Letter of Transmittal

January 15, 2008

The President\
The White House\
Washington, DC 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.

This report covers the period from December 2005 through December 2006.
It reviews federal policy activities by issue areas, noting progress
where it has occurred and making further recommendations where necessary
to the executive and legislative branches of the Federal Government.

As noted in the report, NCD has observed many examples of continued
progress in disability policy. Among these are the Help America Vote Act
for increasing access to elections for Americans with disabilities,
developments under the Assistive Technology Act that hold out the
promise for enhanced coordination in the delivery of services, and the
positive role of the Department of Justice in a recent Detroit public
transit case. This is just some of the positive progress we note as a
result of the Administration's leadership through the New Freedom
Initiative.

Notwithstanding this progress, many challenges remain for our citizens
who are living with disabilities and who wish to be more independent,
more productive, and more actively involved in their families and
communities. Far too many Americans are desperately trying to improve
the quality of their lives, but they are frustrated by a lack of
affordable accessible housing, transportation, and long-term services
and supports. NCD will continue to develop policy recommendations to
address these issues.

In the past year, NCD has undertaken and completed a number of projects
that support the Administration's New Freedom Initiative and that
respond to NCD's statutory mission. In particular, NCD has issued a
series of policy evaluations and evidence-based studies that measure
progress toward implementation of the Americans with Disabilities Act.

NCD encourages all government agencies and Congress to use our work as a
reference point and source of data for recommendations and as a basis
for further examination of issues that affect the lives of people with
disabilities. NCD will continue to work with the Administration and
Congress to ensure that every individual with a disability has access to
the American dream.

Thank you for your continuing leadership on these issues, and please
contact me if you have any questions.

Sincerely,

![](media/image1.png){width="1.7881944444444444in"
height="0.6708333333333333in"}

John R. Vaughn\
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

John R. Vaughn, Chairperson

Chad Colley, Vice Chair

Patricia Pound, Vice Chair

Milton Aponte, J.D.

Victoria Ray Carlson

Robert R. Davila, Ph.D.

Graham Hill

Marylyn Howe

Young Woo Kang, Ph.D.

Kathleen Martinez

Lisa Mattheiss

Lonnie Moore

Anne M. Rader

Cynthia Wainscott

Linda Wetters

Staff

Michael C. Collins, Executive Director

Martin Gould, Ed.D., Director of Research and Technology

Mark S. Quigley, Director of Communications

Julie Carroll, Senior Attorney Advisor

Joan M. Durocher, Senior Attorney Advisor

Sharon M. Lisa Grubb, Special Assistant to the Executive Director

Geraldine Drake Hawkins, Ph.D., Senior Program Analyst

Brenda Bratton, Executive Assistant

Stacey S. Brown, Staff Assistant

Carla Nelson, Secretary

Acknowledgments

The National Council on Disability expresses its sincere appreciation to
Steve Mendelsohn, Esq., for all his work in the development of this
report.

Table of Contents

[EXECUTIVE SUMMARY 11](#refheading___toc181717791)

[Major Trends 27](#__RefHeading___Toc181717792)

[Pay-As-You-Go Budgeting 28](#__RefHeading___Toc181717793)

[Key National Indicators 29](#__RefHeading___Toc181717794)

[Asset Development 31](#__RefHeading___Toc181717795)

[Market-Based Regulation 33](#__RefHeading___Toc181717796)

[Chapter One: Disability Statistics 35](#__RefHeading___Toc181717797)

[Introduction 35](#__RefHeading___Toc181717798)

[The Fundamental Problem 36](#__RefHeading___Toc181717799)

[The Census 36](#__RefHeading___Toc181717800)

[Program Data 37](#__RefHeading___Toc181717801)

[Experimentation 39](#__RefHeading___Toc181717802)

[Recommendations 40](#__RefHeading___Toc181717803)

[Chapter Two: Civil Rights 41](#__RefHeading___Toc181717804)

[Introduction 41](#__RefHeading___Toc181717805)

[The Americans with Disabilities Act 42](#__RefHeading___Toc181717806)

[Section 504 of The Rehabilitation Act 52](#__RefHeading___Toc181717807)

[Voting Rights 55](#__RefHeading___Toc181717808)

[The Civil Rights of Institutionalized Persons Act
58](#__RefHeading___Toc181717809)

[Genetic Nondiscrimination and Privacy 59](#__RefHeading___Toc181717810)

[Recommendations 60](#__RefHeading___Toc181717811)

[Chapter Three: Education 63](#__RefHeading___Toc181717812)

[Introduction 63](#__RefHeading___Toc181717813)

[Idea Regulations and NCLB Reauthorization
64](#__RefHeading___Toc181717814)

[Other Issues under Idea 67](#__RefHeading___Toc181717815)

[Recommendations 77](#__RefHeading___Toc181717816)

[Chapter Four: Health Care 79](#__RefHeading___Toc181717817)

[Introduction 79](#__RefHeading___Toc181717818)

[Medicaid 80](#__RefHeading___Toc181717819)

[Medicare 90](#__RefHeading___Toc181717820)

[Mental Health Issues 97](#__RefHeading___Toc181717821)

[Veterans 100](#__RefHeading___Toc181717822)

[Recommendations 101](#__RefHeading___Toc181717823)

[Chapter Five: Long-Term Services and Supports
105](#refheading___toc181717824)

[Introduction 105](#__RefHeading___Toc181717825)

[Scope of the Concept 106](#__RefHeading___Toc181717826)

[Recommendations 116](#__RefHeading___Toc181717827)

[Chapter Six: Children and Youth 117](#__RefHeading___Toc181717828)

[Introduction 117](#__RefHeading___Toc181717829)

[The Youth Advisory Committee 117](#__RefHeading___Toc181717830)

[The National Youth Leadership Network
118](#__RefHeading___Toc181717831)

[White House Conference 119](#__RefHeading___Toc181717832)

[Foster Care 120](#__RefHeading___Toc181717833)

[Transition and Employment 120](#__RefHeading___Toc181717834)

[Recommendations 121](#__RefHeading___Toc181717835)

[Chapter Seven: Employment 123](#__RefHeading___Toc181717836)

[Introduction 123](#__RefHeading___Toc181717837)

[The Changing Nature of Employment 125](#__RefHeading___Toc181717838)

[Work Incentives 131](#__RefHeading___Toc181717839)

[Employer Education 135](#__RefHeading___Toc181717840)

[Federal Government Employment 136](#__RefHeading___Toc181717841)

[Other Specialized Programs 138](#__RefHeading___Toc181717842)

[Recommendations 139](#__RefHeading___Toc181717843)

[Chapter Eight: Welfare Reform 141](#refheading___toc181717844)

[Introduction 141](#__RefHeading___Toc181717845)

[The Law 141](#__RefHeading___Toc181717846)

[Problems in Program Administration 144](#__RefHeading___Toc181717847)

[Asset Development 144](#__RefHeading___Toc181717848)

[Financial Education 146](#__RefHeading___Toc181717849)

[Recommendations 146](#__RefHeading___Toc181717850)

[Chapter Nine: Housing 149](#refheading___toc181717851)

[Introduction 149](#__RefHeading___Toc181717852)

[Affordable Housing 150](#__RefHeading___Toc181717853)

[Civil Rights 154](#__RefHeading___Toc181717854)

[Energy and Transportation 157](#__RefHeading___Toc181717855)

[Homeownership 159](#__RefHeading___Toc181717856)

[Recommendations 163](#__RefHeading___Toc181717857)

[Chapter Ten: Transportation 167](#refheading___toc181717858)

[Introduction 167](#__RefHeading___Toc181717859)

[United We Ride 168](#__RefHeading___Toc181717860)

[Job Access Program 171](#__RefHeading___Toc181717861)

[Urban and Regional Mass Transit 173](#__RefHeading___Toc181717862)

[Passenger Vessel and Cruise Ship Accessibility Guidelines
174](#__RefHeading___Toc181717863)

[Air Travel 175](#__RefHeading___Toc181717864)

[Recommendations 178](#__RefHeading___Toc181717865)

[Chapter Eleven: Assistive Technology and Telecommunications
181](#__RefHeading___Toc181717866)

[Introduction 181](#__RefHeading___Toc181717867)

[NCD's *Over The Horizon* Report 182](#__RefHeading___Toc181717868)

[The Digital Divide 183](#__RefHeading___Toc181717869)

[Nondiscrimination 185](#__RefHeading___Toc181717870)

[Specific Issues 186](#__RefHeading___Toc181717871)

[Relay Services 193](#__RefHeading___Toc181717872)

[Closed-Captioning 195](#__RefHeading___Toc181717873)

[E-9-1-1 Access 196](#__RefHeading___Toc181717874)

[The Assistive Technology Act 197](#__RefHeading___Toc181717875)

[Tax Provisions 197](#__RefHeading___Toc181717876)

[Recommendations 198](#__RefHeading___Toc181717877)

[Chapter Twelve: International Affairs 201](#refheading___toc181717878)

[Introduction 201](#__RefHeading___Toc181717879)

[The U.N. Convention 201](#__RefHeading___Toc181717880)

[Global Initiative 202](#__RefHeading___Toc181717881)

[The Organization of American States 203](#__RefHeading___Toc181717882)

[Involving People with Disabilities In Policymaking
203](#__RefHeading___Toc181717883)

[Trade and Commerce 204](#__RefHeading___Toc181717884)

[Recommendations 205](#__RefHeading___Toc181717885)

[Chapter Thirteen: Homeland Security 207](#__RefHeading___Toc181717886)

[Introduction 207](#__RefHeading___Toc181717887)

[Accessible Trailers 208](#__RefHeading___Toc181717888)

[The Rebuilding Process 209](#__RefHeading___Toc181717889)

[The Scope of the Problem 210](#__RefHeading___Toc181717890)

[Emergency Communications 211](#__RefHeading___Toc181717891)

[Recommendations 212](#__RefHeading___Toc181717892)

[Appendix A: Mission of the National Council on Disability
213](#__RefHeading___Toc181717893)

[Overview and Purpose 213](#__RefHeading___Toc181717894)

[Specific Duties 213](#__RefHeading___Toc181717895)

[International 215](#__RefHeading___Toc181717896)

[Consumers Served and Current Activities
215](#__RefHeading___Toc181717897)

[Statutory History 216](#__RefHeading___Toc181717898)

[ENDNOTES 218](#refheading___toc181717899)

[]{#refheading___toc181717791 .anchor}Executive Summary

This NCD annual progress report to the President and Congress covers the
period December 2005 through December 2006. The report is divided into
13 chapters, each dealing with a major area of public policy.

These subject-specific chapters are preceded by an introductory Major
Trends section that identifies overarching themes and issues that are
pertinent to many of the specific topics discussed throughout the
report. Each year's Major Trends section addresses recurrent or
important themes that have come to the fore during the reporting period.
In that light, this year's Major Trends section reflects themes and
concerns that emerge throughout the report, dealing with such urgent
matters as the need for better data in the making of public policy, the
chronic problem of unemployment among Americans with disabilities, the
continuing high levels of dependency on public benefits among many
Americans with disabilities, the absence of effective coordination in
the design of various federal programs and in the activities of
different federal agencies bearing on the same subjects or outcomes, and
the need for greater accountability in the design of programs and in the
assessment of agency performance.

The Major Trends section highlights emerging issues that have come to
the fore during the reporting period, and that NCD believes will be
significant in policy discussion and program development during 2007.
These emerging issues are as follows: pay-as-you-go budgeting,
market-based regulation, asset-accumulation, and the Key National
Indicators.

Chapter One of the report deals with statistics. Its focus reflects the
central importance of statistical data in the formulation and evaluation
of policy and programs in all areas. It underscores NCD's commitment to
the provision of and reliance on quality data when making
recommendations and evaluating programs. NCD's authorizing legislation
requires that we use extant data to inform our federal policy research,
legal analysis, and program evaluations. In a very real sense, our work
as an advisory body for Congress and the White House depends directly on
the quality and availability of federal agencies' data collections.
Accordingly, the chapter begins with a review of the fundamental
problems surrounding the collection and use of disability data,
emphasizing the distinctions between data collection methods and data
categories, on one hand, and the purposes for which the data are or
should be used, on the other.

Data collection issues surrounding the work of the Census Bureau are
specifically discussed, because these data are of great importance and
receive considerable attention. The role of program-specific data, as
distinguished from demographic data on the prevalence of disability in
the population, is then discussed, with a view to identifying some of
the key policy questions regarding the design and effectiveness of
various programs that such data can be expected to ask and answer.
Finally, the chapter proposes some new initiatives in data collection,
designed to broaden the range of inputs into the effort and to ensure
that the criteria used by the Administration and Congress in evaluating
disability programs are appropriate in light of the kinds of data that
are reasonably available.

Chapter Two addresses civil rights. It begins with an extensive
discussion of issues and opportunities under the Americans with
Disabilities Act (ADA). It makes recommendations for legislation to
restore what NCD believes to be the intention of Congress in drafting
the ADA and to reverse the impact of court decisions narrowing and
distorting the law. The chapter then goes on to address both new and
long-standing issues in the enforcement of the law, ranging from new
issues posed by the use of biomarkers to identify people, to the ongoing
problems posed by the application of the ADA in cyberspace.

The chapter then discusses a suit over the accessibility of U.S.
currency to blind people and some of the complexities involved in trying
to balance competing interests when enforcing civil rights laws.

The next section of the chapter deals with voting. It discusses
continuing progress under the Help America Vote Act, and addresses the
interface between that law and the Voting Rights Act.

The next section addresses concerns regarding the Civil Rights of
Institutionalized Persons Act (CRIPA), which is the law that protects
institutionalized people from mistreatment. Building on NCD's major 2005
report on the subject, the section commends the Department of Justice
(DOJ) for its vigor in enforcing the law during 2006, while noting the
need for thorough oversight and concerted action.

The chapter's final section renews NCD's call for genetic
nondiscrimination legislation, explaining how the development of
thinking around reforming our nation's health care system has made
national legislation in this area all the more imperative.

Chapter Three concerns education. Education differs from other major
life activities and settings in one unique way: It is the only sphere in
which society has seen fit to create and enforce a universal legal
entitlement or mandate. Among such basic pillars of life as housing,
health, and employment, our society has not seen fit to create a
categorical legal right to these for all people. Only with the right to
education have we created laws entitling every child to an education,
and requiring parents or other caregivers to cooperate and meet certain
standards in its provision.

For this reason alone, education plays as central a role in public
policy as does any other activity or service of government. Education is
the crucible in which all of society's struggles are fought out and in
which the decisions made by each generation become the guideposts for
forming the next generation.

Consistent with our commitment to universal free public education, it
has been established for a generation that students with disabilities
are entitled to a free and appropriate public education in the most
integrated setting possible. What this means, who will pay for it, how
it is to be monitored, and what will be the consequences of failure to
achieve it are questions that have continued to frame the education
debate over the past 30 years.

The chapter discusses the two major federal laws affecting education in
this country: the Individuals with Disabilities Education Act (IDEA),
which has just been reauthorized, and the No Child Left Behind Act
(NCLB), which is scheduled to be reauthorized in 2007. The first two
sections of this chapter deal with key issues emerging in the wake of
IDEA reauthorization and with disability-related issues implicated in
the forthcoming reauthorization of NCLB. It also addresses several key
points of interface between the two laws that must be harmonized if
either is to be fully effective. Issues addressed include the
interpretation and applicability of such key NCLB concepts as the
requirement for adequate yearly progress and corrective action, because
these concepts relate to the rights and circumstances of students with
disabilities.

The chapter proceeds to a discussion of trends that threaten to further
close the courts to due process and civil rights litigation by and on
behalf of children with disabilities whose rights are at risk of being
abridged. Next the chapter discusses possible incentives for increasing
the number of qualified special education teachers. Following that
discussion, the chapter addresses the potential for full inclusion of
students with disabilities in general education classrooms, as proposed
by a major Florida school district. The chapter concludes with a review
of recent DOJ civil rights enforcement initiatives in higher education,
noting the efforts DOJ has made in the area of physical accessibility,
but also observing the absence of parallel efforts or vigor in the area
of program or information accessibility.

Chapter Four focuses on health care. Today, no area of domestic public
policy affects everyone as profoundly and inescapably as does health
care. What services and modalities exist, who is eligible to receive
them, and how they are paid for all represent subjects of growing and
continual interest, and, too often, problems of intractable and
unfathomable complexity.

News broadcasts may focus on new discoveries and treatments, horror
stories, or accounts of near miracles and shocking neglect, but the core
discussions of health care in America increasingly are driven by
economics. In the end, it seems more and more likely that the costs of
health care will determine the answers to the question of what our
health care system will include and how much care is available. But the
equally profound questions of how those services and care will be
allocated remain topics best addressed through the evolution of law and
public policy.

Although health policy affects everyone, it affects the lives of people
with disabilities in several distinctive ways. These include (1) the
specialized nature of the services that people with disabilities may
need; (2) the sources of payment for those services; (3) the
accessibility of those services; and (4) the attitudes of society,
lawmakers, and practitioners toward the aspirations of people with
disabilities for autonomy and self-determination in the selection and
management of services. This chapter addresses this range of issues,
with emphasis on choices and debates that have emerged during 2006 and
that are likely to prove important in 2007.

Accordingly, the chapter begins with a discussion of Medicaid, which
faces growing demands for cost reduction. The chapter discusses
opportunities for accommodating these pressures in ways that reduce the
adverse impact on beneficiaries with disabilities. The discussion of
Medicaid turns to the situations faced by people dually eligible for
both Medicaid and Medicare. The chapter then discusses means for
accelerating the shift of Medicaid funding from institutional to
community-based services and the implications of that rebalancing for
the solvency of the program. Last, important new innovations in
Medicaid, focusing on consumer-directed services, are discussed.

The chapter then considers Medicare. Recent changes in rules governing
the availability of powered mobility devices are discussed, both on
their own merit and for the broader insight they offer into the
philosophy and direction of the program. Through discussion of the work
of the Medicare Ombudsman, the program's ability to include
beneficiaries with disabilities in its planning and experimentation is
assessed.

The chapter turns to issues of particular concern to people with mental
illness, including health insurance coverage and the tragic rise of
imprisonment as a means of filling the vacuum caused by the lack of
adequate treatment options. The chapter concludes with a reminder that
returning veterans are coming to represent an increasing and important
segment of the disability community, whose health care needs and
experiences are unique and whose needs and potential must receive our
highest, sustained attention.

Chapter Five brings us to long-term services and supports. This chapter
begins with an attempt to put the issue of long-term services and
supports (LTSS) into context. It does this by addressing some of the
definitional complexities surrounding efforts to address the subject.
Citing (see notes 66 through 68) NCD's three major related reports on
livable communities and LTSS published between 2004 and 2006, the
section notes that traditional demarcations between medical and personal
services, and conventional programmatic categories that separate housing
from transportation from personal assistance, further complicate the
effort to come to terms with long-term care.

Recognizing that some elements of the definition and some perspectives
on the problem confronting society are widely understood and shared, the
chapter then considers the institutional bias in Medicaid and other
human services programs that favors nursing home or other institutional
settings over aging in place or living in one's own home and community.
Because Medicaid is the largest source of funding for LTSS in this
country, the section offers a brief history of Medicaid to explain how
the bias came about. It discusses the strategies that have been used to
incorporate greater flexibility into the funding formula and that have
resulted in the emergence of important new options for home and
community-based services and care. A number of these options are
discussed, with emphasis on recent changes in the law, including the
enactment of Money Follows the Person (MFP), which reflects an awareness
of the need to rebalance Medicaid expenditures in ways that will
increase the resources for LTSS.

In a related discussion, the chapter turns to recent changes in the
Older Americans Act that likewise reflect the growing policy consensus
around home-based services and around consumer-controlled and
cash-and-counseling models of service delivery in a growing array of
program settings.

Key changes in the law expanding the availability of cash and counseling
are discussed in this connection. Great hope attaches to these
approaches and NCD attempts to set forth some of the major reasons this
model is creating so much interest.

Following this discussion, the chapter returns to the pressing questions
surrounding private sector long-term-care insurance. Issues in the state
partnership program are discussed, and recommendations are offered for a
study of means to make such insurance more widely available. Finally, in
an effort to build on the long-term-care insurance concept, attention is
directed to the highly innovative AmeriWell plan described in NCD's 2005
long-term services report. Further research into the potential of this
model is recommended in light of its great potential to resolve many of
the difficulties that have stymied other proposals.

Chapter Six concerns children and youth. A chapter dealing with youth
necessarily differs from other chapters in this report. Whereas such a
chapter should address specific laws and regulations, successes and
failures, reports and budgets, it must also address questions of
leadership development. Even more, it must find a way to capture the
voices of youth, as they identify their issues and priorities, and as
they learn and express anew the challenges of life in their own words
and their own way.

In this light, the chapter begins with a discussion of NCD's Youth
Advisory Committee. It then describes the National Youth Leadership
Network. While offering specifics respecting the activities of both, the
chapter also attempts to convey a sense of their more intangible,
longer-term goals, and attempts to convey a sense of the issues and
concerns expressed by youth themselves.

The chapter commends White House efforts to direct attention and
resources to the needs of youth, expressing the hope that these efforts
are inclusive. Next the chapter considers foster care. A major
forthcoming NCD study will provide comprehensive and valuable data for
assessing the effectiveness of current policies and programs, and should
offer insights into areas in need of reform. The chapter's final section
addresses resources for transition and for youth employment, noting the
existence of several valuable resources and suggesting ways that their
relevance to the needs of youth with disabilities can be more fully
ensured.

Chapter Seven addresses employment. The year 2007 promises to be a
watershed year for employment policy. A major NCD report on the subject,
including several issue briefs, will be published. Another landmark NCD
report dealing with federal employment programs in the broader context
of financial incentives in the lives of people with disabilities also
will be published. Finally, the long-awaited reauthorization of the
Workforce Investment Act of 1998, including the vocational
rehabilitation system for individuals with disabilities, is likely to
take place.

These watershed events, however, unfold against an increasingly ominous
backdrop. Research findings indicate that, after peaking in 1994, the
percentage of adults with disabilities who are employed has fallen
steadily. Moreover, although stimulation of mainstream participation in
society through employment was one of the primary objectives of
President Bush's New Freedom Initiative, the negative employment
trajectory, which began in the mid-1990s, spanning administrations of
all parties and a wide variety of economic conditions, has continued
through this decade.

Consistent with the centrality of employment to the destinies and
aspirations of all Americans, NCD has maintained a keen awareness of,
and has paid close attention to, the subject of employment over the
years, including in major reports and in analyses of various dimensions
of the issue in each of its annual status reports. NCD is obliged by
statute to address employment in its annual reports to the President and
Congress, but that obligation has been merely the starting point for the
Council's involvement and concern.

In an effort to contextualize the issues, the chapter begins with a
discussion of the changing role of employment in the economy, and the
rapidly changing nature of employer expectations and labor market
demands. It raises questions about whether our approach to fostering
employment relationships takes full account of all the things that
today's employers want and need. The chapter considers other systemic
changes in the labor market, such as the changing role of fringe
benefits and the decline of single-employer careers, with a view toward
initiating discussion of their implications for our approach to the
stubborn persistence of high unemployment among people with disabilities
who are willing and able to work.

Turning to the specifics that are likely to dominate policymaking and
discussion this year, the chapter addresses the core problem of work
disincentives in social programs. After reviewing the nature of the
problem, the chapter discusses dramatic proposals for work-incentives
reform that NCD believes hold significant promise.

Owing to the emphasis currently placed on education and outreach to
employers, the chapter next addresses questions concerning the impact of
these efforts. While appreciating the timeliness and accuracy of the
information conveyed to employers, NCD suggests that better data are
needed on what kinds of marketing efforts work and why.

In connection with another alarming statistic, the decline in the number
of workers with disabilities in Federal Government employment, the
chapter applauds the concern already shown about this issue and suggests
specific questions and sources of data to fully analyze and respond to
the problem. Finally, the chapter discusses two lesser-known employment
and small-business development programs, suggesting that their role and
relevance needs to be reassessed in light of contemporary conditions and
needs.

Chapter Eight covers welfare reform. This chapter discusses the
reauthorization of the nation's welfare reform law, reiterating concerns
that NCD has noted regarding the status of people with disabilities who
remain on the rolls and whose needs the welfare reform process appears
largely unable to meet. Gaps in services are discussed with a view
toward identifying strategies that could increase the ability of many of
these people to find and retain employment.

The chapter next considers several issues in the administration of
Temporary Assistance to Needy Families (TANF) and related programs that
pose issues for accessibility and participation by people with
disabilities. The chapter raises concerns relating to the relative lack
of asset development strategies in the law. Fear is expressed that
shrinking the welfare rolls has been the easy part of a two-part effort
that needs to include assisting former beneficiaries---particularly
those with disabilities who face barriers to the establishment of
conventional career paths---in securing better and more stable economic
circumstances.

Asset development represents the increasingly indispensable companion to
job placement. A study of the status and well-being of former recipients
with disabilities is recommended to clarify the role that asset
development might play. The chapter also endorses financial education
and financial literacy as elements that should be included in the TANF
program, noting the importance of accessibility and culturally sensitive
outreach if these resources are to be effective in achieving their
intended goals.

Chapter Nine deals with housing. This chapter addresses issues relating
to the supply, affordability, and accessibility of housing for people
with disabilities, including people seeking to remain in or return to
their community in this era of deinstitutionalization. The chapter seeks
to draw out the commonalities and the differences in the issues facing
people with disabilities and issues facing all Americans, particularly
people of limited means, in the current housing environment. The chapter
addresses these issues in light of the turbulence that has affected the
housing market since our last report.

The chapter opens with a discussion of affordable housing, analyzing the
role of the low-income housing tax credit and the various housing
voucher subsidy programs in the affordability equation. The chapter next
turns to civil rights issues in fair housing, examining the adequacy of
procedures to monitor previously achieved civil rights settlements, and
the nature of current reasonable accommodations enforcement litigation
in the housing area. The Civil Rights section concludes with a
discussion of the application of the newly enacted MFP provisions of the
Medicaid law to housing as an integrally related community resource.

In light of our nation's efforts to mobilize tax law and other
incentives on behalf of environmental-protection and energy-conservation
goals, the chapter next explores whether any of the strategies used in
these areas might also be applied to the goals of housing accessibility.
The chapter considers the links that current policy requires to be
forged among housing, transportation, and health policy, discussing ways
that housing and transportation planning have been brought together and
identifying tools that are needed to make such collaborations and joint
planning processes more effective.

In its last section, the chapter returns to the familiar theme of
barriers to homeownership facing Americans with disabilities. But in
light of the sober realizations that in the past year have undermined
many of our assumptions about how homeownership programs are working for
all Americans, the section proposes some new approaches, including
tax-based and asset-accumulation strategies, for increasing
homeownership for Americans with disabilities.

Chapter Ten focuses on transportation. This chapter begins with a
discussion of United We Ride (UWR), one of the major local and regional
transportation initiatives undertaken pursuant to the Administration's
human services transportation coordination and improvement efforts. The
very existence of this effort reflects the growing awareness of people
whose circumstances and lives are complicated or restricted by their
being what may be called transportation disadvantaged. Among this group
people with disabilities are heavily represented and have been the
object of particular concern. The chapter discusses organization and
recent developments in the UWR program and makes suggestions for its
enhancement, including recommendations to make its accomplishments most
tangible and recommendations bearing upon federal legislation that may
be needed to maximize the potential for coordination among federally
funded transportation service providers.

Another important transportation initiative, not specifically targeted
toward people with disabilities but potentially of great importance to
many, is the job access and reverse commute program, aimed at
facilitating transportation to and from work for variously
transportation-disadvantaged people. In light of the importance of such
transportation as a link in the chain of employment, the section
addresses ways in which the program could be made maximally responsive
and accessible to workers with disabilities.

Turning to civil rights in transit, the chapter discusses the positive
role of DOJ in a recent major Detroit public transit case. Noting how
issues under the ADA have evolved from matters of equipment design to
issues of maintenance, program accessibility, and the fairness of
transit-agency policies and procedures, NCD urges the Administration to
maintain active oversight of local transit system accessibility and to
incorporate this emerging set of issues into its monitoring.

Next, the ongoing development of ADA passenger vessel guidelines is
described. Encouraging the Department of Transportation (DOT) to
complete its work on its part of these guidelines, the section once
again notes the growing role of procedure and policy in the enforcement
of the ADA, and also notes the complexities created by the need for
specific sets of guidelines, such as those for cruise ships, to cover
unique environments.

The final section of this chapter focuses on air travel. Cutbacks in the
availability of the DOT's aviation consumer protection hotline are
noted, and the reasons that such cutbacks should be reversed are set
forth. NCD urges DOT and the Transportation Security Administration to
complete work on key guidelines relating to such matters as screening
practices for use with passengers who are deaf, accessibility of
self-service airport ticket machines and other kiosks, and accessibility
of airline Web sites.

Chapter Eleven addresses the broad topic of technology and
telecommunications. This chapter deals with a variety of issues related
to assistive technology and to access to our nation's communications
networks.

The chapter begins with a summary of technology access barriers set
forth in NCD's December 2006 "Over The Horizon" technology report. By
way of illustrating some of the problems and concerns discussed in the
report, the chapter reviews recently published research findings
concerning the persistence and extent of the digital divide.

In connection with specific policy contexts where opportunities for
heightened communications access exist, the chapter discusses the
pending revision of regulations governing the two key civil rights
provisions: (1) Section 255 of the Communications Act and (2) Section
508 of the Rehabilitation Act. A number of procedural and substantive
issues surrounding the content of the new guidelines and concerning
oversight and implementation of these laws by federal administrative
agencies are considered.

Next, the chapter reviews a number of access-related issues falling
under the jurisdiction of the Federal Communications Commission (FCC),
including issues concerning relay services and closed captioning,
suggesting strategies for rationalizing and improving practice and
policy in the oversight of these areas. The chapter discusses
developments under the Assistive Technology Act that promise heightened
coordination in the delivery of services and the development of programs
under the Act. Finally, a recommendation to use the tax law to promote
the development of accessibly and universally designed technology and
services is presented.

Chapter Twelve addresses international matters. This chapter deals with
a number of developments occurring in the international arena during
2006 that are of particular importance to disability policy in this
country and in the world. The chapter begins with a discussion of the
historic United Nations Convention on the Rights of Persons with
Disabilities. It then discusses international efforts to respond to
communications accessibility and efforts by the Organization of American
States to harness the expertise of nongovernmental groups working in the
area of disability policy.

Following this, the chapter discusses the work of the U.S. Department of
State to address disability-related concerns. Finally, the chapter deals
with interconnected legal and technology design issues that have arisen
in the implementation of accessibility standards in recent years.

Chapter Thirteen turns to homeland security. In the past five years, the
term "homeland security" has changed from an abstract concept to one
with multiple meanings. These new meanings are anything but abstract,
depending on how they affect one's everyday life circumstances. At
first, we came to understand it in relation to the risk of terrorism.
Then we came to recognize that natural disasters, too, such as those
resulting from hurricanes, fall under the domain of homeland security.
Most recently, the concept has expanded even further, as we have come to
know that pandemic disease also needs to be seen as a threat to our
homeland security. And the time may be near when long-term climate
change will take its place alongside these other issues in the growing
pantheon of concerns.

This chapter addresses a number of issues and developments from 2006
that highlight the specific ways in which homeland security affects the
lives of people with disabilities. Emergency preparedness and
communication, disaster relief, and other elements of homeland security
are critical issues in all our lives; however, for people with
disabilities, they frequently present different issues and have varying
effects than may at first be apparent.

This chapter also examines the litigation that resulted in an agreement
by the Federal Government to provide accessible trailers to displaced
Gulf Coast residents. The chapter presents suggestions for how the need
for litigation to achieve such basic access rights can be avoided in the
future.

Beyond disaster relief, the chapter addresses issues surrounding the
inclusion of people with disabilities in the rebuilding process, and
recounts some of the observations of organizations that have been
involved in consortium relief and renewal efforts. Next, to create a
context for full discussion of the issues and to assess their relative
impact, the chapter describes the scope of interwoven issues involved in
the effort to restore normal life. Finally, the chapter reviews recent
FCC enforcement action in the area of emergency broadcast communications
and makes suggestions to ensure that television stations across the
country comply with crucial standards for information accessibility in
times of emergency. Faced with so many potential threats and
difficulties, it is all too easy to give way to despair, or to conclude
that emergency preparedness and response are too difficult and ever
changing to be adequately addressed. But NCD believes that with
planning, attention, and outreach, the goals of inclusiveness can be
achieved and enhanced security can be brought to all Americans.

