendation.
Recommendation 10.9-NCD
recommends that in order to make the ACAA complaint process meaningful for
both passengers and carriers, DOT make clear by regulation or other appropriate
advisory that serious or repeat violations of the law will be and must be
dealt with by imposing significant sanctions, and not merely by obliging
carriers to use fine remittances for activities that under the law they should
have been carrying out already.
Recommendation 10.10-NCD
recommends that DOT immediately require, as a critical dimension of ACAA
compliance, that all ticket machines hereafter designed, installed, or modified
be made accessible.
Recommendation 10.11-NCD
recommends that FAA, the Secretary of Transportation, and TSA develop mechanisms
to ensure that whenever new airport technology is designed or tested, passengers
with disabilities are included in the evaluation and testing processes.
Recommendation 10.12-NCD
recommends that joint certification of incorporation of transportation policy
and agencies into the Olmstead implementation process be required
by the Secretaries of Health and Human Services and of Transportation each
year before states' full allocation of highway funds can be released.
Recommendation 10.13-NCD
recommends that DOT undertake intensive inquiries in a random sample of locations
in order to determine what the real impact of trip eligibility has been,
and whether the practice is enhancing the independence of people with disabilities.
Chapter Eleven
Assistive Technology and Telecommunications
Introduction
Technology in general and telecommunications
in particular are the daily tools with which we live our lives. Who could
imagine going through an ordinary day without using a telephone, a computer,
an electrical appliance, a radio or TV, or a motor vehicle? Technology has
become an increasingly central tool for employment, education, and personal
communication for all Americans; but for people with disabilities, its potential
benefits if accessible and usable, and its potential harm if not, may well
be magnified beyond what most people experience.
This chapter discusses a number of technology
issues currently before key governmental decision makers that have highly
significant implications for people with disabilities. The first section
focuses on the Assistive Technology Act. The next section addresses several
key issues before the Federal Communications Commission (FCC). The final
section concerns Section 508 of the Rehabilitation Act.
The Assistive
Technology Act
The Assistive Technology Act of 1998,141 successor to the Technology-Related
Assistance for Individuals with Disabilities Act of 1988, has technically
expired, but, pending reauthorization, has been kept in operation through
the appropriations process. That is, although the statutory authorization
for the program has sunset, funds have been appropriated for two years in
a row to keep the program components in operation. The program has three
components, including, under Title I, the state-based AT programs operating
in all 56 states and territories. The AT Act also supports several protection
and advocacy (P&A) programs that also operate in all states and territories.
Finally, the AT Act provides the authority for the alternative financing
loan program that allows states to establish AT loan programs with a combination
of federal and state matching funds.
Based on what is believed to be the
crucial role played by the AT Act programs, NCD recommends that Congress
reauthorize the program this year and provide not only an additional year's
funding, but statutory authorization for the program's existence, so that
a measure of stability and the means to engage in planning and capacity-building
can be restored. While it may be feasible to use continuing resolutions to
extend the operation of certain programs pending longer-term decisions and
arrangements, this approach cannot be used for long for small and vulnerable
programs such as those under the AT Act. Unlike larger programs, whose continuation
in one form or another is ensured, year-to-year extension-by-funding of the
AT Act has left open the fundamental question of whether the Act and its
important work would be continued at all and, based on discussions with AT
Act personnel, has engendered great instability.
As indicated by our recommendation above,
NCD believes that the work of the AT Act has contributed in important and
irreplaceable ways to the incorporation of AT and universally designed technology
into the consciousness and practices of state governments. Without the state-based
AT Act programs, the interests and the cause of technology on behalf of people
with disabilities might receive scant attention and be little understood
by state and local decision makers or by the AT projects' many community
partners.
Through such activities as technology
demonstration sites, conferences, informational hotlines, equipment recycling
programs, and other forms of outreach, the state-based AT Act programs have
also provided invaluable information and resources to individuals with disabilities,
employers, educators, and others.
If the AT Act program were to go out
of operation, these valuable functions would be put at risk and in many cases
would cease to be performed. Although the projects are not highly visible
and sometimes not easily documented, NCD is convinced that the role played
by the AT Act projects, while differing from state to state, remains crucial.
Although the technical assistance these projects offer could theoretically
be provided by others, it is not at all clear who those others would be or
how they would be able to parlay the expertise and credibility the AT Act
projects have built up over the years. Likewise, while independent entities
have been created to operate loan funds in the states where they exist thus
far, the AT Act projects have been instrumental in launching these programs
and helping to form the management entities. Hence again, NCD is not certain
who would play this role in the remaining states where AT loan funds, which
are an important component of the President's NFI, have yet to be established.
The Federal
Communications Commission
At first it may be difficult to imagine
how the FCC could find itself at the center of a number of the most pressing
disability rights debates of our day. Yet, when one considers the growing
importance of telecommunications technology in all our lives, this regulatory
agency's growing and unique importance becomes easier to understand.
Cell Phone Access
for Hearing Aid Users
NCD has taken issue with the action,
or what was believed to be the inaction, of the FCC in a number of contexts
over recent years. For this reason, NCD is particularly pleased to begin
this section by commending the Commission for the important steps it took
in 2003 to ensure the accessibility of cell phones for people who use hearing
aids. Acting under the Hearing Aid Compatibility (HAC) Act, the FCC initiated
a process-with timelines, industry performance targets, and monitoring provisions-that
should result in the availability in the market of a significant range and
number of accessible handsets.142 NCD
applauds both the Commission's commitment and its approach.
Section 255
Precisely because of the FCC's energy
and focus in responding to the aspirations of hearing aid users for cell
phone access in this wireless age, NCD remains saddened and puzzled by the
Commission's seemingly lesser engagement in the application of these same
values to the implementation of Section 255 of the Telecommunications Act
of 1996.143 Data provided by the FCC indicates
that 145 informal complaints and one formal complaint were filed during 2003.
Apart from the number of these that related to telecommunications equipment
versus the number concerning telecommunications services, NCD has no information
about how these complaints were resolved or what role was played by the Commission;
and whether the outcomes vindicate the public interest remain open questions.
Based on anecdotal information reaching
us, it appears that the FCC's policy might be to leave it largely to the
parties to resolve Section 255 disputes between themselves. Given the disparity
in resources and information that individual consumers and large telecommunications
companies bring to the fact-finding process and the negotiating table, NCD
has long believed that the Commission needs to take a more active role. Therefore,
NCD recommends that the FCC publish standards for the review of proposed
Section 255 settlements to ensure that they are in the public interest, and
that they reflect accurately an understanding of the relevant and applicable
technology and law on the part of the parties. Put simply, the Commission
has an obligation to make sure that Section 255 complainants are not overreached
by respondents.
In a related vein, there has been no
indication in many years that the FCC engages in any systematic process or
periodic review to determine exactly what accessibility features are now "readily
achievable" that formerly might not have been. For instance, the one formal
complaint before the Commission during 2003 resulted in a settlement between
a consumer and a cell phone manufacturer, which led to the introduction into
the market by the manufacturer and a cooperating service provider of a cell
phone handset incorporating a number of accessibility features critical to
effective phone use by customers who are blind.144
Since the law does not require manufacturers
or service-providers to implement telecommunications accessibility features
that are not "readily achievable,"145 and since there is no indication that
the FCC put any pressure on the respondent manufacturer to settle the complaint
advantageously to the complainant, NCD can only conclude that the state of
technology and design have advanced to the point where the manufacturer concluded
that implementation of the enhancements (in this case, voice output of a
substantial proportion of cell-phone screen information to make the phone
accessible to blind persons) is now readily achievable.
If inclusion of speech-output in cell-phone
handsets is now readily achievable, NCD wonders why the Commission has not
more actively encouraged its incorporation in cell phones, given the fact
that for one group of customers with disabilities it represents the only
viable strategy for accessing and utilizing most phone features and functions
with any degree of reliability or speed. At this point, however, the Commission
appears to have no mechanism for monitoring the state of technological development
in this or other areas, and little apparent interest in setting forth standards
and expectations that, based on what is readily achievable, manufacturers
and service providers will be expected to meet.
Section 255 was adopted precisely because
the marketplace would not readily respond to the needs of low-incidence populations
with disabilities and because of the critical importance of bringing the
benefits of telecommunications technology to all Americans. Initially, through
the Market Monitoring Reports that the Commission used in the first year
of Section 255 implementation,146 it
was possible to assess the state of technology and the level of need in any
given major product area. With the discontinuance of such studies and the
failure to develop any alternative, this vital resource has been lost. Accordingly,
NCD recommends that the FCC revive the Market Monitoring Reports as a tool
for assessing the needs and potential for greater product accessibility in
various key areas of telecommunications technology.
Even as NCD calls for more effective
implementation of Section 255, the issues surrounding its interpretation
and application grow more complicated than ever before. Today, the issues
of Section 255 implementation and enforcement must be addressed against the
increasingly complicated backdrop of broadband. Historically, broadband services
have been denominated as "information" services. This is important for Section
255, because it applies to "telecommunications" services. As a result, great
concern has been expressed over whether the protections of Section 255 have
any role to play in the development of broadband.
Mindful of these concerns, the FCC issued
a Notice of Proposed Rulemaking.in 2002, inviting comment on, among other
things, how and whether this distinction between telecommunications and information
services would or should affect Section 255, and, both directly and by implication,
posing the question whether the definition of information services needed
to be crafted in a way that protects the essential right and aspiration of
people with disabilities to telecommunications and Internet access.147 In
another manifestation of what can be characterized as strange silence, the
Commission as of this writing had yet to publish any findings, institute
any rulemaking, issue any orders, or otherwise follow up in any discernible
way on this inquiry. Meanwhile, the dramatic growth, and the Commission's
unqualified support for, Voice Over Internet Protocol (VOIP) technology has
put into question even the residual protection of accessibility rights that
would remain if all broadband were exempt from Section 255.
Traditionally, one widely used rule
of thumb for distinguishing "telecommunications" from "information" services
had to do with the medium being transmitted. Generally, voice communication,
which typically occurred over the telephone, was considered to be telecommunications,
whereas transmission and receipt of data and video were more often regarded
as falling within the information services domain. But now, through VOIP,
even voice communication is migrating to the Internet, where, because of
the modes of transmission used, it may also fall outside the shrinking scope
of telecommunications.
Imagine if laws in this country banned
discrimination in the provision of horse-and-buggy services or steam railroad
transportation, but did not cover diesel trains, high-speed rail, interstate
buses, or air travel. The approach is inevitable toward a point where, if
the FCC does not take action in asserting some leadership and commitment,
Section 255 will be like a ban on discrimination in the provision of horse-drawn
transportation.
NCD believes the FCC possesses the authority
to apply Section 255 to VOIP. To that end, NCD recommends that the Commission
initiate the development of a record for use in a rulemaking procedure aimed
at applying Section 255 to VOIP. If the Commission believes it lacks this
authority, it should immediately join with NCD and with appropriate representatives
of the telecommunications industry and disability community to make recommendations
to Congress for the necessary legislation.
Closed Captioning
NCD commends the FCC for its approach
to the phasing-in, monitoring, and publicizing of requirements regarding
the amount and types of TV programming that must be captioned. A new stage
in this phase-in process was scheduled to begin January 1, 2004. NCD also
commends the Commission both for developing procedures whereby exemption
requests can be filed and for its continued commitment to increased captioning
in the face of these challenges.148
But this recent emphasis on what program
producers and distributors must do should not lead to complacency. For, once
again, technological change may be poised to threaten hard-won gains. Changes
in over-the-air, cable, and satellite television technology, high-definition
TV, and other developments give grounds for concern that current methods
for creating, transmitting, and receiving captions may come under pressure
and may need revision. Rather than waiting for issues to arise and rather
than taking a piecemeal approach, NCD recommends that the Commission initiate
regulatory proceedings designed to anticipate all the technological issues
that may be reasonably foreseeable in the continued availability and increased
utilization of captioning, and promulgate rules that will ensure, while there
is still time for manufacturers and carriers to respond effectively, that
the availability and quality of captioning will be in no way compromised
or endangered.
Video Description
Video description does for people who
are blind what captioning does for people who are deaf. Through the insertion
of spoken narrative into gaps in the program dialogue, video description
(also sometimes called descriptive video or audio description) provides access
to the key visual elements of the program.
Pursuant to the Telecommunications Act
of 1996, the FCC conducted a study and, based on that study's results, implemented
minimal requirements for video description in broadcast and cable network
TV programming. Opposed by various groups, including the motion picture production
industry, these requirements were challenged and struck down by the courts
in November 2002 on the grounds that only the study, not follow-up implementation
of video description requirements, was authorized by the statute.149
In the 2002 annual report, NCD urged
the FCC to seek the necessary legislative authorization from Congress to
overturn this court decision and to allow the Commission to promulgate reasonable
requirements for video description. Without Commission support and leadership,
the prospects for enactment of such legislation are negligible.
NCD is unaware of any moves by the FCC
in this direction. It is not clear that the Commission has even shared with
Congress the data on the basis of which its original rules were promulgated,
and there is no indication that the Commission has surveyed advances in technology
occurring since the conduct of that research that may further reduce the
costs or other burdens associated with the provision of video description.
While NCD commends the Commission for
having sought to make video description available and appreciates its defense
of its rule in the courts, concern remains that the value of these efforts
will be largely nullified unless the Commission endeavors to educate Congress
as to the potential, feasibility, and need for video description. Accordingly,
NCD recommends that the FCC consult with interested industry groups and representatives
of the disability community, through its Consumer Advisory Committee or other
appropriate forums, with a view to developing recommendations for video description
legislation that can be submitted to and supported in Congress.
E-Rate
Since enactment of the Communications
Act of 1934, our nation has had a commitment to universal telephone service.
In recent years, that commitment has been tested in application to electronic
communications and Internet access. One means for preserving that commitment
and for bringing affordable telecommunications services to schools and libraries
in underserved areas with low-income populations has been the program known
as the E-rate.
Currently, schools and libraries applying
for discounts and funding under the universal service program, commonly known
as the E-rate, are not required to certify that the equipment and services
funded with the discounts or subsidies are accessible to users, library patrons,
students, or faculty with disabilities. Applicants are notified that they
may be subject to ADA and other accessibility civil rights laws (as one assumes
they are subject to all laws), but we know of no effort ever to have been
made by any responsible entity of the Federal Government, including the FCC
and the Department of Education, to make this possibility a reality.
It should be noted that in 2002, the
FCC did issue an advance Notice of Proposed Rulemaking (NPRM) seeking comment
on whether and how accessibility certification requirements should be imposed.150 Here again, though no time limits
apply to the closing of these dockets, no follow-up appears to have taken
place and the FCC has issued no information on the nature or number of responses
or comments that may have been received. NCD is concerned that no sense of
urgency surrounds this proceeding.
Because of their receipt of federal
financial assistance (including through the E-rate program itself), and in
view of the fact that many schools and libraries are public institutions
or public accommodations, it seems highly likely that many, if not most,
of the entities eligible to participate in the E-rate program are subject
to legal requirements for nondiscrimination and equal access to information.
Public schools and libraries subject to Title II of ADA, schools and libraries
receiving federal financial assistance within the meaning of Section 504
of the Rehabilitation Act, and private libraries serving as federal depositories
subject to Section 508 of the Rehabilitation Act are all likely to have accessibility
obligations under the law.
Apart from the basic equity arguments,
it may therefore be the case that by failing to require certification of
this compliance, the FCC, far from easing the burdens of E-rate recipients,
may be unwittingly leaving them open to the risk of litigation under these
or parallel state civil rights statutes. If and when, as surely will happen
sooner or later, citizens seek to assert their access rights to the information
technology and services provided with public subsidies under the E-rate,
neither the taxpayers nor the institutions that they challenge will have
benefited from the FCC's failure to do more than issue a notice essentially
to the effect that funds recipients are subject to the laws of the land.
The current notice requirement serves
to give applicants no useful information about what the law requires of them.
With the widespread exposure in the Federal Government and elsewhere to accessibility
standards, such as those required and widely in use under Section 508, there
is little occasion for the FCC or any other regulatory, oversight, or contracting
agency to defer enforcement for lack of a clear sense of what standards or
procedures to apply. Accordingly, NCD recommends that the FCC initiate a
rulemaking designed to require appropriate accessibility certification and
guarantees as a condition for receipt of E-rate subsidies.
Section 508
Since its adoption in its current form
as a component of the Workforce Investment Act of 1998,151 Section 508 of the Federal Rehabilitation
Act (Title IV) has been a subject of great interest. In the early days following
its enactment, as guidelines for its implementation were being developed
by the Architectural and Transportation Barriers Compliance Board (the Access
Board),152 and
at the time when these and the related regulations adopted by the General
Services Administration (GSA)153 came
into effect, there were those who hailed 508 as the dawn of a great new era,
and others who saw it as ushering in an era of chaos.
The greatest significance of Section
508 is that it undertook to harness the government's enormous purchasing
power on behalf of accessibility. By providing that the government purchase
accessible "electronic and information technology" (E&IT), Section 508
sought to incentivize the design, production, and use of accessible devices,
as well as to bring about adherence to accessibility standards by federal
and certain government-related Web sites. Section 508, like the rest of WIA,
was due for reauthorization in 2003, but that action was put off for a year
and the law was extended unchanged. NCD has heard nothing to indicate that
major changes in 508 are expected, nor does the Council wish to propose any
at this time. NCD does, nevertheless, regard it as important to try to assess
the impact the law has had thus far, and to identify strengths and weaknesses
that can help guide the efforts of the many public and private sector organizations
involved in its implementation and growth.
Monitoring
Overall, NCD wishes to express its appreciation
for the Administration's repeated expressions of strong support for Section
508 and for the values of inclusion it embodies and promotes. Primary monitoring
responsibility for Section 508 was vested in DOJ. The attorney general was
tasked with sending regular reports to the President and Congress reviewing
the performance of the government in enforcing the law and making such recommendations
for its modification as may be needed.
NCD has been concerned at the failure
of DOJ to issue a timely report in the last cycle. For this reason, NCD is
gratified to note that a data collection effort, undertaken by covered federal
agencies, was expected to result in the issuance of the statutorily required
report during 2004. NCD trusts this report will contain valuable information
and data that can be used in evaluating the impact of Section 508 and in
identifying areas where more technical assistance, monitoring, or other resources
need to be focused. NCD also recommends that the forthcoming DOJ report,
while maintaining the focus on progress toward Web site accessibility that
characterized DOJ's earlier report, place emphasis on the categories of equipment
covered by the law. NCD continues to believe that in tandem with the invaluable
technical information DOJ will be collecting, more process information is
also needed for a full assessment of Section 508's impact. For this reason,
NCD recommends that GSA, in conjunction with DOJ, undertake a study of such
matters as how and when federal agencies are utilizing the statutory exceptions
and defenses to the imposition of 508 requirements on particular procurements,
how these instances are being documented, how accessibility is being scored
in the evaluation of competitive bids in relation to other procurement requirements,
and whether agencies have developed plans for making information resources
accessible to appropriate staff or members of the public when the technology
that produces them cannot itself be made accessible.
Outstanding
Legal Issues
Although the combined research efforts
described above will go a long way toward describing the practices of federal
agencies and in measuring their success in implementing the law, these monitoring
projects will not answer several key questions that remain unresolved. Perhaps
the most pressing of these relates to this question: If Section 508, as a
law primarily aimed at providing access to information, requires the government
to use accessible E&IT, does it also require that the information produced
with such technology be accessible? For example, if a printer has to be independently
usable by an employee with a disability, must some provision be made so that
such employee, or the member of the public who receives a letter generated
on that printer, can access the information it produces? Similarly, if an
informational kiosk generates forms or other documents, must these be accessible
in the same way that the machine that produces them must be accessible?
This report is not the place to debate
the answer to these questions. Suffice it to say, there are plausible readings
of Section 508 that would support a "yes" answer in certain cases. Because
of the importance of this question, NCD recommends that DOJ undertake proceedings
to identify the subsisting interpretive questions surrounding Section 508
and that it provide authoritative indications of its views concerning the
answers.
Conclusion
This chapter discussed the need to extend
the Assistive Technology Act. It also reviewed the need for action by the
FCC in a number of areas of emerging technology and technology change that
have profound implications for the participation in society of Americans
with disabilities-commending the Commission for its actions in some instances,
making recommendations to address its inaction in others. Finally, this chapter
discussed informational and interpretive needs that must be addressed in
order for the law to be fully effective and understood.
Recommendations
Summary
Recommendation
to Congress
Recommendation 11.1-NCD
recommends that Congress reauthorize the Assistive Technology Act this year
and provide not only an additional year's funding, but also statutory authorization
for the program's existence, so that a measure of stability and the means
to engage in planning and capacity-building can be restored.
Recommendations
to the FCC
Recommendation 11.2-NCD
recommends that the FCC publish standards for the review of proposed Section
255 settlements to ensure that they are in the public interest and that they
reflect accurately an understanding of the relevant and applicable technology
and law on the part of the parties.
Recommendation 11.3-NCD
recommends that the FCC revive the Market Monitoring Reports as a tool for
assessing the needs and potential for greater product accessibility in various
key areas of telecommunications technology.
Recommendation 11.4-NCD
recommends that the FCC initiate the development of a record for use in a
rulemaking procedure aimed at applying Section 255 to Voice Over Internet
Protocol. If the Commission believes it lacks this authority, it should immediately
join with NCD and with appropriate representatives of the telecommunications
industry and disability community to make recommendations to Congress for
the necessary legislation.
Recommendation 11.5-NCD
recommends that the FCC initiate regulatory proceedings designed to anticipate
all the technological issues that may be reasonably foreseeable in the continued
availability and increased utilization of captioning, and to promulgate rules
that will ensure, while there is still time for manufacturers and carriers
to respond effectively, that the availability and quality of captioning will
be in no way compromised or endangered.
Recommendation 11.6-NCD
recommends that the FCC consult with interested industry groups and representatives
of the disability community, through its Consumer Advisory Committee or other
appropriate forums, with a view to developing recommendations for video description
legislation that can be submitted to and supported in Congress.
Recommendation 11.7-NCD
recommends that the FCC initiate a rulemaking designed to require appropriate
accessibility certification and guarantees as a condition for the receipt
of E-rate subsidies.
Recommendations
to DOJ
Recommendation 11.8-NCD
recommends that the forthcoming DOJ Section 508 report, while maintaining
the focus on progress toward Web site accessibility that characterized DOJ's
earlier report, also place emphasis on the categories of equipment covered
by the law.
Recommendation 11.9-NCD
recommends that DOJ undertake proceedings to identify the subsisting interpretive
questions surrounding Section 508 and that it provide authoritative indications
of its views concerning the answers.
Recommendation
to GSA
Recommendation 11.10-NCD
recommends that GSA, in conjunction with DOJ, undertake a study of such matters
as how and when federal agencies are utilizing the statutory exceptions and
defenses to the imposition of 508 requirements on particular procurements,
how these instances are being documented, how accessibility is being scored
in the evaluation of competitive bids in relation to other procurement requirements,
and whether agencies have developed plans for making information resources
accessible to appropriate staff or members of the public when the technology
that produces them cannot itself be made accessible.
Chapter Twelve
International Affairs
Introduction
NCD has long been concerned with the
impact of U.S. bilateral and multilateral relationships on both Americans
with disabilities and citizens with disabilities in other nations. This chapter
deals with mechanisms by which that concern can be expressed and addressed.
In 1996 NCD published a major report
on American foreign policy as it relates to this subject.154 In 2003 NCD revisited this issue in another major study.155 In addition, our study of the implementation
of the major civil rights statute, Section 504 of the Rehabilitation Act,
chose the Department of State as a federal agency for particular attention
and focus.156
While the issues confronting our foreign
policy and international commitments have undergone dramatic change in the
years since the 1996 NCD report, the opportunities for enhancing the status
of people with disabilities remain great and timely.
This chapter reviews the laws defining
the intersection between disability and foreign policy, discusses means for
incorporating disability rights concerns into foreign assistance programs,
discusses the particular role and implementation of Section 504 protections
in our international relationships, considers the status of the pending United
Nations Convention on the Rights of Persons with Disabilities, and suggests
the possibilities for positively influencing the practices of other nations
by harnessing technical assistance resources available in this country.
The Legal Framework
When speaking of the laws governing
American foreign policy, two principal sources of authority are in mind:
our own domestic laws, including the Foreign Assistance Act,157 that structure our relations with
other nations, and civil rights laws that bear on nondiscrimination and equal
access in the interaction between U.S. Government agencies and U.S. citizens.
In the case of programs operated by
the Department of State or other U.S. Government agencies in foreign nations
and that involve Americans abroad and citizens of such other nations, complex
questions regarding the scope and applicability of U.S. domestic civil rights
laws such as ADA also emerge. Broadly speaking, such civil rights laws can
apply in two ways. First, they help determine the opportunities and accommodations
available to American citizens either working for or otherwise involved with
State Department programs. Second, domestic civil rights laws can also apply
by imposing obligations or requirements on non-American recipients of U.S.
funds, overseas contractors, grantees, foreign governments, and others.
Any discussion of international disability
rights is also affected by internal law [of sovereign nations], including
bilateral and multilateral treaties, customary international law, and international
conventions (including the UN Convention on the Rights of Persons with Disabilities).
These dimensions of the subject will be further addressed in the last section
of this chapter.
Foreign Assistance
U.S. law imposes numerous requirements
and conditions that recipients of foreign aid must meet. It also includes
reporting requirements, such as the Department of State's annual Country
Reports, designed to assess performance and progress in a variety of areas,
including human rights. U.S. law also includes sanctions, in the form of
reductions in financial aid, trade preferences, or other relationships, of
either a mandatory or discretionary nature, when progress in various areas
is not sufficient. From drug interdiction to protection of ethnic and religious
minorities to opening of markets to U.S. products, our relations with other
nations are significantly influenced by their conduct in a number of key
areas of cooperation and responsibility.
While the question of how human rights
concerns can be most effectively advanced within this framework has never
proved simple, our nation has long recognized that only through promotion
of human rights and individual dignity throughout the world can these values
prevail. The key first step in elevating disability rights and opportunities
requires action to broadly instill and institutionalize the recognition that
these concerns are human rights issues. Well-developed models exist-for example,
in the areas of women's rights and development and in connection with vulnerable
populations, including nonmainstream religious, ethnic, or diverse racial
groups-that can be applied to people with disabilities.
In our previous reports NCD has made
detailed recommendations for the linkage of disability rights, as embodied
in major civil rights laws, to those individuals and organizations that implement,
and those that receive or benefit from, the range of foreign assistance programs
operated or funded by the United States. Some important progress has been
made by the Department of State in this area, and NCD wishes to note it here,
as well as to indicate our appreciation of the unique issues that the Department
faces in fully or consistently implementing reasonable accommodation and
accessibility policies. At the same time, it is precisely because of those
special difficulties that efforts must be sustained and intensified to overcome
the obstacles posed by work in the international arena.
Section 504
and ADA
NCD commends the Department of State
for the major steps it has taken to ensure equal opportunity, including in
overseas postings, for its employees with disabilities. In particular, NCD
notes the efforts to identify and meet reasonable accommodation needs in
the AT area before posting, and its efforts to publicize both the existence
of its reasonable accommodation program and the availability of recourse
if reasonable accommodations are not forthcoming.
NCD also commends the Department for
its Barrier-Free Access program, which attempts to make overseas diplomatic
facilities accessible and compliant with standards of physical and architectural
accessibility applicable to public buildings in this country. NCD understands
that the Department is not always free, even if it had the financial resources,
to implement needed modifications or to choose properties that meet all accessibility
requirements. Nevertheless, NCD recommends that the Department adopt a prospective
policy that would establish accessibility as a key criterion in the selection,
lease, purchase, modification, or occupancy of sites. Specifically, NCD recommends
that the Department of State require that all buildings and facilities hereafter
used by U.S. personnel or paid for with U.S. funds meet the same accessibility
standards as would apply to public buildings in the United States. The Secretary
of State should retain the authority to waive this requirement where specific
considerations of local law, security, location, or other considerations
make this unwise or impractical. In all such cases, a statement of the reasons
for the waiver should be maintained on file.
NCD also commends the Department for
requiring all grantees to certify their compliance with Section 504 of the
Rehabilitation Act.158 NCD
is concerned, however, about several points in this connection. First, NCD
is concerned with the mechanisms used by the Department to monitor compliance
with Section 504 and the availability of technical assistance to help covered
entities comply. Second, NCD believes that the reference to grantees should
be clarified, for if use of the term "grantees" is intended to draw a distinction
between grantees and others such as contractors, vendors, consultants, and
so forth, it would be too technical and narrow to be broadly effective. NCD
believes that all those who do business with the State Department and who
receive U.S. funds through State, Defense, Commerce or other departments' programs,
whether they are grantees, contractors, or otherwise, should be required
to comply and be assisted in complying with Section 504. They should also
be evaluated, in part, on their level of success in and commitment to meeting
this obligation. Accordingly, NCD recommends that government-wide regulations,
backed up by suitable monitoring and technical assistance, be put into place
requiring and empowering all overseas recipients of U.S. federal funds to
comply with the provisions of Section 504 in their use of such funds.