Number range CHAPTER[]{#__RefHeading___Toc181717792 .anchor}Major Trends

NCD's annual report to Congress is largely governed by statute. That is,
it is required by law to be submitted annually, and many of the subjects
it covers are specified in the law. Thus, housing, education, health,
welfare reform, and employment are subjects that we are required to
address.

In addition, NCD has identified other important areas requiring
attention and analysis. Most notably and most sadly among these in
recent years has been the inclusion of the new chapter on Homeland
Security. NCD has also recognized that there are themes, patterns, and
overarching trends that cannot be addressed within the context of any
single subject area. In light of this recognition, the Council has over
the past three years included in its annual report a Major Trends
section.

The Major Trends section attempts to distill the chief overarching
themes in public policy that have emerged during the year and to show
how they unite the different subject areas. Awareness of these themes
and trends lends unity and coherence to all the material, puts recurrent
questions and issues into perspective, and provides common language and
assumptions that people working in various areas of policy can use to
more effectively communicate with one another. Through this Major Trends
section, NCD hopes to further stimulate dialog on the key issues,
relationships, problems, and opportunities facing Americans with
disabilities today.

This year's Major Trends section focuses on pay-as-you-go budgeting,
market-based regulation, asset development, and consumer-directed
services. NCD believes these to be among the chief policy initiatives of
2006 that affect all programs and services aimed at people with
disabilities and that they are likely to influence the design of and the
interactions among programs in the coming years.

[]{#__RefHeading___Toc181717793 .anchor}Pay-As-You-Go Budgeting

Pay-as-you-go budgeting (or "pay-go," as it is commonly known) is a
budgetary principle. Put most simply, it requires that no new program,
whether of direct expenditure through the appropriations process or of
indirect expenditure through the reduction of taxes, can be adopted
unless savings are found to offset its add-on cost to the taxpayer.

Pay-go is likely to become the de facto standard for screening of most
nonnational security-related legislative or budgetary proposals in
Congress. A key question for advocates and for people with disabilities
is how this approach can be utilized in a manner that yields positive
change and continues positive momentum toward full integration of people
with disabilities in society.

Pay-go is normally understood to refer to the current budget cycle. That
is, proposed new expenditures must be offset or recovered in the same
period of time over which they will be made. Though most would agree
that this budget discipline will contribute significantly to the
nation's fiscal health, much depends on key nuances of implementation.
In this regard, three issues are of particular concern to people with
disabilities:

-   By placing financing requirements on new programs and expenditures
    that do not apply to existing or established ones, pay-go may
    inadvertently tip the policy balance against innovation and change
    in some instances. In light of the widening appreciation that many
    disability-oriented federal programs are in need of major reform,
    such an unintentional bias in favor of the current over the new
    could delay needed restructuring.

-   Experimentation and demonstration programs will need to be at the
    heart of efforts to reform a variety of human services efforts
    carried out under federal auspices. Some of these may not bear
    financial fruit, in terms of savings or indirect financial benefits,
    for a number of years. Though Congress should always demand rigorous
    evidence and strong reasons for believing in the potential efficacy
    of experiments and demonstrations, pay-go should at the same time
    retain the flexibility to accommodate savings that will be accrued
    in subsequent budget periods. Otherwise, impatience, however
    understandable, may stifle some of the most productive efforts to
    reengineer federal social programs. These efforts, as noted below in
    our discussion of the Key National Indicators, are crucial to the
    long-term fiscal health of the nation.

-   A pay-go system that does not retain the flexibility to treat
    certain federal expenditures as investments runs the risk of putting
    reform efforts into ruinous short-term competition, both with one
    another and with existing program models within and without the
    disability policy field. Advocates for reform and experimentation in
    areas of disability policy ranging from education to employment
    should not be in the position of having to argue against unrelated
    programs, simply for the sake of creating budgetary headroom.
    Whether programs in agriculture, energy independence, medical
    research, or any of the innumerable other areas of governmental
    interest and commitment are efficient and effective can always be
    debated, but it should not be the responsibility of advocates who
    have no involvement with such programs to conduct that debate, let
    alone to be forced to argue against such programs for the sake of
    the resources they need.

[]{#__RefHeading___Toc181717794 .anchor}Key National Indicators

GAO has consistently emphasized the need for greater accountability and
oversight of all federal programs and expenditures. Most recently, in a
November 17, 2006, paper, GAO listed and described key areas of concern
for the incoming 110th Congress. GAO wrote:

As the pace of change accelerates, the nation is faced with new and more
complex challenges, including globalization, emerging scientific and
technological changes, public health, and environmental issues. One tool
to help address these challenges is the development of key

national indicators to measure progress toward national outcomes, assess
conditions and trends, and help communicate complex issues.

GAO's "Key National Indicators Initiative," under the auspices of the
National Academies, has begun efforts to develop a national indicator
system to inform strategic planning, enhance performance and
accountability reporting, inform congressional oversight and decision
making, facilitate oversight, and stimulate greater citizen engagement.
GAO's work has pointed to the need for a government wide strategic plan,
supported by key national indicators to assess performance, position,
and progress. A government wide strategic plan could provide an
additional tool for re-examining existing programs and proposing new
programs. GAO has also called for a government wide performance report
linked to key indicators to articulate the government's accomplishments.
A key national indicator system for the United States, however, cannot
be fully developed without the interest and critical attention that
congressional involvement provides.[^1]

Although GAO scrupulously avoids the use of alarmist or inflammatory
rhetoric, a number of its reports make clear the real sense of urgency
lying behind these recommendations. Part of that urgency is fiscal. As
the Comptroller-General of the United States, who heads GAO, has made
clear, reform of many programs, including major entitlement programs, is
critical to the fiscal health of the nation, if we are to curtail
looming budget deficits and meet foreseeable long-term-care needs and
other demographic shifts. Less directly stated but equally frightening
is the prospect that, without appropriate and objective tools and
instruments to measure the efficacy of existing programs and assess the
potential impact of proposed reforms, our nation will one day feel
compelled to implement draconian cuts in social programs. These cuts
will result in terrible hardship to many of our society's most
vulnerable members, and in potentially significant decreases in the
standard of living for all.

The discussion of the long-term financing of entitlement and other
social programs necessarily implicates Americans with disabilities.
Programs like Medicare and Medicaid, which are central to the
discussion, provide health coverage for many Americans with
disabilities, to name but two of the foremost examples. Yet, strangely,
perhaps ironically, specific discussion of disability-related programs
has thus far been largely absent from public debate.

Programs aimed at people with disabilities are estimated to cost between
\$300 and \$400 billion per year. Efforts to get a handle on these
figures have long been hindered by their diffusion among agencies and
jurisdictions; however, people with disabilities, advocates, and policy
analysts---as documented in a succession of NCD reports---have long
noted that they lack coordination, administrative coherence, or policy
consistency. Apart from anything else, there is no way that this \$300
or more billion per year can be omitted from consideration as we address
the entire role and basis of government.

NCD hopes and believes that 2007 will witness major efforts to come to
grips with the articulation of key indicators for disability-oriented
programs. NCD pledges its maximum support to GAO in the identification
of issues, barriers, opportunities, and measurement criteria.

[]{#__RefHeading___Toc181717795 .anchor}Asset Development

Whatever may be the case in other areas of public policy, the current
range of programs aimed at people with disabilities, while replete with
many shining examples of leverage, achievement, and success, is widely
regarded to be inefficient and ineffective in bringing about economic
self-sufficiency and freeing individuals from dependency. The reasons
for this are amply and often stated elsewhere; the implications must be
reiterated.

If we are facing as a nation the decision that existing program models
cannot be indefinitely sustained, then the need for effective
alternatives becomes acute. Because we have not discovered any effective
strategy for facilitating economic self-sufficiency through employment
for the majority of working-age Americans with disabilities, and because
we are certainly on course to curtail the subsistence that we have
provided as an alternative, the question that presents itself with
unprecedented starkness becomes: "What then are we to do?"

There exists a widespread perception in our nation, as reflected in the
No Child Left Behind Act (NCLB), that the overall quality of American
public education declined in the final years of the twentieth century.
If this is so, how tragic is it that such a decline should have occurred
at the very time when values of inclusion for students with disabilities
were taking hold. It may be that with renewed attention to education,
all of our children, with and without disabilities, may be better
equipped for the economic competition of the next generation, but it is
by no means clear that we even have the luxury of that time frame.

Under these circumstances, and given our lack to date of an effective
strategy to ensure economic self-sufficiency through employment, new
asset-based strategies to propel people with disabilities into the
ownership society are urgently needed.

The asset-development movement has taken on growing importance and
received increasing recognition and attention in recent years. As
exemplified in program models from individual development accounts to
consumer-directed health care (for example, health savings accounts) to
individual budgets for the recipients of various human services,
recognition of the importance of assets has increasingly influenced
program design. And from policies favoring and economically rewarding
homeownership, to programs that link expanded access to Medicaid in old
age, to the purchase of private long-term-care insurance when younger,
opportunities to enhance asset accumulation through public-private
partnerships have played an important and growing role in the
formulation of policy.

Yet for Americans with disabilities dependent to any degree on federal
programs, asset accumulation, as documented elsewhere in this report and
in prior NCD studies, has remained largely illusory. This is due
primarily to needs-based concepts that penalize and prevent significant
capital formation or asset accumulation by withdrawing benefits and
supports at a level that greatly exceeds the rate at which they can be
replaced.

Much or all of the several hundred billion per year that now goes into
subsistence-oriented income support programs, into rigidly means-tested
in-kind service programs, and into institutional and custodial programs
can and must be redirected into asset-building efforts that will enable
people with disabilities to live with independence and dignity. If we
continue to be ineffective in creating upward mobility through
employment, and if we cannot much longer afford even the minimal
subsistence we now provide, the only viable response is to ask, "What is
the alternative?"

[]{#__RefHeading___Toc181717796 .anchor}Market-Based Regulation

In recent years what is called market-based regulation has garnered
increasing interest. Although not precisely defined, this concept is
generally understood to involve the fashioning of regulations that
harness market forces in the service of policy objectives and that
provide market rewards or punishments among their primary enforcement
mechanisms.

Perhaps the most familiar examples of market-based regulation are the
use of tax preferences to encourage desired behavior and the use of
fines to punish negative activity. But examples and opportunities are
far more numerous and complex. When we provide more funds to schools
that raise test scores, or provide funds to assist them in doing so,
while reducing or withholding funds if they ultimately fail to raise
scores sufficiently, we are using market-based regulation in the sense
of using market forces to influence activities and bring about desired
results. When we allow corporations to merge if they divest of
components that pose antitrust risks, we are using market-based
regulation to balance goals of economic efficiency with competitiveness.
When we grant pharmaceutical companies special protection from liability
in return for producing high-risk vaccines, or enhanced intellectual
property protections for developing orphan drugs, we are using
market-based regulation.

But in the area of disability policy we have barely scratched the
surface. The possibilities of market-based regulation, through the
linkage of desirable corporate practices to discretionary decisions that
make those practices part of an overall profitable and positive
private-public relationship, are legion. Every day the government makes
discretionary decisions that give private entities something they want
in return for things the public good demands---from government research
subsidies in return for public access to the fruits of research, to the
use of public assets in return for payment of fees, to innumerable other
examples. Yet, when it comes to our aspirations for people with
disabilities, given the limited reach of governmental power, we have
done shockingly little, moving barely beyond an antiquated and rigid
paradigm of regulation and compliance or noncompliance.

When it comes to such tasks as employment and training for people with
disabilities, the design and deployment of accessible technology or
universally designed housing, the availability of accessible medical
instrumentation for self-care, and an almost untold number of other
issues of concern and importance, we have done little. Yet the
opportunities are enormous for accommodating private sector interests
through the variety of discretionary decisions government makes daily,
linked to voluntary and reciprocal measures that benefit
disability-related policy goals with little or no adverse impact on
private sector interests or prerogatives.

Such reciprocal relationships are well-established throughout American
history and are in common use today. It is past time that their
applicability to disability policy be systematically explored and
developed. Properly understood and used here as they are in so many
other sectors, they represent a classic win-win situation, and they may
in time lead to revolutionary attitudinal changes throughout society
that no amount of written regulation or enforcement can by itself
accomplish.

[]{#__RefHeading___Toc181717797 .anchor}Chapter One: Disability
Statistics

[]{#__RefHeading___Toc181717798 .anchor}Introduction

It is hardly coincidental that the first chapter of each year's NCD
progress report to the President and Congress has focused on statistics.
As explained by an NCD staffer in an August 2006 presentation to the
American Statistical Association:

NCD's authorizing legislation requires that we use extant data to inform
our federal policy research, legal analysis, and program evaluations. In
a very real sense, our work as an advisory body for Congress and the
White House depends directly on the quality and availability of federal
agencies' data collections. . . .

The simple fact is, other than the mandated administrative program data
for key federal disability programs (e.g., Veterans \[Affairs\] data
requirements, SSA data requirements, OSERS data requirements) there are
few if any Congressionally authorized and mandated disability data
requirements, particularly of a longitudinal nature. For instance, even
the Decennial Census (and the ACS in its stead) does not operate from a
legislative mandate and fiscal appropriation to ensure an accurate
enumeration of tens of millions of Americans with disabilities. As a
result, the amount of space devoted to disability data items on the
Census (and now the ACS \[American Community Survey\]) remains static.
This is so, despite the increasing amount of federal resources expended
each year by our government for hundreds of federal disability programs
and initiatives---i.e., in excess of \$200 billion federal dollars per
year.[^2]

Accordingly, this chapter begins with a review of the fundamental
problems surrounding the collection and use of disability data,
emphasizing the distinctions between data collection methods and data
categories, on one hand, and the purposes for which the data are or
should be used, on the other.

Data collection issues surrounding the work of the Census Bureau are
discussed, because these data are of great importance and receive
considerable attention. The role of program-specific data, as
distinguished from demographic data on the prevalence of disability in
the population, is then discussed, with a view toward identifying some
of the key policy questions regarding the design and effectiveness of
various programs that such data can be expected to ask and answer.

Finally, the chapter proposes some new initiatives in data collection,
designed both to broaden the range of inputs into the effort and to
ensure that the criteria used by the Administration and Congress in
evaluating disability programs are appropriate in light of the kinds of
data that are reasonably available.

[]{#__RefHeading___Toc181717799 .anchor}The Fundamental Problem

With any data collection effort, the threshold question to be asked and
answered is: "What do we need to know?" From this follows the further
question: "How do we find it out?" Behind these seemingly obvious and
deceptively simple questions often lies a host of complexities and
problems, and in few areas of government statistics is this more the
case than in the area of disability statistics.

NCD has highlighted the problems of definition, data reliability,
interagency communication, timeliness, and effective data utilization in
its past reports. Little need exists for their reiteration here. For
those wishing an up-to-date overview, the NCD paper noted above is
highly recommended.

Notwithstanding the chronic nature of the issues, certain developments
in 2006 and likely developments in 2007 raise key issues of data
collection and analysis with renewed urgency. The remainder of this
chapter addresses these critical matters.

[]{#__RefHeading___Toc181717800 .anchor}The Census

Most Americans are familiar with the Census conducted every 10 years as
required by the Constitution. Fewer people are familiar with the interim
censuses and specialized inquiries that the Census Bureau conducts and
publishes periodically between the 10-year major censuses.

Among these, the American Community Survey (ACS) is one of the most
important and widely relied upon. The ACS has contained a disability
question, designed to determine the number of people with disabilities
in our population, but as noted in prior NCD reports, this question, in
its varying forms, has been regarded by many as incapable of eliciting
either comprehensive or reliable data.

In anticipation of the next ACS disability question, scheduled for use
in 2008, the Census Bureau field tested a new version of its disability
question during early 2006. The Census Bureau should be commended for
the procedures it used to seek input into the formulation of its
disability question and for the rigorous method it used to compare the
existing and proposed questions.

On the basis of a number of important technical factors, including such
things as response variation and response rate, the Census Bureau has
concluded that the new question will provide better data than the
old.[^3] Though these improvements are welcome, NCD remains concerned
with the inherent limitations of self-reported data, particularly on a
question that is so inherently subjective to begin with as one bearing
on "functional limitation." As indicated in prior NCD reports, the
highly subjective nature of the information, the unanalyzed issues of
respondent self-image that contribute to the answers, and the potential
lack of respondent knowledge concerning the possible role of technology
in overcoming functional limitations all contribute to making these data
far more equivocal than many other kinds of self-reported data
traditionally collected by the Census. To be sure, this limitation is
largely beyond the Census Bureau's ability to control or overcome, but
it is a problem that nevertheless must condition our evaluation and use
of the numerical data arising from the ACS, and indeed of the data that
will be developed by the 2010 Census.

[]{#__RefHeading___Toc181717801 .anchor}Program Data

From the standpoint of policy, our concern for determining the size of
the overall population of people with disabilities to some degree may be
misplaced. In the evaluation of specific programs, the size of the
target population and the impact of the program on that target
population are important. No single disability program applies to all of
the more than 50 million people who are counted as having disabilities.
Education programs, employment programs, health insurance, and income
support all apply to different subgroups of the population.

Even then, for program outcomes measurement purposes, it may not be the
size of the potential target population but rather the impact on the
actual participating population that matters. For example, while the
vocational rehabilitation system for people with disabilities (discussed
in Chapter Seven) deserves to be held accountable for the proportion of
eligible people with disabilities seeking jobs that it does or does not
reach, a far more telling assessment would surely arise from data
showing the impact of the program on the vocational status and income of
those who had participated in or been served by it.

From this it follows that program-specific data are critical,
particularly when outcomes data and evidence-based measures of program
impact are growing increasingly important as arbiters of public policy
in an era of shrinking public resources.

Considerable amounts of program- and agency-specific data are collected
across the spectrum of disability programs. As to the relevance,
comparability, utilization, and timeliness of much of this data, we know
less than we should. Though many anecdotes exist regarding the
usefulness of this data collection effort, no overall sense of the scope
of our efforts, the cost, or the relevance can be found.

What is needed therefore is a high-level review of all statutory and
discretionary data collection efforts, including the methods used to
aggregate or compare datasets, the methods of data mining available and
customarily used, and, most important, the extent to which existing or
readily attainable data are useful to the Office of Management and
Budget (OMB) in evaluating existing programs using the Program
Assessment Rating Tool or are useful to the Congressional Budget Office
(CBO) in "scoring" legislative and budgetary proposals for new or
modified programs.

NCD therefore recommends that the President appoint a national
commission, including representatives from OMB, CBO, NCD, and the
Interagency Committee on Disability Research (ICDR), to review all
existing statistical and data collection efforts in light of the
methodologies used by OMB and CBO in evaluating existing or proposed
programs and expenditures. This should be done with a twofold purpose:
(1) making the data as responsive to these evaluative practices as
possible and (2) ensuring that CBO's and OMB's criteria reflect program
goals and realistically recognize the limits of data in many situations.
This commission should prepare a report to the President and Congress
that includes specific recommendations for collecting data and updating
the evaluation criteria to ensure that programs are fully and fairly
vetted and judged.

[]{#__RefHeading___Toc181717802 .anchor}Experimentation

The notion of experimentation in data collection may at first seem
strange. But the notion of collecting baseline data, in the context of
demonstration projects or other new initiatives, is well understood.
Within this context, the paragraphs that follow include additional
proposals for experimentation and innovation.

From time to time, suggestions and representations are made regarding
the efficacy or impact of a given intervention or variable. One such
example includes a belief commonly held over the years by educators of
people who are blind that those individuals taught to be literate in
Braille tend to have far higher rates of employment as adults than do
those educated using synthetic speech. Additional empirical data are
needed to support such key decisions in our approach to the education of
children who are blind, and such targeted research emanating from the
field would represent a valuable contribution to our knowledge.

In other areas, too, similar claims exist and need to be investigated
fully. Therefore, NCD recommends that Congress create a disability
statistics field-initiated research (FIR) program, under which
advocates, researchers, and disability organizations may apply for
funds, and receive other forms of technical assistance, to study claims
about the efficacy or impact, positive or negative, on various major
life functions (working, learning, community living, or other) of any
number of practices, interventions, or variables. Beyond investigation
of claims, the new FIR program should facilitate the conduct of
demonstrations and major longitudinal or other research studies designed
to evaluate and maximize a wide range of interventions, approaches, and
strategies in education, employment, health care, and other key spheres
of life. The program should be administered by ICDR or the National
Institute on Disability and Rehabilitation Research, and be based on
guidelines that will allow for the selection of proposals on
well-understood grounds, and that will ensure the technical support
necessary for the research to be carried out effectively and
disseminated fully.

[]{#__RefHeading___Toc181717803 .anchor}Recommendations

***Recommendation 1.1:*** NCD recommends that the President appoint a
national commission, including OMB, CBO, NCD, and ICDR, to review all
existing statistical collection and data collection efforts in light of
the methodologies used by OMB and CBO in evaluating existing or proposed
programs and expenditures.

***Recommendation 1.2:*** NCD recommends that Congress create a
disability statistics FIR program, under which advocates, researchers,
and disability organizations may apply for funds, and receive other
forms of technical assistance, to study claims about the efficacy or
impact on various major life functions (working, learning, community
living, or other) of any number of practices, interventions, or
variables. Beyond investigation of claims, the new FIR program should
facilitate the conduct of demonstrations and major longitudinal or other
research studies designed to evaluate and maximize a wide range of
interventions, approaches, and strategies in education, employment,
health care, and other key spheres of life.

[]{#__RefHeading___Toc181717804 .anchor}Chapter Two: Civil Rights

[]{#__RefHeading___Toc181717805 .anchor}Introduction

This chapter begins with an extensive discussion of issues and
opportunities under the Americans with Disabilities Act (ADA) and
recommends legislation to restore what NCD believes to be the intention
of Congress in drafting the ADA and to reverse the impact of court
decisions narrowing and distorting the law. It addresses new and
long-standing issues in the enforcement of the law, ranging from new
issues posed by the use of biomarkers to identify people, to the ongoing
problems posed by the application of the ADA in cyberspace.

The chapter then discusses a suit over the accessibility to blind people
of U.S. currency and some of the complexities involved in trying to
balance competitive interests when enforcing civil rights laws.

The next section of the chapter deals with voting. It discusses
continuing progress under the Help America Vote Act and addresses the
interface between that law and the Voting Rights Act.

Discussed in a subsequent section are concerns regarding the Civil
Rights for Institutionalized Persons Act (CRIPA), the law that protects
institutionalized people from mistreatment. Building on NCD's major
report on the subject, the section commends the Department of Justice
for its vigor in enforcing the law during 2006, while noting the need
for thorough oversight and concerted action.

The chapter's final section renews NCD's call for genetic
nondiscrimination legislation, explaining how the development of
thinking around reforming our nation's health care system has made
national legislation in this area all the more imperative.

[]{#__RefHeading___Toc181717806 .anchor}The Americans with Disabilities
Act

The ADA Restoration Act

The ADA of 1990 has justly been regarded as one of the civil rights
landmarks of the twentieth century. But if the ADA is to remain fully
vital into the twenty-first century, it is important that key
clarifications and reforms be adopted. Lower-court decisions that
emerged during 2006 underscore the need for action in a number of key
areas. These decisions, together with the findings of NCD's ADA
Implementation Project (report scheduled for publication in early 2007),
have increased the sense of urgency and opportunity surrounding several
measures designed to restore the law to what NCD believes was its scope
as originally contemplated by Congress.

The law needs to respond to many changes that have occurred since its
passage, and the harmful impact of several court decisions needs to be
addressed. For this reason, NCD has proposed and now renews its call for
adoption of the ADA Restoration Act.[^4]

Several major NCD reports have detailed the key court decisions and
analyzed their effects on the lives of people with disabilities.[^5]
These reports are highly recommended to those seeking a fuller
understanding of this subject. Rather than reviewing the extensive
historical and legal data already amassed, the sections that follow
highlight three key areas in which reform is needed.

Definition of Disability

Concerns about the definition of disability were most recently discussed
in NCD's September 20, 2006, letter to the chair of the House Judiciary
Committee's Subcommittee on the Constitution, in connection with its ADA
oversight hearing.[^6] When the ADA was passed, it is doubtful anyone
would have imagined that a large proportion of important court cases
dealing with the act would concern jurisdiction. That is, the belief was
that these cases would deal with whether the person seeking protection
under the ADA met the statutory definition of being a person with a
disability, rather than with such questions as whether discrimination
had occurred, or whether a reasonable accommodation was required, or
whether a proposed accommodation was unduly burdensome to the employer
or public-accommodation entity. Yet, 16 years after enactment of the
law, precisely that has become and continues to be the case.

This current situation has evolved largely because of court decisions
that have emphasized case-by-case determinations of whether a particular
person is "an individual with a disability" subject to the protection of
the law. The law provides that a person has a disability, and hence is
covered, if the individual's physical or mental impairment
"substantially limits" or constitutes a limitation on one or more major
life activities. But by their erratic and case-by-case methods of
deciding what is an impairment, what are major life activities, what
degree of limitation is substantial, and what connection is required
between the particular impairment and the life activity in question,[^7]
the courts have, perhaps unintentionally, created more confusion and
uncertainty. A given type or level of impairment may substantially limit
one major life activity but not another, and may substantially limit a
major life activity in the view of one court but not in the view of
another.

Furthermore, by holding that the determination of whether an individual
is a person with a disability needs to be made after "mitigating
measures" have been taken into account, individuals with disabilities
may be facing potentially greater obstacles in seeking the protection of
the ADA. These mitigating measures may involve assistive technology
(AT), but far more often, judging from the cases surveyed in early 2006
by the Congressional Research Service (CRS),[^8] they involve medical
treatment, principally drugs. Although the Supreme Court decision
establishing the mitigation requirement[^9] and the numerous lower-court
decisions interpreting and applying it are not entirely clear or
consistent, it appears that the individual employee or job seeker
requesting reasonable accommodations will find no protection under the
ADA unless medical measures to control the condition and its
substantially limiting effects, such as blood sugar or seizures, have
been attempted. If they succeed and the employee no longer needs the
accommodation, then there is no longer any ADA issue. If they fail, only
then must the accommodation request be addressed on its merits, and even
then, there are barriers to its consideration, such as that the
individual will be deemed medically unqualified to do the job though not
disabled.

What the courts have not made clear is how extreme or how certain such
mitigating measures must be, what weight should be given to possible
side effects as a justification for an individual's refusal to use them,
or how they should be paid for. Nor have the broader and most troubling
questions been adequately addressed about how much control over their
lives people are required to cede to physicians or employers to claim
their right to work.

Once again, the specifics of all the major cases involved have been
extensively explored in earlier NCD and CRS reports. Further efforts to
resolve these issues through the judicial process are likely to result
only in more, not less, confusion. Corrective legislation is badly
needed and should do two things. First, it should set out clear
standards by which courts or administrative tribunals can determine
whether an impairment constitutes a substantial limitation or barrier to
any of the major life activities, especially including work, covered
under the ADA. Second, the law should make clear what limits exist on
the extent of mitigating efforts to which people must subject
themselves, the risks they must take, and the costs they must bear to
remain covered by the law. Ideally, as states like California have done,
with no apparent increase in litigation or costs to business, the
mitigation requirement should be eliminated. The law is quite adequate
without such a requirement for determining whether an individual with a
disability is qualified for a job and whether a request for
accommodations is reasonable.

Sovereign Immunity

The historic Supreme Court decision *Tennessee v. Lane* established the
right of people with disabilities to sue states for monetary damages
under Title II of the ADA when denied basic civil rights protections,
such as physical access to the courts. But in itself and in light of
other decisions, the *Lane* decision led to uncertainty and anxiety for
people with disabilities. These concerns have not been resolved in the
intervening two years.

The uncertainty arises from two sources. First, although the *Lane*
decision establishes that Congress had the constitutional authority to
subject state governments to suits for monetary damages for violations
of Title II of the ADA, the Court did not make clear whether all alleged
violations of Title II can be redressed by suit, or only those deemed to
involve denial of the most fundamental civil rights such as access to
the courts. Subsequent decisions have not clarified this point.

The second problem left in the wake of *Lane* is that the Supreme
Court's earlier decision in *Garrett*[^10] held that suits under Title I
of the ADA against states for employment discrimination were not
permitted. The basic reasoning for this decision was that Congress
lacked constitutional power to authorize such suits. The reason Congress
lacked such power was that states have sovereign immunity under the
Eleventh Amendment to the Constitution. They cannot be sued by private
citizens (although the Federal Government can always sue them) without
their consent.

But sovereign immunity can be waived. Some states, in some
circumstances, have waived it. The trouble with this voluntary waiver
approach is that it results in people's rights under federal law
differing from state to state, depending on what waiver the state has
implemented, if any.

A solution is believed to lie in the Spending Clause of Section Eight of
Article I of the Constitution. Congress has long and often conditioned
the availability of federal funds to agreement by states to comply with
various requirements and conditions, including, as in the case of
Section 504 of the Rehabilitation Act, the waiver of sovereign immunity.

The courts have upheld the right of Congress to condition federal funds
on the waiver of sovereign immunity. Legislation to incorporate such
waivers in the ADA and the Age Discrimination in Employment Act was
introduced in the 109th Congress.[^11] NCD recommends that such
legislation be reintroduced and enacted without delay.

Major Developments During 2006

Discussion in the preceding subsection indicates that the ADA should be
updated to ensure its continued vitality. But even without these
reforms, the ADA remains a powerful and important element of our lives
and a cornerstone of national policy.

Project Civic Access

Project Civic Access (PCA) is a major ADA initiative by the Department
of Justice (DOJ) aimed at helping local governments comply with Title II
of the ADA. NCD commends DOJ for this initiative, because it directs
important attention and resources to local and community services and
facilities that affect the daily lives of many people, and also because
it directs those resources to smaller communities that may be in
particular need of the assistance. Seen in this light, ADA
implementation becomes not merely the fulfillment of legal requirements
but also a means to the achievement of the goals set forth in NCD's
*Livable Communities* report.[^12]

As part of the sixteenth anniversary celebration for the ADA on July 26,
DOJ reported that PCA had reached 147 settlements with 139 local
government entities. One case that is typical of the scope of these
settlements was reached in the city of Waukegan, Illinois. As reported
in the anniversary press release, the city agreed to implement a variety
of physical improvements to public facilities and to correct
deficiencies in a number of its policies and practices.[^13] But one
thing that is striking about the reported settlement is that a number of
the buildings and facilities involved were new, and were designed and
constructed long after the ADA standards came into effect. Consequently,
if the PCA project is to have maximum effect, the following key question
needs to be addressed: "How was it possible that a medium-size city and
its engineering or architectural contractors could engage in major
public works projects either without knowledge of, or with inaccurate
knowledge of, or perhaps with indifference to the applicable
requirements of the ADA?"

In previous annual progress reports, NCD has raised this same question
in relation to Fair Housing Act litigation and technical assistance and
public education by DOJ and the Department of Housing and Urban
Development. NCD, while applauding these efforts, has urged the agencies
to undertake research aimed at discovering why, after years of outreach,
so many people who should be expected to know better either don't know
the law or don't take it seriously. Until DOJ confronts this question,
the danger is all too great that the victories won through PCA will have
to be won again after the next round of public building is complete.

These concerns give rise to a related problem. What follow-up or
monitoring procedures has DOJ put in place to ensure that the
commitments of PCA agreements are carried out fully and to ensure that
the mistakes giving rise to the need for the agreements will not recur?
Typical commitments made by signatories, including commitments to staff
training, suggest an appropriate and primary role for self-monitoring,
but in the absence of penalties for noncompliance with the agreements,
NCD remains concerned that more oversight may be necessary.

A spotlight has been shined on follow-up issues by the NCD ADA Impact
Study (which was released on July 26, 2007). All outreach and
enforcement efforts need to be assessed from the standpoint not only of
the immediate actions and improvements they bring about, but also of the
durability and continuity of the awareness and capacities required to
ensure long-term compliance. Put another way, compliance without
accompanying institutional change to ensure long-term adherence to the
law is only half a victory.

Accordingly, NCD recommends that DOJ develop strategies to ensure that
the lessons of PCA agreements can be carried forward by the local
government entities involved. These efforts should include the
development of measures to determine the effectiveness and impact of all
the department's ADA outreach, technical assistance, training, and
public education efforts. Only then are we in a position to determine
what works best and why, to ascertain why and how notable failures to
comply with the law have occurred, and to develop oversight mechanisms
that will create the highest probability of long-term continuity in
adherence to PCA agreements and the underlying law.

National Settlements

Within the same week in January 2006, DOJ reached a settlement with one
national movie theater chain, and there was a court decision in the case
of another.[^14] These cases both resulted in accessibility enhancements
to several hundred stadium-seating-style theaters across the nation. In
another example later in the year, DOJ reached a settlement with a
national retail chain, Jo-Ann Fabric, which again means that a
significant number of stores in numerous locations will become more
accessible as a result.

NCD believes that efforts directed to national entities often represent
the most instrumental use of scarce public sector enforcement resources.
To that end, NCD is interested in the case-finding or
pattern-and-practice work done by DOJ or by state human rights agencies.
In this light, NCD urges the DOJ Civil Rights Division to issue
technical assistance guidance describing how pattern-and-practices or
multisite ADA investigations are initiated, and explaining how isolated
complaints are correlated with other isolated complaints to suggest
national entities or multisite public accommodations that may be
appropriate for broad-based scrutiny.

The ADA Accessibility Guidelines

In last year's report, NCD commended the U.S. Access Board for its
development of revised ADA Accessibility Guidelines (ADAAG) and
expressed appreciation for the DOJ's intention to review, seek comment
upon, and adopt these guidelines. But if the lack of published follow-up
is any indication, the process has lost its momentum and DOJ has taken
no further action during 2006.

NCD is very concerned with this lack of follow-up. If public comment or
departmental review, both of which were understood to be well under way
by the end of 2005, disclosed problems with the proposed guidelines,
that should be announced and efforts to remedy the problems should be
commenced through whatever procedures are considered appropriate. But
if, on the other hand, the guidelines are adequate, they should be
adopted. In the meantime, the Department of Transportation has adopted
those portions of the ADAAG dealing with transportation.[^15]

NCD recommends that DOJ immediately issue an appropriate advisory
indicating the current status of the revised ADAAG; clarifying its
intentions or expectations with respect to their modification,
acceptance, or rejection; and setting forth time frames for all
anticipated actions.

Growing Concerns

A number of ongoing issues that have been discussed in previous NCD
reports, as well as new ADA-related issues, warrant attention.

e-Commerce

During the final months of 2006, considerable public and press attention
was directed to a lawsuit filed by the National Federation of the Blind
(NFB) against the national retail chain Target. The suit alleges
violation of Title III of the ADA by reason of inaccessibility of
Target's Web site for people with disabilities. This inaccessibility is
harmful because it prevents people with disabilities, particularly those
who are blind and use screen-reader software, from shopping on or
through the site. As of this writing, the federal district court has
denied Target's motion for dismissal of NFB's complaint. To the degree
that that motion by the defendant for dismissal of the case was
predicated on the claim that the ADA has no application in cyberspace,
the judge's ruling represents an interim rejection of Target's threshold
claim.

Word is awaited on whether Target will appeal the judge's ruling. But
for those who have followed the law in this area, the judge's ruling is
no surprise. As reflected in a paper published by NCD in 2004,[^16]
several court rulings have held that at least where there is a
connection (or nexus) between the services and activities available on
the Web site and those taking place at the public accommodation's
physical place of business (as there apparently would be in various
instances under Target's business model), commercial Web sites can be
covered by the ADA.

In last year's progress report, NCD recommended that DOJ prevent further
confusion and needless litigation by proposing regulations under the ADA
that would implement the position that the Department first articulated
almost 11 years ago in a famous letter to Senator Harkin of Iowa. In
that letter, DOJ expressed the position that information made available
to the public by electronic means needed to be made available in
alternative formats to those prevented by disability from accessing the
electronic resources. In the decade that has passed since issuance of
the Harkin letter, the systems for making information electronically
available to the public, and for facilitating interaction and commerce
between businesses and customers, have been transformed beyond
recognition. Methods for making Web sites accessible are documented and
in widespread use, and e-commerce has grown exponentially in every phase
of our economy.

Though the modalities have changed, there is no reason to believe that
the principle of law has, and indeed nothing that DOJ has done or said
in these intervening years suggests that the Department has changed its
fundamental view. Yet, because of DOJ's failure to address the issue
squarely, needless litigation and uncertainty have multiplied.

A December 2005 mediated settlement (discussed in the February 2006
issue of the Department's publication *Disability Rights Online
News*)[^17] further demonstrates the need for concerted action. In this
particular case, TicketMaster agreed to enhance its telephone-based
resources for selling tickets for wheelchair-accessible seating. The
need for upgrading this service arose from the fact that TicketMaster's
Web site did not have the capacity to supply these tickets. If the Web
was not covered by the ADA, there would have been no legal reason for
TicketMaster to provide alternatives to its Web site for selling
wheelchair seating. If DOJ were to make clear when and how requirements
of Web accessibility attach under Title III of the ADA, cases like the
one involving TicketMaster or the pending Target appeal might well be
avoided.

If DOJ no longer believes that Title III covers the Web, and if it
wishes to repudiate the court decisions that increasingly support the
connection or nexus theory, then it should say so. But if the Department
continues to believe that Title III has a role to play in cyberspace, if
it stands behind the several amicus briefs it has filed over the years
supporting coverage in various contexts, and if it wishes to bring
clarity and predictability to the law and to the decisions of consumers
and businesses alike, then NCD strongly reiterates its recommendation
that DOJ immediately begin the process of developing guidelines to
supplement the existing ADA Standards and clarifying when and how Web
sites are covered by Title III.

Biomarker Identification

If the Internet issue is a relatively old one, the questions posed by
new approaches to personal identification and tracking are new and
perplexing. At a time when hardly a day goes by without word of some
plan to use iris scans, face recognition software, strands of DNA, or
other biomarkers to verify an individual's identity, questions of how
these various approaches may affect people with disabilities need to be
incorporated into the discussion from the earliest possible point.

The key ADA-related questions take two basic forms. First, there are
questions about whether the particular biomarker used will be available.
Eye scans would be of little relevance for people who use artificial
eyes, just as fingerprints are not available from people who have
prosthetic upper limbs. Similarly, voice recognition will not be
available with people who do not speak.

Other examples could be advanced, but the point is clear. With almost
every biomarker, some backup strategy must be devised for people who,
owing to disability, cannot use the primary indicator. But that is not
the only concern. The second and equally important concern relates to
the technology through which individuals interface with the various
identification systems and equipment. For example, a person asked to
look steadily into a scope so that eye scan identification can be made,
even if able to provide the necessary data, may not necessarily be able
to hold the scope steady or perform other physical actions incidental to
the process. Likewise, if the device is unfamiliar or complex, a person
with intellectual disabilities may not be able to master its use, and
people with sensory impairments certainly can anticipate all manner of
difficulties.

As each day brings more devices, proposals, and experiments, the danger
grows that the interests of people with disabilities will be overlooked.
In light of the understandable sense of urgency surrounding many of
these projects, that danger is especially great. For this reason, and
given the interdepartmental nature of the issues, NCD recommends that
the Attorney General (pursuant to Executive Order of the President, if
necessary) convene an interagency task force, including DOJ, the
Departments of Homeland Security and Transportation, such other agencies
as are deemed appropriate, and, to the maximum extent consistent with
national security, representatives of the disability community, to
develop procedures for incorporating accessibility assessments into the
development and testing of all new security systems and devices.

[]{#__RefHeading___Toc181717807 .anchor}Section 504 of The
Rehabilitation Act

Perhaps not since the famous golf cart case *Casey Martin v. PGA
Tour*[^18] has a disability-related case received as much attention as
has the case involving the accessibility of our nation's currency. A
federal district court has ruled that the U.S. Treasury, by failing to
do anything to make it possible for people who are blind to
independently distinguish the various denominations of currency, has
violated Section 504 of the Rehabilitation Act.[^19]

Amidst the storm of controversy swirling around the case, it is not
NCD's place to express an opinion on the legal soundness of the
decision. Even among major consumer organizations of blind people,
vigorous disagreement exists. The American Council of the Blind that
brought the case hails the court's decision as a great victory, but the
NFB denounces the decision as, at the least, insulting and, at worst,
harmful to the interests of blind people. Whatever view one adopts on
the subject, and however the case is ultimately resolved, a number of
the key features of the court's decision, and several of the points that
have become prominent in the ensuing public debate, warrant attention
and shed light on some of the important choices our nation faces.

The International Dimension

One factor that appears to have played a role in the decision was
evidence regarding the practices of other nations. It appears that of
180 nations that issue paper currency, the United States may be the only
one that does not use any variations in size, texture, color, or
markings to distinguish the various denominations of bills.

What is significant about this is not, as some may initially think, that
U.S. courts are looking to international sources for guidance in how to
apply our laws. Rather, the significance of this comparison relates to
the questions of cost and technical feasibility. In the modern world,
however, it may be that the decisions made and the criteria used are
unique to each nation, whereas the technology employed to create and
protect currency are not.

Undue Burden

In the wake of the decision, opponents, including representatives of the
government and representatives of various affected industries, have
pointed out the high cost associated with reshaping or otherwise
redesigning the currency. A representative of the vending machine
industry has estimated, for example, that the change would cost that
industry alone \$560 million.[^20]

From the legal standpoint, an interesting question is whether costs to a
third party, not the defendant in the suit, can properly be taken into
account in determining whether the proposed solution constitutes an
undue burden as defined by law. From the practical or political
standpoint, such costs will inevitably matter, whether formally or not.
But precisely because the estimates by these and other entities are
large, another key question is raised.

Leaving aside the lack of any outside verification of their accuracy,
estimates of cost, even cost to the government alone, tend to be bandied
about and discussed without a context. Therefore, the key question, as
with all "undue burden" claims, is what cost is reasonable and what is
excessive. The law sets forth a number of criteria to be considered in
answering this question,[^21] but none are terribly useful in answering
the question when the defendant is the U.S. government. Assuming for
purposes of argument a compliance cost of say \$1 billion, a shocking
figure to be sure, how is that figure to be understood? Should it be
divided by the number of people likely to benefit from the change,
assuming that number can be estimated? Should it be divided by the
number of people with significant visual impairments in the country? Or
should it be divided by the total number of Americans, approximately 300
million, in which case a hypothetical \$1 billion cost would break down
to just over \$3 a person?

Ideally, another question should be asked before deciding whether the
hypothetical \$1 billion is excessive. What are the costs to blind
people and to the economy of not being able to independently identify
the currency? These costs might include the costs of people hired to
read, the costs of mistakenly giving the wrong bill, the costs of
transactions not undertaken, and potentially others. Even if we could
agree on what costs should be included, there is no conceivable way to
measure them. The survey techniques available are flimsy indeed when
measured against the ability of large entities to estimate their costs.
Yet leaving aside the difficulty of measuring, the question remains
whether the costs of an accommodation by the government should be
measured in terms of the cost to the government or assessed in terms of
the difference between current and projected cost to the entire economy.
Beyond this, should benefit to society, if measurable, ever be a
consideration?

In the end, as the foregoing questions suggest, the issue in
accommodations situations is rarely about actual cost. Far more, it is
about cost-shifting.

Assistive Technology Versus Universal Design

In the International Dimension section above, one role for technology
was noted. But technology plays another important role in this debate, a
role that has not received nearly the attention that it should.

Devices exist that can identify currency. According to anecdotal
information, the Department of the Treasury may even have participated
in funding some of the research on these devices. One approach to an
accessibility problem is to develop and provide AT to solve the problem,
and presumably all blind people who wanted it could be provided with a
currency identifier device. But the thrust of this case points in the
direction of universal or accessible design. Rather than seeking the
provision of currency identification devices to be carried around by
citizens, the suit seeks to make the currency more accessible without
regard to the need for AT.

Although often unstated, this dichotomy, and again the cost-shifting
implications of the choice, runs through many debates over how best to
meet accessibility needs. We have struck the balance differently in
different contexts. Though a review of the recent history of these
decisions is beyond the scope of this chapter, it is important to
remember that complex interactions among technology, economics, and
politics usually determine the outcome.

In any event, whatever the outcome of the case, the opportunity for
thoughtful discussion and public education should not be lost.
Responsibility in this regard falls most heavily on the government. For
that reason, NCD recommends that the Department of the Treasury or other
Administration spokespersons avoid inflammatory rhetoric and, instead,
move beyond mere assertions of costliness or impracticality and explain
the criteria being used and the reasoning behind their conclusions.

[]{#__RefHeading___Toc181717808 .anchor}Voting Rights

Help America Vote Act

The Help America Vote Act (HAVA) became fully effective on January 1,
2006. The years of preparation since its enactment in 2002 came to
fruition in the primary and general elections of 2006. HAVA has already
done much to enhance the accessibility of the voting process to
Americans with disabilities. As NCD has recently observed, it is a "work
in progress" with much more positive potential to be fulfilled.

Voluntary Voting Systems Guidelines

During 2006 the U.S. Election Assistance Commission (EAC), one of the
entities created by HAVA to oversee and implement the law, has been
engaged in the development of voluntary voting system guidelines (VVSG).
In last year's progress report, NCD commended EAC for its efforts in
this regard. NCD reiterates that commendation now and expresses its
appreciation for the opportunities the Council has had to advise the
commission on a number of issues relating to VVSG.

The year 2007 will witness continued refinement of the guidelines, but
it will be a milestone in their development in another way as well. In
December 2007, each state's accessible voting machine technology will be
measured against the standards of VVSG.

In this light, NCD has offered a number of suggestions to the EAC for
further enhancements in the guidelines. These suggestions address the
privacy of all votes cast by people using alternative voting systems.
They would ensure the accessibility and privacy of all paper ballots and
bring about greater comprehensibility of the ballot to voters using
audio output technology. These recommendations are set forth in detail
in NCD's recent statement, "Voluntary Voting System Guidelines."[^22]
NCD recommends that the EAC adopt these recommendations and incorporate
them into the VVSG.

Monitoring and Enforcement

The need for DOJ to file suit against the State of New York for failure
to comply with HAVA dramatically illustrates the need for continuing
monitoring and oversight through the cooperative efforts and pooled
resources of the EAC and DOJ.[^23] NCD is keenly interested in how DOJ
approaches HAVA oversight from the standpoint of the allocation of
responsibility between its disability rights and voting rights units.

The Voting Rights Act

For the goal of fully inclusive civic participation to become a reality,
the integrity and accessibility of the voting system must be ensured.
Only through a seamless and well-coordinated implementation of a number
of related laws can these goals be met.

The previous discussion focused on HAVA, but the Voting Rights Act (VRA)
is another important component of the effort.[^24] NCD had occasion
during 2006 to commend the bipartisan leadership of the Senate Judiciary
Committee for their efforts on behalf of reauthorization of the
VRA.[^25] These efforts extended to outreach with civil rights
organizations. Although the notion of a role for the VRA in securing
voting rights for people with disabilities may at first seem strange,
given that the law was clearly written with racial, ethnic, and language
minorities in mind, and for the purpose of remedying historic
discrimination against those voters, the spirit of the law clearly
implicates it in a government-wide response to discrimination against
voters on the basis of disability.

NCD believes it is of paramount importance now to establish ongoing
mechanisms that ensure that the VRA will continue in the future to
adequately protect the rights of all voters, including voters with
disabilities as effectively as it has protected the citizenship rights
of ethnic, racial, nationality, and language minorities over the years.

For the VRA to play a role in protecting the rights of people with
disabilities, DOJ must be able to identify when the interests of people
with disabilities are materially and adversely affected by changes in
voting rules. Procedures need to be developed (possibly but not
necessarily requiring congressional action) for vetting major changes in
voting procedures or rules that have a significant impact on voters with
disabilities, just as they are for other protected groups. For example,
recent state laws imposing heightened voter identification requirements
have been the subject of litigation because of their disproportionate
impact on poor people who cannot afford to buy the necessary document
copies, and because of their impact on other groups for other reasons.
But their potential, if unintended, impact on the suppression of voter
participation by people with disabilities has not been as widely
discussed.

One illustration may be useful to highlight such adverse impacts. New
state laws purporting to restrict perceived coercion or manipulation of
voters can pose risks for those involved in voter education. For those
seeking to help newly empowered voters with disabilities, including
voters with intellectual or cognitive disabilities, participate
effectively in the electoral process, the risks may be especially great
and brutally chilling.

Whenever the DOJ Voting Rights Section, working in conjunction with the
Disability Rights Section, is called on to review voting system changes,
it must be alert to the possibility that measures that are neutral on
their face can have disproportionate implications for voters with
disabilities. Procedures, resources, and attitudes must all be brought
into alignment for this to occur.

For this reason, NCD recommends that DOJ establish procedures for
incorporating disability access into its VRA reviews, and should to that
end create an advisory committee drawn from the disability community to
advise it of access or integrity issues arising in the elections system.

[]{#__RefHeading___Toc181717809 .anchor}The Civil Rights of
Institutionalized Persons Act

In late 2005, NCD issued a major report on the Civil Rights of
Institutionalized Persons Act (CRIPA).[^26] In that report, the Council
made a number of recommendations for improving the effectiveness of the
protections embodied in the Act. With the likelihood that public
programs will be moving toward an approach that makes home and
community-based services a more viable option for many people, the
vulnerability of those who remain in institutions is likely to increase
while their visibility declines.

One of NCD's recommendations was for Congress to hold detailed oversight
hearings on the Act. NCD is not aware that these hearings have taken
place, but NCD does commend DOJ for energetic action on behalf of
institutionalized people with developmental disabilities and people with
psychiatric disabilities. Major investigations into conditions at the
Lanterman facility and other facilities in California, as well as into
facilities in other states, have focused public attention and outrage on
the deplorable conditions at these institutions, but they are likely to
bring about real improvement in the conditions of life for some of our
most vulnerable citizens.

Events close to home in our nation's capital have cast light on abuses
that are almost impossible to conceive of in our supposedly advanced and
civilized society.[^27]

NCD commends Congress for the congressional hearings into the
Washington, DC, situation. But a broader review of our entire approach
to the treatment and care of institutionalized people is still needed.
Apart from questions of when and how people can be enabled to enter or
return to the community, the conditions of life for those who remain in
institutions must never be far from our thoughts.

Accordingly, NCD reiterates its recommendation for broad-based
congressional oversight hearings on the operation of CRIPA and on the
relationship between CRIPA and other related services, laws, and
programs, with a view to identifying legislative enhancements,
monitoring strategies, funding mechanisms, and other measures to ensure
the health and safety of those who remain in institutions or other
custodial settings throughout our nation.

[]{#__RefHeading___Toc181717810 .anchor}Genetic Nondiscrimination and
Privacy

In each of its progress reports over recent years, as well as in papers,
testimony, and other venues tracking the development of the subject, NCD
has explained the growing need for protection of the privacy of genetic
information. As the ability to collect such data has advanced and as
those collecting and using it have appeared to multiply, NCD has warned
of the danger this poses to legal rights and human dignity.

The arguments favoring genetic protection do not need repetition here,
nor is it necessary to catalog the harm that results from the virtually
unrestricted availability of such information for almost whatever uses
insurers, employers, or others choose to make of it. Beyond the known
arguments, NCD would like to add two new issues that have emerged in the
past year.

Although agreement has yet to emerge around the method, a general
consensus has continued to grow that the American health care system has
become dysfunctional. Any major reform in the way health care is paid
for will have to consider genetic testing and will have to restrict its
use for the purposes of denying insurance. With states taking the lead
in adopting health insurance reform plans, nothing approaching universal
coverage will be possible if people can be denied insurance by reason of
genetic tests that may or may not predict illness.

It has become clear that any effort to stem the rate of inflation of
medical costs will require a redirection of resources toward preventive
care. While properly used information on genetic predispositions and
family medical history is vital to the identification of risk factors
and to the fashioning of individual prevention plans, it is hard to
imagine how people can be convinced to submit to the necessary testing
or even to divulge details of their family medical history if they are
forced to live in fear that the data will be used to deny them
insurance, an apartment, a credit card, or a job.

These and other realizations lead inexorably to the conclusion that
unless the collection, use and dissemination of genetic information is
controlled, no meaningful progress in reforming our health care system
is possible.

NCD therefore renews its recommendation for prompt adoption by Congress
of genetic privacy and nondiscrimination legislation that will restrict
the use of such information to legitimate medical purposes; that will
bar the use of genetic predictions as an adverse selection criterion in
employment, insurance, housing, or other settings; and that will include
meaningful penalties to deter violations of the genetic dignity of
Americans.

[]{#__RefHeading___Toc181717811 .anchor}Recommendations

***Recommendation 2.1:*** NCD recommends the adoption of comprehensive
remedial legislation, incorporating the provisions of the ADA
Restoration Act proposed in its 2006 report, *Righting* *the ADA.* The
legislation should create objective and knowable criteria for use in
determining when and whether a particular impairment constitutes a
substantial limitation to a major life activity. The legislation should
eliminate the mitigation requirement, as a number of state laws already
do. The comprehensive legislation should provide that state waivers of
immunity from suits under Titles I or II of the ADA are conditions for
receiving "federal financial assistance" under any federal program.

***Recommendation 2.2:*** NCD recommends that DOJ endeavor to develop
strategies for determining the effectiveness and impact of all its ADA
outreach, technical assistance, training, and public education efforts,
with a view to determining what works best and why, to ascertaining why
and how notable failures to comply with the law occurred, and to
developing oversight mechanisms that will create the highest probability
of long-term continuity in adherence to PCA agreements and to the
underlying law.

***Recommendation 2.3:*** NCD recommends that the DOJ Civil Rights
Division issue\
a technical assistance guidance describing how patterns-and-practices or
multisite\
ADA investigations are initiated, and explaining how isolated complaints
are\
correlated with other isolated complaints to suggest national entities
or multisite\
public accommodations that may be appropriate for broad-based scrutiny.

***Recommendation 2.4:*** NCD recommends that DOJ immediately issue an
appropriate advisory indicating the current status of the revised ADAAG;
clarifying its intentions or expectations with respect to their
modification, acceptance, or rejection; and setting forth time frames
for all anticipated actions.

***Recommendation 2.5:*** NCD reiterates its recommendation that DOJ
immediately begin the process of developing guidelines to supplement the
existing ADA Standards clarifying when and how Web sites are covered by
Title III.

***Recommendation 2.6:*** NCD recommends the Attorney General convene
(pursuant to an Executive Order of the President if necessary) an
interagency task force, including DOJ, the Departments of Homeland
Security and Transportation, such other agencies as are deemed
appropriate, and, to the maximum extent consistent with national
security, representatives of the disability community, to develop
procedures for incorporating accessibility assessments into the
development and testing of all new security systems and devices.

***Recommendation 2.7:*** NCD recommends that in its public statements
regarding the identifiable currency suit, the Department of the
Treasury, or other Administration spokespersons, avoid inflammatory
rhetoric and go beyond mere assertions of costliness or impracticality
by explaining the criteria they are using and the reasoning behind their
conclusions.

***Recommendation 2.8:*** NCD recommends that the EAC adopt the
recommendations contained in NCD's Statement on VVSGs aimed at ensuring
adequate levels of privacy and comprehensibility for voters with
disabilities, whether using electronic voting equipment or paper
ballots.

***Recommendation 2.9:*** NCD recommends that DOJ establish procedures
for incorporating disability access into its VRA reviews, and to that
end, that it create an advisory committee drawn from the disability
community to advise it of access or integrity issues arising in the
elections system.

***Recommendation 2.10:*** NCD reiterates its recommendation for
broad-based congressional oversight hearings into the operation of CRIPA
and into the relationship between CRIPA and other related services,
laws, and programs, with a view to identifying legislative enhancements,
monitoring strategies, funding mechanisms, and other measures to ensure
the health and safety of those who remain in institutions or other
custodial settings throughout our nation.

***Recommendation 2.11:*** NCD renews its recommendation for prompt
adoption by Congress of genetic privacy and nondiscrimination
legislation.

[]{#__RefHeading___Toc181717812 .anchor}Chapter Three: Education

[]{#__RefHeading___Toc181717813 .anchor}Introduction

Among such basic pillars of life as housing, health, and employment, our
society has not seen fit to create a categorical legal right to these
for all people. Only with the right to education have we created laws
entitling every child to an education, and requiring parents or other
caregivers to cooperate and meet certain standards in its provision.

For this reason alone, education plays a central a role in public policy
more than does any other activity or service of the government.
Education is the crucible in which society's struggles are fought out
and in which the decisions made by each generation become the guideposts
for preparing the next generation.

Consistent with our commitment to universal free public education, it
has been established for a generation that students with disabilities
are entitled to a free and appropriate public education (FAPE) in the
most integrated setting possible. What this means, who will pay for it,
how it is to be monitored, and what will be the consequences of failure
to achieve it are questions that have continued to frame the debate over
the past 30 years.

This chapter begins with a discussion of the two major federal laws
affecting education in this country: Individuals with Disabilities
Education Act (IDEA), which has just been reauthorized, and No Child
Left Behind (NCLB), which is about to be reauthorized. The first two
sections deal with key issues emerging in the wake of IDEA
reauthorization, disability-related issues implicated in the forthcoming
reauthorization of NCLB, and several key points of interface between the
two laws that must be harmonized if either is to be fully effective.
Issues addressed include the interpretation and applicability of such
key NCLB concepts as adequate yearly progress (AYP) and corrective
action to the rights and circumstances of students with disabilities.

The chapter then discusses trends that threaten to further close the
courts to due process and civil rights litigation by and on behalf of
children with disabilities whose rights are being abridged.

Next the chapter discusses possible incentives for increasing the number
of qualified special education teachers. Following that, it addresses
the potential for full inclusion of students with disabilities in
general education classrooms, as proposed by a major Florida school
district.

The chapter concludes with a discussion of recent Department of Justice
(DOJ) civil rights enforcement initiatives in higher education. It notes
the efforts the department has made in the area of physical
accessibility, but also observes the absence of parallel efforts or
vigor in the area of program or information accessibility.

[]{#__RefHeading___Toc181717814 .anchor}IDEA Regulations and NCLB
Reauthorization

New IDEA Regulations

Pursuant to the reauthorization of the IDEA Amendments of 2004,[^28] the
U.S. Department of Education was called on to issue regulations
interpreting and applying the law. As discussed in last year's report,
temporary regulations implementing the major Part B provisions (basic
state grants) were published in 2005. In August 2006 the final Part B
regulations were published.[^29] NCD commends the Department of
Education's Office of Special Education and Rehabilitative Services
(OSERS) for its diligence in completing this work and for its efforts to
secure public input into the content of the regulations.[^30]

Excellent summaries and analyses of the law have been published, but the
overriding problem remains that IDEA cannot be implemented or understood
in isolation. All laws are affected by and have an impact on other laws,
but with IDEA and NCLB, the interactions are particularly crucial and
exceedingly complex. "Alignment" of IDEA and NCLB is one of the often
repeated goals of the new regulations, and it has been the subject of
extensive discussion in previous NCD progress reports since the
enactment of NCLB in 2002. The fundamental potential for tension between
the two programs lies in their differing historical approaches. IDEA
emphasizes an individualized needs assessment, service provision, and
performance measurement approach. NCLB approaches the shared goal of
quality education in a very different way, stressing statistical
indicators of progress derived largely through standardized testing. In
this light, one of the chief sources of tension has been over the
question of how and to what extent students with disabilities, including
the growing number of students recognized as having intellectual
disabilities, are to be incorporated in the statistical composites by
which school systems are evaluated.

NCLB Reauthorization

With reauthorization of NCLB due in 2007, Congress will revisit the
issues involved in NCLB-IDEA harmonization and alignment. With this in
mind, NCD reviews the following relevant issues.

Adequate Yearly Progress

AYP is at the heart of NCLB. Under this concept, states, school
districts, individual schools, and subgroups of at-risk students,
including students with disabilities, must demonstrate improvement in
test scores from year to year. Failure of particular schools to achieve
AYP will result in what, depending on one's point of view, are
considered corrective actions or penalties. Ultimately, protracted
failure to improve sufficiently can result in loss of funds and in the
transfer of students to other schools.

Consistent with the inclusive principles of NCLB, there has always been
agreement about whether students with disabilities, defined in terms of
those receiving services under IDEA, should be counted for
AYP-determination purposes. What has proved more problematic is how they
are to be counted. Most recently, the Department of Education had ruled
that 1 percent of students with disabilities could have their progress
measured by "alternative" assessment standards, and 2 percent by
"modified" assessment standards.[^31] Lying behind the effort is the
desire to balance the counting of students with disabilities with the
inherently competitive situation facing schools and school districts.
Some students with intellectual disabilities cannot perform on the same
tests or prosper with the same curriculum as the general student body,
and no consensus exists on how this fact can be balanced with the
competing objectives of inclusion and school statistical performance.

Reauthorization of NCLB presents another opportunity to address this
dilemma. AYP will be a major subject of concern, because the many issues
swirling around AYP affect more than just special education students.

The application of AYP to IDEA cannot be considered in isolation from
broader issues. Establishment of percentages of students who can be
assessed by alternative means will not resolve the fundamental problem.
Such percentages do not establish how the validity of alternative or
modified assessment measures is to be determined.

Equally serious problems exist with respect to students with sensory or
physical disabilities who participate in the same curriculum and take
the same state-mandated performance tests as the general student body,
but who need reasonable accommodations to take the tests. Much
controversy has been generated by accommodation requests for extra time.
But though this is certainly one type of accommodation that often may be
requested or recommended, it is not where the most serious issues exist.
Such measures as the provision of readers for print-impaired students or
sign-language interpreters for deaf and hard-of-hearing students, or the
provision or allowance of alternative writing methods such as computers
for students with motor impairments are critical to effective
test-taking, but they may be seen by some as creating a lack of
uniformity in the assessment process.

NCD strongly believes that reasonable accommodations are designed to
allow students to participate fully in school, including in
demonstrating their capabilities on standardized tests. NCD recommends
that, in its reauthorization of NCLB, Congress make clear that
reasonable accommodations designed to make standardized test-taking
accessible to students with disabilities are required in all
standardized performance-assessment settings, and that use of
alternative measurement techniques where appropriate accommodations
exist is not acceptable. Such a clear and unambiguous statement would
align NCLB with other applicable laws, including IDEA and Section 504,
and would avoid inconsistency among applicable laws.

Corrective Measures

When schools fail to achieve AYP, they are subject to corrective
measures. What NCLB has not yet made clear is that corrective measures
must be designed and delivered in ways that ensure their full
accessibility and availability to all students, including students with
disabilities. In this light, NCD recommends that all NCLB corrective
action plans be required to include information on how the objectives of
the plan will be met for students with disabilities. Subsequent
improvement in overall school test scores should be regarded as
insufficient to demonstrate success of the corrective action plan unless
these results include proportional increases in the test scores achieved
by students with disabilities as one of the disaggregated student
subgroups for which AYP is computed.

[]{#__RefHeading___Toc181717815 .anchor}Other Issues Under IDEA

Although IDEA and NCLB are closely linked, a number of issues are
specific to IDEA. Just as the 2004 amendments answered some old
questions, they inevitably created new ones that will be left to
stakeholders, and ultimately to Congress in the next revision, to
resolve.

NCD commends OSERS for its IDEA Amendments resources Web page.[^32] The
various fact sheets and other tools it offers provide a valuable
starting point for those interested in learning more about what the
amendments mean. But key questions, which we address below, remain.

Private School Placements

Among other changes, the 2004 IDEA amendments provide for a significant
shift in funding responsibility for those students placed in private
schools by their parents (parentally placed students). For purposes of
IDEA funding support, there are two categories of private school
placement. The first, and far less common, placement occurs when the
placement decision is made by the public school system, that is, by the
local education agency (LEA), and is deemed to represent FAPE for the
individual student. The second type of placement involves cases of
parental placement in which the LEA, although not paying tuition or
other basic costs, may be asked or expected to provide special education
services that the student would require wherever placed or enrolled.