NCD recommends that the Administration
establish a national commission to review the entire range of U.S. international
assistance programs and other commitments under the Foreign Assistance Act
and other laws to determine the extent to which full access and participation
by persons with disabilities is incorporated in governing regulations, contract
terms, oversight, and reporting criteria. If guarantees of equal access and
opportunity are not incorporated in the governance or the oversight of any
program, the commission, which should include representatives of national
and international disability groups-including people with disabilities among
the participants-should make specific recommendations for the elevation and
recognition of these concerns.
To the degree that the recommendations
can be implemented by executive branch action, including executive orders,
policy guidance, contract amendments, or otherwise, the responsible agency
(be it the Department of State, the Department of Defense, the Department
of Justice, the Department of Commerce, or other) should be expected to respond
to the recommendations within 90 days, either implementing them or indicating
why they cannot be implemented. In the event that any of the recommendations
may be deemed sound but beyond the agencies' scope of authority under current
law, the Administration should propose the necessary statutory amendments
to Congress and work with the appropriate congressional committees to ensure
that the legislation is adequately considered and expeditiously moved forward.
As far-reaching as the work of such
a commission may be, means must also be found for preserving the focus and
the momentum resulting from its work. To ensure sustained attention to the
issues, NCD recommends that the permanent post of disability advisor should
be created, as a counselor to the Department of State, reporting directly
to the Secretary and having a collegial and consultative relationship with
all bureaus of the Department, and through the Department with such other
agencies as may be deemed appropriate.
UN Convention
For the past several years, the United
Nations (UN) has been engaged in the process of developing an international
treaty, the Convention on the Rights of People with Disabilities. NCD has
reported extensively on this effort in a number of briefing papers and progress
reports.159 NCD has also urged
the full and active participation by the United States on a number of levels,
ranging from active participation in the deliberations, to inclusion of persons
with disabilities in the U.S. delegation, to provision of technical support
to other delegations, to eventual ratification of the Convention when, with
our input, it is completed.
In May 2003 the UN body responsible
for the treaty established a working group to bring together representatives
of the delegations of concerned member states and interested nongovernmental
organizations (NGOs) to draft and refine the text of a proposed treaty. A
meeting of the working group was scheduled for early January 2004, and successive
meetings are expected to result in the submission of a draft treaty to the
General Assembly before the end of the year.
Meanwhile, in June 2003 the House of
Representatives passed a nonbinding resolution expressing the sense of Congress
that the United States should participate actively and constructively in
the development of the treaty.160 Despite
the strong bipartisan support demonstrated by the House vote, NCD remains
concerned that a great opportunity for U.S. leadership and for the sharing
of U.S. experience and expertise stands in jeopardy of being lost.
The Administration apparently has taken
the position that the United States will not be a signatory to the convention
and that the convention will not be submitted to the Senate for ratification.161 The reasons for this
position appear to include the belief that our laws already exceed all of
the standards and requirements that could conceivably be included in the
convention, making our participation superfluous. In addition, there may
be concerns about subjecting U.S. policies and practices to additional international
oversight, under circumstances where the methods and entities that will be
involved in monitoring the convention have yet to be determined.
While respecting these identified considerations,
NCD believes that other imperative considerations outweigh them.
Historically, it has not been the practice
of the United States to refrain from entry into treaties simply because those
treaties would not impose requirements that exceed those already applicable
under domestic law. Indeed, if it were U.S. policy to enter into treaties
and covenants only when the documents required something more or different
than our law already provides, the role of treaties would be greatly narrowed
from what it has traditionally been.
Treaties and international conventions
serve many purposes, including important symbolic ones. Given the leadership
the United States has shown over the past half century in the articulation
and advancement of human rights for people with disabilities, it would be
a shocking reversal of policy and regard for bipartisan precedent were the
United States to miss the opportunity to join with other nations of the world
in furthering more fully the values of human rights in international consciousness
and law.
Although the United States has announced
its intention to not sign the treaty, opposition to its adoption has not
been expressed. Rather, the United States has taken what has been described
as a neutral position. The United States has remained willing to provide
technical assistance, but surely the receptiveness of other countries to
that assistance and the opportunities for providing it would be greater if
this country also wholeheartedly embraced the process and its outcome as
a full participant, rather than as a mere spectator.
Effective participation on any level
by the United States requires an actively committed delegation-not one that
pledges to sign any treaty that may emerge, but one that works actively to
develop a treaty of which this country and the entire world can be proud.
To that end, it is also critical that
individuals with disabilities play a large role in articulating and representing
the positions of the disability community. It may not matter whether the
participation is as official members of the U.S. delegation or as representatives
of NGOs admitted to full participation in the deliberative process, so long
as the necessary central role of people with disabilities is achieved.
For these reasons, NCD recommends that
the Administration announce its intention to participate fully and actively
in the deliberations of the working group, with a view to helping to develop
a treaty that, if consistent with U.S. values and reflecting the input of
persons with disabilities from around the world, will be signed by the United
States and thereafter submitted to the Senate, with active support from the
Administration for its ratification.
Technical Assistance
As a world leader in all forms of human
rights, including the rights of people with disabilities, the United States
has achieved a record of which to be proud. Through our landmark laws such
as ADA and through the practices, accommodations, standards, and definitions
that have evolved, the United States has amassed an unmatched level of knowledge
and expertise and gained admiration and emulation around the world.
In light of this background, the United
States should always seek methods for voluntarily sharing and disseminating
our experience and expertise, which are very likely to be eagerly welcomed
by partners around the world. One way of sharing may be through technical
assistance (TA) of an organized sort. From the design of accessible buildings
and telecommunications technologies, to the development and evaluation of
program guidelines to ensure maximum inclusiveness, many federal agencies
and programs have tremendous experience working with state, local, and private
organizations here at home in bringing about these goals and in promoting
best practices in a variety of settings. NCD believes that this wealth of
experience and resources could play an important role in empowering governments
and private organizations in other nations to achieve progress in the integration
of their citizens with disabilities. There is a need to determine the capacity
of federal agencies and programs to share their experience and expertise
internationally in this way, and to assess the range of resources that could
be provided and the practicality and feasibility of beginning a program to
do this. Accordingly, NCD recommends that the Administration establish a
commission to survey all existing federally funded or federally administered
TA programs in the areas of accessibility and full participation. This should
occur with a view to (a) identifying those programs that may have some applicability
to activities being supported with U.S. funds in the international arena,
and (b) establishing mechanisms and linkages to enable these resources to
be brought to bear on the world stage in those cases where the content or
methods of such TA are deemed pertinent. In particular, the expertise developed
by many programs in addressing and reaching culturally diverse populations
should be tapped.
Conclusion
This chapter has described the contexts
in which U.S. values in the area of disability rights impact other nations.
It has also made recommendations for practices and laws that will facilitate
the maximum dispersion of our values with a minimum of coercion or imposition
on the sovereign prerogatives and cultural traditions of other nations.
Recommendations
Summary
Recommendations
to the Administration
Recommendation 12.1-NCD
recommends that government-wide regulations, backed by suitable monitoring
and technical assistance, be put into place requiring and empowering all
overseas recipients of federal funds to comply with the provisions of Section
504 in their use of such funds.
Recommendation 12.2-NCD
recommends that the Administration establish a national commission to review
the entire range of U.S. international assistance programs and other commitments
under the Foreign Assistance Act and other laws to determine the extent to
which full access and participation by persons with disabilities is incorporated
in governing regulations, contract terms, oversight, and reporting criteria.
Recommendation 12.3-NCD
recommends that the Administration announce its intention to participate
fully and actively in the deliberations of the working group considering
the UN Convention on the Rights of People with Disabilities, with a view
to helping develop a treaty that, if consistent with U.S. policies and practices
and reflecting the input of persons with disabilities from around the world,
will be signed by the United States and thereafter submitted to the Senate,
with active support from the Administration for its ratification.
Recommendation 12.4-NCD
recommends that the Administration establish a commission to survey all existing
federally funded or federally administered TA programs in the areas of accessibility
and full participation, with a view to identifying those which may have some
applicability to activities being supported with U.S. funds in the international
arena, and with a view to establishing mechanisms and linkages to enable
these resources to be brought to bear on the world stage in those cases where
the content or methods of such technical assistance are deemed pertinent.
Recommendations
to the Department of State
Recommendation 12.5-NCD
recommends that the Department adopt a prospective policy that would establish
accessibility as a key criterion in the selection, lease, purchase, modification,
or occupancy of sites.
Recommendation 12.6-NCD
recommends that the permanent post of disability advisor be created as a
counselor to the Department of State, reporting directly to the Secretary
and having a collegial and consultative relationship with all bureaus of
the Department and, through the Department, with such other agencies as may
be deemed appropriate.
Chapter Thirteen
Homeland Security
Introduction
The tragic events of three years ago have made homeland security,
both as a concept and as an agency of government, an important element of our
lives. For people with disabilities, no less than for all Americans, homeland
security is vital and has brought about changes in our lives. And for people
with disabilities, as for all Americans, balancing the new demands of security
with our traditional values of freedom and openness remains a delicate and
complicated process.
But for people with disabilities the rights and values that can
collide with security are themselves fairly new. They are the rights to nondiscrimination
and equal access and opportunity embodied in a number of laws over the past
20 years.
This chapter addresses the interface between a number of major
homeland security initiatives and the rights and expectations of people with
disabilities. It considers the relationship between nondiscrimination and security
generally, concentrates on people with disabilities in emergency preparedness
planning, and focuses on some of the nondiscrimination issues raised by the
involvement of private organizations in protection of our security.
Nondiscrimination
Nondiscrimination and equal opportunity for people with disabilities
were not on the radar screen when most federal agencies were created. Thus,
implementing them is usually a matter of retrofitting existing practices and
structures. With the creation of the Department of Homeland Security (DHS),
our nation had an opportunity to incorporate the values of nondiscrimination
and equal opportunity into an important federal agency from the ground up.
While the agencies brought together to create DHS all had their own histories
and internal cultures, a new, overriding approach was nevertheless being created.
NCD congratulates DHS for its attention to citizens with disabilities
and the issues that concern them. Amidst the urgent effort to form disparate
entities into a single working whole, DHS has repeatedly taken time and shown
willingness to respond in this key area. In particular, we have had occasion
to note the efforts and accomplishments of the Transportation Security Administration,
itself a completely new entity, in developing procedures and implementing training
to ensure that the rights of air travelers with disabilities are respected.
NCD has also had occasion to commend the Bureau of Citizenship and Immigration
Services (BCIS) (formerly the Immigration and Naturalization Service) for significant
accommodations incorporated, both as a matter of policy and in response to
individual needs, in the cherished process of gaining U.S. citizenship.
Naturally, awareness will vary from agency to agency within DHS,
but NCD is confident that similar responsiveness will be experienced across
the spectrum of DHS activities and units.
Emergency Preparedness
One area of ongoing importance in the work of DHS that directly
impacts the public is emergency preparedness. Here, too, NCD appreciates the
efforts that have been made to ensure that people with disabilities be taken
into account in emergency response planning, such as in the interagency seminar, "Emergency
Preparedness for Persons with Disabilities," hosted by DOL's Office of Disability
Employment Policy.162 In focusing on the exchange of information
and best practices among federal managers, the seminar sought to reinforce
the leadership of the Federal Government in this area. But NCD continues to
have a number of concerns that we believe DHS can help to address.
Emergency preparedness involves and depends on the effective planning
of numerous partners. Information is scarce regarding how well state and local
government or the private sector is doing in incorporating workers, customers,
visitors, and citizens with disabilities into emergency planning at all levels.
NCD believes that baseline data must be collected in this area as a means for
needs assessment and for fashioning appropriate technical assistance.
Therefore, as a first step in assessing the state of emergency
preparedness planning around the country, DHS should survey its state and local
governmental partners, whose responsibilities in such areas as first-responder
training and evacuation planning place them in the forefront of emergency preparedness
planning. NCD recommends that DHS survey all state and local partners and affiliates
involved in emergency planning to (a) identify the measures they have taken
to address the full inclusion of persons with disabilities in their preparedness
and emergency-response planning, (b) evaluate the training and TA resources
these partners may need to more effectively carry out this element of their
work, and (c) identify and disseminate model practices discovered in states
and communities around the country.
From the design of informational resources to be used to warn
people of danger, to the delineation and marking of escape routes, to the distribution
of emergency supplies, vaccines, or protective equipment, people with disabilities
may have experiences and needs that differ in crucial ways from those of the
rest of the general public and that are not necessarily obvious to local planners
and decision makers. Accordingly, NCD recommends that whenever state or local
governments involve local institutions or members of the public in emergency
preparedness planning or exercises, individuals with disabilities are consciously
sought out and included in these efforts.
Private Organizations
In much of its work, DHS operates with the help of private organizations
and provides contractual or other funds for their use. Ranging from computer
security firms that develop new strategies for protecting the nation against
cyber-attack, to pharmaceutical companies engaged in the development of vaccines
to protect the nation against biological attack, to schools that train linguists
or other specialized experts, DHS works with and through an enormous range
of private entities, both for-profit and nonprofit in nature.
It is vitally important that these organizations understand
and share the concern for the rights and interests of people with disabilities.
It is also crucial that they possess the knowledge and resources to implement
such concern in their work. Implementation barriers and the need for knowledge
and resources may include, but are not limited to, the following:
A
vaccine warning label that cannot be read by a person with a visual disability
A
computer security system that locks out users of TTYs
A
telephone-based information system that presents information in ways that cannot
be slowed down or otherwise accessed and understood by people with intellectual
disabilities
A
biometric identification system that assumes everyone has 2 eyes, 2 hands,
10 fingers, or a voice that can be scanned in standardized ways.
Whether in day-to-day use or in moments of crisis, the impact
of these barriers is not lessened by the fact that it was never anyone's intent
that people with disabilities be excluded or disadvantaged.
This is why DHS must ensure both awareness and action on the part
of all its private sector, nongovernmental contractors and other partners.
To achieve this goal, NCD recommends that DHS develop contract, grant, and
other agreement language requiring contractors, grantees, and other partners
to certify that they will seek out and incorporate input from people with disabilities
at the earliest possible stages of product and system development, consistent
with the demands of secrecy and national security. DHS should also develop
mechanisms for monitoring contractor performance in these areas and means for
providing TA and remedial guidance where adequate performance is found to be
lacking.
Conclusion
As a new cabinet department, DHS has had a unique opportunity
to incorporate concerns for accessibility and equality into its development
and procedures. NCD believes the Department has justified itself well in many
areas so far, and here suggested additional steps that evolving conditions
make timely and appropriate.
Recommendations
and Summary
Recommendations
to the Department of Homeland Security
Recommendation 13.1-NCD recommends that DHS survey all
state and local partners and affiliates involved in emergency planning to (a)
identify the measures they have taken to address the full inclusion of persons
with disabilities in their preparedness and emergency-response planning, (b)
evaluate the training and technical assistance resources these partners may
need to more effectively carry out this element of their work, and (c) identify
and disseminate model practices discovered in states and communities around
the country.
Recommendation 13.2-NCD recommends that whenever state
or local governments involve local institutions or members of the public in
emergency preparedness planning or exercises, individuals with disabilities
are consciously sought out and included in these efforts.
Recommendation 13.3-NCD recommends that DHS develop contract,
grant, and other agreement language requiring contractors, grantees, and other
partners to certify that they will seek out and incorporate input from people
with disabilities at the earliest possible stages of product and system development.
This needs to be consistent with the demands of secrecy and national security.
A Compilation
of Report Recommendations to Congress, the Administration, and Federal
Agencies
In this final section, all of the report recommendations have
been compiled according to the target audiences. There are three parts that
provide specific recommendations to Congress, to the Administration, and to
federal agencies. The numerals within the text are consistent with the way
recommendations are identified at the end of the various topical chapters of
the report.
Recommendations
to Congress
Chapter One-Disability
Statistics and Research
Recommendation 1.3-NCD recommends that Congress authorize
research studies into the effectiveness of a number of leading programs and
intervention strategies. Initially, this might begin by assessing key indicators,
such as the employment and income status of persons with disabilities who have
been placed in employment following successful completion of VR programs.
Compare the information obtained to the disability population
generally and the working-age population as a whole. Additional avenues of
study should look at the employment and income status of persons with disabilities
who have graduated from a four-year or community college and/or those who are
in a pilot experiment, ensured of full and uninterrupted access to comprehensive
medical care after entering employment.
Other research should address the impact-again through a pilot
study, if necessary-of the provision of adequate transportation in rural areas
on nursing home admissions and care costs. Finally, the research could focus
on the level of employment sustainability achievable in a sample of persons
who are allowed to retain their SSI cash benefits for two years after entering
work, subject to gradual phase-out over a multiyear period thereafter.
Chapter Two-Civil
Rights
Recommendation 2.5-NCD
recommends that Congress enact an ADA Restoration Act that will responsibly
recalibrate the balance between fairness and individual dignity on the one
hand, and institutional costs and convenience on the other, by addressing
many of the interpretive and procedural issues noted above.
Recommendation 2.6-NCD urges the House of Representatives
to follow the Senate's lead as early as possible in the second session of the
108th Congress and to join the Senate in adopting genetic antidiscrimination
legislation.
Chapter Three-Education
Recommendation 3.1-Congress should ensure that when disciplinary
considerations require the removal of students with disabilities from the mainstream,
integrated classroom, such students are ensured the right to uninterrupted
educational, special education, and related services consistent with their
IEPs and with evolving assessments and needs in the most appropriate educational
settings.
Recommendation 3.2-NCD
recommends that Congress and the Administration undertake a study of possible
methods and sources for increasing over time to 40 percent the level of federal
participation in special education.
Recommendation 3.3-NCD
recommends that Congress establish a commission to study the long-term costs
of special education and to recommend strategies for ensuring the financial
stability of state and local education agencies in meeting national educational
goals for students with disabilities.
Recommendation 3.4-NCD
recommends that before the enactment of any further curbs or restrictions
of a procedural or economic nature on the due process rights of parents,
Congress fully review the impact and efficacy of existing provisions designed
to curb litigation and complaints.
Recommendation 3.5-NCD
recommends that inasmuch as adequate data does not yet exist to justify the
curtailment of parental due process rights in special education, Congress
undertake definitive research that would provide empirical evidence on the
subject of the impact of appeals and of attorneys on special education before
further restricting family rights.
Recommendation 3.6-NCD
recommends that Congress in its reauthorization of IDEA include provisions
calling for adoption of ED's consensus NFF (or if a comment period reveals
that this standard is unsatisfactory, then for development of another one)
that would have to be met as a condition for textbook purchase. Congress
should also adopt the provision in the Senate draft bill calling for the
establishment of a national repository of computer files so that books in
accessible formats can effectively and promptly be made available to those
schools and students that need them.
Recommendation 3.7-NCD
recommends that Congress include in the IDEA reauthorization provisions and
resources supporting the conduct of a detailed national study on the availability,
need for, and impact of a variety of accommodations that have been used in
various school settings. This study should be conducted with a view to identifying
approaches to the development of a national strategy that will meet the ultimately
complementary needs of students with disabilities and needs of school systems.
The study should also attempt to assess the impact of various accommodations
on test outcomes, so their impact can be taken into account in the norming
of tests and in ensuring fairness and compatibility of results.
Recommendation 3.8-NCD
recommends that Congress include in the reauthorized IDEA an instruction
to the Secretary of Education to collect data on the availability and utilization
of accessible instructional materials and assistive technology in the schools,
and collect all available data on the connection between the application
of such resources and of a variety of reasonable accommodation strategies
with measures of the status and outcomes of students with disabilities.
Recommendation 3.9-NCD
recommends that the national education technology plan set forth as a cornerstone
and a fundamental requirement of America's education technology policy that
all technology resources and tools created or used must be accessible to
and usable by all students, irrespective of disability.
Recommendation 3.10-NCD
recommends that if Congress cannot address these substantive issues in a
manner that their complexity and importance warrant, and in a manner that
ensures the necessary level of program accountability, Part B of IDEA should
not be modified or changed but should be left in tact until the necessary
further deliberations can take place.
Recommendation 3.11-NCD
recommends that Congress hold hearings on the barriers facing students with
disabilities as part of its consideration of the Higher Education Act reauthorization,
and that students with disabilities themselves should be invited and encouraged
to share their views and experiences with lawmakers.
Recommendation 3.12-NCD
recommends that Congress expand its assessment by incorporating into the
Higher Education Act provisions paralleling the textbook and technology accessibility
measures recommended above for IDEA. NCD recommends that if Congress lacks
time or inclination to conduct a thorough review of higher education in relation
to students with disabilities at this time, Congress should include in the
reauthorization an instruction and resources for the Secretary of Education
to conduct a thorough study of these issues, through the appointment of a
national commission composed of representatives and members of all relevant
constituencies, including youth with disabilities.
Recommendation 3.13-NCD
urges Congress to commission a feasibility study of the broadening of the
IDA concept to make this modality available to all students with disabilities
for transitional purposes and to clarify the availability of a broad range
of expenditure categories as permissible within this framework. The tax deductibility
of all contributed funds and the tax-exempt status of all properly withdrawn
funds should also be made clear, as well as the exclusion of IDA funds from
means-testing under any other federal or state program.
Chapter Four-Health
Care
Recommendation 4.1-NCD
recommends that Congress hold hearings on the issue of institutional bias
in Medicaid as early as possible in the second session of the 108th Congress
in 2004.
Recommendation 4.2-NCD
recommends that Congress amend the Medicaid law to empower or require HHS
to take the necessary steps to make the Medicaid waiver process open and
accountable to the citizenry.
Recommendation 4.3-NCD
recommends that Congress establish a national commission to study the question
of how consumer participation and direction can be maximized throughout the
federal health insurance programs, with a view to adding the findings and
recommendations of this study to such Medicaid reform proposals as the Administration
and Congress may in due course develop.
Recommendation 4.4-NCD
recommends that Congress enact the Money Follows the Person (MFP) legislation
currently before it.
Recommendation 4.5-NCD
recommends that Congress begin the process of facilitating expanded use of
Medicaid buy-in programs by adopting the Family Opportunity Act.
Recommendation 4.6-NCD
recommends that Congress enact legislation providing for a pilot demonstration
study under which the prior-authorization approach would be used exclusively
with one group of dual-eligibles and the purchase-first approach with another,
matched group. The results and implications should then be compared, and
depending on the findings, the solution and best practices that emerge from
the research should be implemented.
Recommendation 4.7-NCD
continues to recommend to Congress that it adopt legislation to ensure that
all health insurance provides equal benefits for mental health treatment
as it does for the treatment of physical illness.
Recommendation 4.8-NCD
recommends that Congress take steps to implement the major recommendations
of the President's New Freedom Commission on Mental Health and of NCD's reports
on mental health services.
Recommendation 4.9-NCD
recommends that the Administration publish detailed, point-by-point reactions
to the findings and recommendations of the NCD and President's Commission
reports, and that OMB be instructed by the President to prepare detailed
estimates of the costs, savings, and other benefits that would accrue from
the adoption of each of the recommendations.
Chapter Five-Long-Term
Services and Supports
Recommendation 5.1-NCD
recommends that Congress adopt MFP legislation and the Medicaid Community
Attendant Services and Supports Act (MiCASSA) without delay, as keystones
in the new arch of long-term services policy in this country.
Recommendation 5.2-NCD
recommends to Congress that the three-percentincrease in federal matching
percentage be retained, but specifically for application to those reimbursable
Medicaid activities and services that are related to the development and
provision of home- and community-based services.
Recommendation 5.3-NCD
recommends enactment of the Lifespan Respite Care Act.
Recommendation 5.4-NCD
recommends that Congress hold hearings to fully explore the potential role
of the insurance industry, the tax code, the employer community, and existing
programs in fashioning experimental models of coverage that can be tested
and studied.
Chapter Six-Youth (no
specific recommendations to Congress)
Chapter Seven-Employment
and the Workforce Development System
Recommendation 7.1-NCD
recommends that Congress fully explore the consequences arising from the
fact that because of order of selection, the eligibility standards the VR
law prescribes and the services it authorizes may not, in fact, be making
their way through the pipeline to all intended end-users and service providers
in communities around the country.
Recommendation 7.2-NCD
recommends that Congress revise the Work Opportunity Tax Credit so that all
long-term unemployed persons with disabilities are eligible to benefit from
the incentives it offers, and so that employers are free to hire any qualified
person with a disability and still receive this credit.
Recommendation 7.3-NCD
recommends that any congressional reauthorization of the Work Opportunity
Tax Credit or any review of the credit in the context of broader tax legislation
include provisions making it available for people returning to their former
employers following significant periods of separation after the onset of
a disability.
Recommendation 7.4-NCD
recommends that Congress study the health insurance-related work disincentives
problem anew, in the context of state Medicaid cutbacks.
Chapter Eight-Welfare
Reform
Recommendation 8.1-NCD
recommends that Congress grant state TANF administrators expanded discretion
to waive time or benefits limits in those cases where the support services
needs resulting from disability cannot be sufficiently met to facilitate
successful employment.
Recommendation 8.2-NCD
recommends Congress adopt the Pathways to Independence Act as part of, or
as an amendment to, the overall PRWORA reauthorization. We also recommend
that Congress grant states the discretion to waive the act's six-month limit
in cases where additional time would be likely to make the difference in
bringing about long-term gainful employment.
Recommendation 8.3-NCD
recommends that Congress broaden the definition of qualifying savings goals
for TANF IDAs to include assistive or universally designed technology and
modified vehicles or other specialized transportation services needed in
order to work.
Recommendation 8.4-NCD
recommends Congress require that before sanctioning any individual with a
significant disability, or before curtailing benefits due to exhaustion of
time limits to persons who may have a hidden disability or whose service
needs as primary caregivers for family members with disabilities have not
been fully assessed by knowledgeable persons, states ensure that these persons
are offered the opportunity for a full medical-vocational assessment through
the state's Office of Disability Determination and its VR agency.
Chapter Nine-Housing
Recommendation 9.1-NCD
recommends that Congress authorize an experiment in a number of diverse states
or regional housing markets under which accessibility status, as defined
by HUD, would be added to the list of disclosure items under the Real Estate
Settlements Procedure Act.
Recommendation 9.2-NCD
recommends that Congress study the feasibility and impact of tax-based and
other measures for increasing the economic attractiveness of accessibility,
such as measures that would speed up the recovery period for the costs of
accessibility modifications, measures that would increase the availability
of federally backed mortgage funds for the construction or transfer of accessible
units, and measures that would target benefits under the housing tax credit
to projects that incorporate universal accessibility.
Recommendation 9.3-NCD
recommends that Congress study ways through which visitability could be incorporated
into all federal funding streams. Such a study should include a review of
ways that the tax subsidies associated with the building and ownership of
residential property could be enhanced for properties that are made visitable
or accessible.
Chapter Ten-Transportation
Recommendation 10.1-NCD
recommends that Congress, in addition to adequate funding authorization,
include in the transportation legislation authority for NFI transportation
funds to be used for a wide variety of programs, including operating assistance,
and that funds not be limited to the purchase or modification of vehicles.
Recommendation 10.2-NCD
recommends that the funding and authority for the Elderly
and Persons with Disabilities Program (49 U.S.C. §5310)be
retained and optimized by Congress, and that its resources continue to flow
to the nonprofit sector, without restrictions or limitations that would in
any way inhibit the development of projects that serve people with disabilities
in an integrated or community-based setting.
Recommendation 10.3-NCD
recommends to Congress that, just as the level of federal highway funds over
the years has been tied to state adoption of many national policies and priorities
ranging from lowered blood alcohol levels to mandated seatbelt use, so now
the availability of highway funds should be partially conditioned on state
efforts to meaningfully incorporate transportation policy and agencies into
the Olmstead implementation process.
Recommendation 10.4-NCD
recommends that Congress vigorously support research into issues ranging
from audible traffic signals and textured surfaces to traffic light placement
and intersection design.
Recommendation 10.5-NCD
recommends that Congress authorize a study of the contents, utilization,
impact, relevance, and possible need for modernization of state white cane
laws.
Chapter Eleven-Assistive
Technology and Telecommunications
Recommendation 11.1-NCD
recommends that Congress reauthorize the Assistive Technology Act this year
and provide not only an additional year's funding, but also statutory authorization
for the program's existence, so that a measure of stability and the means
to engage in planning and capacity-building can be restored.
Chapter Twelve-International
Affairs (no specific recommendations
for Congress)
Chapter Thirteen-Homeland Security (no
specific recommendations for Congress)
Recommendations
to the Administration
Chapter One-Disability
Statistics and Research
Recommendation 1.1-NCD recommends that the U.S. Government's
Interagency Committee on Disability Research be given all possible resources,
status, and visibility by the Administration to carry out the interagency research
and coordination so vitally necessary to the collection and rationalization
of disability statistics.