One key change made by the new law is that responsibility for special
education support for private school students is shifted in certain
instances from the student's home LEA to the LEA in which the private
school is located.[^33] NCD appreciates the efforts made in the IDEA
regulations to clarify these new rules, but the Council remains
concerned about possible attempts at cost-shifting, about coordination
and continuity in service, about records management, and about a number
of other issues potentially arising from the new funding rules. NCD
recommends that OSERS carefully monitor reported experience with private
school placements under the new rules, with a view toward amending or
amplifying the existing regulations within one year if unforeseen
difficulties or situations not covered by the rules arise.

NCD also is concerned that LEAs that contain exemplary private schools
within their catchments may incur unexpectedly heavy costs. To the
extent that private schools exist or emerge that achieve especially good
results in working with students with various disabilities, parents
likely will be inclined to seek placements in such schools for their
children. Other localities may find them useful in instances in which
appropriate community-based resources do not exist. Provision should be
made for financial and other impacts on destination LEAs. Therefore,
OSERS should monitor the economic implications of this new arrangement
for private schools, and for the LEA in which private schools are
located that receive out-of-district disability student placements.

Private and Charter School Selection Criteria

The movement in the country toward free innovative education from the
often stifling effect of education regulations and the education
administrative system has resulted in states having taken steps to
facilitate the creation of charter schools that, to varying degrees,
operate outside the framework of many legal requirements.

One element of the charter school concept has been the right to focus on
the particular type of student the charter school is designed to serve.
This never has been taken so far as to allow discrimination on the basis
of traditionally invidious grounds, but resistance to the recruitment,
acceptance, or welcoming of students with disabilities has not been
recognized for the kind of discrimination that it is. The law must be
made unambiguous, and its requirements must be linked to the
availability of public funds and state accreditation.

Accordingly, NCD recommends that OSERS make clear that IDEA funds may
not go to charter or private schools that discriminate against students
with disabilities in the admissions process or otherwise, and
regulations should be implemented barring states or LEAs from providing
funds on behalf of students in charter or private schools found in
violation of antidiscrimination requirements of federal or state law.

School Accessibility

An area that continues to cry out for reform, whether through IDEA
oversight or through attachment of specific provisions to the
forthcoming NCLB reauthorization, is that of school and program
accessibility. The following subsections deal with specific contexts in
which this issue arises.

Facilities Accessibility

Requirements for physical accessibility of school facilities, under
either the Americans with Disabilities Act (ADA) or Section 504
depending on the kind of school in question, are generally known. But it
is by no means clear that the linkage between such accessibility and
availability of federal funds (or the link between program accessibility
discussed below and federal funds) is as well understood or as fully
implemented as it should be.

As things now stand, in cases in which the students in failing schools
are given the opportunity to transfer to other schools, no requirement
or guarantee in the law obligates those receiving schools to meet
accessibility requirements as a condition for receipt of the new
students, or as a condition for receiving special education, per capita,
or other funds that will come with them.

Put more vividly, given the opportunity to move out of underperforming
schools, students with disabilities should not face narrower options
than do their peers without disabilities.

Program Accessibility

As important as access to the building and the classroom or auditorium
is, other kinds of access are equally important but often more elusive
and more difficult to assess. Grouped generally under the rubric of
program accessibility, it is access to the curriculum (including
textbooks and audio-visual materials), online resources and computer
equipment used in the school, and other aspects of full participation on
which we focus our concern.

A major step toward full program accessibility took place with the
launch in December 2006 of the National Instructional Materials Access
Center (NIMAC).[^34] Textbook publishers, as part of the contracts with
states, agree to deposit at NIMAC electronic copies of textbooks,
formatted in the national instructional materials access standard
(NIMAS) file format. These files can readily be converted to a variety
of accessible formats, and are available to be downloaded for this
purpose by state-authorized users who, among other things, enter into a
prescribed copyright agreement.

NIMAC is the culmination of a long effort discussed in previous reports.
NCD commends all those from the public, publishing, and accessibility
advocacy sectors for these efforts.

NCD believes that accessible textbooks can make an important
contribution to mainstreaming students with disabilities, program
accessibility, and full participation. The Council is concerned,
however, that rapid changes in technology and terminology could leave
NIMAC behind the curve. The history of Section 255 of the Federal
Communications Act of 1996 (discussed at length in Chapter Eleven of
this and of previous reports) illustrates this concern. Enacted to
require accessibility of a broad category of "telecommunications"
services and equipment, the law has proved largely inapplicable to
closely related services, known as "information services," that came on
stream after the statute's passage.

In this case, the key concepts are not "telecommunications" equipment or
services, but "instructional materials" or "textbooks." With rapid
changes in the ways technology allows information to be presented, the
very meaning of the term "textbook" is in question. Textbooks may now
not come in book form at all, may contain little or no text, and may
rely on multimedia presentations. Moreover, through utilization of the
Internet, increasing use may be made of mandatory curricular materials
that were not necessarily published for sale to, or formal adoption by,
states as school texts.

Principles of accessible design, such as the use of the now-familiar
"alt text" and others, have resulted in significant progress in making
electronically presented visual materials accessible to people who are
blind. At the same time, methods for combining various forms of output
in the multimedia setting have enhanced information access to people
with a variety of other print and intellectual disabilities. But the
effort to keep up is always a struggle. Access developers are always
running in place to keep up, and as NCD's recent assistive technology
report has made clear,[^35] rapid technological change sometimes can be
a double-edged sword as far as efforts to achieve and preserve
accessibility are concerned.

Therefore, for NIMAC to be successful in the long term, NCD believes
three things need to happen. First, the actual accessibility of
materials claimed to be accessible must be monitored carefully. Second,
those who develop and deploy new methods for organizing and displaying
information, or who create new interfaces between the student and the
information, must be held accountable for finding ways to incorporate
accessibility into their designs. Third, information access in schools
should be recognized, like physical access, as a feature of the
environment that must be provided, not as an individualized service to
be provided as part of a student's individual education plan (IEP).

Even if full program and curriculum accessibility, including but not
limited to NIMAC, is more expensive in the short run, school officials
need to remember that it is manifestly in their interests. Because
students with sensory disabilities will be taking standardized tests and
will be counted in AYP, schools' aggregate results will inevitably be
influenced by the access afforded these students to the materials making
up the curriculum.

To facilitate full recognition and implementation of the fact that
program access, like building access, is a component of education system
design and not an individual problem, NCD recommends that the Department
of Education review the current status of Part D National Media programs
that use IDEA funds, with a view toward identifying what changes in the
size or scope of the Part D program could facilitate full materials
accessibility.

Access to the Courts

A report issued in 2006 found the achievement gap between students with
and without intellectual disabilities to be narrowing.[^36] Though many
factors can be cited to account for this, and many stakeholders should
be praised for helping to bring it about, NCD believes that education
due process has played a major role. Due process, including the right to
seek redress in the courts where all else fails, has represented an
important safety valve in those cases in which the IEP process has
failed to effectively identify or meet student needs.

Of course, there have been instances in which the right to seek redress
may have been unwisely or even abusively exercised. No right is immune
from occasional misuse. Nevertheless, out of a belief that due process,
including the right of "prevailing parties" to obtain school system
reimbursement for attorney fees, has hindered the education process, the
2004 IDEA amendments included a number of provisions to discourage
confrontation and litigation in favor of negotiation and mediation.
These changes are discussed at length in last year's progress report.
Although it is too early to tell for sure, their effect, if successful,
will be to reduce the number of formal due process appeals and
especially the number of court suits arising out of IDEA disputes. One
of the ways the law unabashedly attempts to do this is by making it
economically harder for aggrieved families to pay attorneys, as
discussed in previous reports. A case will be argued in the U.S. Supreme
Court in February 2007 that, if the lower-court judgment is upheld, will
impose unprecedented further limitations on the opportunities of special
education students and their families to defend their rights in court.
In the *Winkelman* case, the lower court held that the parents of a
child with a disability were not permitted to bring a *pro se*
proceeding on behalf of their child's special education rights under
IDEA.[^37]

Lest this seem a narrow, technical issue, let us put it in context. The
right to represent oneself in court, as part of the constitutional right
to petition the government, is basic to American justice. Where a
child's rights are at stake, the parents, assuming no conflict of
interest and assuming the unavailability of legal representation, are
the natural and traditional people to pursue the child's claims. Indeed,
in *Winkelman*, had the parents been lawyers, it appears the court would
have had no objection to their bringing the case on behalf of their
child. Nor was there any indication that the nonlawyer parents had
jeopardized their child's rights by the manner of their representation.
Rather, it was held that as a matter of law, these nonlawyer parents, no
matter the merits of the claim, and apparently no matter the
unavailability of professional representation, were barred from
attempting to advance their child's education interests under IDEA. It
was reported in one account of the case that these parents may have been
investigated for the unauthorized practice of law.[^38] The implications
of the *Winkelman* case extend far beyond special education, and
already, the case is beginning to cast long shadows.[^39]

In an era in which education policy has stressed parent involvement and
empowerment, all would hope that the need for litigation would be
reduced as parents became more aware of and skillful in participating in
the education process. Nevertheless, in those rare instances in which
parents in good faith have no other option but to seek redress in the
courts, it is more than a little ironic that they should be barred from
doing so.

Teacher and Other Personnel Issues

Recruitment of qualified personnel is a major issue throughout the
education system. In view of NCLB's stringent requirements for teacher
qualifications and training, the issue has become an important one all
over the country. In light of the application of these same "highly
qualified teacher" requirements in special education, the issue is of no
less concern in this area.

Although not directly increasing the number of teachers pursuing special
education credentials or careers, and although not increasing the
proportion of special education teachers who meet highly qualified
criteria in core academic subject areas, a little-noticed provision of
the IDEA reauthorization may contribute to the supply of such teachers
and help tip the balance in favor of special education teaching careers.

This provision provides for student loan forgiveness, in an amount up to
\$17,500, for those who pursue highly qualified special education
teacher credentials and careers.[^40]

NCD recommends that OSERS seek out recommendations from
disability-related organizations and public policy experts regarding
similar economic incentives that, along with existing training programs,
could encourage talented young people to pursue special education
teaching careers.

But the personnel needs of the general and special education system are
not limited to teachers. Other key professional staff and consultants,
called pupil services personnel under NCLB and related services
personnel under IDEA, also constitute important participants in the
education process. In this connection, the Coalition of Citizens with
Disabilities has recommended standardization of terminology in this and
other areas.[^41] NCD endorses this recommendation, believing that it
will help to identify and meet personnel needs in a comprehensive and
efficient manner.

Mainstreaming

If students with disabilities are to be included in AYP assessments, it
ultimately is desirable for these students to follow the same curriculum
as their peers do. From this standpoint, as well as from the standpoint
of meeting the law's least restrictive environment aspirations,
mainstreaming students with disabilities in the regular classroom
represents the highest ideal of special education.

It has been conventionally accepted that, as laudable as this goal might
be, its 100 percent achievement is impractical. However this may be, one
major school district has embarked on a bold effort to do just that. The
Palm Beach County (Florida) School Board has announced its intention to
include all of its 20,000-plus special education students in general
education classrooms, in all of its 161 schools.[^42] NCD has not
determined whether this inclusion will be total, or what arrangements
will be made in terms of timing or scheduling to accommodate related
services and other student support activities. Nevertheless, the Council
commends this historic decision and eagerly awaits further information
on its progress.

Higher Education

Unconfirmed press reports over the past year or two have indicated that
the Administration is giving consideration to expanding NCLB (which now
covers elementary and secondary schools) to cover postsecondary
education as well. NCD expresses no view on such a proposal. But whether
or not this ever comes to pass, any number of things can be done within
the framework of current law to improve access, choice, participation,
and outcomes for students with disabilities in college.

The long history of ADA and Section 504 involvement in the accessible
design of university facilities, in the accessibility of information
technology (IT) resources, and in the accessibility of curricular
materials should be considered. By and large, that involvement has waxed
and waned over the years. Most recently, DOJ has launched investigations
into the physical accessibility of college and university campuses,
reaching a highly publicized settlement with the University of Chicago
in August.[^43] Noting that the investigation was not prompted by any
specific complaint, a DOJ spokesperson was further quoted in the Chicago
press account, saying, "Justice Department attorneys now proactively
check campuses for problems, and the University of Chicago settlement is
the first resulting from this approach."[^44]

The settlement covers such areas as accessible paths of travel,
accessible university housing, and emergency evacuation plans.
Interestingly, the agreement calls for information on travel route
accessibility to be posted on the university's Web site, but it appears
to make no provision, nor evince any concern, for whether those Web
sites are accessible. In this regard, the above-referenced press account
also notes, "The settlement does not include academic accommodations
such as technology that can make online course material available in an
audio format for students who are blind."[^45]

NCD highly commends DOJ for its proactive efforts to increase the
accessibility of campus facilities throughout the nation. But the lack
of any indication that program accessibility is receiving any of this
precious attention is deeply disturbing. In its review of DOJ activities
during the year, NCD can identify a number of instances in which
relevant technical assistance and information have been offered, but
none in which comparable enforcement action has been initiated against
anyone, under any law, for failing to make electronic information
accessible. NCD notes again, as it has had occasion to do in past
reports, the positive role played by DOJ amicus briefs in a number of IT
access--related cases.

NCD recommends that DOJ incorporate campus computer and related IT
accessibility into its proactive reviews of ADA compliance among
colleges and universities, particularly among public institutions
covered by Title II of the ADA.

NCD also recommends that the Department of Education, in the exercise of
its oversight responsibility under Section 504 of the Rehabilitation
Act, undertake proactive audits of campus IT accessibility on a
nationwide basis, on all campuses receiving federal funds that are
covered by the law. The purpose of these audits should not be to punish
or to embarrass, but rather to encourage and assist, through enforcement
measures only where necessary, the implementation of full accessibility
as required by law.

[]{#__RefHeading___Toc181717816 .anchor}Recommendations

***Recommendation 3.1:*** NCD recommends that, in its reauthorization of
NCLB, Congress make clear that reasonable accommodations designed to
make standardized test-taking accessible to students with disabilities
are required in all standardized performance-assessment settings, and
that use of alternative measurement techniques where appropriate
accommodations exist is not acceptable.

***Recommendation 3.2:*** NCD recommends that all NCLB corrective action
plans be required to include information on how the objectives of the
plan will be met for students with disabilities, and that subsequent
improvement in overall school test scores be regarded as insufficient to
demonstrate success of the corrective action plan unless these results
include proportional increases in the test scores achieved by students
with disabilities, as one of the disaggregated student subgroups for
which AYP is computed.

***Recommendation 3.3:*** NCD recommends that OSERS carefully monitor
reported experience with private school placements under the new rules,
with a view toward amending or amplifying the existing regulations
within one year if unforeseen difficulties or situations not covered by
these rules arise.

***Recommendation 3.4:*** NCD recommends that OSERS make clear that IDEA
funds may not go to charter or private schools that discriminate against
students with disabilities in the admissions process or otherwise, and
regulations should be implemented barring states or LEAs from providing
funds on behalf of students in charter or private schools found in
violation of antidiscrimination requirements of federal or state law.

***Recommendation 3.5:*** NCD recommends that the Department of
Education review the current status of Part D National Media programs
that use IDEA funds, with a view toward identifying what changes in the
size or scope of the Part D program could facilitate full materials
accessibility.

***Recommendation 3.6:*** NCD recommends that OSERS seek out
recommendations from disability-related organizations and public policy
experts regarding economic incentives that, along with existing training
programs, could encourage talented young people to pursue special
education teaching careers.

***Recommendation 3.7:*** NCD recommends that DOJ incorporate campus
computer and related IT accessibility into its proactive reviews of ADA
compliance among colleges and universities.

***Recommendation 3.8:*** NCD recommends that the Department of
Education, in the exercise of its oversight responsibility under Section
504 of the Rehabilitation Act, undertake proactive audits of campus IT
accessibility on a nationwide basis.

[]{#__RefHeading___Toc181717817 .anchor}Chapter Four: Health Care

[]{#__RefHeading___Toc181717818 .anchor}Introduction

Today there may be no area of domestic public policy that affects
everyone as profoundly and inescapably as does health care. What
services and modalities exist, who is eligible to receive them, and how
they are paid for all represent subjects of growing and continual
interest and, too often, problems of intractable and unfathomable
complexity.

While news broadcasts may continue to focus on new discoveries and
treatments, horror stories, or accounts of near miracles, the core
discussions of health care in America are increasingly being driven by
economics. It seems more and more likely that the costs of health care
will determine the answers to the question of what health care includes
and how much of it is available. But the equally profound questions of
how those services and care will be allocated remain topics best
addressed through the evolution of law and public policy.

Although health policy affects everyone, it affects the lives of people
with disabilities in several distinctive ways. These include the nature
of the services that people with disabilities may need; the sources of
payment for those services; the accessibility of those services; and the
attitudes of society, lawmakers, and practitioners toward the
aspirations of people with disabilities for autonomy and
self-determination in the selection and management of services. This
chapter addresses this range of issues, with an emphasis on choices and
debates that have emerged during 2006 and that are likely to prove
important in 2007. The chapter begins with a discussion of Medicaid,
which faces growing demands for cost reduction. The chapter discusses
opportunities for accommodating these pressures in ways that reduce the
adverse impact on beneficiaries with disabilities.

The discussion of Medicaid next turns to the situations faced by people
dually eligible for Medicaid and Medicare. The chapter then discusses
means to accelerate the shift of Medicaid funding from institutional to
community-based services and the implications of that shift for the
solvency of the program. Important innovations in Medicaid, focusing on
consumer-directed services, are also discussed.

The chapter then considers Medicare. Recent changes in rules governing
the availability of powered mobility devices are discussed, both on
their own merit and for the broader insight they offer into the
philosophy and direction of the program. Through discussion of the work
of the Medicare Ombudsman, the program's ability to include
beneficiaries with disabilities in its planning and experimentation is
assessed.

The chapter then addresses issues of particular concern to people with
mental illness, including insurance coverage and the tragic rise of
imprisonment as a means to fill the vacuum caused by the lack of
adequate treatment options.

The chapter concludes with a reminder that returning veterans are coming
to represent an increasing and important segment of the disability
community, whose needs and experiences are unique, and whose needs and
potential must receive our highest, sustained attention.

[]{#__RefHeading___Toc181717819 .anchor}Medicaid

Medicaid is the federal-state program designed to provide health care to
those whose poverty, combined with either age or disability, makes them
eligible for the program. It is not enough to meet the definition of
poverty alone, to be over the age of 65, or to be a person with a
disability. With minor variations on state standards, an individual must
both be poor and meet one of the other demographic criteria. Because of
relative poverty and because of low levels of employment, many people
with disabilities rely on Medicaid for their health care coverage. For
that reason, developments in the Medicaid program are of particular
significance to Americans with disabilities.

Medicaid Spending

The chief concern driving federal Medicaid planning in recent years has
been the concern that, at current and projected rates of growth, the
program soon will consume unsupportable levels of funds. The national
Medicaid Commission appointed in 2005 by the Secretary of Health and
Human Services, whose interim report was discussed in last year's NCD
progress report, has now completed its work and made major
recommendations. Consistent with its mandate to find substantial
savings, means to reduce program costs, including achieving greater
efficiency, were at the forefront of the Commission's recommendations.

NCD fully accepts the need for, and the inevitability of, cost savings
in Medicaid. The Council does not engage in wishful thinking about how
overall economic growth resulting in increased tax collections, or
closing the tax gap through more effective collection of taxes now
evaded, will magically close the looming budget gap as it relates to
Medicaid or other human services programs. Put in starker terms, even
with the greatest attention to efficiency, accountability, and
cost-effectiveness---even with the intensification of waste and fraud
eradication measures---some real reductions in the level of care to some
people, and the entire loss of coverage for others, are going to be
necessary if savings levels approaching those demanded by policymakers
are to be realized. As a first step in engaging all Americans in the
critical and difficult choices that must be made, NCD urges that the
discussion about Medicaid, though it may be driven by dollars, be
conducted in terms that openly address the questions of who will lose
coverage, which services will be restricted or denied, and how our
society will address the development and availability of alternative
safety net protections.

Important principles must necessarily have complex effects. In
supporting greater state flexibility in the implementation of the
Medicaid program, the Commission and others rightfully recognize the
opportunities for cost savings through efficiency, responsiveness to
local conditions, experimentation, and quickness of response that such
flexibility can yield. But, if meaningful savings are to be achieved,
such candor requires recognition that state flexibility must entail
narrowed eligibility or reductions in services and benefits.

NCD accepts the unavoidable fact that if any people suffer as a result
of these reductions, people with disabilities will be among them. But
what concerns the Council is that cuts may be made in ways that
disproportionately burden Medicaid beneficiaries with disabilities and
that cause people with disabilities to bear the brunt of cost-cutting
measures.

NCD is concerned that these cuts could occur in three ways. First, it is
likely that states will choose to cut first those services that are the
least used or that have the smallest political constituencies---that is,
the understandable path of least resistance. This will mean that
so-called optional services that states have offered at their discretion
will be the first to be cut. A number of these services are of
particular importance to people with disabilities. Even low-volume
mandatory services, which now can be reduced or eliminated to varying
degrees by state use of expanded waiver authority to modify general
program rules, could be affected in similar ways, with similar results
for people with disabilities. Litigation around assistive technology
(AT) devices, coming under various established service categories,
illustrates this phenomenon.[^46]

The second and closely related concern is illustrated by cuts in such
initiatives as the Medicaid Buy-in Program. Cuts may yield short-term or
even long-term savings to the state's Medicaid budget, but who is
responsible for assessing their broader financial implications for the
state and nation? For example, if such cuts prevent people from
establishing secure long-term employment by forcing them to choose
between entry-level work and health coverage, what is the net long-term
gain or loss to the public purse? No one knows, but, perhaps more
seriously, neither is anyone is compelled to ask or is accountable for
failing to answer such key questions.

Our third concern in this regard relates to the widespread perception,
as discussed in the subsection Dual Eligibility below, that Medicaid
beneficiaries with disabilities account for a disproportionately large
share of overall Medicaid costs and that their per capita costs are
higher than those of other beneficiaries. From that standpoint, economic
logic, if not political expediency, suggests that restricting their
eligibility or cutting those services most often associated with use by
people with disabilities represents the easiest way of saving
substantial sums.

A partial solution to these risks may exist. It arises from parallel
efforts undertaken by the Centers for Medicare and Medicaid Services
(CMS) to curtail fraud and abuse in the Medicaid program. In its July
2006 announcement of an unprecedented large and comprehensive Medicaid
integrity program, CMS listed a number of principles that would guide
the effort. One of these is "return on investment."[^47] NCD believes
that this concept, applied in a slightly expanded form, can go a long
way toward ensuring that the painful cuts facing Medicaid will be
implemented in ways that maximize state government and Federal
Government goals.

Specifically, NCD recommends that Congress incorporate in any future
Medicaid legislation provisions requiring each state, as an element of
its approved state plan, to develop meaningful criteria for determining
the return on investment of all expenditure increases, or expenditure
cuts, contemplated in the program. Such return-on-investment
assessments, or for that matter return-on-disinvestment statements,
would be required to assess, so far as reasonably possible and in
accordance with sound statistical research and actuarial practice, the
overall cost implications to the state and to its units of regional and
municipal government resulting from the proposed change.

The assessments that would be required are not limited to the Medicaid
budget silo, but would extend to all facets of state revenue and
expenditure. They would be conducted in a way that exposes all
cost-shifting measures that move expenditures from one level or unit of
government to another. These assessments would represent a great step
forward in enhancing the transparency of public accounting.

Dual Eligibility

The Medicaid Commission pays considerable attention to dually eligible
people (dual-eligibles), that is, people who receive coverage under both
the Medicaid and Medicare programs. In light of the administrative and
coverage differences between Medicare and Medicaid, handling
dual-eligibles has been vexing over the years and has been discussed in
previous NCD reports. Here, however, we are concerned with the subject
principally from the standpoint of cost, which was the standpoint from
which the Commission approached it.

The Medicaid Commission estimates that dual-eligibles account for about
13 percent of Medicaid beneficiaries but for 40 percent of Medicaid
expenditures. It attributes this fact to their being the sickest among
Medicaid beneficiaries.[^48]

In its recommendations, the Commission emphasizes the use of managed
care as a cost-saving strategy through its potential for service and
benefits coordination and its other perceived benefits. What is not
clear is what data the Commission relied on to estimate the extent of
these possible savings.

It is unclear to what extent the Commission was apprised of managed care
efforts aimed at dual-eligibles carried out pursuant to Section 231 of
the Medicare Modernization Act of 2003. Although that legislation is
known primarily for its creation of the Medicare prescription drug
benefit, it also contains a large number of other provisions, including
authorization for the creation of Special Needs Plans (SNPs), which are
managed care plans for three categories of Medicare beneficiaries
believed to present special challenges or to have care needs that
involve high cost. Dual-eligibles are one of these three groups, and
according to information provided by CMS in mid-2006, of the more than
500,000 people enrolled in SNPs since their creation, some 400,000 are
dual-eligibles receiving both Medicare and Medicaid services.

NCD believes that the outcomes of such plans in reducing per capita
costs by improved coordination and by providing preventive services
represents an important case study in the possibilities of managed care,
and by implication, a valuable window into the overall potential of
managed care to reduce health care costs. In that regard, on the basis
of their findings that administrative barriers were limiting the
effectiveness of the SNP programs, CMS has provided a number of
technical assistance resources.[^49] This, in turn, redirects attention
to the perennial question of whether and to what extent removal of
administrative, paperwork, and legal barriers can, without any decrease
in level or quality of care, accomplish savings for this and other
programs.

It is widely believed that managed care results in reduction of care
levels and options for people with disabilities. It was on this basis
that one member of the Medicaid Commission dissented from the vote on
its recommendations.[^50] NCD is interested in the experiences of
dual-eligibles with disabilities specifically under these SNPs. NCD
recommends that CMS augment its published data on SNPs to indicate the
extent to which they meet concerns often expressed by people with
disabilities, including concerns about the range and availability of
specialized practitioners and services, rights to continuity of service
and established practitioner relationships, and similar matters. CMS
should review the regulatory and advisory guidance it gives to Medicare
Advantage plan providers and state Medicaid agencies in regard to these
matters, with a view toward ensuring that the full scope of rights that
exists under the law is effectively communicated to program
administrators and service providers.

Institutional Bias

As recognized by the Commission, Medicaid's institutional bias (that is,
its complex pattern of rules and practices that make it easier or
financially beneficial for people to receive nursing home or other
institutional services rather than home and community-based services)
represents a major area in which program costs could be greatly reduced.
Although the Commission's sphere of responsibilities may not have
extended to identifying or addressing ways the process of conversion
from institutional to community-based services could be accelerated, the
Commission's recognition of the issue, coupled with recent developments,
opens the way for additional research, recommendations, and experiments
aimed at bringing about this goal, both for the savings that will accrue
and for the other benefits to recipients and to society that will be
achieved.

Federal Funding Formulas

A landmark achievement of the past year (discussed at length in Chapter
Five) was the enactment of Money Follows the Person (MFP) and the
completion of the first round of grant applications under the new
program.[^51] MFP and related changes redress Medicaid's institutional
bias in two ways. First, the law provides funds for home and
community-based programs, creates rebalancing goals, and, perhaps most
important, provides a higher percentage of federal funding participation
in the provision of certain home and community-based services than in
the funding of institutional care. The importance of such measures in
altering the fiscal equation for states, and tipping the balance of
fiscal responsibility in favor of home and community-based services and
care, cannot be overstated.

The role of federal funds in influencing state policies is widely
recognized in almost all areas of life. But the potential of variable
cost-sharing formulas to encourage sound practices in Medicaid has been
barely explored or used thus far. Much discussion has focused on overall
funding levels and on the formulas that are used to determine how much
each state will receive.

NCD urges Congress to enact legislation that will differentially support
community-based services in the Medicaid program.

Economic Data

Changes in federal requirements and funding formulas can speed the
process of Medicaid rebalancing, but ultimately, it is the data accrued
from such efforts that make the economic logic of the process as
irresistible as its ethical component. Without waiting for MFP, a number
of states, through the use of waiver authority or by other means, have
begun making increased use of community-based resources. Data from Texas
illustrate the potential savings that can be achieved.[^52] As economic
logic and societal values continue to converge, both the pace of this
shift and the available data concerning its implications are likely to
grow exponentially. It is critically important that these data be
studied, evaluated, and rigorously applied.

NCD notes that the methodology used to evaluate accrued savings or
prospective costs of deinstitutionalization may not yet have evolved to
the point at which all researchers will agree on basic assumptions. For
example, this year's publication of analyses by a group of disability
demographers substantially challenged Congressional Budget Office (CBO)
estimates of how much MFP would cost. By drawing attention to several
questionable assumptions in CBO's formulation, including probable
overestimates of the number of people who would qualify for home and
community-based services, these demographers were able to offer
reputable cost projections significantly lower than those presented to
Congress.[^53]

Available data suggest that the redirection of Medicaid long-term-care
funds from institutional to home and community-based services is
proceeding at an accelerating pace. According to one compilation of
data, the ratio, which still heavily favors nursing homes and other
facility-based services, decreased from 84 percent in fiscal year (FY)
1993 to 82 percent in FY 1999, to 74.9 percent in FY 2004. In the five
years since the Supreme Court's 1999 *Olmstead* decision, the average
decrease in the nursing home bias was 1.4 percent per year. By contrast,
in FY 2005 the nursing home share was 68.5 percent, a reduction of 6.4
percent in a single year.[^54] With MFP in place, this rebalancing is
likely to accelerate.

It is vital that Congress and the public have accurate data on the
effects of this dramatic shift on current and projected Medicaid costs.
Consultation among CMS actuarial experts, disability demographers, and
CBO economists is likely to yield consensus on formulas that can
translate percentage shifts into dollar savings. Such data must be
collected and factored into the Medicaid reform effort, as it relates to
both programs and budgets.

Inasmuch as nursing home care represents the largest category of
Medicaid expenditure, this impact is certain to be significant. Only
when this impact is fully assessed can meaningful types and levels of
additional cuts be fixed. Significant, even draconian cuts, may be
unavoidable, but incorporation of these critical data elements can help
ensure their humane targeting and reduce their harmful impact.

Accordingly, NCD recommends that Congress enact legislation creating a
standing committee, including representatives of CBO, CMS, Office of
Management and Budget (OMB), and the disability community, to monitor
progress, develop forecasting tools, and assess alternative assessment
models to measure and predict the budgetary impact of rebalancing on the
overall fiscal status of the Medicaid program.

Cash-and-Counseling, Self-Directed Care, and Consumer-Controlled Budgets

As important as it is to create financial structures that encourage and
enable people to remain in their homes and communities, the quality of
service they receive in those communities may prove as decisive in
determining what individual recipients choose to do. People can be as
imprisoned in their homes, and as equally or even more isolated and
powerless, as they can be in institutions. For this reason, beneficiary
autonomy programs, including self-directed care and cash-and-counseling
models, are vital.

Models and Data

Although experimental models vary, the essence of cash-and-counseling
programs is that those who qualify for home health care or other
services in the home are allowed to exercise control over how some or
all of the funds available for this service are spent. They may be given
authority to expend the funds directly or to work through a fiscal
intermediary, they may be required to expend their budgets within a
designated period of time, or they may be allowed to save money toward
certain personal objectives.

Considerable impetus was given to consumer-directed services by changes
in the law that went into effect at the beginning of 2006. As further
discussed in the Chapter Five, these changes allowed states to include
self-directed services in their state plans as optional Medicaid
services, but without the requirement to seek approval of a waiver from
the Federal Government.[^55] The number of such programs is believed to
be increasing rapidly, and early indications suggest they are successful
on a number of levels, including better outcomes and better quality of
life, as measured by consumer satisfaction and other indicators.[^56]

Models differ for a number of important reasons. Within the framework of
the federal law, states have considerable discretion in many areas of
program design. Other state laws interact with Medicaid in a variety of
ways. NCD strongly endorses the expansion of all models of
consumer-directed services. The Council understands that proving the
worth of these models relative to other approaches will not be easy,
especially if subjective variables such as consumer satisfaction,
quality-of-life indicators, and social participation are to be given
weight and respect.

NCD recommends that CMS create, in house or by competitive bidding, and
possibly in collaboration with the National Institute on Disability and
Rehabilitation Research, a national clearinghouse on consumer-controlled
and self-directed human services programs.[^57] This clearinghouse
should collect and maintain detailed descriptive, evaluative, and
outcome data on all such programs, whether operated under the auspices
of the Medicaid program, by Medicaid in conjunction with other programs,
entirely by other agencies (such as under the Real Choice Systems Change
grant program), by states, or by private nonprofit--public sector
partnerships.

Key Interfaces

Questions remain about the role of self-directed services and care
programs in achieving the goals of Medicaid or other service inputs.
Another, largely untapped, issue is the potential of such programs to
work with other self-sufficiency programs in ways that give them
increased leverage value in helping participants to move increasingly
into mainstream economic and social settings.

Examples of this potential abound. If the savings from self-directed
budgets could be combined seamlessly with savings in individual
development accounts or plans for achieving self-support, considerable
opportunity for asset accumulation and for the achievement of
self-sufficiency goals would be unlocked. Unprecedented cooperation
among a number of federal agencies, including at a minimum CMS and the
Social Security Administration, would be required to bring about such
demonstrations.

For consumer-directed services to achieve their full potential, other
interfaces will be necessary. Two in particular should be noted. The
first of these interfaces can be achieved with financial literacy
programs, such as the Federal Deposit Insurance Corporation (FDIC) Money
Smart curriculum, that offer beneficiaries information they may not have
received and financial resources they may not have possessed. In this
regard, FDIC's efforts to make its curriculum more accessible should be
commended.

Another critical interface may be required for self-directed services
and self-managed budgets to work. Several anecdotal accounts indicate
that, because of conflicting laws and a lack of interagency agreement, a
number of people managing their own budgets and hiring their own service
providers may have inadvertently run afoul of tax laws and tax
authorities by failing to withhold payroll or income taxes on behalf of
those they employ, failing to pay the employer's share of such taxes, or
simply failing to file the necessary forms.

If self-directed services are not to become a source of anxiety and risk
to their potential beneficiaries, such unintentional disconnects must be
eliminated. These and other disconnects cannot necessarily be
anticipated, but when they do emerge, means must be found to resolve
them.

NCD recommends that the highest levels of CMS and the Internal Revenue
Service (IRS) meet to identify the extent of the problem and to jointly
develop and implement strategies for its prevention, including
recommendations to Congress for legislative action, if necessary.

[]{#__RefHeading___Toc181717820 .anchor}Medicare

In general discussion, whether in the media or ordinary conversation,
NCD has noticed that Medicaid and Medicare often are confused. In fact,
these programs are quite different. Medicare more nearly resembles a
traditional health insurance program. With a few exceptions, eligibility
depends on having paid premiums, and it covers a narrower range of
services that largely includes more traditional medical treatments and
devices.

But if Medicare and Medicaid differ in these and other respects,
including the lack of state participation in Medicare funding, they also
have much in common, particularly the pressure to adapt to changing
conditions and the need to preserve the integrity and basic character of
the program in the face of serious budgetary stresses.

A number of developments occurring during 2006 highlight these problems
and expose key options that exist for the Medicare system. Perhaps the
most revealing of these, as well as one of the most important for
beneficiaries with disabilities (including people under age 65 who
receive Social Security Disability Insurance), involves the ongoing
controversy surrounding powered wheelchairs and other mobility devices.

Powered Mobility Devices

Traditionally, Medicare provided wheelchairs when medically necessary
under the service category of durable medical equipment (DME). Few
people, if any, would ever request or use a wheelchair if they did not
require one to get around. Wheelchairs generally were provided in the
context of other medical treatment by medical facilities. Only a few,
generally inexpensive models or designs were available. Moreover, people
didn't necessarily go many places with them, because before the built
environment began to comply with the ADA, many if not most public
buildings, places of entertainment, and workplaces were more or less
inaccessible. Thus, although the Medicare statute defined DME as
equipment generally suited for use in the home, there were few serious
problems or disputes regarding this claim.

Over the years, both mobility technology and the educational,
vocational, and social opportunities available to users of any form of
mobility device have grown and changed. With the advent of powered
wheelchairs, scooters, and manual wheelchairs designed for sport or
other purposes, and with the emergence of new sources for supplying them
(other than traditional hospital or outpatient facility), Medicare has
been confronted with new challenges, which it has yet to resolve or deal
with effectively.

Recent Developments

CMS's efforts to deal with the powered mobility issue under Medicare
were discussed in last year's report and are likely well known to all
those who follow disability policy or health care funding in this
country. Motivated by rapidly rising costs for powered mobility devices
(PMDs), and by some alleged instances of fraudulent activity, two years
ago CMS revised a variety of rules and definitions, with the apparent
intention of slowing the growth in the program's provision of these
devices. Three closely related approaches have been used. These include
(1) increasing the level of functional limitation required to meet the
medical necessity requirement,[^58] (2) narrowing the range of
permissible uses that would justify provision of such equipment, and (3)
implementing reduced fee schedules. Finally, CMS has implemented a
number of changes in terminology, which have further complicated
analysis and discussion. Most recently, the particular types of
equipment in question have been characterized as "medical assistive
equipment."

Amid considerable controversy and opposition, CMS has revised its
eligibility standards to qualify for the highest-functioning level of
powered chairs, the group 3 chairs. Under the new clarifications,
announced in early November, it no longer will be necessary that
individuals be unable to independently "stand or pivot" to qualify for
such chairs.[^59]

The In-the-Home Rule

As it relates to mobility devices, Medicare's rule requiring devices not
only to be suitable for use in the home, but in fact to be used only in
the home, has led to pernicious results. This in-the-home restriction
would not present a problem with other DME. With the possible exception
of some oxygen equipment meeting the DME definition, there would be
little occasion to transport hospital beds or other items of DME from
place to place. But with equipment designed to facilitate movement from
place to place, equipment that in effect substitutes for the
functionality ordinarily provided by the legs, this restriction grows
more paradoxical as the capabilities of technology and the aspirations
of its users grow.

To put this rule in perspective, consider the parallel of a prosthetic
limb designed, like the powered wheelchair, albeit by different means,
to afford mobility that normally would be achieved in other ways. It is
hardly imaginable that a rule allowing the use of the prosthetic limb in
one's home but requiring its removal upon going out would be deemed
acceptable, no matter the technical justification. If the law allowed or
required such an outcome, the law would be quickly and summarily
changed.

The Fundamental Problem

NCD believes that CMS's interpretation of the law in relation to powered
mobility devices is not supportable. In light of the widespread efforts
in all spheres of life to foster community participation and full
inclusion for people with disabilities, NCD further believes that CMS's
restrictive approach in this area is contrary to some of our most basic
values. It may be as much the way CMS's decisions were reached as the
content of its regulations that is most disturbing.

Although certainty is impossible, it appears that CMS's attempt to
restrict the availability of PMDs was based primarily on cost
considerations. It is uncertain whether CMS undertook a thoroughgoing
analysis of the actual or potential utilization of these devices, of the
indirect impact of their provision or denial, or of anything beyond the
program's short-term desire to stem the escalation of costs. CMS's
concerns are understandable and appropriate, but cost, unconnected to
any meaningful effort to assess impact or to measure the extent of
legitimate demand, should not be the sole driver of purportedly medical
policy decisions.

NCD recommends that CMS plan and host a national conference or series of
regional forums in select geographic locations in collaboration with
national and state organizations and agencies serving people with
disabilities. This would be part of an effort to obtain the fullest
possible sense of the issues involved, with a view to fashioning a
policy that truly makes sense for the twenty-first century, that
recognizes the potential of technology and the aspirations of its users,
and that does not force people with mobility impairments to make the
choice between dependence, immobility, and potential danger, on the one
hand, and a situation very much akin to house arrest, on the other.
Legislation was introduced into the 109th Congress to modify the
harshness of CMS's interpretation of the law.[^60] NCD recommends the
adoption of this legislation.

National and Local Coverage Determinations

Within the framework of federal administrative law, the Medicare program
operates through some procedures that are not found elsewhere. Among
these, the National Coverage Determinations and the Local Coverage
Determinations, through which it implements coverage rules, have few
direct equivalents or parallels. Therefore, much of the law surrounding
these programs cannot be predicted or influenced by precedents in the
administrative law canon.

Until recently, promulgation of these coverage determinations was not
subject to public comment, as may be the case with other regulations.
Moreover, for reasons addressed in previous reports, the ability to
appeal denials of service based on these coverage determinations was
extremely difficult and rare.

In the context of recent reforms, the coverage determination process has
become slightly more transparent, slightly more open to public and
professional input, and slightly more accountable, but many problems
remain. One of the central problems is when, whether, and to what extent
CMS is required to develop a record of, or to show a sound medical,
legal, or other basis for, a coverage determination. This is
particularly critical when a coverage determination categorically bars a
particular device or service without regard to the specifics of any
individual case. This is especially necessary in cases in which, but for
the coverage determination, that item or service would fall within
normal coverage parameters.

Responding to comments on this issue in the *Federal Register*, CMS
stated, "in the rare event that no evidence exists to support an LCD
\[Local Coverage Determination\] or NCD \[National Coverage
Determination\], we will either voluntarily withdraw the policy, or
request the ALJ \[Administrative Law Judge\] Board to strike down the
applicable provision(s) of the policy, whichever is the more expeditious
option."[^61]

NCD recommends that Congress hold oversight hearings into whether CMS
consistently has adhered to this commitment. Furthermore, the Council
recommends that Congress conduct a review of all coverage
determinations, court and administrative tribunal filings, and other
relevant sources to determine whether coverage determinations are being
made or applied on the basis of reliable and verifiable evidence, or
whether their origins and purposes continue to be shrouded in secrecy.

The Medicare Ombudsman

NCD commends CMS for establishing the post of Medicare Beneficiary
Ombudsman. NCD appreciates the efforts made, such as the Open Door Forum
(ODF) teleconferences, to enable the Ombudsman to speak directly with
Medicare beneficiaries and advocates.[^62]

Though recognizing that the range of subjects that can be addressed in
this way is limited, NCD urges that consideration be given to using the
ODF approach, via telephonic and online communication, to solicit input
on issues of particular concern to Medicare recipients with
disabilities. Potential topics for such outreach are numerous and might
usefully include the following: (1) the accessibility of Web-based
materials provided or approved and sponsored by CMS (such as information
on the Medicare Part D prescription drug plans available); (2) the
accessibility of services and facilities paid for with Medicare funds;
(3) the responsiveness of Medicare Managed Care Plans to the specialized
practitioner, services, or facility needs of people with disabilities;
(4) the adequacy of Medicare-funded posthospitalization home health
services and skilled nursing facilities; (5) the availability of
sign-language interpreters in Medicare-funded interactions; and (6) a
host of other matters.

NCD recommends that the Medicare Ombudsman publish a notice in the
*Federal Register* seeking input on disability-related topics that the
Ombudsman should consider and that, based on this input, appropriate
ODFs be scheduled, publicized, and conducted.

During 2006, at the direction of the President, CMS began publishing
what is called transparency information about various types of
facilities, including ambulatory surgical centers receiving payment for
services through Medicare.[^63] The information is intended to help the
public make more informed choices about health care and, as such, is
laudable.

But as examples of things the Ombudsman might wish to pursue, NCD finds
no indication that the transparency data included any information on the
accessibility of these facilities, on their provision of auxiliary aids
and services, or on their policies regarding accessible informed-consent
documents, qualified sign-language interpreters, or other matters of
pertinence and urgency for many people with disabilities, who make up a
major component of the Medicare beneficiary population. Whether from the
standpoint of a patient or a family member (for example, someone making
a visit with a service dog) such matters may be as important to the
choice of facility as is the other information posted online.

Similar issues arise in connection with Medicare's initiative, launched
through its Senior Risk Reduction Demonstration in 2006,[^64] to assess
the applicability of various health-promotion and disease-prevention
strategies in the Medicare population. By reference to the senior
risk-reduction program, Medicare appears to omit beneficiaries with
disabilities under the age of 65 from focused participation in this
important demonstration. Equally, their omission appears largely to
foreclose the investigation of strategies to reach this audience with
the education and information needed for health promotion and risk
reduction. In doing so, it precludes the agency from learning about
specific issues facing such health-promotion efforts with this segment
of the population.

CMS's failure to take an inclusive approach might well be something else
the Ombudsman could pursue. Because of this apparent failure,
potentially significant savings opportunities achieved through the
implementation of effective risk-reduction strategies for people with
disabilities could be lost or delayed. If it is true, as the Medicaid
data cited above suggest, that beneficiaries with disabilities are
responsible for higher per capita costs than are other beneficiaries,
then it should be worth investigating whether risk-reduction and
health-promotion efforts conducted with this segment of the population
might not have high leverage value.

Accordingly, NCD recommends that the Centers for Disease Control and
Prevention and CMS, in their design, implementation, and evaluation of
all future risk-reduction and health-promotion demonstrations with
Medicare beneficiaries, ensure that beneficiaries under the age of 65,
including people with a wide range of all disabilities, be recruited and
enabled to participate fully in the demonstration and that estimates of
potential health benefits and cost savings be developed based on this
inclusive approach.

[]{#__RefHeading___Toc181717821 .anchor}Mental Health Issues

People with mental illness or people who have had mental illness in the
past are no different from anyone else. Yet, our laws, attitudes, and
treatment practices combine to create issues that are not shared by the
population at large or even by other subgroups of people with
disabilities. For this reason, a number of these distinct issues,
including discriminatory insurance coverage and punitive incarceration,
are addressed in the following subsections.

Mental Health Parity

No discussion of health care in this country today can proceed far
without addressing the subject of insurance. For no group of Americans
is this more an issue than for people with mental health treatment needs
or concerns. Not only do they face the general problems of availability,
affordability, portability, and scope that confront all people, as well
as the risk of arbitrary denial of coverage on the basis of disability,
but they also face the likelihood that even when insurance is available
it will severely restrict reimbursement for or provision of mental
health treatment. Some of these practices are illegal in some areas;
some are temporarily illegal throughout the nation; others, including a
number of the most widely used ones, are not clearly unlawful anywhere.

In its final flurry of activity before adjournment in December 2006,
Congress extended for one year the federal mental health parity bill
that has been in existence, most recently via two one-year extensions,
for the past decade.[^65] While this is a positive step and a source of
relief to many, it provides neither complete nor permanent parity in any
sense. The legislation deals with the imposition of discriminatory
payment caps and a number of other matters, but such issues as
copayments, as well as overall questions relating to the denial of
coverage based on mental illness or the alleged risk thereof, are left
unaddressed.

Because the extension was for only one year, the 110th Congress will
have to revisit this issue late in 2007. NCD recommends that permanent
mental health parity legislation be adopted, barring any discrimination
in benefits, copayments, premiums, or other terms and conditions based
on mental illness or on the nature of the condition for which treatment
is being sought. If the competitive marketplace could remedy this
problem, as it has been given ample opportunity to do, a legislative
solution might not be needed. But where, as here, stigma,
marginalization, and fear appear to combine to thwart the potential for
market-based remedies, no alternative strategy for providing coverage
appears to exist.

It often is argued, largely without evidence, that requiring equal
coverage for mental health treatment will drive up insurance costs, and
in doing so, reduce affordability for all. But even if the proponents of
this view could present persuasive evidence of its accuracy, their
argument would still fail to consider the countervailing costs that
result from our failure to provide equitable coverage for mental and
physical health.

Leaving aside all economic and cost-shifting arguments, our current
understanding of mental illness no longer supports the rationality of
sharp distinctions between the body and the mind. We predominantly treat
mental illness with pharmaceuticals that alter brain chemistry. By that
therapeutic choice, we endorse the view that mental illness is largely a
biochemical phenomenon. Thus, it becomes indistinguishable from other
biochemical phenomena that we call physical, simply by virtue of
expressing itself in different ways and having different symptoms.

Traditional separation of the mental from the physical also breaks down
because modern medicine tells us that physical symptoms can have
psychological and emotional causes (most notably, stress), whereas
so-called mental symptoms can have physical causes (such as depression).
In light of the evidence from modern science, and the lack of real
economic justification for perpetuation of coverage gaps, the only
possible conclusion is that prejudice, ignorance, and fear are the true
bases for current policy.

Recognizing the increasing nonviability of mental and physical coverage
distinctions, a number of states have begun to enact their own mental
health parity laws. The statute known as Timothy's Law, adopted in New
York State late in 2006, is a good example of this trend. Unless the
insurance industry is prepared to seek the invalidation of such state
statutes through the courts, their number and variety, in the absence of
national legislation, is likely to grow. Economic inefficiency, market
distortion, and overall confusion are the inevitable results. Even if
the insurance industry's opposition to parity results from its objection
to further regulation on principle, the time for that objection has
passed. The real question is whether the regulation will be national and
uniform, or varied and state by state.

Prison Inmates with Mental Illness

Over the past two years, NCD's progress report has addressed concerns
relating to the growing number of prison inmates with mental illness and
the use of criminal detention facilities to hold juveniles with mental
and emotional illnesses while they await more appropriate placement.

Exposés in the past year suggest that the problem is growing ever more
serious and widespread. In terms of the lack of adequate medical care in
prisons, the problem may be much the same for people with physically
manifested illnesses as for those with mentally manifested illnesses.
But whereas it is unlikely that people have been sent to prison because
of a physical disability, there is strong reason to believe that people
have been and are being incarcerated predominantly or solely on account
of mental or emotional illness. Many imprisoned people would not have
engaged in the criminal behavior but for underlying causal illness, and
many people might not be sent to prison upon conviction if appropriate,
alternative treatment resources were available.

No one suggests that people who engage in criminal behavior should be
excused of responsibility on account of the existence of underlying
mental illness, but it would be equally foolish to suggest that prisons
represent a sensible or cost-effective means to fill treatment vacuums
in our society. Even in cases in which society's legitimate interest in
punishment is strong, that interest may not be well served if mental
illness limits the effectiveness of punishment in altering future
behavior, or if the costs to the taxpayers are disproportionately high
compared with other approaches that would protect society equally well.

The trouble is that in this era of compartmentalized government no one
body is clearly identified as an authority to ask, let alone to begin
authoritatively and comprehensively answering, these questions. For this
reason, NCD recommends the appointment by the President of a high-level
national commission to study the issues involved in imprisonment of
people with mental illness, including (1) the extent to which enhanced
community-based treatment services could reduce the incidence of
criminality, imprisonment, and recidivism among people with mental
illness; (2) the degree to which diversion of certain offenders from
prison to treatment settings could be achieved without risk to public
safety and without undermining the credibility of the criminal sanction;
and (3) the amounts that federal, state, and local taxpayers might save
as a result of such measures.

[]{#__RefHeading___Toc181717822 .anchor}Veterans

No discussion of health and disability is complete without paying
attention to America's growing number of wounded veterans.

The injured return from each of our nation's wars with different
disabilities, different expectations, and different needs. Although data
on the nature and extent of disability among today's returning veterans
(those wounded physically and those wounded psychologically) are
fragmentary, NCD has discovered little ground for confidence that the
needed comprehensive, multiagency, integrated planning is taking place.
Regarding what is required and what resources are needed, we can say
that the immensity of the challenge is equaled only by the enormity of
our responsibility to provide the highest quality of services and the
fullest range of opportunities to those who have given up so much in
service to the nation. NCD stands ready to be of all possible assistance
to other government agencies and to appropriate nongovernmental entities
in this crucial effort.

[]{#__RefHeading___Toc181717823 .anchor}Recommendations

***Recommendation 4.1:*** NCD recommends that Congress incorporate in
any future Medicaid reform legislation provisions requiring each state,
as an element of its approved state plan, to develop meaningful criteria
for determining the return on investment of all expenditure increases,
or expenditure cuts, contemplated in the state's Medicaid program.

***Recommendation 4.2:*** NCD recommends that CMS augment its published
data on managed care SNPs to indicate the extent to which such plans
meet concerns often expressed by people with disabilities, including
concerns about the range and availability of specialized practitioners
and services, rights to continuity of service in established
practitioner relationships, and similar matters. CMS should review the
regulatory and advisory guidance it gives to Medicare Advantage plan
providers and state Medicaid agencies in regard to these matters, with a
view toward ensuring that the full scope of rights that exist under the
law are effectively communicated to program administrators and service
providers.

***Recommendation 4.3:*** NCD recommends that Congress enact legislation
creating a standing committee, including representatives of CBO, CMS,
OMB, and the disability community, to monitor progress, develop
forecasting tools, and assess alternative assessment models to measure
and predict the budgetary impact of rebalancing on the overall fiscal
status of the Medicaid program.

***Recommendation 4.4:*** NCD recommends that CMS create, in house or by
competitive bidding, a national clearinghouse on consumer-controlled and
self-directed human services programs.

***Recommendation 4.5:*** NCD recommends that the highest levels of CMS
and the IRS meet to identify the extent of the tax penalization of
Medicaid budget holders and that the two agencies jointly develop and
implement strategies for its prevention, including recommendations to
Congress for legislative action, if necessary.

***Recommendation 4.6:*** NCD recommends that CMS plan and host a
national conference or a series of regional forums in select geographic
locations in collaboration with national and state organizations and
agencies serving people with disabilities. This would be part of an
effort to obtain the fullest possible sense of the issues involved in
Medicare's implementation of the in-the-home rule, with a view toward
fashioning a policy that truly makes sense for the twenty-first century,
that recognizes the potential of technology and the aspirations of its
users, and that does not force people with mobility impairments to make
the choice between dependence, immobility, and potential danger and a
situation very much akin to house arrest.

***Recommendation 4.7:*** NCD recommends that Congress hold oversight
hearings into whether CMS consistently has adhered to its commitments
regarding the reform of the national and local coverage determination
processes, and furthermore, that Congress conduct a review of all
coverage determinations, court and administrative tribunal filings, and
other relevant sources to determine whether coverage determinations are
being made or applied on the basis of reliable and verifiable evidence,
or whether their origins and purposes continue to be shrouded in
secrecy.

***Recommendation 4.8:*** NCD recommends that the Medicare Ombudsman
publish a notice in the *Federal Register* seeking input on
disability-related topics that the Ombudsman should consider, and that
based on this input, appropriate ODFs be scheduled, publicized, and
conducted.

***Recommendation 4.9:*** NCD recommends that the Centers for Disease
Control and Prevention and CMS, in their design, implementation, and
evaluation of all future risk-reduction and health-promotion
demonstrations with Medicare beneficiaries, ensure that beneficiaries
under the age of 65, including people with a wide range of all
disabilities, be recruited and enabled to participate fully in the
demonstration, and that estimates of potential health benefits and cost
savings be developed based on this inclusive approach.

***Recommendation 4.10:*** NCD recommends that permanent mental health
parity legislation be adopted, barring any discrimination in benefits,
copayments, premiums, or other terms and conditions based on mental
illness or on the nature of the condition for which treatment is being
sought.

***Recommendation 4.11:*** NCD recommends the appointment by the
President of a high-level national commission to study the issues
involved in imprisonment of people with mental illness, including (1)
the extent to which enhanced community-based treatment services could
reduce the incidence of criminality, imprisonment, and recidivism among
people with mental illness; (2) the degree to which diversion of certain
offenders from prison to treatment settings could be achieved without
risk to public safety and without undermining the credibility of the
criminal sanction; and (3) the amounts that federal, state, and local
taxpayers might save as a result of such measures.

[]{#refheading___toc181717824 .anchor}Chapter Five: Long-Term Services
and Supports

[]{#__RefHeading___Toc181717825 .anchor}Introduction

This chapter begins with an attempt to put the issue of long-term
services and supports (LTSS) into context. It does this by addressing
some of the definitional complexities surrounding efforts to address the
subject. Citing NCD's three major related reports published between 2004
and 2006, the section notes how traditional demarcations between medical
and personal services and how conventional programmatic categories that
separate housing from transportation from personal assistance further
complicate the effort to come to terms with long-term care.

Recognizing that some elements of the definition and some perspectives
on the problem confronting society are widely understood and shared, the
chapter then discusses the institutional bias in Medicaid and other
human services programs that favors nursing home or other institutional
settings to aging in place or living in one's own community and home.
Because Medicaid is the largest source of funding for long-term services
and supports in this country, the section offers a brief history of
Medicaid to explain how the bias came about. It then discusses the
strategies that have been used to incorporate greater flexibility into
the funding formula and that have resulted in the emergence of important
new options for home and community-based services and care. A number of
these options are discussed, with an emphasis on recent changes in the
law, including the enactment of Money Follows the Person (MFP), that
reflect an awareness of the need to rebalance Medicaid expenditures in
ways that will increase the resources for LTSS.

In a related vein, the chapter next discusses recent changes in the
Older Americans Act that likewise reflect the growing policy consensus
around home-based services and around consumer-controlled and
cash-and-counseling models of service in a growing array of program
settings.

Key changes in the law expanding the availability of cash and counseling
are discussed next. Great hope attaches to these approaches, and NCD
attempts to set forth some of the major reasons this model is generating
so much interest.

Following this discussion, the chapter returns to the pressing questions
surrounding private sector long-term-care insurance. Issues in the state
partnership program are discussed, and recommendations are offered for a
study of means to make such insurance more widely available.

Finally, building on the long-term-care insurance concept, the chapter
directs attention to the highly innovative AmeriWell plan described in
NCD's 2005 long-term services report. Further research into the
potential of this model is recommended, based on its great potential for
resolving many of the difficulties that have stymied other proposals.

[]{#__RefHeading___Toc181717826 .anchor}Scope of the Concept

As NCD has indicated, the first and still key question in discussing the
need for and the provision of long-term services and supports in this
country is one of definition. Exactly what do long-term services entail
and for whom are they intended?

Broadly speaking, long-term services include medical, income
maintenance, residential, personal assistance, transportation, housing,
and other services targeted to older people and to those people with
disabilities who meet certain additional medical, income, or other
criteria. Many of these issues are addressed by specific statutes and
designated funding streams, but many also involve the complex
interaction among service systems and funding streams. Still others fall
between the service systems and remain substantially unaddressed.

Public policy debates over the funding of Social Security (as an income
maintenance program), the costs of Medicare (as a health care program),
or other specific programs and funding streams, while important, lose
sight of the big picture. Their proper scope, likely cost, and most
effective design cannot be analyzed or even intelligently discussed in
isolation.

NCD has been deeply engaged in understanding the scope and meaning of
long-term services and supports for all Americans, including people with
disabilities. In the past three years, the Council has produced three
major reports addressing the subject from the standpoint not only of
what specific community resources are required to meet long-term
services needs, but also of what criteria constitute livable
communities. These reports are *Livable* *Communities for Adults with
Disabilities*,[^66] *The State of 21st Century Long-Term Services* *and
Supports: Financing and Systems Reform for Americans with
Disabilities*,[^67] and, most recently, the Council's October 2006
report *Creating Livable Communities.*[^68]

According to NCD's 2005 long-term services report,

NCD undertook research for this report because it has grown increasingly
concerned about the (a) lack of a coherent national long-term services
and supports (LTSS) public policy for all people with disabilities; (b)
fragmented nature of service and support delivery systems, with uneven
access and services provisions; and (c) LTSS costs of 22 percent or more
of state budgets, which are fast becoming unsustainable.... no single
federal program, federal agency, or congressional committee is charged
with the responsibility for the management, funding, and oversight of
LTSS; however, 23 federal agencies are actively involved in LTSS using
the NCD definition.

As reflected in this report, NCD believes that America needs a coherent
and comprehensive framework for its LTSS policies, programs, and
funding.

The development of long-term services and supports (LTSS) comprehensive
policy will define the future economic independence of Americans with
disabilities. Changing demographic and economic trends, here and abroad,
will demand that the United States retool its programmatic and financial
infrastructure to protect and promote individual dignity and
independence of all Americans with disabilities. The development of
sustainable and affordable LTSS public policy for the 21st
century---funded through a unique combination of individual
contributions, innovative private sector assistance, and public
support---will provide a new security for Americans with disabilities to
work and live independently.

Redressing the Institutional Bias

However much people may differ in their definitions or expectations of
LTSS, virtually all who have studied the subject agree that a far larger
proportion of such services than necessary is available only in nursing
homes or other institutional settings. As a result, the number of people
living in nursing homes rather than in their own homes and communities
is widely recognized to be far greater than need be. In explaining this
institutional bias in LTSS arrangements, one of the main factors is the
role of Medicaid in the provision of funding for LTSS.

Medicaid and the Community

As part of a system for providing medical care for older people and
people with disabilities who meet poverty guidelines, Medicaid included
provisions for nursing home services where needed. Because beneficiaries
would be deemed eligible for such services only if no longer able to
live on their own, people needed to reach a level of severe medical need
or frailty that would warrant institutional care. Of course, in numerous
cases, people could have, and most often would have, preferred to
receive services in their homes and communities, but by rejecting
institutional care, they also forfeited any entitlement to Medicaid
LTSS. A kind of catch-22 was created. If you were sick enough to be
eligible for Medicaid, you needed to be in a nursing home. If you didn't
need institutional care, you weren't sick enough to need these care
services.

The history of Medicaid over the past 25 years is in part a history of
efforts to broaden the range of home and community-based and home care
services that are available to people outside of institutions, and to
extend eligibility for such services to as many people as possible who
need and can benefit from them.

Until the year 2000, this effort to reform Medicaid largely took the
form of creating waiver programs through which states could secure
funding and permission to deviate from normal Medicaid requirements.
Through such waivers, most notably home and community-based waiver
services, and through the use of Sections 1115 and 1915 (c) of the
Medicaid Act,[^69] states were thus enabled to provide formerly
institution-based services to children in their homes, to senior
citizens, and to adults with disabilities in various circumstances.

Nothing in the law required a state to apply for or implement any such
waivers. In 1999, however, this changed to some degree with the Supreme
Court's landmark decision in *Olmstead v. L.C.*,[^70] holding that
unnecessary institutionalization is prohibited by the Americans with
Disabilities Act. The Court laid down a three-pronged test to determine
when involuntary institutionalization would be regarded as improper and
indicated some of the factors that would go into assessments.

But without alternatives to nursing homes in the community and without
resources for community living, a finding that institutionalization is
illegal would have little impact. Accordingly, perhaps the most
important result of the *Olmstead* decision was the development of
coordinated state planning to (1) identify people who could return to or
remain in the community and (2) develop the resources and assistance
necessary for them to do so.

Opinions about the effectiveness of *Olmstead* implementation vary
widely, as have the implementation strategies adopted in different
states. What is not disputed is that the vast majority of Medicaid LTSS
funding (most recently estimated at 73 percent[^71]) continues to go to
institutional rather than home-based care; that Medicaid represents the
single largest source of public funding for LTSS (most recently
estimated at 45 percent of a \$137 billion annual commitment[^72]); and
that continued primary reliance on waivers as a means to divert funds
from institutional to community-based services burdens efforts to
redress the balance in numerous and complex ways.

Money Follows the Person

In the past two years, two major developments have occurred under
Medicaid that could contribute significantly to the redirection of funds
into the provision of decentralized, community-based, even
consumer-controlled Medicaid LTSS. One of these, the elimination of
waiver requirements for cash-and-counseling programs under the Medicaid
home health care service category, will be discussed in the
Cash-and-Counseling section below. The other, MFP, is a historic step
toward breaking down Medicaid's institutional bias.

Adopted under the Deficit Reduction Act of 2005 (DRA), which was signed
into law on February 8, 2006,[^73] MFP creates a competitive program of
grants to states for use in providing expanded home and community-based
services to Medicaid recipients. Unlike standard Medicaid, no matching
funds are required. Moreover, eligibility for home and community-based
services (amounting to LTSS) is not predicated on a person's ability to
meet the level-of-care needs that would justify nursing home admission.
In some cases, an inability to perform two or more activities of daily
living could trigger eligibility for these services. This means that MFP
is a preventive program, rather than just an alternative to nursing home
care.

Other features of MFP have positive implications for flexibility and for
breaking down the either-or dichotomies, between needing and not needing
services, and between medical and personal care, that have characterized
Medicaid throughout its history.

MFP is a demonstration, limited in the number of people it can reach.
Although its use of incentive funding should encourage states to
participate, and although states will need to submit comprehensive plans
to win funding, receipt of funds by itself is no guarantee that states
will make significant progress in redressing the institutional balance.
States will need to coordinate a number of options, policies, and
funding streams to achieve the goals of MFP.