Recommendation 1.2-NCD recommends that the Administration
appoint a high-level presidential task force-including leaders in such fields
as economics, demographics, health, education and law, and including leaders
from within the disability community-to begin the admittedly daunting task
of identifying those econometric, statistical, observational, forecasting,
and other techniques and tools that may be available for bringing greater accountability
to disability policy, and for identifying the range of outcomes, consequences,
implications, and relationships that must be taken into account in designing
policy and assessing its effects.
Chapter Two-Civil
Rights (no specific recommendations
to the Administration)
Chapter Three-Education (no specific recommendations to the Administration)
Chapter Four-Health
Care
Recommendation 4.9-NCD
recommends that the Administration publish detailed, point-by-point reactions
to the findings and recommendations of the report of the President's New
Freedom Commission on Mental Health, and that OMB be instructed by the President
to prepare detailed estimates of the costs, savings, and other benefits that
would accrue from the adoption of each of the recommendations.
Chapter Five-Long-Term
Services and Supports (no specific
recommendations to the Administration)
Chapter Six-Youth
Recommendation 6.1-NCD
recommends that the Administration take steps to ensure that recommendations
of a national commission appointed by the Administration are implemented.
The findings must be formally reviewed, adopted, rejected, or otherwise responded
to by a federal official with authority to speak for the Administration.
Findings that are adopted must be implemented under conditions that include
accountability time frames against which success or failure can be measured.
Recommendation 6.2-NCD
recommends that the Administration instruct each federal agency that deals
in any particular way with youth with disabilities or their families to develop
means by which the opinions, experiences, and recommendations of this constituency
or target population can be obtained and taken into account in future program
planning.
Recommendation 6.3-NCD
recommends that the Administration make clear at the earliest possible moment
its intentions with respect to its opinion and use of the work of the National
Youth Leadership Network to date, and its intentions regarding continued
federal support for the work of this project.
Chapter Seven-Employment
and the Workforce Development System
Recommendation 7.5-NCD
recommends that the Administration establish a blue-ribbon task force to
study the aging of the workforce on an expedited basis and to make recommendations
to Congress on measures that could be taken to strengthen the capacity of
the economy to retain and benefit from the services and experiences of older
workers with adult-onset disabilities.
Recommendation 7.6-NCD
recommends that the Administration move swiftly to remedy any problems uncovered
by forthcoming studies on the Ticket to Work program, either by interagency
or executive branch action or by proposing and supporting appropriate legislation,
as the case may be.
Chapter Eight-Welfare
Reform (no specific recommendations for the Administration)
Chapter Nine-Housing
Recommendation 9.4-NCD
recommends that the Administration appoint a high-level national commission
composed of economists, housing and transportation experts, tax practitioners,
legal analysts, architects, land-use planners, and individuals with disabilities
to map a long-term strategy for steadily increasing the proportion of the
nation's housing stock that meets standards of accessibility.
Recommendation 9.5-NCD
recommends that the high-level national commission recommended above to study
how to expand the nation's accessible housing stock also be tasked by executive
order to include these issuesin its mandate.
Chapter Ten-Transportation
Recommendation 10.6-NCD
recommends that the Administration undertake a comprehensive study into the
need for, availability of, and prospects for transportation resources and
services in this country, not as an end in themselves but as they relate
to the achievement of a variety of other national priorities and objectives,
with a view to developing and documenting measures for assessing the impact
of transportation investments, resources, and facilities on the participation
of people with disabilities in employment, education, and community living.
Recommendation 10.7-NCD
recommends that the ATMD Task Force be reconvened with the charge of going
beyond the list of agencies and their statements of what they do, to an assessment
of whether, in fact, there are any Americans who face barriers to education,
employment, or health care that could be overcome by the heightened availability
of ATMD for personal transportation, and if so, how federal programs can
be modified or better coordinated to bring about greater access.
Chapter Twelve-International
Affairs
Recommendation 12.1-NCD
recommends that government-wide regulations, backed up by suitable monitoring
and technical assistance, be put into place requiring and empowering all
overseas recipients of federal funds to comply with the provisions of Section
504 in their use of such funds.
Recommendation 12.2-NCD
recommends that the Administration establish a national commission to review
the entire range of U.S. international assistance programs and other commitments
under the Foreign Assistance Act and other laws to determine the extent to
which full access and participation by persons with disabilities is incorporated
in governing regulations, contract terms, oversight, and reporting criteria.
Recommendation 12.3-NCD
recommends that the Administration announce its intention to participate
fully and actively in the deliberations of the working group considering
the UN Convention on the Rights of People with Disabilities, with a view
to helping develop a treaty that, if consistent with U.S. policies and practices
and reflecting the input of persons with disabilities from around the world,
will be signed by the United States and thereafter submitted to the Senate,
with active support from the Administration for its ratification.
Recommendation 12.5-NCD
recommends that the Administration establish a commission to survey all existing
federally funded or federally administered TA programs in the areas of accessibility
and full participation, with a view to identifying those which may have some
applicability to activities being supported with U.S. funds in the international
arena, and with a view, in those cases where the content or methods of such
TA are deemed pertinent, to establishing mechanisms and linkages to enable
these resources to be brought to bear on the world stage.
Chapter Thirteen-Homeland Security (no specific recommendations
for the Administration)
Recommendations to Federal Agencies, Offices,
and Courts
Chapter One-Disability
Statistics and Research
Recommendations to the Census Bureau
Recommendation 1.4-NCD recommends that disability-related
questions be retained and improved in the 2010 Census, and that if the Census
Bureau believes that it lacks legal authority to retain or enhance these questions,
it immediately seek the necessary legislative authorization from Congress.
Chapter Two-Civil
Rights
Recommendations to the Judicial Conference
and the Administrative Office of the Courts
Recommendation 2.1-NCD
recommends that attorneys and judges with disabilities be invited to participate
in seminars at institutes and meetings of and for federal judges held under
various auspices during the year.
Recommendation 2.2-NCD
recommends that, in several sample federal districts and circuit courts of
appeals, the courts undertake a comprehensive ADA self-assessment, including
physical, programmatic, and communications barriers.
Recommendation 2.3-NCD
recommends that the Judicial Conference of the United States adopt the standards
and protocols for Web site accessibility and document formatting and design
embodied in Section 508 of the Rehabilitation Act; seek and provide the technical
assistance resources that each court will need to implement these principles;
establish realistic but meaningful timetables for completion of the work;
and seek the input of persons with disabilities, including attorneys, litigants,
and court employees, as well as jurists, to provide input and feedback as
the process goes forward.
Recommendations to the Department of
Justice
Recommendation 2.6-NCD
recommends that DOJ reactivate and support the work of the Interagency Disability
Coordinating Committee, with a view to developing, publicizing, and implementing
a cross-agency plan for the implementation and administration of Section
504 that will ensure clarity, consistency, and predictability for both individuals
with disabilities and entities receiving federal financial assistance.
Recommendation 2.7-NCD
recommends that, pending the full implementation of the Help America Vote
Act, DOJ support the applicability of ADA to the polling place and the voting
booth by initiating cases or intervening in cases where reasonable measures
on the part of state and local election officials could result in meaningful
increases in the independent and accessible voting opportunities for Americans
with disabilities.
Chapter Three-Education
Recommendation to the Department of
Education
Recommendation 3.14-NCD
recommends that ED promulgate detailed policy guidance that applies, so far
as deemed appropriate and with such differences as are deemed necessary,
the teacher qualification provisions embodied in NCLB to the unique needs
and conditions existing in special education and to the special education
and related services disciplines deemed to come within the scope of the NCLB.
In this regard, NCD further urges Congress to incorporate in the reauthorized
IDEA resources and authority for the Secretary of Education to conduct a
detailed assessment of the personnel and personnel-preparation needs for
students with disabilities, of the current resources available for training
specialized personnel, and of means by which the resources required to fulfill
identified intermediate- and long-term specialized training and personnel
needs can be reliably and stably met.
Recommendation to the Department of
the Treasury
Recommendation 3.15-NCD
recommends that the Department of the Treasury study and report to Congress
on the potential, from the revenue and administrative standpoints, of establishing
tax-deductible contributory transition savings accounts, the proceeds of
which would remain tax-exempt when spent for qualifying transition activities,
services, or purposes. In conducting this study, which should be completed
within one year, Treasury should seek the input of the disability community
regarding all key points, including the potential impact of such a program,
the range of activities, goods and services that should be eligible to qualify
for transition expenditure, and the time frames within which funds should
be expended.
Chapter Four-Health
Care
Recommendations to the Centers for
Medicare and Medicaid Services
Recommendation 4.10-NCD
recommends that CMS (the agency that administers the Medicaid program) begin
publishing and updating on a regular basis detailed information on the proportion
of Medicaid, Medicare, and other federal health care funds going to the provision
or support of institutional versus home- and community-based services and
care.
Recommendation 4.11-NCD
recommends that in its oversight of the Medicare discount-card program and
its role in approving proposals from insurers or drug providers, CMS require
(and should thereafter monitor for evidence of compliance) that all materials
utilized or published by discount-card providers be available in a variety
of written, accessible Web-based, telephone-based, and other formats, and
that reliable and readily accessible sources of assistance in understanding
and comparing program provisions, and thereafter in negotiating the details
of program participation, be available.
Recommendation 4.12-NCD
recommends that CMS provide appropriate mechanisms with precise guidelines
for ensuring that the requirements for nondiscrimination and equal access
embodied in Sections 504 and 508 of the Rehabilitation Act are applicable
to all documentation and outreach activities undertaken by private sector
providers under the new law.
Recommendation 4.13-NCD
recommends that CMS clarify whether it regards private sector managed care
organizations and other drug and Medicare benefit and services providers
as covered by the antidiscrimination provisions of Section 504 of the Rehabilitation
Act.
Recommendation 4.14-NCD
recommends that CMS begin a planning process designed to ensure that the
individual decisions of providers will not result in any Medicare recipients
with disabilities being forced to choose between the increasing advantages
of managed care and access to the particular treatments, modalities, and
practitioners they need as individuals.
Recommendations to the Department of
Health and Human Services
Recommendation 4.15-NCD
recommends that HHS require that state Medicaid plans include detailed descriptions
of how waiver requests will be developed in ways that permit and encourage
public and community input, and that each waiver request be required to include
detailed information about the nature of public and community input, pro
and con, that was received.
Recommendation 4.16-NCD
recommends that HHS's own Medicaid waiver review processes be opened to public
participation through publication of all waiver requests in the Federal
Register with opportunity for comment, that the substance of comments
be published with HHS decisions on them, and that all waivers be initially
approved on a time-limited basis and subject to review and renewal or modification
after a specified period of time.
Recommendation 4.17-NCD
recommends that HHS develop and implement a comprehensive plan for ensuring
that the resources of FDA and CMS will be brought to bear in a coordinated
fashion to assess and review AT and universally designed medical devices
to ensure the earliest and most effective possible determinations regarding
the suitability of such equipment for coverage under Medicare and other insurance
programs.
Recommendation 4.18-NCD
recommends that HHS, through its Office on Disability or such other unit
as the Secretary of HHS deems appropriate, undertake a study into the methods
used for implementation of HIPAA requirements for people with disabilities,
and into the effectiveness of these methods as they relate to the particular
access needs faced by various sub-groups of people with disabilities.
Recommendation to the Food and Drug
Administration
Recommendation 4.19-NCD
recommends that FDA develop and publish a comprehensive plan for ensuring
that assistive and universally designed devices with particular applicability
to the lives of people with disabilities are evaluated on a priority basis,
and by people who are knowledgeable about the issues and people such technology
is designed to address.
Chapter Five-Long
Term Services and Supports
Recommendations to the HHS Centers
for Medicare and Medicaid Services
Recommendation 5.5-NCD
recommends that CMS require timely planning for and documented achievement
of Olmstead goals as a condition for states receiving federal funds
under the Medicaid program.
Recommendation 5.6-NCD
recommends that CMS initiate a formal and intensive information-gathering
process, preparatory to rulemaking, designed to result in the issuance within
18 months of proposed regulations governing the new Olmstead priority.
Recommendation 5.7-NCD
recommends that if CMS believes that neither the existing Medicaid statute,
ADA, nor the Supreme Court's Olmstead decision authorize it to take
these actions, HHS should immediately seek from Congress the necessary legislative
authorization.
Chapter Six-Youth
Recommendation to the Department of Justice
Recommendation 6.4-NCD
recommends that DOJ appoint a high-level national commission to authoritatively
and accountably review all available evidence on juvenile justice system
and disability interconnections.
Recommendation to the Office of Management
and Budget
Recommendation 6.5-NCD
recommends that OMB develop and disseminate a brief statement, to be included
on all relevant federal transmittals, grant applications, and contract documents
and notices, reminding partners of the importance of establishing clearly
under each program and with each agency with which they may work, the parameters
of "youth" under applicable law.
Chapter Seven-Employment
and the Workforce Development System
Recommendations to the Department of
Labor
Recommendation 7.7-NCD
recommends that DOL establish and publicize a complaint procedure for use
by individuals who have been denied access to One-Stop Centers, incorporate
accessibility guarantees in requirements for state workforce development
plans, and insist on inclusion of representatives of people with disabilities
(or at least of state VR agencies) on state and local workforce investment
boards.
Recommendation 7.8-NCD
recommends that DOL, acting through its Office of Disability Employment Policy
or through its Office of Inspector-General, jointly develop with DOJ a plan
for vigorous and proactive enforcement of the antidiscrimination and accessibility
requirements of the law bearing on the ability and willingness of One-Stop
Centers to serve customers with disabilities.
Recommendation 7.9-NCD
recommends that DOL develop outcome measures that take due account of all
the relevant variables involved in working with job seekers with disabilities,
including not only the potential costs of working with this population within
a mainstream setting, but also the benefits to the taxpayers of commitment
and success in such work.
Recommendation 7.10-NCD
recommends that DOL survey One-Stop Centers and people with disabilities
who have received referral services through them to determine the measures
the One-Stop Centers have used to monitor the treatment that people with
disabilities receive at the hands of community partners, and the means they
have developed for sharing expertise and resources with such providers in
ways aimed at ensuring accessibility.
Recommendations to the Department of
Education
Recommendation 7.11-NCD
recommends that ED's Rehabilitation Services Administration establish an
investigative procedure to determine through outreach to a variety of VR
partners the extent to which the aspirations and obligations of these partners
to work collaboratively and smoothly with VR are adversely effected or unduly
complicated by recourse to orders of selection.