One important feature of the program is that it creates a framework for
immediate action and for achieving longer-term goals. In this
connection, the Centers for Medicare and Medicaid Services (CMS), the
federal agency that administers and oversees Medicaid, is expected to
release rebalancing criteria for use by state grantees in evaluating the
long-term success of their programs. It is expected that these criteria
will provide for the establishment of specific numerical or monetary
goals for use in assessing the movement of people and funds out of
institutions and back into the community.

NCD is confident that federal recognition of the need for
deinstitutionalization is widely diffused and likely to be enduring. But
given the complexity of the issues and programmatic interactions
involved, a variety of decisions, including but not limited to budgetary
decisions, can affect MFP and related initiatives in unintended and
often unforeseen ways. For example, as noted by commentators, decisions
that encourage states to make further use of Medicaid managed care could
have implications for MFP, depending on how and whether this service was
incorporated under the managed care umbrella.

NCD takes no position on whether and how Medicaid managed care should be
employed. What NCD does emphasize, however, is that small, demonstration
state-grant programs like MFP are hugely vulnerable and hugely
important. To ensure that all decisions effecting MFP are made
consciously and intentionally, NCD recommends that CMS convene an
advisory panel of advocates, Medicaid recipients, state officials, home
health care providers, and other appropriate stakeholders to (1) closely
monitor the operation of the fledgling program, (2) identify issues
arising at the state level or because of actual or impending federal
action, and (3) advise the Administration on a real-time basis of
implications and outcomes that might not otherwise be apparent but that
need to be considered before final decisions are made.

In this connection, NCD renews its call for enactment of what must be
considered an important piece of companion legislation to MFP. NCD
recommends reintroduction and enactment of the Medicaid Community
Attendant Services and Supports Act (MiCASSA), which has been offered in
each of the past several Congresses.

The Older Americans Act

Since its inception, the Older Americans Act (OAA), a small, far less
well-known program than Medicaid, has maintained a greater focus on
providing services to people in their homes and communities. Although
not targeted to people with disabilities as such, its relevance arises
from the convergence of disability and age. More specifically, its
relevance arises from its role in helping to prevent unnecessary
institutionalization, a role that if successful will include among those
benefited a significant proportion of older people with disabilities.

Paralleling aspects of both MFP and cash and counseling, the recent
amendments to the OAA create the Choices for Independence (CFI)
demonstration project.[^74] Under this program, states will be eligible
to receive grants to establish demonstration programs that give OAA
services recipients unprecedented opportunities to manage their own
budgets and to determine the nature and sources of the services and care
they need. Although not involving the literal diversion of funds from
nursing home to home-based services, CFI, by giving people more control
over their services, is likely to contribute powerfully to people's
ability to remain in their own homes. If people can get what they
individually need, instead of a narrowly predetermined list of services
that people in their situations generally are expected to need, their
sense of autonomy and real options are likely to be significantly
greater. Nursing homes can become truly a last resort.

The full details of the CFI demonstration will not be determined until
the Department of Health and Human Services (HHS) issues implementing
regulations. NCD recommends that, in its implementation and oversight of
the OAA, HHS endeavor to maximize the value of the demonstration by
collecting all reasonably available data concerning the benefits
accruing to participants and the savings achieved by states as a result
of consumer choice and that the department attempt to measure the level
of nursing home costs avoided or deferred by virtue of the program. HHS
should collect and disseminate technical assistance materials including
best practices to assist all states in developing similar programs.

Cash and Counseling

The motion of self-directed care has attracted great interest and been
the subject of experimentation under the Medicaid program. As the key
component of self-directed care, cash and counseling allows Medicaid
recipients to exercise control over their own budgets, deciding on the
range of goods and services they need, selecting providers, and either
dispersing funds directly or through a case manager or other
intermediary.

Cash and counseling exemplifies the thin line between traditional
medical services and other LTSS. As an element of the Medicaid program,
its discussion could have been included in Chapter Four on Health.
Because most of the services involved---that is, those services that
people choose for themselves---do not fall within the domain of
traditional medical services and are not provided by physicians (though
they may in some instances require medical authorization or
justification), cash and counseling is addressed here as LTSS.

Until now, cash-and-counseling demonstrations under Medicaid have been
authorized and carried out under the waiver provisions of the law. This
means that, once again, specific CMS approval was required, separate
administration and funding were established, and the program operated as
an exception to standard Medicaid practice. Pursuant to the DRA,[^75]
cash-and-counseling programs can now be operated by states as part of
their regular Medicaid program, without the need for a waiver from CMS.

To be sure, freedom from waiver requirements means that certain standard
Medicaid provisions that could be eliminated by waiver continue to
apply. For example, recipients of the new service need to be eligible
for home health services under the state's Medicaid plan. But on
balance, the ability to forgo the waiver process would seem to outweigh
the requirements of regular Medicaid, making this provision a positive
step in the direction of greater availability and use of
cash-and-counseling strategies.

Although data are preliminary, indications from cash-and-counseling
projects conducted around the country thus far suggest they represent an
important step forward in public health policy. These preliminary data
suggest that they hold out the potential for improving consumer
satisfaction and autonomy as well as enhancing health outcomes.[^76]

Understandable concerns have been expressed that cash and counseling
could cost more than traditional Medicaid. Obviously, these questions
will play a large role in any systematic analysis done by CMS or in any
meta-analyses of small studies. NCD recommends that, in evaluating the
cost implications of cash and counseling, HHS and Congress should
consider the fact that ordinary comparisons of per capita beneficiary
costs cannot take into account or assign a monetary value to all of the
values underlying greater beneficiary self-determination or all of the
benefits resulting from heightened autonomy.

Long-Term-Care Insurance

Existing Models

The DRA contains amendments to the State Qualified Long-Term-Care
Insurance Partnership Program.[^77] Under this program, participating
states essentially make a deal with citizens. If the citizens buy
certain long-term-care insurance policies, the state will exempt from
asset-limitation tests for Medicaid eligibility the amounts of money
received as benefits under such policies. Apart from toughening the
look-back provisions and lengthening the look-back period for
establishing Medicaid eligibility, it is not clear whether the DRA has
taken major steps in the area of long-term-care insurance. In NCD's
view, much more could be done to encourage the purchase of and to
enhance the availability of long-term-care insurance.

NCD recommends that Congress establish a national commission, including
consumers, experts, regulators and legislators, insurance industry
representatives, and other interested parties, to comprehensively review
the potential means by which long-term-care insurance, including
coverage for home and community-based services and care, could be made
more widely, if not universally, available. If qualifying coverage under
the state partnership programs does not make adequate provision for
home-based LTSS (which according to AARP should include transportation,
nutrition, and housing), such insurance could have the perverse
consequence of working against the trends and values discussed above and
could push people into institutional care for the sake of coverage in
many of the same ways that Medicaid has traditionally done.

The AmeriWell Plan

NCD's report *The State of 21st Century Long-term Services and
Supports*[^78] proposes a remarkable new model for the provision and
funding of long-term-care and LTSS for all Americans. The model would
respond to the traditional population of retirees whose needs and
circumstances have garnered the bulk of attention in the LTSS
discussion. While addressing their needs in a way that de-couples LTSS
from Medicaid or Medicare, and thereby reduces the tensions and
ambiguities surrounding the definition of health care, the AmeriWell
plan addresses the long-term-care needs of people prevented by
significant disabilities from pursuing gainful work. Within the course
of one generation, the plan dramatically reduce actuarial estimates of
the costs to the taxpayers of several types of dependency.

The key to the AmeriWell concept is the AmeriWell account, funded at
birth for every American through a combination of public and private
sources, allowed to grow through the processes of safe investment and
compounding, available to expand the pool of capital available to this
country for investment and economic growth, and ultimately available to
meet the LTSS needs of people when they are no longer able to work.

A proposal of this magnitude will require extended public discussion and
education around the LTSS problem. To that end, NCD recommends that the
long-term-care insurance study commission recommended above be tasked
more broadly to study the AmeriWell proposal and make a full report to
Congress and the Administration on what would be involved in bringing it
into existence.

[]{#__RefHeading___Toc181717827 .anchor}Recommendations

***Recommendation 5.1:*** NCD recommends that CMS convene an advisory
panel to (1) closely monitor the operation of the fledgling MFP program,
(2) identify issues arising at the state level or because of actual or
impending federal action, and (3) advise the Administration on a
real-time basis of implications and outcomes that might not otherwise be
apparent but that need to be considered before final decisions are made.

***Recommendation 5.2:*** NCD recommends reintroduction and enactment of
MiCASSA.

***Recommendation 5.3:*** NCD recommends that, in its implementation and
oversight of the OAA, HHS endeavor to maximize the value of the
demonstration by collecting all reasonably available data concerning the
benefits accruing to participants and the savings achieved by states as
a result of consumer choice and that the department attempt to measure
the level of nursing home costs avoided or deferred by virtue of the
program.

***Recommendation 5.4:*** NCD recommends that, in evaluating the cost
implications of cash and counseling, HHS and Congress consider the fact
that ordinary comparisons of per capita beneficiary costs cannot take
into account or assign a monetary value to all of the values underlying
greater beneficiary self-determination or all of the benefits resulting
from heightened autonomy.

***Recommendation 5.5:*** NCD recommends that Congress establish a
national commission to comprehensively review the potential means by
which long-term-care insurance, including coverage for home and
community-based services and care, could be made more widely, if not
universally, available.

***Recommendation 5.6:*** NCD recommends that the long-term-care
insurance study commission (see Recommendation 5.5) be tasked more
broadly to study the AmeriWell proposal and make a full report to
Congress and the Administration on what would be involved in bringing
the program into existence.

[]{#__RefHeading___Toc181717828 .anchor}Chapter Six: Children and Youth

[]{#__RefHeading___Toc181717829 .anchor}Introduction

A chapter dealing with youth necessarily differs from the other chapters
in this report. Though such a chapter should address specific laws and
regulations, successes and failures, reports and budgets, it must also
address questions of leadership development. Even more, it must find a
way to capture the voices of youth, as they identify their issues and
priorities, and as they learn and express anew the challenges of life in
their own words and their own way.

In this light, the chapter begins with a discussion of NCD's Youth
Advisory Committee. It then proceeds to describe the National Youth
Leadership Network. While offering specifics respecting the activities
of both, the chapter attempts to convey a sense of their more
intangible, longer-term goals, and attempts to convey a sense of the
issues and concerns expressed by youth themselves.

The chapter commends White House efforts to direct attention and
resources to the needs of youth, expressing the hope that these efforts
are inclusive.

The chapter next considers foster care. A major forthcoming NCD study
should provide comprehensive and valuable data for assessing the
effectiveness of current policies and programs, and should offer
insights into areas in need of reform.

The chapter's final section addresses resources for transition and for
youth employment, noting the existence of several valuable resources and
suggesting ways that their relevance to the needs of youth with
disabilities can be more fully ensured.

[]{#__RefHeading___Toc181717830 .anchor}The Youth Advisory Committee

NCD is especially proud of the work of its Youth Advisory Committee
(YAC) over the years. The YAC has created a forum in which youth from
all backgrounds and all parts of the country can develop leadership
skills, identify issues of concern to them, engage in outreach on behalf
of a variety of goals and concerns, and provide input through NCD into
the development of national disability policy.

In 2006, the YAC expanded the scope of its work, holding its 2006 Next
Generation Roundtable.[^79] At this event, members of the YAC, together
with additional invited youth participants, raised and discussed the
issues of greatest concern to them. Issues related to employment and to
the experiences and demands of leadership emerged as particularly
fruitful topics.

It is not possible to capture the richness of the discussions or the
vibrant voices of the participants in this report. Those wishing to
learn more about the Roundtable are urged to visit the NCD Web site and
review the summaries, evaluations, and other materials generated.[^80]

The Roundtable was held in conjunction with NCD's annual celebration of
the anniversary of the signing of the Americans with Disabilities Act.
Combining these two events afforded an opportunity for YAC and NCD
members to become acquainted, and exposed future leaders to the key
history that still animates and forms the backdrop for many of their
efforts. NCD is greatly benefited by the input and energy that its
members and staff received from the YAC members and guests.

On the basis of its experience with the YAC, NCD recommends that all
federal agencies engaged in youth-related policymaking or program
administration take measures to obtain input and feedback from the
children and youth who are the objects and intended beneficiaries of
their efforts.

[]{#__RefHeading___Toc181717831 .anchor}The National Youth Leadership
Network

NCD commends the continuing work of the National Youth Leadership
Network (NYLN).[^81] Currently funded by a consortium of federal
agencies, NCD is proud to have been a supporter of the NYLN over the
years.

Open to youth between the ages 16 and 28, NYLN has introduced many
talented future leaders to public policy issues and has witnessed the
participation of numerous members and alumni in a variety of posts and
on a variety of state and local boards.[^82]

Examination of a recent issue of the NYLN newsletter reflects the broad
range of leadership development, education, and other functions it
serves. Articles include profiles of candidates with disabilities for
elective office, an account of study abroad for students with
disabilities, and other features designed to build skills, foster
confidence, and widen horizons.[^83]

[]{#__RefHeading___Toc181717832 .anchor}White House Conference

NCD commends the White House for hosting the White House Conference on
Helping America's Youth[^84] and particularly for holding regional
conferences designed to bring the effort to local communities and to
spotlight local initiatives and partnerships that are making a
difference. NCD is confident that many worthy models will be highlighted
through this process.

NCD is hopeful that a stronger connection can be forged between these
efforts and the President's New Freedom Initiative. Many of the issues
faced by young people are the same, whether or not they are people with
disabilities. But many other issues are different, or at least made more
complex by the presence of a disability, and by the different
interactions with a variety of programs and institutions, and most of
all by the different attitudes.

Attention to youth development such as that accorded by the White House
through these conferences is priceless. That attention is inclusive and
certainly does take youth with disabilities fully into account, but it
should more consciously and more expressly do so. Therefore, NCD
recommends that if the White House continues this form of outreach to
the youth, families, and communities of America, then efforts should be
included to remind the nation of the many ways in which children and
youth with disabilities are affected by the way programs are designed
and implemented, and should emphasize the values of inclusiveness that
we all share.

[]{#__RefHeading___Toc181717833 .anchor}Foster Care

NCD has long maintained a high degree of concern for children with
disabilities in the foster care system, and this subject has been
addressed in recent progress reports. In light of the serious
difficulties facing the foster care system nationwide,[^85] and in light
of the probability that children with disabilities make up a larger
proportion of the foster care population than of the childhood
population as a whole, NCD has been understandably concerned about
whether child-finding services, case management, individualized
services, abuse and neglect prevention, long-term placement, funding,
and other variables are operating in effective and coordinated ways.

Now, NCD has commissioned a major study of the issues. Expected to be
completed by the fall of 2007, this study will examine demographic data,
information on available services, and the nature of existing laws to
create as full a picture as possible of the foster care population of
children with disabilities, of existing resources, of legal provisions,
and of any needed reforms. NCD expects that this study will contribute
significantly to the formulation of public policy in the foster care
area.

[]{#__RefHeading___Toc181717834 .anchor}Transition and Employment

One of the issues of concern to youth themselves and to a variety of
service systems on their behalf is that of transition.[^86] In that
light, NCD commends the work of the Federal Partners in Transition
Workgroup, of which the Council is a part. NCD appreciates the
supportive role played by workgroup member agencies in organizing the
2006 Roundtable. NCD recommends that the workgroup expand its role and
develop plans for bringing the resources of each member agency to bear
more effectively in addressing and solving the problems that hinder
seamless transition from school to work or to adult services.

In a related connection, the major statute structuring our governmental
participation in job placement, worker training, and employment
development is the Workforce Investment Act of 1998 (WIA).[^87] Although
the future of WIA is uncertain, because of delays in its
reauthorization, it continues in effect pending revisions.

One of WIA's major premises is that local communities and workforce
development partnerships should play a leading role in defining needs
and identifying and preparing workers. In this connection, the act
requires that resources be devoted to youth development and that local
boards use a competitive bidding process to identify and select
providers of youth services.

To assist in this identification process, the Department of Labor
Employment and Training Administration has developed the "WIA Youth
Request For Proposal (RFP) Guide."[^88] NCD hopes that this guide---and
all similar resources developed to help WIA partners meet their
obligations to youth---will reflect the presence of youth with
disabilities among the youth population to be served, will identify the
needs of this population, and will emphasize the means by which service
providers can best meet these needs.

Accordingly, NCD recommends that all technical assistance materials
developed to facilitate implementation of the WIA be reviewed by the
sponsoring agency. This review should ensure that in dealing with youth
transition, training, or placement issues these materials reflect the
needs of youth with disabilities among the targeted population.

[]{#__RefHeading___Toc181717835 .anchor}Recommendations

***Recommendation 6.1:*** NCD recommends that all federal agencies
engaged in youth-related policymaking or program administration take
measures to obtain input and feedback from the children and youth who
are the objects and intended beneficiaries of their efforts.

***Recommendation 6.2:*** NCD recommends that if the White House
continues this form of outreach to the children, families, and
communities of America, efforts should be included to remind the nation
of the many ways in which children and youth with disabilities are
affected by the way programs are designed and implemented, and should
emphasize the values of inclusiveness that we all share.

***Recommendation 6.3:*** NCD recommends that the Federal Partners in
Transition Workgroup expand its role and develop plans for bringing the
resources of each member agency to bear more effectively in addressing
and solving the problems that hinder seamless transition from school to
work or to adult services for many youth with disabilities.

***Recommendation 6.4:*** NCD recommends that all technical assistance
materials developed to facilitate implementation of the WIA be reviewed
by the sponsoring agency to ensure that in dealing with youth
transition, training, or placement issues these materials reflect the
existence and needs of youth with disabilities among the population
being addressed.

[]{#__RefHeading___Toc181717836 .anchor}Chapter Seven: Employment

[]{#__RefHeading___Toc181717837 .anchor}Introduction

The year 2007 promises to be a watershed year for employment policy. A
major NCD report on the subject, including several issue briefs, will be
published.[^89] Another landmark NCD report dealing with federal
employment programs in the broader context of financial incentives in
the lives of people with disabilities also will be published.[^90]
Finally, the long-awaited reauthorization of the Workforce Investment
Act of 1998 (WIA), including the vocational rehabilitation (VR) system,
is likely to take place.

These watershed events unfold against an increasingly ominous backdrop,
however. Research findings indicate that, after peaking in 1994, the
percentage of adults with disabilities who are employed has fallen
steadily.[^91] Moreover, although stimulation of mainstream
participation in society through employment was one of the primary
objectives of President Bush's New Freedom Initiative, the negative
trajectory, which began in the mid-1990s, has continued through this
decade.

Consistent with the centrality of employment to the destinies and
aspirations of all Americans, NCD has maintained a keen awareness of,
and has paid close attention to, the subject of employment over the
years, including in major reports[^92] and in analyses of various
dimensions of the issue in each of its annual status reports. NCD is
obliged by statute to address employment in its annual reports to the
President and Congress, but that obligation has been only the starting
point for the Council's involvement and concern.

Because 2007 will witness important input to the employment policy
discussion, this report will not attempt to address the full range of
issues that will be covered in greater depth elsewhere. Instead, it will
attempt to highlight the historical and cultural context in which a
number of the key issues and barriers to employment will present
themselves. Attention also is directed to some of the pressing decisions
society must make for those barriers to be surmounted.

In that light, the chapter begins with a discussion of the changing role
of employment in the economy and the rapidly changing nature of employer
expectations and labor market demands. It raises questions about whether
our approach to fostering employment relationships takes full account of
all that employers want and need today. The chapter proceeds to a
consideration of other systemic changes in the labor market, such as the
changing role of fringe benefits and the decline of single-employer
careers, with a view to initiating discussion of their implications for
our approach to the stubborn persistence of high unemployment among
people with disabilities who are willing and able to work.

Turning to the specifics that are likely to dominate policymaking and
discussion this year, the chapter addresses the core problem of work
disincentives. After reviewing the nature of the problem, the chapter
discusses dramatic proposals for reform that NCD believes hold
significant promise.

Owing to the emphasis currently placed on education and outreach to
employers, the chapter next addresses questions concerning the impact of
these efforts. While appreciating the timeliness and accuracy of the
information conveyed, NCD suggests that better data are needed on what
kinds of marketing efforts work and why.

In connection with the alarming data concerning the decline in workers
with disabilities in Federal Government employment, the chapter applauds
the concern already shown about this issue and suggests specific
questions and sources of data for fully analyzing and responding to the
problem.[^93]

Finally, the chapter discusses two lesser-known employment and small
business programs, suggesting that their role and relevance needs to be
reassessed in light of contemporary conditions and needs.

[]{#__RefHeading___Toc181717838 .anchor}The Changing Nature of
Employment

The Ticking Clock

Few Americans can doubt the psychological primacy of work in the
establishment of self-worth and the preservation of pride and dignity.
In our culture, work and identity are closely linked. But where society
to varying degrees has accepted a responsibility for access to some of
the basic building blocks of a good life---education, food, housing, and
emergency medical care---our attitude toward employment is more
ambivalent. Although national policy, as embodied in the
Humphrey-Hawkins Act, commits the nation to full employment, we continue
to rely largely on the marketplace, and on the skill and initiative of
workers coupled with the needs and self-interest of employers, to bring
that result about.

We operate a large number of programs designed to assist in the
fostering of employment relationships, including significant programs
targeted specifically at the training and placement of individuals with
disabilities. Yet, despite considerable effort and investment, data
consistently show an employment rate for working-age Americans with
disabilities of less than one-half that for the population as a whole.
At the same time, other data show lower incomes when people with
disabilities do work and generally higher levels of poverty for this
segment of the population.

Equally disheartening, available data indicate that, far from steady
progress, our efforts, both in the private sector where we have little
direct control and in the public sector where we have much, are headed
in the wrong direction.

There was a time when society believed that people with disabilities
could not work. Indeed, to a large degree, a presumptive inability to
work constitutes the basis for the status or the characterization of
being "disabled." However well intentioned it may originally have been,
this attitude, which still pervades much of our public policy, resulted
in the substitution of dependency for productivity. Today, as pressure
on public resources mounts, as critical baby-boomer-replacement labor
shortages loom, and as the proportion of working-to-nonworking Americans
falls, we can less and less afford this waste of human potential.

The time may be closer than any of us care to acknowledge when public
resources or attitudes no longer will be able or willing to sustain high
levels of dependency. Viable strategies for replacing dependency with
opportunities for productive employment are urgently needed.

Changing Demands

NCD's forthcoming employment report is expected to use a framework that
divides issues and strategies into a supply-side and demand-side format.
This approach is welcome, because it echoes much of the thinking and
terminology currently used in economic policy discussions, and because
it creates a useful framework for organizing the multitude of issues,
institutions, and variables that must be taken into account when
fashioning solutions. Yet the range of issues that must be considered is
daunting and increasingly complex.

Worker Flexibility

In anticipation of the employment report, NCD believes that existing
employer-education and worker-training efforts continue to rely on
assumptions that may be increasingly out of step with the realities of
the contemporary labor market. For instance, casual examination of a
number of federal and business-sponsored education initiatives reveals
an emphasis on the loyalty, productivity, and dependability of workers
with disabilities, and on the fact that the cost and difficulty of
accommodations are frequently overestimated. All this is well-documented
and eminently worth emphasizing, but much of it may miss the point. Even
a cursory examination of any major newspaper's job ads suggests that
neither employers nor employees expect or demand a high degree of
loyalty in terms of tenure or other traditional measures. What growing
numbers of employers are beginning to seek and expect from employees are
flexibility and adaptability, in terms of skills, expectations,
deployments, assignments, and functions.

We have done a good job in propounding principles of workforce
flexibility in terms of work hours, telecommuting, and other conditions
of work, but we have yet to adequately address the perplexing questions
of how the training and marketing of workers with disabilities can
respond to, let alone turn to advantage, the likely labor shortage and
other labor market trends over the next decade.

The traditions of job development and placement for workers with
disabilities, which emphasize the practice of job analysis and the
identification of technology that will facilitate the effective
performance of a given job, are as admirable as ever, but sadly, they
also may be relics of a bygone age. Beyond responding more quickly to
the evolving skill requirements of employers, we also must respond to
the fact that it is mind-set, skill set, and attitudes---defined in more
ways than ever before---that increasingly embody what the corporate
environment demands today.

It is likely that the WIA reauthorization has advanced too far for this
report, or for the two NCD reports noted above, to directly affect its
content. Nevertheless, such new realities as the ever-increasing rate at
which job duties and work technology shift require that we take a whole
new approach to the role of what were traditionally called
postemployment services in VR and to the ways that we support and
nurture the employment relationship once established, from the
standpoint of job retention and upward mobility. The new realities
suggest that rapid-response technological support, and intensive
lifelong worker training tightly integrated into the VR system, have
become indispensable elements of employment policy.

Outsourcing

In a related sense, NCD has not been successful in finding evidence of
the impact of outsourcing and rapid expansions and contractions of
workforces on the employment of people with disabilities. Nor has NCD
found evidence of in-depth discussions among policymakers regarding
implications of these labor market trends for the placement and tenure
of workers with disabilities. Once again, while the rhetoric of
stability, reliability, and the like hark back to the post--World War II
era of career employment, the realities of today's labor market have
become all the more fluid and unstable. Much the same could be said of
part-time work, with its implications for people stringing together
often unrelated jobs in an effort to make a satisfactory living. Nothing
in the current Rehabilitation Act or in what NCD has heard in the
discussion of its reauthorization gives confidence that these issues
have been understood or adequately addressed.

Fringe Benefits of Employment

One of the major problems facing our society is the decline of fringe
benefits of employment, most notably the decline of employer-sponsored
health insurance. While the consequences of this trend for society as a
whole are widely known, its specific impact on workers with disabilities
and their families has not been so fully aired.

For a variety of reasons not pertinent here, courts consistently have
declined to apply antidiscrimination laws to employer-provided health
insurance. Paradoxically, as employer provision of insurance decreases,
the problems faced by workers with disabilities become much more acute,
since for them, the ordinary problems associated with finding
alternative coverage are compounded.

This issue will be discussed further in the Work Incentives section
below. Whether from the standpoint of health care, retirement savings,
job tenure, or any of a number of other traditional fringe benefits and
social-contract expectations, the assumptions underlying our
arrangements for helping people with disabilities to enter or retain
work are still overwhelmingly dominated by the vision of a world that
simply no longer exists, a world in which the contractor is rapidly
eclipsing the permanent employee. Until efforts are made to address the
question of whether and how the assets traditionally associated with
employment can be replaced, it will continue to be difficult to deal
effectively with the employment situation for this segment of our
population.

Asset Development

Perhaps nothing is so deeply ingrained in the American psyche as the
belief that with hard work anything is possible. Part and parcel of that
belief, and lying at the core of our job development strategy for
individuals with disabilities, is the notion that careers begun with
entry-level work can progress to great heights.

Yet there is mounting reason to fear that, inspiring individual success
stories notwithstanding, the historic link between entry-level
employment and upward mobility may be broken. Largely on the basis of
our belief in this connection, as mediated by the drive and ability of
the individual, our policies have been predicated on the juxtaposition
of dependency and work. Demonstrated ability to work has led to the
reduction and elimination of benefits. The rate of reduction has been
steep (hence the term "benefit cliff").[^94] The rate of benefit decline
greatly exceeded the rate of replacement through earnings, savings,
benefits, and investments. But that was all right because, in time,
upward mobility made up for the difference.

Strategies and solutions must be sought through vigorous debate and
deliberation. Among the issues and questions that should be addressed
are the following: What does it mean for disability employment policy if
entry-level work no longer leads to upward mobility, if wages no longer
carry the same prospects as they did in previous generations? What does
it mean for the ways in which people will ever achieve self-sufficiency?
What does it bode for the relationship between wages and benefits? What
role should intensive, lifelong education and training play in the VR
arena?

Related Entities

Part of the problem with employment policies is the sheer range and
number of agencies, programs, and nongovernmental entities involved.
This problematic complexity is all the more the case regarding programs
for people with disabilities, because employment policies for this
sector involve not merely mainstream employment programs but also,
potentially, a number of specialized programs. Sorting out who should be
involved in any reform or systemic experiments, and devising mechanisms
for coordinating their actions, timing, and decisionmaking, may present
more severe problems than conceptualizing the experiments. As noted by
NCD, no mechanisms currently exist for costing or assessing proposed
models, or for carrying principles of accountability beyond three- to
five-year timelines.

As demonstrated by the issue briefs accompanying NCD's forthcoming
employment report, the problem is further compounded by the intimate
connections between employment and education, housing and
transportation.

Segmentation of the Population

Any attempt to discuss the workforce of people with disabilities is
doomed to imprecision, because the circumstances and characteristics of
people making up this population are so diverse. Policies need to be
responsive to these differences. Approaches that would help young people
establish themselves when transitioning from school to work are not the
same as those that will prove efficacious in enabling senior employees
who have been out of work after the onset of a disability to return to
productive positions.

NCD has noted that the work opportunity tax credit[^95] could be more
effective if it included a provision to provide incentives not merely to
new hires but also to certain employees returning to work following long
periods of disability leave, especially when returning to different
departments or positions or under probationary arrangements. Such
rehires, particularly of workers who have begun receiving Social
Security Disability Insurance (SSDI) benefits, potentially could be
enhanced by provisions that would subsidize employers for providing
health insurance to returning workers, such as those included in the
Medicare Modernization Act of 2003.[^96] Such provisions might well
yield savings to the SSDI trust fund, as well as increased return to
employment. But such provisions would play little role in bringing new
workers into the labor force.

As will be elaborated in our discussion of experiments and demonstration
projects below, the importance of a nuanced approach that tailors the
strategy to the specific subgroups of workers sought as employees cannot
be overstated. Through the Workforce Investment Boards established under
the WIA and through other means, public policy has begun to recognize
the necessity of involving employers in the job training and VR and
placement processes at every point. That demand-side awareness has been
accompanied by a supply-side emphasis that too often has focused only on
the nature of the disability. Additional attention should be given to
the available policy levers based on experience, age, established
relationships, and other demographic and organizational factors.

Against the backdrop of the six major issues discussed in this
subsection, this chapter next turns to the immediate contexts in which
these issues are being discussed and debated, and to the immediate
opportunities for experimentation and change.

[]{#__RefHeading___Toc181717839 .anchor}Work Incentives

The Problem

Perhaps no element of the employment dilemma has received more attention
than that of work incentives, or as they are more aptly called, work
disincentives. These are embodied in such benefit programs as
Supplemental Security Income (SSI) and SSDI. From the first enactment of
the SSDI Trial Work Period provision in 1980 to the Ticket to Work and
Work Incentives Improvement Act of 1999 as amended, to myriad regulatory
tweaking and experiments (including most recently in 2006 the renaming
of a major protection and advocacy program to emphasize its focus on
Work Incentives Planning and Assistance),[^97] the effort to reduce the
destructive impact of work incentives has been ongoing. But alas, by all
evidence, it has been largely unsuccessful.

There are three relatively undisputed problems with all our work
incentives (or to put it more precisely, with all our anti-disincentive
provisions). These are as follows:

-   Their complexity and uncertainty, exacerbated by the lack of
    sufficient expertise in benefits counseling and advisement, by the
    lack of certainty or predictability in how they will be applied by
    different agencies or programs to varying individual fact patterns,
    and by the highly technical requirements surrounding compliance and
    the avoidance of penalties.

-   Their failure, even when properly used and fully understood, to meet
    the subsistence needs of beneficiaries. This failure is exemplified
    by low rates of utilization (fewer than 3,000 people are currently
    operating under a plan for achieving self-support \[PASS\]), by the
    reduction of cash benefits at rates that make the effective rate of
    pay from employment far lower than the minimum wage in many
    instances, by limitations on the amounts and purposes for which
    savings can be sheltered that substantially prevents their use for
    most self-sufficiency goals, and by the lack of coordination with
    non-Social Security assistance programs, which potentially results
    in decreased benefits in such other programs that offset the
    benefits of the work incentives.

-   Their failure, even if they permit the retention of health insurance
    for a number of years after entering work, to include any guarantee
    of the permanence of such coverage if private insurance is not
    obtained, or of the swift reinstitution of coverage if private
    insurance previously obtained is lost.

Current Experiments

Although uncoordinated and not centrally reported or evaluated by common
criteria, a number of experimental efforts have been mounted, and others
proposed, to mitigate the work disincentives problem. In essence, they
all have the same basic premise that graduating the loss of
benefits---so that it occurs less steeply, over more time, and with
better opportunities for reinstatement under specified conditions---will
encourage and enable more people to work. These initiatives include the
established, permanent work incentives under the Social Security Act,
Medicaid buy-in programs, beneficiary counseling and benefits advisement
programs, and the Disability Program Navigator initiative in the
workforce development system, as well as a number of small experimental
programs, including several work incentive demonstrations, most notably
the Youth Transition Demonstration program, operated by the Social
Security Administration.[^98] Perhaps best known among all the attempts
to remove disincentives to work are the health insurance--related
provisions of the Ticket to Work program, which are designed to allow
retention of Medicare or Medicaid benefits for a number of years after
entry into employment. A number of other demonstrations, all based on
variations of the same basic concepts, have been proposed in the past
year.[^99]

At the same time, policy initiatives originating in the poverty and
welfare sectors have had limited impact in the disability sphere. Such
measures as the individual development account, though not
administratively integrated with PASS and not targeted specifically to
people with disabilities (but rather to low-income people, a group that
includes many people with disabilities), have been available to some
labor market entrants or returnees with disabilities.

Although broad conclusions are hard to draw and comparisons among
demonstration programs or program types are difficult to make, the
impression seems inescapable that, thus far, all these programs have
had, and are likely to have, little if any effect. Data on how long
people receive benefits and how many people leave the SSI and SSDI
benefit rolls tell the depressing story. As most recently documented by
the National Disability Institute, those who leave the rolls number in
the single digits.[^100] Given the erosion in the labor market noted
above, it is unlikely that any of the existing approaches to eliminating
work disincentives can have a statistically significant effect on
improving those outcomes.

The Proposed Solution

Public policy never emerges or exists in a vacuum. Proposals, no matter
how sensible or self-evident, are inevitably mediated by politics and
emotion. The analytical framework used by policymakers in evaluating
proposals, the priorities that decisionmakers uphold, and the analytical
methods they employ go a long way toward creating the political and
emotional climate.

As this relates to the universally shared goal of moving people with
disabilities from the benefit rolls and into the competitive workforce,
the current situation argues for a bold initiative that may require an
enormous attitudinal change but that has a high likelihood of yielding
enormous benefits to society, in terms of both increased employment and
reduced public expenditure over the next generation.

In its forthcoming financial incentives report, NCD will recommend total
elimination of work disincentives on an experimental basis for a period
of 5 to 10 years, so that benefits recipients can work, earn, and save
without fear or restriction, and without fear of health insurance or
other benefits loss. Thereafter, so long as employment continued,
benefits would be phased out over a period of time so as to not
undermine the economic value of work.[^101]

Perhaps more important than the recommendations or the proposed
methodology for carrying them out is the economic analysis the study
provides. Using conservative assumptions and established actuarial
methods, the analysis shows that with even modest growth over present
levels in the number of people leaving the benefits rolls, the
experiment will return large financial savings to the taxpayers over the
period of time that beneficiaries otherwise would be expected to remain
on the rolls. Moreover, if implemented as proposed, even the
administrative savings likely to result from eliminating the need to
minutely track beneficiaries' income and expenses on a monthly basis
would substantially offset the increased benefit costs, even if fewer
beneficiaries than expected were enabled to permanently leave the
benefit rolls. Economically and socially, the program is a win-win
proposition. Accordingly, NCD recommends that Congress hold hearings on
the proposals set forth in the financial incentives study report and
that the necessary enabling legislation be enacted.

NCD appreciates that time and further explanation will be required for
these proposals to become clear to all stakeholders and urges all those
interested in this crucial matter to study the findings carefully. NCD
knows that economics alone cannot determine the outcome and that even
those who recognize the economic soundness of the proposal may balk, for
emotional or political reasons, at the idea of allowing people to work,
save, and obtain upward mobility with the help of the public purse. We
can only hope that the powerful economic realities, the intractability
of the problem, the widely accepted need for reform, and the initially
limited nature of the experiment will combine to overcome these
misgivings. Wisely or unwisely, our nation subsidizes many people to do
many things. We do so because we believe it is in the greater interest
of the nation. NCD believes that the evidence will show that few
investments can have a greater and more demonstrable or objective return
than the one here proposed.

[]{#__RefHeading___Toc181717840 .anchor}Employer Education

The proposed solutions in the previous section represent a classic
illustration of supply-side economics, in that they liberate an
unprecedented supply of good workers. By itself, this will do nothing to
relieve employers of the range of fears and misconceptions that surely
have prevented, and may continue to prevent, all too many from taking
full advantage of the productive potential of workers with disabilities.

As discussed in the Work Incentives section above, attention must be
paid to addressing the needs of employers today, not employers of the
1950s. Beyond that, enduring stereotypes and fears remain to be
addressed, in whatever era they present themselves. Numerous outreach
efforts, including several significant ones in the past year[^102] have
endeavored to do just this, but they have suffered from one serious
limitation. By and large, this limitation is related to a lack of full
understanding of why myths, fears, and stereotypes about people with
disabilities continue to persist among employers.[^103] More documentary
evidence is needed about the kinds of employer education and outreach
strategies and experiences that are most effective in enduringly
overcoming these problems and limitations.

For this reason, NCD recommends that the Department of Labor's Office of
Disability Employment Policy (ODEP) undertake a systematic study of all
employer education efforts in recent years. ODEP is urged to
systematically assess which techniques have been most successful.
Correspondingly, this systematic study should obtain employer and
disability community input into which outreach techniques have worked.

[]{#__RefHeading___Toc181717841 .anchor}Federal Government Employment

Among the many statistics on the employment of people with disabilities,
few are as surprising as those of federal employment. The Equal
Employment Opportunity Commission (EEOC) is among those that have noted
and addressed sharp declines, so much so that by 2005 the percentage of
federal employees with significant disabilities, which had peaked in
1994, had slid back to 1984 levels.[^104] Following a meeting in June to
gain the views of a variety of stakeholders regarding the reasons for
this decline,[^105] EEOC launched its Leadership for Employment of
Americans with Disabilities initiative in October.[^106]

Since enactment of the Rehabilitation Act of 1973 it has been understood
as a matter of law, and NCD believes as a matter of consensus, that the
Federal Government should be a leader in the employment of people with
disabilities. Hence, when the overall national decline in employment for
Americans with disabilities is confirmed and compounded by a perhaps
even more precipitous decline in the public sector, this becomes a
matter of great concern. The decline is important for two reasons.
First, it sounds an alarm that must be heeded. Second, although public
and private sector employment differ in many ways, the striking
parallels in the declines may shed light on both, if the federal
situation can be explored and used as a laboratory to investigate causes
and remedies.

The EEOC has undertaken a major education campaign as well as other
steps to remind and assist federal agencies in this area. The Commission
has sought input from a wide range of stakeholders and knowledgeable
parties. NCD believes that additional measures are urgently needed.

A number of federal sources should be able to shed light on potential
causes and solutions. From the published information, it is not clear
whether EEOC specifically consulted each of these sources, or what input
and advice they offered, if consulted. First, the Office of Personnel
Management (OPM) should be asked for any information it may have on job
applicants with disabilities, under both standard entrance pathways and
under the specialized hiring authority available. If such information is
not centrally available, OPM should institute measures to obtain it.

Second, inasmuch as the data reveal a significant attrition rate for
employees with significant disabilities, detailed exit (or in this case
post-exit) interviews with retiring or resigning employees might shed
light on their experience. Numerous channels exist for soliciting
voluntary, nonindividually identifiable input from such former
employees.

Third, to the extent that technology has become a key link in the
accessibility and the performance of all jobs, two key
technology-related resources should be able to evaluate technology's
role in the employment of federal employees with disabilities. The first
of these is the Computer Electronic Accommodations Program (CAP) of the
Department of Defense. This program provides technology-related job
analyses and recommendations for a large number of federal agencies and
their workforces. It seems that CAP's input concerning issues
encountered in this work, including issues bearing on the ability and
willingness of managers to seek and implement technology-based
accommodations, could yield valuable insight into the present situation.

The second key source of information on the intersection between
technology and the federal workforce should be the agencies and
officials with responsibility for implementing and monitoring Section
508 of the Federal Rehabilitation Act.[^107] As discussed in Chapter
Eleven of this year's report, Section 508, if it is working properly,
should enhance the employment, tenure, and mobility of federal employees
with various disabilities, through its information technology
accessibility requirements.

Fourth, a final but indispensable source of information must be the
Department of Justice. The Department's Civil Rights Division (CRD)
should undertake an in-depth review of civil service and civil rights
law with a view toward identifying what, if any, material provisions,
practices, oversight, or enforcement standards have changed since 1994.
Major changes have occurred in the overall government personnel system
over that period of time, and it would be likely for such changes to
have had an unforeseen and unrecognized impact on the recruitment and
retention of workers with disabilities.

Using all of these resources and any others that may have relevant
information to convey, NCD recommends that the EEOC undertake a
comprehensive examination of the issues raised by the disheartening
statistical data and make a report to the President, Congress, and the
public, setting forth major impediments to employment and proposed
solutions to steadily raise levels of employment and monitor upward
mobility. This report should address exempt and nonexempt employees,
temporary and permanent civil service positions, the federal executive
service, and appointive positions subject to Senate confirmation.

[]{#__RefHeading___Toc181717842 .anchor}Other Specialized Programs

Two programs with their origins in the 1930s have been in the news
during 2006, and NCD believes the time may be right for a reappraisal of
these programs in light of changing conditions and needs. A Senate
hearing publicized in the spring of 2006 drew attention to excessive
executive pay and perks among managers of several agencies operating
under the Javits-Wagner-O'Day (JWOD) program.[^108] At the same time,
renewed attention has been directed to the relevance and impact of the
Randolph-Sheppard Vending Facility (RSVF) program.

These programs have been the subject of considerable controversy over
the years. On the one hand, they are not in keeping with the emphasis on
integrated, competitive mainstream employment that has generally defined
policy over the past 30 years. On the other hand, they offer employment,
training, and in some cases entrepreneurial opportunities to people who
might not otherwise have had these opportunities.

NCD is not in a position to express opinions at this time concerning how
or whether these programs should be redesigned. But the Council does
believe that the complexities noted above present an opportunity for a
thorough review of these programs to determine whether they continue to
meet their objectives in a cost-effective manner, whether they provide
employment and business opportunities to people who would not otherwise
be likely to obtain them, and whether they are doing all that is
reasonably possible to maximize the growth and potential of
participants. Accordingly, NCD recommends that a study of the JWOD and
RSVF programs should be undertaken by a congressionally appointed
commission, including representatives of the Department of Education
(within which at least three units are involved), the Committee on
Purchase (AbilityOne), the Department of Labor, and organizations
representing people with disabilities within and outside of the two
programs.

[]{#__RefHeading___Toc181717843 .anchor}Recommendations

***Recommendation 7.1:*** NCD recommends that Congress hold hearings on
the proposals set forth in NCD's financial incentives report and that
the necessary legislation be enacted to facilitate a 10-year
demonstration designed to put Social Security benefit recipients back to
work as they and the nation desire.

***Recommendation 7.2:*** NCD recommends that the Department of Labor's
ODEP undertake a systematic study of all employer education efforts
undertaken in recent years. ODEP is urged to systematically assess which
techniques have been most successful. Correspondingly, this systematic
study should aim to obtain employer and disability community input into
which outreach techniques have worked.

***Recommendation 7.3:*** NCD recommends that the EEOC undertake a
comprehensive examination of the issues raised by the disheartening
federal employment data on people with disabilities and submit a report
to the President, Congress, and the public, setting forth major causes
and proposed solutions to steadily raise levels of employment and
monitor upward mobility.

***Recommendation 7.4:*** NCD recommends that a study of the JWOD and
RSVF programs be undertaken by a congressionally appointed commission,
including representatives of the Department of Education (within which
at least three units are involved), the Committee on Purchase, the
Department of Labor, and organizations representing people with
disabilities within and outside of the two programs.

[]{#refheading___toc181717844 .anchor}Chapter Eight: Welfare Reform

[]{#__RefHeading___Toc181717845 .anchor}Introduction

This chapter discusses the reauthorization of the nation's welfare
reform law, reiterating concerns that NCD has noted before regarding the
status of people with disabilities who remain on the rolls and whose
needs the welfare reform process appears largely unable to meet. Gaps in
services are discussed with a view toward identifying strategies that
could increase the ability of many of these people to find and retain
employment.

The chapter considers several issues in the administration of Temporary
Assistance to Needy Families (TANF) and related programs that pose
issues for accessibility and participation by people with disabilities.

The chapter then raises concerns relating to the relative lack of asset
development strategies in the law. Fear is expressed that shrinking the
welfare rolls has been the easy part of what needs to be a two-part
effort to assist former beneficiaries, including those with disabilities
who face barriers to the establishment of conventional career paths, in
securing better and more stable circumstances. Asset development
represents the increasingly indispensable companion to job placement. A
study into the status and well-being of former recipients with
disabilities is recommended to clarify the role that asset development
might play.

Finally, the chapter endorses financial education and financial literacy
as elements that should be included in the TANF program, noting the
importance of accessibility and culturally sensitive outreach if these
resources are to be effective in achieving their intended goals.

[]{#__RefHeading___Toc181717846 .anchor}The Law

In early 2006, as part of the Deficit Reduction Act, the Personal
Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA),
our nation's welfare reform law, was reauthorized.[^109] Before
reauthorization, during several short-term, temporary extensions, debate
had focused on the nature of work requirements that states would have to
meet. Some argued for greater flexibility in the range of activities
that would count toward these work requirements, whereas others argued
for stricter definitions and for an increase in the mandatory number of
work hours required per week of each program participant.

Ironically, it was states' success in cutting their welfare rolls that
gave rise to some of the most heated debate. Under the original law,
states that succeeded in cutting the number of beneficiaries by more
than 50 percent were allowed greater flexibility in meeting and defining
work requirements for their remaining beneficiaries. Many states were so
successful in meeting these numerical goals that they were left free to
impose minimal work requirements on those who remained on the welfare
rolls.

NCD has been able to locate no data on the proportion of people leaving
the welfare rolls who were people with disabilities or parents of minor
children with disabilities. Nor is it known whether the proportion of
recipients with disabilities leaving the rolls is comparable to that of
recipients without disabilities. What is clear, as reported in NCD's
progress reports over the past two years, is that those remaining on the
rolls include a significant percentage of people with disabilities.

In our recent progress reports and in other position papers and
testimony, NCD has expressed concern that work requirements need to be
defined broadly enough to include the kinds of specialized training that
many recipients with disabilities need to enter the labor market with
any hope of job acquisition or job stability. Regrettably, the changes
made in work requirements by the reauthorization do not reflect a full
appreciation of these concerns. For example, in extending the work
requirements to the parents or guardians of children who are
beneficiaries, the law does not consider the specialized childcare needs
that many of these children with disabilities are likely to face.
Likewise, in making no allowances for specialized training or for
creating and strengthening mandatory links between welfare, vocational
rehabilitation (VR), and benefits counseling programs, the new law
continues to operate largely on a vision of all welfare recipients as
people who need to be forced to work and monitored while they work. NCD
believes that most recipients with disabilities would welcome the
opportunity to work and could do so if given the specialized assistance
and supports of training, child care, transportation assistance, and
assistive technology (AT) that they need.

NCD is not aware whether final rules implementing the PRWORA
reauthorization had been published by the end of 2006, but the interim
final rule, released on June 28, 2006, appears to contain no
enhancements to the previous, inadequate provisions bearing upon these
needs. NCD is disappointed that the new law does not address the
concerns or suggestions that the Council has made. NCD believes that if
requirements for better coordination with the VR system and Social
Security programs, for evaluation of possible disability and
disability-related training needs, and for the greater availability of
accessible transportation, specialized child care, AT, health insurance,
and reasonable accommodations in employment had been added to the law,
the number of people who could permanently leave the welfare rolls for
self-sufficiency through employment would prove far greater than may
prove to be the case under the current provisions.

NCD continues to hope that improvements can be made, and the Council
renews its offer to work with the Administration for Children and
Families, the Office of Family Assistance, and other components of the
Department of Health and Human Services (HHS) in an effort to devise an
appropriate and coordinated approach.

To achieve the necessary coordination and continuity in services, NCD
recommends that the Secretary of HHS convene an interagency committee
designed to comprehensively identify the barriers to work faced by
welfare recipients with disabilities and tasked with developing
solutions for these problems that will enable these people to leave the
rolls for gainful employment within the legally allowable time.

[]{#__RefHeading___Toc181717847 .anchor}Problems in Program
Administration

NCD remains concerned with some of the methods reportedly used by states
and localities to administer TANF, the Food Stamp program, and other
programs. Some of these methods may inadvertently but seriously
interfere with the ability of people with disabilities to participate in
and benefit from these programs.

From the provision of services in inaccessible buildings (including
those in locations not served by public transit) and print-only
application and reporting forms or non-sign-language-interpreted
personal interviews, to program identification cards that are
inaccessible to or unusable by people with visual or cognitive
disabilities, numerous practices appear to exist that pose barriers to
program participation by people with various disabilities. NCD accepts
that most of these barriers are quite unintentional, but their effects
can be as harmful as if they were deliberate.

NCD is concerned by the failure of the reauthorization or of the draft
implementing regulations to include provisions requiring accessibility
in the design and administration of the federally funded welfare and
related programs at state and local levels. To document the extent of
these problems and create awareness of the need for greater care in
program administration, NCD recommends that the Secretary of HHS
commission a survey of present and former welfare recipients with
disabilities to identify the nature and extent of exclusion from
benefits, from job training programs, and from other opportunities and
resources resulting from inaccessibility in the design or operation of
programs, policies, and procedures or in the selection of activity
locations.

[]{#__RefHeading___Toc181717848 .anchor}Asset Development

Asset development, designed to help people translate their income into
access to financial and tangible assets, represents a critical component
of any effort to improve the economic well-being of many people with
disabilities, as well as all welfare recipients with and without
disabilities. For this reason, one of the features of PRWORA that NCD
most strongly endorsed was its provisions dealing with individual
development accounts (IDAs).[^110] IDAs constitute one of the major
asset development strategies currently in use for low-income people.
They allow benefits recipients to save money that would ordinarily
exceed program income or resource limitations, provide for matching
funds that leverage the value of money saved from earnings, and target
accrued funds for certain asset-related purposes. NCD hoped that this
part of the welfare reform program would be enhanced by the
reauthorizing legislation. In this preference, NCD seeks to look beyond
the possibility of entry-level employment to the broader and longer-term
question of how economic self-sufficiency and upward mobility are to be
achieved. Reductions in welfare caseloads alone, while desirable, cannot
define the success of welfare reform. It is what happens to the former
recipients afterward with which we must ultimately be concerned.

Unfortunately, the TANF reauthorization does not deal with serious
problems previously noted by the Council in the design of the TANF IDA
program. Among permissible target expenditures for TANF accumulations,
three items are recognized: education, homeownership, and small business
startup or growth. These are all highly laudable items, but they fail to
recognize several considerations. For example, for many people with
disabilities, acquisition of AT may be a prerequisite to any gainful
work, whether of the employed or self-employed variety, or home
modifications may be a prerequisite to homeownership. It is not clear
why a capital asset, such as an accessible motor vehicle (like a van
with a wheelchair lift), should be a proper IDA goal when used for
self-employment but not when intended for use to travel to and from a
paying job.

NCD recommends that the rules governing all IDA programs, including
those operating under the TANF program and those established under the
assets to financial independence (AFI) program, be revised (1) to
eliminate the distinctions between small business and employment as they
relate to capital assets needed by people with disabilities to work and
(2) to recognize, through flexibility in asset limits, that
accessibility often raises the cost of homeownership.

[]{#__RefHeading___Toc181717849 .anchor}Financial Education

Financial education has been an integral element of many IDA and other
asset development programs. NCD regards these financial education
programs as vitally important, but cautions that for people with
disabilities program accessibility is crucial to their success.

In this connection, NCD commends the Federal Deposit Insurance
Corporation (FDIC) for its efforts to adapt its Money Smart financial
literacy curriculum for use by people who are blind. FDIC has made the
program available in Braille, and has taken steps, such as the addition
of textual material to explain charts, to make the material more
accessible to users with visual impairments.

NCD also congratulates the Internal Revenue Service's Wage and
Investment Division's Stakeholder Partnerships, Education, and
Communication (SPEC) program for its sustained efforts to incorporate
access to financial education into the work of its Volunteer Income Tax
Assistance sites around the country.

In the waning days of the 109th Congress, Senator Akaka of Hawaii
introduced the TANF Economic and Financial Education Promotion Act of
2006.[^111] This legislation would require states to provide economic
and financial education to parents and certain other individuals in the
program, and would provide that such training count toward fulfillment
of the beneficiaries' work requirement. While taking no position on the
particular legislation, NCD recommends that HHS take all possible
measures to incorporate financial education and financial literacy
training into the TANF program and that this be done in ways that ensure
full participation to recipients with disabilities.

[]{#__RefHeading___Toc181717850 .anchor}Recommendations

***Recommendation 8.1:*** NCD recommends that the Secretary of HHS
convene an interagency committee designed to comprehensively identify
the barriers to work faced by welfare recipients with disabilities and
tasked with developing solutions for these problems that will enable
these people to leave the rolls for gainful employment within the
legally allowable time.

***Recommendation 8.2:*** NCD recommends that the Secretary of HHS
commission a survey of present and former welfare recipients with
disabilities to identify the nature and extent of exclusion from
benefits, from job training programs, and from other opportunities and
resources resulting from inaccessibility in the design or operation of
programs, policies, and procedures or in the selection of activity
locations.

***Recommendation 8.3:*** NCD recommends that the rules governing all
IDA programs, including those operating under the TANF program and those
established under the AFI program, be revised (1) to eliminate the
distinctions between small business and employment as they relate to
capital assets needed by people with disabilities to work and (2) to
recognize, through flexibility in asset limits, that accessibility often
raises the cost of homeownership.

***Recommendation 8.4:*** NCD recommends that HHS take all possible
measures to incorporate financial education and financial literacy
training into the TANF program and that this be done in ways that ensure
full participation to recipients with disabilities.

[]{#refheading___toc181717851 .anchor}Chapter Nine: Housing

[]{#__RefHeading___Toc181717852 .anchor}Introduction

This chapter addresses issues relating to the supply, affordability, and
accessibility of housing for people with disabilities, including people
seeking to remain in or return to the community in this era of
deinstitutionalization. The chapter seeks to draw out the commonalities
and the differences in the issues facing people with disabilities and
issues facing all Americans, particularly people of limited means, in
the current housing environment. The chapter addresses these issues in
light of the turbulence that has affected the housing market since our
last report.

The chapter opens with a discussion of affordable housing, analyzing the
role of the low-income housing tax credit and the various housing
voucher subsidy programs in the affordability equation. The chapter next
turns to civil rights, examining the adequacy of procedures to monitor
previously achieved civil rights settlements, and the nature of current
reasonable accommodations enforcement litigation in the housing area.
The Civil Rights section concludes with a discussion of the application
of the newly enacted Money Follows the Person (MFP) provisions of the
Medicaid law to housing as an integrally related community resource.

In light of our nation's efforts to mobilize tax law and other
incentives on behalf of environmental-protection and energy-conservation
goals, the chapter next explores whether any of the strategies used
might be applied to the goals of housing accessibility.

The chapter considers the connections that current policy requires to be
forged among housing, transportation, and health policy, discussing ways
that housing and transportation planning have been brought together and
identifying tools that are needed to make such collaborations and joint
planning processes more effective.

In its last section, the chapter returns to the familiar theme of
barriers to homeownership facing Americans with disabilities. In light
of the sober realizations that in the past year have undermined many of
our assumptions about how homeownership programs are working for all
Americans, the section proposes some new approaches, including tax-based
and asset-accumulation strategies, to increase homeownership for
Americans with disabilities.

[]{#__RefHeading___Toc181717853 .anchor}Affordable Housing

One area of likely congressional activity in the 110th Congress is that
of housing affordability. From several standpoints, the growing
unaffordability of housing has emerged as a national crisis. Housing has
become more of an issue and now consumes more time and financial
resources of average Americans than ever before. This is manifest in
many ways, including the growing inability of public employees or
private sector support workers to find housing in the municipalities in
which they work (and whose infrastructures they often service); the
increasing distances Americans must travel between their place of work
and locales where they can find affordable housing; and the predatory
lending practices that have blossomed as people resorted to ever-more
desperate measures in their efforts to fulfill the American dream of
homeownership.

It is likely, as the problems worsen, become more widely known, and more
complex, that the Administration and Congress will redouble their
efforts to provide effective solutions. What is of great concern to NCD
in this connection is that accessibility, which the Council believes to
be an essential component of affordability for Americans with
disabilities, not be overlooked in the discussion and not be shunted to
the side in the urge for a swift response.

Few areas of public policy involve as many different programs, funding
streams, and rules as housing. A review of how accessibility and
affordability intersect in the design of these programs goes well beyond
the scope of this status report. Nevertheless, a few illustrations of
what could be done should suffice to remind policymakers of the
importance of accessibility and to suggest feasible and fiscally
responsible ways in which accessibility can be taken into account---and
in doing so, far from delaying this result, actually can contribute to
the affordability of housing for all.

The Low-Income Housing Tax Credit

The Low-Income Housing Tax Credit (LIHTC)[^112] is an important
provision of the Internal Revenue Code (IRC), and one of the most
prominent examples of what is known as targeted tax expenditure, meaning
the creation of market-based tax incentives to encourage private sector
entities or private individuals to engage in activities that are deemed
to advance public policy goals.

The LIHTC allows states to provide tax credits to those who build and
operate rental housing. Many requirements must be met to qualify for the
credit, but unlike other tax provisions, credits are awarded in
specified amounts before developers raise or spend money for the
projects.

One recent estimate indicates that up to 50 percent of rental units
built in this country may receive financial help through the
LIHTC.[^113] Controversy surrounds this and other features of the LIHTC.
To some, its major role is proof of the need for it; to others, it
reduces the rental housing supply by supplanting private sector
investment. NCD has no basis for entering into such debates, but the
Council does believe that the credit could and should be far more
effective in stimulating the building of accessible housing.

Nothing in the current law prevents states from using their LIHTC
allocations to stimulate the production of accessible, rental housing.
Indeed, at least two states are reported to have done exactly this, one
by creating preferences for projects that incorporate accessibility, and
one by requiring the inclusion of accessibility in approved plans.

NCD recommends that Congress amend the LIHTC and other related
provisions of the IRC to require that all housing receiving tax credits
or that all housing otherwise subsidized under the tax system through
the use of tax-favored public activity bonds be required to comply with
the same accessibility standards currently applicable under federal
civil rights laws to housing built or supported through direct federal
subsidies.

No credible basis exists for believing that such a requirement would
materially increase the cost of new housing or significantly reduce its
supply. To the contrary, so far as cost is concerned, it is likely that
accessibility requirements would result in substantial net savings to
the public, and to the private developers, over reasonably foreseeable
time frames. Because the housing was financed with LIHTC funds, once it
is built, it is not exempt from fair housing laws. By incorporating
accessibility from the outset, developers and investors avoid the risk
of costly retrofitting or damage awards arising from inaccessibility.

Housing Voucher Programs

Under Section 8, the Federal Government operates a number of targeted
voucher programs that subsidize rents for specified groups of people, in
either private or public housing. Vouchers also play a role in some
homeownership initiatives.

While the subtypes of Section 8 programs are complex, they do have
certain important features in common. They are all available for use on
behalf of individuals with disabilities, either because people with
disabilities are found among other eligible or targeted groups such as
older people or people with low incomes, or because the vouchers
specifically target people with disabilities. Among the programs that
target people with disabilities, there also are variations in terms of
how and how much the targeting is specified to be done, whether a
percentage of vouchers or a percentage of dollars can or must be used
for people with disabilities, and related matters.

Advocates have long been concerned that the Department of Housing and
Urban Development (HUD) may lack adequate means to track the actual use
of the vouchers it issues. Hence, HUD may not be in a position to ensure
that vouchers are being used on behalf of people with disabilities to
the extent contemplated in enabling legislation and appropriations
bills.

Accordingly, NCD recommends that HUD undertake a comprehensive review of
all existing voucher and other direct financial assistance programs,
whether for construction and renovation, rental assistance, or
homeownership enhancement. This review should comprehensively identify
the potential of these programs to specifically address the housing
needs of people with disabilities, determine the extent to which the
Department currently is able to monitor the effectiveness of their use
for this intended purpose, and create improved means to ensure that
funds and authorizations targeted to housing for people with
disabilities will be used fully and effectively for that purpose.

A related issue is that of accessibility. Because housing built with
federal financial assistance is subject to the accessibility
requirements of Section 504, the Fair Housing Act, and the Americans
with Disabilities Act (ADA), whether such housing is built specifically
for people with disabilities or not, there no longer can be any
justification for federal housing assistance to be used in ways that do
not support accessibility. No construction or renovation, rent
subsidization, or homeownership encouragement should take place with
federal funds around property that is not accessible within the meaning
of the law.

In this light, it would be useful for HUD to review the entire range of
its existing subsidy and direct financial assistance programs to verify
that accessibility requirements are fully incorporated into the
governing regulations for each, and to ensure that adequate means exist
for monitoring compliance with these requirements and for acting on
complaints of violation.

Once again, any short-term cost increases will be quickly offset by
verifiable and demonstrable savings. Even within the Section 8 program
itself, heightened accessibility will result in a greater availability
of appropriate units for individuals with disabilities, and this should
translate into a lower cost to the subsidy programs for meeting the
housing needs of these individuals. Likewise, pressure on local public
housing agencies should be reduced over time, with positive results for
their financial picture as well.

NCD notes that accessibility is not a mysterious or complicated concept,
whether discussed in terms of the requirements applicable to a
particular house or apartment or in terms of the percentage of units in
a given development to which accessibility requirements apply. Indeed,
in some of the HUD civil rights enforcement actions discussed in the
next section, the clarity and stability of the applicable design
guidelines go far in explaining why vindication of these key values was
so readily possible and so highly necessary.

[]{#__RefHeading___Toc181717854 .anchor}Civil Rights

Voluntary Compliance Agreements

In last year's progress report, NCD commended HUD for its work in
entering into voluntary compliance agreements (VCAs) with public housing
agencies around the country. Through these agreements, it was possible
for the Federal Government and local agencies to work cooperatively in
the identification and resolution of civil rights compliance issues and
to avoid costly and time-consuming litigation.

NCD believes that while such agreements serve many objectives, their
ultimate value depends on their long-term implementation and on their
effect on housing agency practices. For this reason, NCD remains
concerned about whether and how HUD plans to monitor implementation of
VCAs over time to ensure their continuing effectiveness.

NCD recommends that HUD include in its standard auditing practices
randomized and unannounced annual reviews of public housing authority
(PHA) compliance with VCAs. These reviews should identify instances in
which implementation may have lapsed and motivate PHAs to maintain the
high standards contemplated in the agreements.

To the degree that HUD has entered into judicial consent decrees in
settlement of cases involving PHAs or other entities, NCD recommends
that these be audited on a regular basis to ensure full compliance.

Reasonable Accommodations

A number of important enforcement actions were launched by HUD during
2006. Several of these hold out the potential for important
clarifications and extension of civil rights protections under the
law.[^114] Once again, it is critical for HUD to develop means for
ensuring the successful execution of the outcomes decreed and agreed to
in these cases. Reliance upon complainants, complainants' counsel, or
third parties to monitor implementation is insufficient.

It would help if HUD would develop case-finding policies on an annual
basis, utilizing the kinds of complaints filed during the preceding year
and the kinds of settlements reached as primary sources of input on the
issues to be emphasized. NCD recommends that HUD create an advisory
panel composed of fair housing advocates and people with disabilities to
advise it on key emerging issues in the fair housing arena.

Money Follows the Person

In Chapter Four, Health Care, and Chapter Five, Long-Term Services and
Supports, one of the most important developments of 2006 was
discussed---the MFP provision. As an innovation in the Medicaid program,
MFP is thought of mainly in terms of its effects on the provision of
health care in general, and home-based, personal-assistance, and
attendant services in particular. On one level this is true, but the
fundamental point to remember about MFP, in both its technical and
philosophical senses, is that without integration of housing policy and
resources into its planning and implementation, MFP will have little
impact or potential to meet its goals.