Recommendation 7.12-NCD
recommends that, at least until states' fiscal situations improve significantly,
ED, through NIDRR, waive upfront cash requirements and accept a variety of
other forms of documentable matching contributions, including noncash match,
so long as these in-kind or other noncash resources are reasonably amenable
to valuation.
Recommendation 7.13-NCD
recommends that ED, through its Office of Civil Rights, open an inquiry into
the sources of policies that may hinder establishment of positive credit
histories, and if they are found to exist as described to us, seek to remove
this barrier to the establishment of positive credit history records by borrowers
with disabilities.
Chapter Eight-Welfare
Reform
Recommendation to the Department of
Health and Human Services
Recommendation 8.5-NCD
recommends that the Secretary of HHS issue regulations requiring state TANF
program administrators to set up screening and cooperative service-provision
partnerships with state VR agencies (or where orders of selection prevent
the state VR agencies from effectively offering their services to new people,
with other appropriate entities) that can offer the expertise needed to ensure
that TANF recipients' disability-related training and other employment-support
needs will be properly identified and effectively met.
Recommendation to the Department of
Justice
Recommendation 8.6-NCD
also recommends that with respect to the existing TANF IDA provisions specifying
first-time home acquisition as a qualifying IDA savings objective, DOJ evaluate
whether, in order to comply with ADA, the definition of permissible acquisition
expenses should be broadened to include the costs of home modifications where
such modifications are necessary to make the home accessible for a person
with a disability.
Chapter Nine-Housing
Recommendations to the Department of Housing and Urban Development
Recommendation 9.6-NCD
recommends that HUD develop and disseminate a comprehensive publication explaining
all the rental and home ownership programs available, with particular reference
to the specific provisions dealing with people with disabilities, and, through
illustrations and case studies, explaining all major potential interactions
with other laws and benefit programs.
Recommendation 9.7-NCD
recommends that DOJ and HUD jointly publish and thereafter adhere to guidelines
delineating the management of cases from HUD (or Fair Housing Assistance
Program) complaint to DOJ or judicial disposition.
Recommendation 9.8-NCD
recommends that HUD undertake a study aimed at determining the extent and
nature of noncompliance not only with Section 504, but also with Title II
of ADA by local housing authorities and state public housing agencies.
Recommendation 9.9-NCD
recommends that HUD develop research strategies, going beyond the use of
testers in matched pairs, aimed at identifying instances of discrimination
occurring at nonpublic points in the housing process.
Recommendation 9.10-NCD
recommends that HUD, in collaboration with OMB, develop a research model
for assessing behavior or other actual change, and thereafter conduct in-depth
follow-up interviews after 6 and 12 months, with a random sample of training
and technical assistance recipients across the spectrum of programs utilizing
these resources, with a view to determining the actual impact of this training
on the way they carry out their work, on the manner in which they make decisions,
and on the content of those decisions.
Recommendation 9.11-NCD
recommends that HUD undertake a study of definitions to determine what if
any changes, through administrative action or legislation, need to be made
to bring definitions, technical requirements, and standards into compliance
with modern precepts, and to ensure that what we ask members of the housing
community to do continues to represent the most effective allocation of public
and private resources.
Chapter Ten-Transportation
Recommendations to the Department of
Transportation
Recommendation 10.8-NCD
recommends the development of a fact sheet that addresses actual or foreseeable
situations encountered in the course of air travel and that specifies for
each the key points listed in the text accompanying this recommendation.
Recommendation 10.9-NCD
recommends that in order to make the ACAA complaint process meaningful for
both passengers and carriers, DOT make clear by regulation or other appropriate
advisory that serious or repeat violations of the law will and must be dealt
with by imposing significant sanctions, and not merely by obliging carriers
to use fine remittances for activities that under the law they should have
been carrying out already.
Recommendation 10.10-NCD
recommends that DOT immediately require, as a critical dimension of ACAA
compliance, that all ticket machines hereafter designed, installed, or modified
are made accessible.
Recommendation 10.11-NCD
recommends that FAA, the Secretary of Transportation, and TSA develop mechanisms
to ensure that whenever new airport technology is designed or tested, passengers
with disabilities be included in the evaluation and testing processes.
Recommendation 10.12-NCD
recommends that the Secretaries of HHS and Transportation require joint certification
each year of incorporation of transportation policy and agencies into the Olmstead process
before states' full allocation of highway funds can be released.
Recommendation 10.13-NCD
recommends that DOT undertake intensive inquiries in a random sample of locations
to determine what the real impact of trip eligibility has been and whether
the practice is enhancing the independence of people with disabilities.
Chapter Eleven-Assistive
Technology and Telecommunications
Recommendations to the Federal Communications
Commission
Recommendation 11.2-NCD
recommends that the FCC publish standards for the review of proposed Section
255 settlements to ensure that they are in the public interest and that they
reflect accurately an understanding of the relevant and applicable technology
and law on the part of the parties.
Recommendation 11.3-NCD
recommends that the FCC revive the Market Monitoring Report as a tool for
assessing the needs and potential for greater product accessibility in various
key areas of telecommunications technology.
Recommendation 11.4-NCD
recommends that the FCC initiate the development of a record for use in a
rulemaking procedure aimed at applying Section 255 to Voice Over Internet
Protocol. If the Commission believes it lacks this authority, it should immediately
join with NCD and with appropriate representatives of the telecommunications
industry and disability community to make recommendations to Congress for
the necessary legislation.
Recommendation 11.5-NCD
recommends that the FCC initiate regulatory proceedings designed to anticipate
all the technological issues that may be reasonably foreseeable in the continued
availability and increased utilization of captioning, and to promulgate rules
that will ensure, while there is still time for manufacturers and carriers
to respond effectively, that the availability and quality of captioning will
be in no way compromised or endangered.
Recommendation 11.6-NCD
recommends that the FCC consult with interested industry groups and representatives
of the disability community, through its Consumer Advisory Committee or other
appropriate forums, with a view to developing recommendations for video description
legislation that can be submitted to and supported in Congress.
Recommendation 11.7-NCD
recommends that the FCC initiate a rulemaking designed to require appropriate
accessibility certification and guarantees as a condition for the receipt
of E-rate subsidies.
Recommendations to the Department of
Justice
Recommendation 11.8-NCD
recommends that the forthcoming DOJ Section 508 report, while maintaining
the focus on progress toward Web site accessibility that characterized DOJ's
earlier report, place emphasis on the categories of equipment covered by
the law.
Recommendation 11.9-NCD
recommends that DOJ undertake proceedings to identify the subsisting interpretive
questions surrounding Section 508, and that it provide authoritative indications
of its views concerning the answers.
Recommendation to the General Services
Administration
Recommendation 11.10-NCD
recommends that GSA, in conjunction with DOJ, undertake a study of such matters
as how and when federal agencies are utilizing the statutory exceptions and
defenses to the imposition of 508 requirements on particular procurements,
how these instances are being documented, how accessibility is being scored
in the evaluation of competitive bids in relation to other procurement requirements,
and whether agencies have developed plans for making information resources
accessible to appropriate staff or members of the public when the technology
that produces them cannot itself be made accessible.
Chapter Twelve-International
Affairs
Recommendations to the State Department
Recommendation 12.5-NCD
recommends that the State Department adopt a prospective policy that would
establish accessibility as a key criterion in the selection, lease, purchase,
modification, or occupancy of sites.
Recommendation 12.6-NCD
recommends that the post of permanent disability advisor be created, as a
counselor to the Department of State, reporting directly to the Secretary
of State and having a collegial and consultative relationship with all bureaus
of the Department and through the Department with such other agencies as
may be deemed appropriate.
Chapter Thirteen-Homeland
Security
Recommendations to the Department of
Homeland Security
Recommendation 13.1-NCD recommends that DHS survey all
state and local partners and affiliates involved in emergency planning to (a)
identify the measures they have taken to address the full inclusion of persons
with disabilities in their preparedness and emergency-response planning, (b)
evaluate the training and technical assistance resources these partners may
need to more effectively carryout this element of their work, and (c) identify
and disseminate model practices discovered in states and communities around
the country.
Recommendation 13.2-NCD recommends that whenever state
or local governments involve local institutions or members of the public in
emergency preparedness planning or exercises, individuals with disabilities
are consciously sought out and included in these efforts.
Recommendation 13.3-NCD recommends that DHS develop contract,
grant, and other agreement language requiring contractors, grantees, and other
partners to certify that they will seek out and incorporate input from people
with disabilities at the earliest possible stages of product and system development,
consistent with the demands of secrecy and national security.
Appendix I
Mission of the National Council on Disability
Overview
and Purpose
The National Council on Disability (NCD) is an independent
federal agency with 15 members appointed by the President of the United States
and confirmed by the U.S. Senate. The overall purpose of NCD is to promote
policies, programs, practices, and procedures that guarantee equal opportunity
for all individuals with disabilities, regardless of the nature or significance
of the disability, and to empower individuals with disabilities to achieve
economic self-sufficiency, independent living, and inclusion and integration
into all aspects of society.
Specific Duties
The current statutory mandate of NCD includes the following:
Reviewing
and evaluating, on a continuing basis, policies, programs, practices, and
procedures concerning individuals with disabilities conducted or assisted
by federal departments and agencies, including programs established or assisted
under the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act, as well as all statutes and
regulations pertaining to federal programs that assist such individuals with
disabilities, to assess the effectiveness of such policies, programs,
practices, procedures, statutes, and regulations in meeting the needs
of individuals with disabilities.
Reviewing
and evaluating, on a continuing basis, new and emerging disability policy
issues affecting individuals with disabilities at the federal, state, and
local government levels and in the private sector, including the need for
and coordination of adult services, access to personal assistance services,
school reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that act as disincentives
for individuals to seek and retain employment.
Making
recommendations to the President, Congress, the Secretary of Education, the
director of the National Institute on Disability and Rehabilitation Research,
and other officials of federal agencies about ways to better promote equal
opportunity, economic self-sufficiency, independent living, and inclusion
and integration into all aspects of society for Americans with disabilities.
Providing
Congress, on a continuing basis, with advice, recommendations, legislative
proposals, and any additional information that NCD or Congress deems appropriate.
Gathering
information about the implementation, effectiveness, and impact of the Americans
with Disabilities Act of 1990 (ADA) (42 U.S.C. §12101 et seq.).
Advising
the President, Congress, the commissioner of the Rehabilitation Services
Administration, the assistant secretary for Special Education and Rehabilitative
Services within the Department of Education, and the director of the National
Institute on Disability and Rehabilitation Research on the development of
the programs to be carried out under the Rehabilitation Act of 1973, as amended.
Providing
advice to the commissioner of the Rehabilitation Services Administration
with respect to the policies and conduct of the administration.
Making
recommendations to the director of the National Institute on Disability and
Rehabilitation Research on ways to improve research, service, administration,
and the collection, dissemination, and implementation of research findings
affecting people 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 ADA. NCD's
present list of key issues includes improving personal assistance services,
promoting health care reform, including students with disabilities in high-quality
programs in typical neighborhood schools, promoting equal employment and community
housing opportunities, monitoring the implementation of ADA, improving assistive
technology, and ensuring that people with disabilities who are members of diverse
cultures fully participate in society.
Statutory History
NCD was established in 1978 as an advisory board within
the Department of Education (P.L. 95-602). The Rehabilitation Act Amendments
of 1984 (P.L. 98-221) transformed NCD into an independent agency.
Appendix II
List of Acronyms
ACAA |
Air Carrier Access Act |
ACS |
American Community Survey |
ADA |
Americans with Disabilities Act |
ADL |
activities of daily living |
AFDC |
Aid to Families with Dependent Children |
AFIA |
Assets for Financial Independence Act |
AFP |
Alternative Financing Program |
AOI |
Adequacy of Incentives |
AT |
assistance technology |
ATMD |
assistive technology mobility device |
AWIC |
area work incentive coordinator |
AYP |
adequate yearly progress |
BCIS |
Bureau of Citizenship and Immigration Services |
BPA&O |
Benefits Planning, Assistance, and Outreach |
CBO |
community-based organizations |
CDC |
Centers for Disease Control and Prevention |
CMS |
Centers for Medicare and Medicaid Services |
DHS |
Department of Homeland Security |
DME |
durable medical equipment |
DOJ |
Department of Justice |
DOL |
Department of Labor |
DOT |
Department of Transportation |
DRE |
direct recording equipment |
E&IT |
electronic and information technology |
ED |
Department of Education |
EEOC |
Equal Employment Opportunity Commission |
FAA |
Federal Aviation Administration |
FCC |
Federal Communications Commission |
FDA |
Food and Drug Administration |
FHA |
Fair Housing Act |
FHEO |
Office of Fair Housing and Equal Opportunity |
FIRST |
Fair Housing Accessibility First Initiative |
FSS |
Family Self-Sufficiency program |
GAO |
Government Accountability Office |
GSA |
General Services Administration |
HAC |
Hearing Aid Compatibility Act |
HAVA |
Help America Vote Act |
HCTC |
health care tax credit |
HHS |
Department of Health and Human Services |
HIPAA |
Health Insurance Portability and Accountability Act |
HUD |
Department of Housing and Urban Development |
ICDR |
Interagency Committee on Disability Research |
ICF |
International Classification of Functioning, Disability, and Health |
IDA |
Individual Development Account |
IDCC |
Interagency Disability Coordinating Committee |
IDEA |
Individuals with Disabilities Education Act |
IEP |
Individualized Education Program |
IRS |
Internal Revenue Service |
ITM |
information technology and terminal machine |
LEA |
local education agency |
MDUFMA |
Medical Device User Fee and Modernization Act |
MFP |
Money Follows the Person |
MiCASSA |
Medicaid Community Attendant Services and Supports Act |
MMA |
Medicare Modernization Act |
MOU |
memorandum of understanding |
NCD |
National Council on Disability |
NCLB |
No Child Left Behind Act |
NETP |
National Education Technology Plan |
NFF |
national file format |
NFI |
New Freedom Initiative |
NGO |
nongovernmental organization |
NIDRR |
National Institute on Disability and Rehabilitation Research |
NOFA |
Notice of Funds Availability |
NOI |
Notice of Inquiry |
NPRM |
Notice of Proposed Rulemaking |
NYLN |
National Youth Leadership Network |
OCR |
Office of Civil Rights |
ODEP |
Office of Disability Employment Policy |
OIG |
Office of Inspector-General |
OMB |
Office of Management and Budget |
OSEP |
Office of Special Education Programs |
P&A |
protection and advocacy |
PHA |
public housing agency |
PRP |
Personal Responsibility Plan |
PRWORA |
Personal Responsibility and Work Opportunity Reconciliation Act |
RESNA |
Rehabilitation Engineering and Assistive Technology Society of North
America |
RSA |
Rehabilitation Services Administration |
SEA |
state education agency |
SSA |
Social Security Administration |
SSDI |
Social Security Disability Insurance |
SSI |
Social Security Insurance |
TA |
technical assistance |
TANF |
Temporary Assistance for Needy Families |
TEA-21 |
Transportation Equity Act for the 21st Century |
TSA |
Transportation Security Administration |
TWWIAP |
TWWIIA Advisory Panel |
TWWIIA |
Ticket to Work and Work Incentives Improvement Act |
UFAS |
Uniform Federal Accessibility Standards |
UN |
United Nations |
VCA |
voluntary compliance agreement |
VOIP |
Voice Over Internet Protocol |
VR |
vocational rehabilitation |
WIA |
Workforce Investment Act |
WIB |
workforce investment board |
WIC |
Special Supplemental Nutrition Program for Women, Infants and Children |
YAC |
Youth Advisory Committee |
YTPD |
Youth Transition Process Demonstration |
Endnotes
1 U.S. Census
Bureau, "1990 Census Data for States, Metropolitan Areas, and Counties and
Model-Based Estimates of the Prevalence of Specific Disabilities for States
and Counties." http://www.census.gov/hhes/www/disable/census.html.
U.S. Census Bureau, "Disability Status: 2000-Census 2000 Brief." http://www.census.gov/hhes/www/disable/disabstat2k.html.
U.S. Census Bureau, American Community Survey, "Using the Data: Subject
Definitions-Disability." http://www.census.gov/acs/www/UseData/Def/Disabili.htm.
U.S. Department of Health and Human Services, Centers for Disease Control
and Prevention, National Center for Health Statistics, "FastStats A-Z Disabilities/Limitations." http://www.cdc.gov/nchs/fastats/disable.htm.
National Organization on Disability, 2000 National Organization on Disability/Harris
Survey of Community Participation, "Executive Summary," July 11, 2002. http://www.nod.org/content.cfm?id=1078.
2 National
Council on Disability, National Disability Policy: A Progress Report,
December 2001-December 2002, July 26, 2003.
http://www.ncd.gov/newsroom/publications/2003/progressreport_final.htm#statistics.National
Council on Disability, Reorienting Disability Research, April 1, 1998. http://www.ncd.gov/newsroom/publications/1998/reorienting.htm.
3 National
Council on Disability, Improving Federal Disability Data, position
paper, January 9, 2004. http://www.ncd.gov/newsroom/publications/2004/improvedata.htm.
4 World Health
Organization, International Classification of Functioning, Disability,
and Health (ICF), 2002. http://www3.who.int/icf/onlinebrowser/icf.cfm.
5 World Health
Organization, Towards a Common Language for Functioning, Disability and
Health: ICF-The International Classification of Functioning, Disability and
Health, 2002.http://www3.who.int/icf/beginners/bg.pdf.
6 28 CFR §35.150(a);
28 CFR §36.104; 29 CFR §1630.2 (p); 29 CFR §37.4; 42 USCA §12111(10); 42
U.S.C. §12112(b)(5)(A). Donald J. Column Spero, "Burdens of Proof of Reasonableness
and Undue Hardship Under Titles I, II, and III of the Americans with Disabilities
Act, Part 1," 77 Florida Bar Journal 66, January 2003.
7 Clackamas
v. Wells, 538 U.S. 440 (2003).
8 Raytheon
Company v. Hernandez, 540 U.S. 44 (2003).
9 Barden
v. City of Sacramento, 292 F.3d 1073 (9th Cir. 2002); City of Sacramento
v. Barden, 537 U.S. 1231 (2003).
10 Hason
v. Medical Bd. of California, 279 F.3d 1167 (9th Cir. 2002), cert.
dismissed 2003 U.S. LEXIS 2897 (2003).
11 Although Tennessee
v. Lane was argued and decided in 2004 (after the period covered by
this report), its importance requires that reference be made to its outcome.
The Supreme Court ruled that at least where fundamental rights such as
access to judicial services is concerned, private citizens can sue states
for money damages under Title II of ADA. Further court decisions will be
required before the broad range of Title II cases will be available for
use in this way.
12 Compare Board
of Trustees of the University of Alabama v. Garrett, 531 U.S. 356 (2001)
with Tennessee v. Lane, 315 F.3d 680 (6th Cir. 2003), Tennessee
v. Lane, 124 S.Ct. 1978 (2004).
13 Linda
Greenhouse, "Justices to Hear Case on Whether the Disabled Can Sue States
on Access to Courtrooms," New York Times, June 23, 2003.
http://www.nytimes.com/2003/06/24/national/24SCOT.html?ex=1095220800&en=d06da28c2961f8e0&ei=5070.
National Council on Disability, Tennessee v. Lane: The Legal Issues and the
Implications for People with Disabilities, policy briefing paper, September
4, 2003.
http://www.ncd.gov/newsroom/publications/2003/legalissues.htm.
14 Tennessee
v. Lane, No. 02-1667, 2002 U.S. Briefs 1667, December 17, 2003, On
Writ of Certiorari to the United States Court of Appeals for the Sixth
Circuit, petitioner's reply brief.
15 Tennessee
v. Lane, No. 02-1667, 2002 U.S. Briefs 1667, November 12, 2003, On
Writ of Certiorari to the United States Court of Appeals for the Sixth
Circuit, brief for the United States. http://www.bazelon.org/issues/disabilityrights/lane/index.htm.
16 See endnote
7.
17 Linn Washington
Jr., "Federal Clerkships, Bringing More Blacks to Clerking," 85 ABA Journal 60
(February 1999).
18 National
Council on Disability, Policy Brief Series, "Righting the ADA Papers,
October 16, 2002-October 21, 2003." http://www.ncd.gov/newsroom/publications/2003/policybrief.htm.
19 National
Council on Disability, Policy Brief Series, "Righting the ADA, Nos.
6-19." http://www.ncd.gov/newsroom/publications/2003/policybrief.htm.
20 108th
Congress, H.R. 728 (2003).
21 Although
no official document on this point has been found, NCD is mindful that President
Bush has stated his opposition to this proposal for an ADA Notification Act. http://www.ncd.gov/newsroom/news/2003/r03-408.htm; http://www.businessweek.com/bwdaily/dnflash/jun2000/nf00621g.htm.
22 P.L. 93-112, §504
as amended, codified at 29 U.S.C. §794.
23 National
Council on Disability, Rehabilitating Section 504, February 12, 2003.
http://www.ncd.gov/newsroom/publications/2003/section504.htm.
24 National
Council on Disability, Enforcing the Civil Rights of Air Travelers with Disabilities:
Recommendations for the Department of Transportation and Congress, February
26, 1999.
http://www.ncd.gov/newsroom/publications/1999/acaa.htm.
National Council on Disability, Back to School on Civil Rights, January
25, 2000.
http://www.ncd.gov/newsroom/publications/2000/backtoschool_1.htm.
National Council on Disability, Promises to Keep: A Decade of Federal
Enforcement of the Americans with Disabilities Act, June 27, 2000.
http://www.ncd.gov/newsroom/publications/2000/promises_1.htm.
National Council on Disability, The Accessible Future, June 21, 2001.
http://www.ncd.gov/newsroom/publications/2001/accessiblefuture.htm.
National Council on Disability, Reconstructing Fair Housing, November
6, 2001.
http://www.ncd.gov/newsroom/publications/2001/fairhousing.htm.
National Council on Disability, Rehabilitating Section 504, February
12, 2003.
http://www.ncd.gov/newsroom/publications/203/section504.htm.
25 For a
chart that compares ADA, IDEA, and Section 504, see, A Comparison of ADA,
IDEA, and Section 504 by the Disability Rights Education and Defense
Fund.
http://www.dredf.org/advocacy/comparison.html.
26 Ronald
M. Hager, Esq., and Diane Smith, Esq., "The Public School's Special Education
System as an Assistive Technology Funding Source: The Cutting Edge," Funding
of Assistive Technology Series, 2nd ed., April 2003. http://www.nls.org/specedat.htm.
27 Statement
of Ralph F. Boyd Jr., Assistant Attorney General, Civil Rights Division,
U.S. Department of Justice, before the Subcommittee on the Constitution,
Committee on the Judiciary, House of Representatives, presented on May 15,
2003, Oversight Hearing for Civil Rights Division of the Department of Justice. http://www.house.gov/judiciary/boyd051503.htm.
28 Ronald
M. Hager, Esq., and Diane Smith, Esq., "The Public School's Special Education
System as an Assistive Technology Funding Source: The Cutting Edge," Funding
of Assistive Technology Series, 2nd ed., April 2003. http://www.nls.org/specedat.htm.
29 National
Council on Disability, Genetic Discrimination Legislation, position
paper, March 4, 2002.
http://www.ncd.gov/newsroom/publications/2002/geneticdiscrimination_positionpaper.htm.
30 Genetic
Information Nondiscrimination Act of 2003, 108th Congress, S.1053, October
14, 2003.
31 Health
Insurance Portability and Accountability Act of 1996. http://www.cms.hhs.gov/hipaa.
32 President's
Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of
Happiness, October 15, 2003. http://www.bioethics.gov/reports/beyondtherapy/fulldoc.html.
33 P.L. 107-252
(2002).
34 "Whether
Certain Direct Recording Electronic Voting Systems Comply with the Help America
Vote Act and the Americans With Disabilities Act," Memorandum Opinion for
the Principal Deputy Assistant Attorney General Civil Rights Division, October
10, 2003. Retrieved September 14, 2004, from http://www.usdoj.gov/olc/drevotingsystems.htm.
U.S. Department of Justice, ADA Checklist for Polling Places, February
20, 2003. http://www.ada.gov/votingck.htm.
35 National
Organization on Disability v. Tartaglione, F.Supp.2d (E.D.Pa. 2001).
American Association of People with Disabilities v. Smith, 227 F.Supp.2d
1276 (M.D.Fla. 2002).
American Association of People with Disabilities v. Hood, 278 F.Supp.2d
1345 (M.D.Fla. 2003).
Troiano v. Supervisor of Elections, Palm Beach County, Florida, 2004
WL 1941055 (11th Cir. 2004).
36 Arthur
Santana, "District to Aid Disabled Voters," Washington Post, August
16, 2002. http://www.washingtonpost.com/ac2/wp-dyn?pagename=article&contentId=A24481-2002Aug15¬Found=truehttp://www.washingtonpost.com/ac2/wp-dyn?pagename=article&contentId=A24481-2002Aug15¬Found=true.
37 National
Council on Disability, "National Council on Disability Says It's Time to
Make the Individuals with Disabilities Education Act Work Better," NCD Release
#03-419, July 11, 2003. http://www.ncd.gov/newsroom/news/2003/r03-419.htm.
38 P.L. 107-110,
codified at 20 U.S.C. §6301 et seq.
39 108th
Congress, H.R. 1350.
40 108th
Congress, S. 1250.
41 President's
Commission on Excellence in Special Education, A New Era: Revitalizing
Special Education for Children and Their Families, July 1, 2002. http://www.ed.gov/inits/commissionsboards/whspecialeducation/reports/index.html.
42 P.L. 105-17, §615,
especially (b) and (i)(3), codified in 20 U.S.C. §1415.
43 P.L. 105-17, §615,
especially (d) procedural safeguards notice and (e) mediation.
44 http://www.cast.org/ncac/nff.
45 108th
Congress, S. 1248, §674(c)(4).
46 U. S.
Department of Education, Office of the Under Secretary, Policy and Program
Studies Service, Evaluation Brief: Improving Teacher Quality in U.S. School
Districts: Districts' Use of Title II, Part A, Funds in 2002-2003, February
6, 2004. http://www.ed.gov/programs/teacherqual/uof.doc.
47 68 FR
68698 (December 9, 2003). Also accompanying Department of Education press
release, http://www.ed.gov/news/pressreleases/2003/12/12092003.html.
48 Board
of Education of Hendrick Hudson Central School Dist. v. Rowley, 458
U.S. 176 (1982).
49 http://www.nationaledtechplan.org/default.asp.
Also 20 U.S.C. §6772.
50 P.L. 107-139.
51 National
Council on Disability, Students with Disabilities Face Financial Aid Barriers:
College and Graduate Students Share Their Stories and Policy Recommendations, September
15, 2003. http://www.ncd.gov/newsroom/advisory/youth/yac_aidbarriers.htm.
52 For example,
Internal Revenue Code, Section 529 (qualified tuition plans).
53 Assets
for Independence Act of 1998, P.L. 105-285, Title IV. http://www.acf.hhs.gov/assetbuilding/afialaw2000.html.
54 P.L. 104-193,
Personal Responsibility and Work Reconciliation Act.
55 National
Council on Disability, "Investing in Independence: Transition Recommendations
for President George W. Bush," 2001. http://www.ncd.gov/newsroom/publications/bush.html. National Council on Disability, Congressionally mandated
report, "National Disability Policy:
A Progress Report," 2002. http://www.ncd.gov/newsroom/publications/
progressreport_07-26-02.html.html.
56 National
Council on Disability, "National Council on Disability Applauds Administration's
New Community-Based Services Proposal," NCD News Release. http://www.ncd.gov/newsroom/news/2003/r03-430.htm.
The New Freedom Initiative Medicaid Demonstration Act of 2003 was sent to
Congress by the Administration on July 24, 2003. NCD has been unable to determine
what action was taken on this proposal or whether the legislation was formally
introduced. A section-by-section summary of the bill as sent to Congress
may be found at http://www.ilusa.com/news/092403jfa_medicaid_balance.htm.
ADAPT to Visit Governors at Annual Winter Meeting:
Letter to the National Governors Association, February 21, 2003. http://www.jfanow.org/jfanow/index.php?mode=A&id=1646.
57 42 U.S.C. §1396d-Definitions.
58 The Centers
for Medicare and Medicaid Services (CMS) (formerly the Health Care Financing
Administration [HCFA]) is the federal agency with oversight responsibility
for Medicaid. Part of the Department of Health and Human Services, CMS approves
and tracks Medicaid waivers and maintains details on them. http://www.cms.hhs.gov/medicaid/waivers;
also http://www.cms.hhs.gov/newfreedom.
59 U.S. Department
of Health and Human Services, Delivering on the Promise: Preliminary Report
of Federal Agencies' Actions to Eliminate Barriers and Promote Community
Integration, December 21, 2001. http://www.hhs.gov/newfreedom/presidentrpt.html.
60 DHHS Nursing
Home Compare, database, http://www.medicare.gov/nhcompare/home.asp.
For requirements bearing upon the tracking and screening of nursing home
residents for admission or release, CMS Minimum Dataset, http://cms.hhs.gov/medicaid/mds20/man-=m.asp.
61 Ralph
F. Boyd, United States assistant Attorney General for Civil Rights. Statement
at the second session of the Ad Hoc Committee on a Comprehensive and Integral
International Convention on Protection and Promotion of the Rights of Persons
with Disabilities, New York, 16 to 27 June 2003.
62 For a
listing of CMS waiver programs by state, http://cms.hhs.gov/medicaid/waivers/waivermap.asp.
The home- and community-based services (HCBS) waiver services growing out
of this original program in 1982 represent the majority of waiver participants,
funds, and services available under the Medicaid program. But other waiver
authority, including Demonstration and Independence Plus waivers, under Sections
1115, 1915(c), and other authorities, are also coming into increasing use.
63 State
waiver applications and other materials collected and linked at the National
Health Law Project site. http://www.healthlaw.org/publications.html.
64 http://www.academyhealth.org/2004/guterman.pdf.
65 http://www.cms.hhs.gov/newfreedom/accomplish.pdf.
66 108th
Congress, S. 1394 (2003).
67 108th
Congress, S. 622; see also H.R. 1811.
68 P.L. 107-250
(October 26, 2002).
69 P.L. 108-173
(December 8, 2003).
70 P.L. 104-191
(1996).
71 See generally,
Medicare Medicaid Dual Eligibility homepage, http://www.cms.hhs.gov/dualeligibles.
72 National
Council on Disability, The Well-Being of Our Nation: An Intergenerational
Vision of Effective Mental Health Services and Supports, 2002. http://www.ncd.gov/newsroom/publications/2002/mentalhealth.htm.
Compare P.L. 108-197 (2003) (temporary extension of the Mental Health Parity
Act).
73 Final
Report of the President's New Freedom Commission on Mental Health, 2003. http://www.mentalhealthcommission.gov/reports/FinalReport/toc.html.
Compare Mental Health: A Report of the Surgeon-General, 1999. http://www.surgeongeneral.gov/library/mentalhealth/home.html.
74 Internal
Revenue Code, Section 212, codified at 26 U.S.C. §212.
75 Claimed
on IRS Form 8885.
76 Economic
Security Act: Hearings Before the Committee on Ways and Means, House of Representatives,
Seventy-Fourth Congress First Session, Part One, on H.R. 4120 (1935) on SSA
Web site, http://www.ssa.gov/history/35house.html.
77 National
Council on Disability, NCD Bulletin, October 2003. http://www.ncd.gov/newsroom/bulletins/2003/b1003.htm.
78 527 U.S. 581
(1999). See Olmstead: Reclaiming Institutionalized Lives, NCD,
2003. http://www.ncd.gov/newsroom/publications/2003/reclaimlives.htm.
79 The Administration's
FY 2004 budget proposal contained $1.75 billion for this initiative.
80 U.S. General
Accounting Office, Medicaid Nursing Home Payments: States' Payment Rates
Largely Unaffected by Recent Fiscal Pressures, GAO Rep. 04-143, October
17, 2003. http://www.gao.gov/atext/d04143.txt.
81 108th
Congress, S. 1394 (2003).
82 108th
Congress, S. 971 (2003). Also, Statement by the National Council on Disability
on MiCASSA, News Release 03-437, February 14, 2003. http://www.ncd.gov/newsroom/news/2003/r03-437.htm.
83 The
President's New Freedom Initiative for People with Disabilities: The 2004
Progress Report. http://www.whitehouse.gov/infocus/newfreedom/toc-2004.html.
84 P.L. 108-27, §401
(2003).
85 108th
Congress, Lifespan Respite Care Act, S. 538 (2003).
86 See "National
Council on Disability Says Community-Based Services Work: Some States Receive
High Marks," NCD Press Release 03-433, August 19, 2003. http://www.ncd.gov/newsroom/news/2003/r03-433.htm.
87 http://www.ncd.gov/newsroom/publications/2003/juvenile.htm.
88 U.S. General
Accounting Office, Student Discipline: Individuals with Disabilities Education
Act Report, report to the Committees on Appropriations, U.S. Senate and
House of Representatives, GAO-01-210, January 25, 2001. http://www.gao.gov/new.items/d01210.pdf.
89 President's
Mental Health Commission, endnote 73 above. cf. Hazel Cagungun, Addressing
the Training and Employment Needs of Youth with Mental Health Disabilities
in the Juvenile Justice System, conference proceedings with recommendations
to the Presidential Task Force on Employment of Adults with Disabilities,
National Mental Health Association, 2001. Sue Burrell and Loren W. Warboys, Special
Education and the Juvenile Justice System (Office of Juvenile Justice
and Delinquency Prevention, 2000).
90 Youth
Advisory Committee, National Council on Disability, Students with Disabilities
Face Financial Aid Barriers: College and Graduate Students Share Their Stories
and Policy Recommendations, September 15, 2003. http://www.ncd.gov/newsroom/advisory/youth/yac_aidbarriers.htm.
91National
Youth Leadership Network. http://www.nyln.org/about/history.html.
92 Youth
Transition Process Demonstration, 68 FR 57950 (October 7, 2003).
http://www.ssa.gov/regulations/articles/Youth-Trans-Process-Demo.htm.
93 http://www.whitehouse.gov/news/freedominitiative/freedominitiative.html.
94 P.L. 105-220
(1998).
95 http://www.ncd.gov/newsroom/publications/2003/progressreport_final.htm#employment.
96 108th
Congress, H.R. 1261, Workforce Reinvestment and
Adult Education Act of 2003. http://www.cbo.gov/showdoc.cfm?index=4155&sequence=0.
97 108th
Congress, S. 5955, Personal Reemployment Account. http://www.washingtonvotes.org/SearchLegislation.aspx?EndDate=10%2F1%2F2004&Results=10&StartDate=1%2F1%2F2003&Keywords=personal+reemployment+account.
98 P.L. 105-220, §188. http://www.dol.gov/oasam/regs/statutes/sec188.htm.
99 For the
Section 188 checklist issued to help One-Stop Career Centers assess and improve
their accessibility, see http://www.dol.gov/oasam/programs/crc/WIASection188DisabilityChecklist.htm.
100 June
Isaacson Kailes, Aging with Disability, 2001. http://www.jik.com/awdrtcawd.html.
LeeAnne Carrothers, PT, Ph.D., Aging with a Disability Bibliography, February
2004. http://www.agingwithdisability.org/PDF/awdbibliography.pdf.
101 P.L.
105-220, §121(b).
102 For
an overview and description of the Disability Navigator Program, see http://www.workworld.org/wwwebhelp/disability_program_navigator_dpn_.htm.
103 The
Rehabilitation Act of 1973 as amended, P.L. 105-220, §401 et seq., codified
at 29 U.S.C. §701 et seq.
104 34 CFR
amendments at §361.36 to referral service requirements in the 1998 amendments
to the Vocational Rehabilitation Act regarding individuals who do not meet
the state's order of selection criteria for receiving services. See 34 CFR §361.37. http://www.ed.gov/legislation/FedRegister/finrule/2001-1/011701a.html.
105 Id.
at §361.36.
106 P.L.
105-394, §301 et seq., Assistive Technology Act of 1998.
107 It seems
likely that the job categories studied will significantly influence the result.
108 Federal
Register 46411-46418, Volume 68, Number 150, Notice of proposed changes
to the application process. August 5, 2003. (See page 46414, Nature of
the Match, amount of cash that the state is going to generate as a match,
as well as the source of the cash.) http://a257.g.akamaitech.net/7/257/2422/14mar20010800/edocket.access.gpo.gov/2003/03-19844.htm.
109 The
Work Opportunity Tax Credit (WOTC), authorized by the Small Business Job
Protection Act of 1996 (P.L. 104-188). http://www.uses.doleta.gov/wotcdata.asp.
110 P.L.
106-170 (1999).
111 Endnote
95 supra.
112 http://www.ssa.gov/work/panel/panel_documents/panel_documents_main.html.
113 U.S.
General Accounting Office, Medicaid and Ticket to Work: States' Early
Efforts to Cover Working Individuals with Disabilities, GAO-03-587, June
13, 2003. http://www.gao.gov/atext/d03587.txt.
114 P.L.
104-193.
115 Association
of University Centers on Disabilities (AUCD), Legislative News in Brief, Vol.
II, Issue 43 (December 2002). http://www.aucd.org/aucd_inbrief.htm.
116 National
Council on Disability, TANF and Disability: Importance of Supports for
Families with Disabilities in Welfare Reform, March 5, 2003. http://www.ncd.gov/newsroom/publications/2003/familysupports.htm.
117 108th
Congress, H.R.4 (2003).
118 108th
Congress, S. 327 (2003).
119 P.L.
105-285 (1998).
120 42 U.S.C. §604(h).
121 National
Council on Disability, Reconstructing Fair Housing. http://www.ncd.gov/newsroom/publications/2001/fairhousing.htm.
122 http://www.ncd.gov/newsroom/publications/2002/progressreport_07-26-02.htm#chap9.
123 For
example, http://www.hud.gov/news/release.cfm?content+pr03-125.cfm.
124 See
HUD letter, endnote 127.
125 See
HUD letter, endnote 127.
126 Initiatives
in this area recently summarized by HUD include the Fair Housing Training
Academy; Section 504 Self-Evaluation; development of a joint statement with
DOJ on reasonable accommodation requirements under the Fair Housing Act;
study of discrimination in rental housing; creation of a unit within the
Office of Fair Housing and Equal Employment (FHEO) concentrating on pattern
and practice and on systematic discrimination cases; and planned conduct
of events during 2004, including a Fair Housing Policy and Research Forum.
See HUD letter, endnote 127.
127 Letter
to NCD of February 2, 2004, from the U.S. Department of Housing and Urban
Development, Deputy Assistant Secretary for Enforcement and Programs (responding
to NCD's inquiry regarding steps taken by HUD to implement recommendations
made in NCD's 2002 annual progress report). The letter is on file at NCD.
128 HUD
letter, endnote 127.
129 HUD
letter, endnote 127.
130 HUD
letter, endnote 127.
131 P.L.
101-336, codified at 42 U.S.C. §12101 et seq.
132 14 CFR
Part 382.
133 P.L.
105-178 (1998).
134 527
U.S. 581 (1999).
135 Interagency
Working Group on Assistive Technology Mobility Devices, Report on Assistive
Technology Mobility Devices, August 5, 2003. http://www.icdr.us/atmd_report/index.htm.
136 For
example, Delta Air Lines Consent Decree (Department of Transportation, November
10, 2003). http://dms.dot.gov/search/document.cfm?documentid=258977&docketid=16507.
137 Frontier
Air Lines Consent Decree (Department of Transportation, Docket OST 2003-14194,
November 13, 2003). http://dms.dot.gov/reports/reports.aviation.asp.
138 Department
of Transportation letter to NCD (responding to inquiries made and issues
raised in the 2002 NCD annual progress report).
139 P.L.
105-178 (1998). See also 108th Congress, H.R. 3550.
140 But
for a report of activities from the states' point of view, see, W. Fox-Grage,
D. Folkemer, and J. Lewis, The States' Response to the Olmstead Decision:
How Are States Complying? http://www.ncsl.org/programs/health/forum/olmsreport.htm.
141 P.L.
105-394 (1998).
142 Hearing
Aid Compatible Telephones Report and Order, WT Docket No. 01-309, Federal
Communications Commission, July 10, 2003.
143 P.L.
104-104, §255, codified at 47 U.S.C. §255.
144 In
The Matter of O'Day v. Audiovox, FCC File No. EB-03-TC-F-004, Docket
DA 03-4116 (complaint dismissed December 30, 2003). http://www.fcc.gov/cgb/dro/section255.html#skiptopics.
145 47 U.S.C. §255(a)(2).
146 U.S.
Architectural and Transportation Barriers Compliance Board (Access Board), The
Access Board's Market Monitoring Report on Accessible Telecommunications.
http://www.access-board.gov/telecomm/marketrep.
147 Notice
of Proposed Rulemaking, CC Docket 02-33, FCC, February 2002. See also NCD
letter to FCC, August 6, 2002. http://www.ncd.gov/newsroom/correspondence/2002/fcc_08-06-02.htm.
148 The
FCC has dismissed a number of petitions for exemption from its closed-captioning
requirements, most brought by religious organizations claiming that the requirements
placed an unreasonable financial burden upon their television broadcasting.
149 Motion
Picture Association of America, Inc. v. FCC, 309 F.3d 796 (D.C. Cir.
2002).
150 Schools
and Libraries Universal Service Support Mechanism, CC Docket No. 02-6,
Notice of Proposed Rulemaking and Order, 17 FCC Rcd 1914 (2002) (Notice
and Order). In the Notice and Order, the Federal Communications Commission
sought comment on a wide range of issues relating to the schools and libraries
mechanism, including the treatment of unused funds.
151 P.L.
105-220, §408(b), codified at 29 U.S.C. §794d.
152 36 CFR
Part 1194.
153 Federal
Acquisition Regulation (FAR). http://www.arnet.gov/far.
154 National
Council on Disability, Foreign Policy and Disability, August 1, 1996. http://www.ncd.gov/newsroom/publications/1996/foreign.htm.
155 National
Council on Disability, Foreign Policy and Disability: Legislative Strategies
and Civil Rights Protections to Ensure Inclusion of People with Disabilities, September
9, 2003. http://www.ncd.gov/newsroom/publications/2003/foreign03.htm.
156 http://www.ncd.gov/newsroom//publications/2003/section504.htm#ChapterII.
157 Foreign
Assistance Act of 1961 as amended, 22 U.S.C. §2151 et seq.
158 Letter
from the Department of State to NCD, June 7, 2004, responding to inquiries
made pursuant to publication of NCD's 2002 annual progress report.
159 For
example, UN Disability Convention-Topics at a Glance: History of the Process, NCD
briefing paper, November 2003. http://www.ncd.gov/newsroom/publications/2003/history_process.htm#skip.
160 House
Concurrent Resolution 169 (June 12, 2003).
161 No official
government document embodying this position has been located, but this is
widely reported to be the Administration's view.
162 http://www.dol.gov/odep/pubs/ep/index2.htm.
|