To understand the ways in which housing policy fits into the MFP
framework, it may be useful to look back on the implementation by states
of the U.S. Supreme Court's *Olmstead* decisions over the past seven
years. In the aftermath of *Olmstead*, which is the legal basis for the
use of the ADA to free people from unnecessary institutionalization and
to assist them in remaining in or returning to their homes and
communities, states were required to develop *Olmstead* plans. Without
provisions for making housing accessible and available, for linking the
timing of its availability with the timing of release from institutions,
and for coordinating funding sources, it was clear that the desire to
live in the community would have relatively little meaning. This
experience with *Olmstead* should serve as an important precedent for
MFP.

NCD is not in a position to comment on the applications submitted by
states for MFP funds. As such, the precise means used to achieve
coordinated housing and health care policies by each successful
applicant are not yet known. In its July 26, 2006, announcement of the
first round (2007) of MFP demonstration grants to states, the Centers
for Medicare and Medicaid Services (CMS) indicated that extra points
would be awarded for plans that included housing. As CMS put it, "the
advancement of home and community-based long-term-care services requires
increased community housing options."[^115]

NCD expects that, because of the indispensability of housing in any
effort to meet MFP's goal of rebalancing the distribution of resources
between institutional and home and community-based services, successful
applications included housing. But beyond the award of extra points, NCD
believes that CMS, in its administration of MFP funds, needs to go
further. Accordingly, NCD recommends that in subsequent rounds of MFP
demonstration funding, CMS, as the funding agency, require all
applications to include detailed information on how adequate housing
options will be identified and modified, where necessary, and how they
will be funded.

[]{#__RefHeading___Toc181717855 .anchor}Energy and Transportation

The Energy Precedent

In recent progress reports, NCD has offered a number of proposals to
increase the proportion of America's housing stock that is accessible.
Believing that widespread accessibility is necessary if the housing
barriers facing America's citizens with disabilities are to be
successfully addressed, NCD has long regarded this goal as key. NCD's
recommendations, which are reiterated here, include making a home's
accessibility status a mandatory disclosure item under the Real Estate
Settlement Procedures Act; requiring accessibility or at least
"visitability" in all newly constructed or substantially renovated
residential properties; and incorporating other measures. Several
efforts undertaken in recent years to reduce energy utilization in
American homes suggest powerful precedents for use on behalf of
accessibility.

A significant contribution of direct and tax expenditure has been used
to encourage homeowners to make their property more energy efficient.
Among these are tax credits for certain home modifications designed to
conserve energy, state and local-level building code changes that favor
less use of energy resources, and a number of other resources and
incentives on behalf of the economic, environmental, and health benefits
of energy conservation and environmental cleanup. The benefits to
society of increased home accessibility are also great. If the measures
just noted, as well as others not mentioned here, can effectively reduce
America's use of fossil fuels, NCD wonders whether they might not be
equally valuable in reducing the waste of economic and human resources
that exclusion arising from inaccessibility continues to cause.

Some of the techniques, such as tax credits and planning priorities,
currently brought to bear on behalf of environmental consciousness will
prove applicable in this field, while others will prove less relevant.
NCD recommends that Congress instruct HUD to conduct a detailed study of
whether and how each of the incentives and strategies currently used to
encourage the creation of a greener nation could be adapted for use in
creating a more accessible nation as well.

Transportation

As policymakers struggle to come to terms with the new relationship
between housing and the health care system, they must simultaneously
address housing's increasingly pivotal connection to transportation.
Again, the deinstitutionalization movement offers the best window into
this relationship. If people are trapped in their homes, whether those
homes are their own homes in the community or institutions and
congregate care settings, the promise of *Olmstead* and MFP becomes
illusory. This is why NCD has observed that, from a practical
standpoint, the inability to drive may be among the most serious
disabilities in America today, interfering as it does with almost every
major life activity, including getting an education, going to work,
obtaining health care, and participating in social, community,
religious, and family life.

How we go about linking housing and transportation policy and resources
constitutes one of the key questions for the organization of our society
in the first half of the twenty-first century. As it relates to people
with disabilities, this effort begins with the inclusion of housing and
transportation agencies in the *Olmstead* planning process. The
awareness is also reflected in New Freedom Initiative programs pursued
under the Human Services Transportation Coordination umbrella. NCD
appreciates the incentives that have been put in place to encourage and
support coordinated cross-program and cross-agency planning, but the
Council is concerned about the relative lack of data regarding the
impact of these efforts. There is also an apparent lack of data
concerning the effects of such joint-planning processes on the quality,
availability, and cost of housing or transportation.

NCD believes that methods to establish accountability and document
evidence-based outcomes present new and unique issues when applied to
multiagency programs and cross-agency planning processes. Accountability
tools do not yet exist for outcomes and programs that are the joint
responsibility of numerous and separate agencies and programs. In
circumstances in which no one agency, no one program, and no one
preordained outcome is at issue, as in the interconnected development of
transportation and housing policy on behalf of a better quality of life
for people with disabilities, what evaluative measures can be applied
that provide meaningful data for policymakers or that highlight needed
improvements? What apparently has been accomplished so far is the
creation of settings in which agencies interact and then create reports
that display the efforts of each participating service system side by
side. But we have yet to develop organic planning processes that hold
one system accountable for the effects of its decisions on the other, or
that provide reliable means that go beyond merely signing off on
anticipated effects and instead ensure that they are taken fully
onboard. Today, no planning process or budget strategy exists for
rewarding a transit system that targets service to areas where
high-density housing could be built more cheaply. Likewise, no
mechanisms exist for rewarding those who choose to build housing in
areas that can more conveniently or less expensively be served by public
transit compared with other areas that, from the construction costs
standpoint, are no more expensive to choose.

The interests of people with disabilities and of America's senior
citizens are drawing closer together. It may be time to recognize that
the interests of these two groups are converging with the interests of
environmental health and energy conservation to form a new triumvirate.

As a starting point in addressing these issues, NCD recommends that the
Office of Management and Budget (OMB), the Congressional Budget Office
(CBO), and the Government Accounting Standards Board (GASB) form a joint
commission to study and develop a means for "scoring" (that is, for
analyzing the cost and benefit implications of) multiagency and
cross-program initiatives and planning efforts. Absent concerted
thinking and work in this evolving area of policy, well-intentioned
government efforts are more likely to operate at cross-purposes than to
combine to contribute to a desired outcome.

[]{#__RefHeading___Toc181717856 .anchor}Homeownership

In a number of reports, including recent annual progress reports, NCD
has lamented the ownership gap facing Americans with disabilities. As
discussed in detail in NCD's 2003--04 progress report, while our leaders
rightly proclaim pride in record high homeownership levels, rates of
homeownership among people with disabilities have remained far lower.
Moreover, though homeownership rates had been rising across the board
for most cultural, ethnic, and economic groups, they had not risen
appreciably for Americans with disabilities.

The Subprime Crisis

NCD has reviewed many obvious and some potential causes for the subprime
crisis and has urged policymakers to analyze and address the subject.
But since our last report, the sanguine picture of homeownership in
America has altered dramatically. Whereas until recently the upward
curve of homeownership was perceived to have no sinister components, the
recent subprime mortgage crisis has alerted us to some of the financial
stresses and to many of the predatory lending practices that have
contributed to the apparently steady rise in the homeownership rate.

What the subprime fiasco has already made clear is that the arrangements
for bringing the American dream to working people and others of moderate
income have not been satisfactory. Before the upheavals in the real
estate market are over, new creditworthiness standards will be
established, new disclosure requirements will be made, and other
fundamental changes will take place in the way Americans buy and sell
homes. What better occasion than the redesign of the system to take into
account all those who are excluded? How should credit-reporting
practices or creditworthiness standards treat Supplemental Security
Income (SSI) or Social Security Disability Insurance benefits? What
procedures should be required to ensure that existing disclosure
standards are met for buyers or sellers with sensory or cognitive
disabilities? These are but a few of the questions that naturally emerge
in anything approaching a thorough effort to figure out how
homeownership in America can be a reliable and meaningful option for
all.

Asset Accumulation

Individual Development Accounts

Whether the review of lending practices is undertaken inclusively or
not, the problem of how to amass a down payment will continue to
represent an enormous barrier for people who rely on needs-based or
means-tested social programs for any part of their income or health
care. Even vehicles such as the individual development account (IDA)
that allow the sheltering of resources for approved purposes, including
home purchase, limit the amount of such accumulation, currently
\$10,000---far too little to meet down-payment needs in the current
market, or in any market setting in which deceptively low teaser
promotions are to be avoided.

Accordingly, NCD believes current limitations on the amounts of earnings
that can be saved for homeownership, and limits on the time period
within which savings can be built up, are too restrictive to allow for
achievement of the goal of homeownership by most IDA participants.
Therefore, in the forthcoming reauthorization of IDA legislation, NCD
recommends that Congress provide that, if the sums in question are
actually and strictly used for home-buying purposes, limitations on the
amounts that can be aggregated for first-time home purchase through IDAs
be eliminated and that limitations on the time frames in which funds can
be saved also be eliminated.

Plans for Achieving Self-Support

For people with disabilities, IDA is not yet a common self-help vehicle.
Far more common for people with disabilities, particularly low-income
individuals receiving SSI, are a number of work-incentive provisions
including the plan for achieving self-support (PASS).

PASS, unlike IDA, is designed to permit the accumulation of assets for
self-sufficiency-related activities, including the purchase of
work-related assistive technology, training and education, and related
costs. All are subject to Social Security Administration approval and to
fairly rigorous accounting and tracking, but homeownership is not
included.

While recognizing that homeownership is not readily possible without
employment or some other regular source of income, the Council also
recognizes that for people who do obtain employment the lack of a down
payment often represents a significant barrier. If people utilizing any
of the existing work incentives were allowed, as an adjunct to these, to
maintain and build homeownership accounts, the down-payment barrier
could be overcome in responsible and prudent ways by many people.

For this reason, NCD recommends that Congress authorize the creation of
a homeownership accounts demonstration, modeled on PASS, for SSI
recipients and for people with disabilities receiving cash or in-kind
benefits under other needs-based and asset-limited federal and state
programs. For those individuals eligible to participate in both IDA and
PASS programs, NCD recommends that Congress establish mechanisms for
pooling the resources of the two account types to obtain maximum
leverage and benefit.

In any consideration of homeownership and people with disabilities,
another fundamental anomaly has to be considered. When people who
already own their own homes become eligible for needs-based assistance
because of changes in life circumstances or increased need, means
ordinarily exist for the retention of their homes, or at least of the
right to live in them. Yet for people who become benefits recipients
before reaching this position, the possibilities are substantially
foreclosed. In this light, it is especially important to create ways for
all benefits recipients to have the same life opportunities, especially
people who are willing and eager to work and save in order to make their
dream a reality.

Tax Considerations

Few areas of daily life are more powerfully or more visibly influenced
by tax law than homeownership. But the tax law operates in complex ways,
ways that advantage some homebuyers but disadvantage and exclude others.
People who can already afford a down payment receive the benefit of
mortgage interest deductibility, whereas those who cannot afford the
costs of entry receive no assistance in getting over the threshold. For
people with disabilities, low income coupled with the implications of
needs-based programs (including those that provide otherwise unavailable
health insurance) may present all but insurmountable difficulties. If it
is the goal of the tax system to reward those who already own homes,
then little can be done about this problem through the tax law. But if
it is the goal of tax policy to encourage and broaden homeownership,
then potentially a great deal can be done.

Among the range of well-recognized principles of tax law and
administration, a number of alternatives seem well-suited to this
objective. They include extending the LIHTC, allowing carryover as a
means to generate capital for down payment, and providing advance
deductibility for mortgage interest. NCD recommends that HUD and the
Internal Revenue Service establish a joint commission to study the
various methods and report to Congress within one year on the
homeownership potential and federal revenue implications of each.

[]{#__RefHeading___Toc181717857 .anchor}Recommendations

***Recommendation 9.1:*** NCD recommends that Congress amend the LIHTC
and other provisions of the IRC to require that all housing receiving
tax credits, or all housing otherwise subsidized under the tax system
through the use of tax-favored public activity bonds, be required to
comply with the same accessibility standards currently applicable under
federal civil rights laws to housing built or supported through direct
federal subsidies.

***Recommendation 9.2:*** NCD recommends that HUD undertake a
comprehensive review of all existing voucher and other direct financial
assistance programs, whether for construction and renovation, rental
assistance, or homeownership enhancement. This review should
comprehensively identify the potential of these programs to specifically
address the housing needs of people with disabilities, determine the
extent to which the Department currently is able to monitor the
effectiveness of their use for this intended purpose, and create
improved means for ensuring that funds and authorizations targeted to
housing for people with disabilities will be used fully and effectively
for that purpose.

***Recommendation 9.3:*** NCD recommends that HUD include in its
standard auditing practices randomized and unannounced annual reviews of
PHA compliance with VCAs. These reviews should identify instances in
which implementation may have lapsed and motivate these local housing
agencies to maintain the high standards contemplated in the agreements.

***Recommendation 9.4:*** NCD recommends that HUD create an advisory
panel composed of fair housing advocates and people with disabilities to
advise it on key emerging issues in the fair housing arena.

***Recommendation 9.5:*** NCD recommends that in subsequent rounds of
MFP demonstration funding, CMS require all applications to include
detailed information on how adequate housing options will be identified
and modified, where necessary, and how they will be funded.

***Recommendation 9.6:*** NCD recommends that Congress instruct HUD to
conduct a detailed study of whether and how each of the incentives and
strategies currently used to encourage the creation of a greener nation
could be adapted for use in creating a more accessible nation as well.

***Recommendation 9.7:*** NCD recommends that the OMB, the CBO, and the
GASB form a joint commission to study and develop a means for "scoring"
(that is, for analyzing the cost and benefit implications of)
multiagency and cross-program initiatives and planning efforts.

***Recommendation 9.8:*** NCD recommends that, in the forthcoming
reauthorization of the IDA legislation, Congress provide that, if the
sums in question are actually and strictly used for home-buying
purposes, limitations on the amounts that can be aggregated for
first-time home purchase through IDAs be eliminated and that limitations
on the time frames in which funds can be saved also be eliminated.
Congress should create a homeownership accounts demonstration, modeled
on PASS, for SSI recipients and people with disabilities receiving cash
or in-kind benefits under other needs-based and asset-limited federal
and state programs.

[]{#refheading___toc181717858 .anchor}Chapter Ten: Transportation

[]{#__RefHeading___Toc181717859 .anchor}Introduction

This chapter begins with a discussion of United We Ride (UWR), one of
the major local and regional transportation initiatives undertaken
pursuant to the Administration's human services transportation
coordination and improvement efforts. Existence of this effort reflects
the growing awareness of a new class of disability:
transportation-disadvantage. The section discusses organization and
recent developments in the UWR program, and makes three suggestions for
its enhancement. These suggestions include recommendations dealing with
how its accomplishments can be made most tangible and recommendations
bearing on federal legislation that may be needed to maximize the
potential for coordination among federally funded transportation service
providers.

Another important transportation initiative, not specifically targeted
toward people with disabilities but potentially of great importance to
many, is the job access and reverse commute program. This program is
aimed at facilitating transportation to and from work for variously
transportation-disadvantaged people. Given the importance of such
transportation as a link in the chain of employment, the section
addresses ways in which the program could be made maximally responsive
and accessible to workers with disabilities.

Turning to civil rights in transit, the chapter discusses the positive
role of the Department of Justice (DOJ) in a recent Detroit public
transit case. Noting how issues under the Americans with Disabilities
Act (ADA) have evolved from matters of equipment design to issues of
maintenance, program accessibility, and the fairness of transit-agency
policies and procedures, NCD urges DOJ to maintain active oversight of
local transit system accessibility and to incorporate this emerging set
of issues into its monitoring and oversight.

The chapter next describes the ongoing development of ADA passenger
vessel guidelines. Encouraging the Department of Transportation (DOT) to
complete its work on its part of these guidelines, the section once
again notes the growing role of procedure and policy in the enforcement
of the ADA, and also notes the complexities created by the need for
specific guidelines, such as those for cruise ships, to cover various
unique environments.

In the final major section on air travel, cutbacks in the availability
of the aviation consumer protection hotline are noted and reasons why
such cutbacks should be reversed are set forth. NCD urges DOT and the
Transportation Security Administration (TSA) to complete work on key
guidelines relating to such matters as screening practices for use with
people who are deaf, accessibility of self-service airport ticket
machines and other kiosks, and accessibility of airline Web sites.

[]{#__RefHeading___Toc181717860 .anchor}United We Ride

Pursuant to President Bush's 2004 Executive Order on human services
transportation coordination,[^116] the Federal Interagency Coordinating
Council on Access and Mobility (CCAM) was established. One of CCAM's
chief projects is the UWR initiative. UWR, like the overall human
services transportation coordination effort, reflects an emerging
awareness of a new form of disability. This new disability, while not
rising to the level of legal recognition or civil rights protection,
nevertheless represents one of the most restrictive sources of
isolation, dependency, and underachievement in America today. This new
disability includes people who can be described as
"transportation-disadvantaged," such as older Americans, individuals
with lower incomes, and people with disabilities.

We commonly think of transportation-disadvantaged people as those who
are unable to drive, but the category extends to people who cannot
afford to drive, people who could drive with assistive technology
devices but cannot obtain them, and people who would use mass transit if
it were available and accessible.

Although CCAM has not undertaken systematic research into the costs of
transportation disadvantage, anecdotal accounts suggest that the costs
are high and of three sorts. First, hidden opportunity costs often
result from reduced or forfeited access to employment and education.
Second, there are the also largely invisible economic costs of
dependency, in terms of time lost from work by friends or family members
who must provide transportation services to those who lack this
autonomy. Society has recognized similar issues in such areas as the
provision of home-based care by family members or friends, but its
applicability in the transportation arena has been little discussed. The
third and final cost, which is more widely recognized, is potentially
enormous. In areas from delayed provision of health care services and
failure to obtain preventive services, to premature institutionalization
of people who otherwise could, and would prefer to, remain in their
homes, lack of access to transportation may play a major role.

Significant developments in the program during 2005--06 are reflected in
a new UWR progress report.[^117] NCD commends the CCAM for a number of
key achievements, including its role in increasing from 5 to 40 the
number of states with human services transportation coordinating
councils, the provision of planning and implementation grants, and the
development and dissemination of training and technical assistance
activities. NCD appreciates the opportunity to participate in the work
of the CCAM and looks forward to further cooperative and collaborative
efforts in the coming years.

NCD believes that major opportunities exist to enhance the work, sharpen
the focus, and leverage the benefits of human services transportation
coordination efforts. In this connection, the Council wishes to address
three points.

Accountability Measures

NCD commends the CCAM for including accountability among its major goals
and believes that achievement of this goal could be heightened by
clarification of a number of policy points. It would be helpful, for
example, to ask grantees and their partners to establish distinctive
goals and priorities that distinguish such objectives as providing
better service to existing riders from providing service to additional
or new riders. Additionally, subjective measures of customer
satisfaction should be supported by objective measures such as frequency
of getting where one needs to go, reliability of schedules and trip
duration estimates, convenience of service in terms of its
categorization of door-to-door or fixed-route service, scheduled versus
on-demand service, and other variables.

It is not nor should it be CCAM's role to make decisions for local
communities about how to address these variables; however, from the
standpoint of accountability and program evaluation, it would be
reasonable to expect grantees and partners to establish their own
baselines against which program outcomes can be objectively and
comparatively measured.

Identification of Partners

The latest UWR progress report does not attempt to describe the likely
diversity of partners involved in various state and local transportation
efforts. Nor does it specifically name the 25 national organizations
comprising the National Consortium on Human Service Transportation. The
report lacks any specific indication that these transportation efforts
are linked with closely related key policy initiatives, such as
deinstitutionalization efforts like those under *Olmstead* or under the
"rebalancing" provisions of the Money Follows the Person program
(discussed in Chapter Five). Similarly, the report does not indicate
whether the CCAM has conducted its coordination efforts to the extent of
incorporating transportation planning into funding decisions made by
other federal agencies in areas ranging from housing to health care.

Accordingly, NCD recommends that the CCAM develop procedures to ensure
that federal departments and agencies participating in its deliberations
incorporate transportation-access considerations into their own planning
and decisionmaking and ensure that their contractors and grantees will
consider transportation in all relevant planning and implementation
activities.

Needed Legislation

At least twice in the UWR report, the possible need for enabling
legislation is addressed. The first involves cost-sharing. The CCAM
makes clear its support for cost-sharing, and the very terms it uses
suggest that legislation is needed to make the process easier and more
understandable. The report states, "\[w\]here statutorily permitted that
standard cost allocation principles for transportation be developed and
endorsed by Federal human service and transportation agencies." Put
another way, there may be instances in which federal law does not
otherwise permit cost allocations among federal programs, and even if
the law does permit such cost allocations, the methods would have to be
developed and endorsed by the various federal human services and
transportation agencies. Under these circumstances, it is hardly
surprising that most grantees and partners are uncertain about
cost-sharing initiatives.

In this light, NCD recommends that the CCAM, in conjunction with the
Office of Management and Budget (OMB), propose specific legislation to
Congress designed to facilitate cost-sharing among federally funded
participants in the human services transportation sector.

NCD joins the CCAM in recommending enactment of authorizing legislation
to permit the development of unified or single-system transportation
demonstration projects in which a consolidated federal funding stream
would be used to meet the total mobility needs of
transportation-disadvantaged populations. NCD cautions that this needs
to be done in a way that avoids the inadvertent creation of barriers to
cooperation between human services and other transportation providers.

[]{#__RefHeading___Toc181717861 .anchor}Job Access Program

For many years, the time spent by Americans driving and the distances
traveled between home and work have been increasing. While this is a
mere nuisance for many, it dramatizes the growing connection between
access to transportation and access to employment.

Our nation's transportation policy has come to recognize two key changes
in the distribution of population relative to the location of jobs.
These changes are, first, that many people who cannot drive, whether on
account of disability, low income, or both, are increasingly limited in
their employment opportunities as a result. Second, existing mass
transit systems, designed as they were to bring people into and out of
the downtown sections of major cities, cannot be relied on to transport
workers to and from the spread-out, low-density, suburban work
environments and business corridors that increasingly represent the
locale for job creation and economic activity.

The Job Access and Reverse Commute (JARC) program is operated by the
Federal Transit Administration (FTA), under the authority of the Safe,
Accountable, Flexible, Efficient Transportation Equity Act---A Legacy
for Users of 2005.[^118] JARC embodies a national concern to help
redress these problems.

A report to congressional requesters issued by the U.S. Government
Accountability Office in November 2006 outlines major recent changes in
the JARC program, particularly those dealing with the formula for
allocating funds among states.[^119] This report describes a number of
oversight issues. What goes unaddressed in the report is the degree to
which JARC does, can, or should attempt to meet the specific job-related
transportation access needs of people with disabilities.

NCD believes that the JARC program could and should take a number of
steps to ensure maximum inclusion of people with disabilities. To
determine whether programs are taking these steps, NCD recommends that
the FTA undertake a study of its own regulations and of the
accessibility practices of transportation service providers. This study
should include (1) the extent of requirements for vehicles to meet
accessibility standards, (2) the nature and targeting of publicity
regarding the programs, (3) the degree of involvement of
disability-oriented organizations in planning processes, and (4) other
factors. If the study determines a low level of accessibility, a minimal
degree of outreach, or a lower utilization of JARC resources by workers
with disabilities than might be expected, then FTA should take steps to
correct the process to ensure that JARC is as available as possible to
those who want to work.

[]{#__RefHeading___Toc181717862 .anchor}Urban and Regional Mass Transit

One vital link in our transportation system is the public bus, light
rail, subway, and commuter rail systems that serve many metropolitan
areas. These systems are major modes of transportation for employed
people in a number of major cities, including our nation's capital. In
recent years, the importance of mass transit for people with
disabilities has grown, as ADA compliance and other factors have led
existing systems to become more accessible. Until recently, efforts to
increase mass transit accessibility have focused on equipment design
requirements associated with vehicle procurement.

But, now, issues require new monitoring and enforcement strategies. In
that regard, the Detroit bus case, discussed in last year's NCD progress
report, bears further attention. NCD commended the Department of Justice
(DOJ) for its intervention in this case and for its recognition that
vehicle maintenance, service, and a variety of transit-agency policies
and procedures may play as decisive a role as equipment design standards
do in determining the real accessibility of transit systems.

NCD commends DOJ for its intervention and positive, sustained role in
the Detroit case. For that role to be fully effective, however, it must
accomplish two things. First, it must result in long-term compliance
with the terms of the settlement and in levels of passenger service that
are consistent with the goals of the agreement. Second, it must serve as
a template for proactive monitoring of transit system practices and
procedures around the country.

DOJ's involvement in the Detroit case began with its intervention in a
case initiated by private parties. In other cities, although the
problems may be as severe, private individuals may not always be in a
position to pursue the matter. For this reason, NCD recommends that DOJ
formalize procedures for routine patterns-and-practices monitoring of
ongoing compliance by local mass transit systems with ADA requirements.
Such matters as maintenance, scheduling, deployment of accessible
vehicles, operator training, making of stop announcements, accessibility
of Web sites, complaint-handling practices, and a variety of other
matters should be included in these routine audits.

[]{#__RefHeading___Toc181717863 .anchor}Passenger Vessel and Cruise Ship
Accessibility Guidelines

In the wake of the Supreme Court's 2005 *Spector* decision,[^120]
holding that foreign-flag cruise ships operating in U.S. ports are
covered by the ADA, efforts to develop cruise ship accessibility
guidelines have gained new impetus. The process has been a long and
laborious one, involving the Access Board, DOT, and DOJ. This process
reflects the intersection of a number of issues, including divided
jurisdiction among government oversight agencies, technical design
issues pertaining uniquely to the application of accessibility
principles to ships, and issues relating to the practices and procedures
of cruise ship operators.

DOT is expected to issue a notice of proposed rulemaking (NPRM) early in
2007 covering many of the nonarchitectural matters. In view of the few
lawsuits filed and the considerable number of anecdotal reports
concerning practices ranging from denial of passage after money had been
accepted, to refusal to accommodate service animals, to insistence on a
companion paid for by the passenger with a disability, NCD believes such
guidelines can provide important benefits to consumers and much-needed
clarity and stability to the cruise ship industry.

Accordingly, NCD recommends that DOT issue its NPRM as quickly as
possible and that the Department expedite the process of comment
solicitation and review, so that final regulations may be promulgated at
the earliest possible date. Meanwhile, NCD urges DOT to make clear, by
appropriate *Federal Register* notice, that its pending ADA cruise ship
regulations do not preempt the application of state civil rights laws to
practices that (1) occur within the confines of the state and (2) would
be actionable if committed by the proprietors of other transportation
modalities.

[]{#__RefHeading___Toc181717864 .anchor}Air Travel

Aviation Consumer Hotline

In 2003, DOT established an Air Carrier Access Act (ACAA) hotline.
Operating 24 hours a day, this hotline created an opportunity for air
travelers facing disability-related problems with carriers to seek
real-time assistance from knowledgeable duty officers. NCD received
reports that the availability of the hotline offered a real-time method
to resolve many disputes. As such, NCD believes that the hotline
benefited passengers with disabilities, TSA staff, airport employees,
and air carrier personnel.

On October 1, 2006, the hotline ceased to operate in real-time. Since
then, the hotline has been staffed only during business hours (eastern
time) on weekdays, and as of this writing, callers are told by recorded
message to leave their names and numbers so that their calls can be
returned.

Air travel and the time people spend in airports are not limited to
business hours. Moreover, only DOT has the authority, and in many cases
the knowledge, to adjudicate ACAA disputes. If airport screening and
other terminal personnel and flight crews were not subject to such
constant and rapid turnover, institutional awareness on the part of
covered entities concerning the requirements of the ACAA would be
greater. If the air travel environment were not so stressful and
hurried, misunderstandings and disputes might be less of a hazard. But
under the circumstances that air travelers, regulators, and the aircraft
industry confront today, curtailment of the hotline is problematic from
the standpoint of passengers and the industry alike.

On the basis of informal conversations with air travelers with
disabilities, NCD believes that the hotline's existence and potential
usefulness are not widely known. Hence, it could well be that minimal
usage reflects not a lack of need but a lack of information on the part
of potential users.

NCD recommends that DOT revisit its decision to curtail the hours of its
hotline and that it work with the industry and consumers to promote the
existence and function of the hotline to travelers with disabilities and
to the agencies and companies that may also benefit from the resolution
or avoidance of disability-related disagreements.

TSA Guidelines

In late 2006, DOT announced its adoption of the ADA Accessibility
Guidelines, as revised by the Access Board.[^121] NCD commends the
Department for this step, but because air travel issues are largely
governed by the ACAA, this decision on the part of DOT is likely to have
little impact on air transportation. Other matters currently on the
agenda of the Department's TSA are described below and hold considerable
promise for easing air travel for people with disabilities. These
matters should be pursued energetically.

Guidelines for Accommodating Travelers Who Have Hearing Impairments

In early 2006, the TSA sought public comments on proposed guidelines for
accommodating travelers who are deaf, hard of hearing, or deaf-blind in
the security screening process. These guidelines are important for two
reasons. First, they should serve to improve accessibility of travel and
reduce screening problems for many passengers with disabilities. Second,
by applying the ACAA to the screening process itself, they embody at an
important new level TSA's recognition that security and equal access are
fully compatible and, indeed, are complementary.

As extended, the comment period for these proposed guidelines was due to
expire June 24, 2006. To NCD's knowledge, the TSA has not taken further
action pursuant to the receipt of those comments. NCD recommends that
the TSA immediately announce the status of the accommodation guideline,
and state its intentions with regard to the promulgation of the
guideline. If changes are necessary, NCD stands ready to work with the
TSA in perfecting the guideline.

Self-Service Kiosks

In May 2006, NCD issued "NCD Position Paper on Access to Airline
Self-service Kiosk Systems."[^122] This paper reviews the applicable law
and technology, and makes a powerful case for action by DOT to require
that self-service airport kiosks be made accessible.

The economic and practical arguments favoring accessibility have been
set forth in detail in the kiosk paper and NCD's last two annual
progress reports. To NCD's knowledge, no one has put forth any sound
reason---technical, legal, or economic---why kiosks couldn't and
shouldn't be accessible. Nor was the technology unknown or untried at
the time when the build-out of current self-service airport technology
began.

In a 2004 NPRM,[^123] DOT indicated its belief that kiosks owned and
operated by air carriers (as well as Web sites operated by them for
ticketing and information) were subject to the ACAA. While NCD endorses
DOT's view, it does not follow that ACAA jurisdiction precludes a role
for any other statute, such as the ADA or even state laws.

Airport buildings, where kiosks are located, are public facilities
subject to Title II of the ADA if owned or operated by public agencies,
such as airport authorities or municipal governments. And such terminals
are public accommodations within the meaning of Title III of the ADA if
owned or operated by private entities, including the parent companies of
air carriers.

With each passing day of inaction, DOT gives carriers and other parties
increased opportunity to use the growing size of the self-service
kiosk's installed base as an argument against the costs of retrofitting.
With each day that passes, the build-out of this generation of machines
draws nearer to completion.

NCD urgently recommends that DOT indicate its legal authority to move
under both applicable laws (the ADA and the ACAA) and announce an
expedited timetable for completion of the regulatory process. This
action should result in meaningful accessibility in the increasingly
self-service world of the modern airport for all passengers with
disabilities, including passengers who are blind or who for other
reasons cannot access touch screens.

Airline Web Sites

In November 2004, DOT issued an NPRM in connection with its planned
updating of the ACAA regulations.[^124] Among other matters, the NPRM
undertook consideration of the adoption of rules requiring that airline
Web sites be accessible to customers with disabilities.

As discussed in last year's report, DOT has failed to move forward and
failed to indicate whether, and if so what, public comment was received.
To the best of the Council's knowledge, since issuance of the proposed
rule, DOT never addressed the subject in any formal or regulatory
setting.

NCD reiterates its recommendation that the Secretary of Transportation
forthrightly and unequivocally state the Department's position regarding
its legal authority to require Web site accessibility and its intentions
with regard to the issue, whether in the context of the 2004 NPRM or
otherwise. If DOT lacks the authority to mandate this equality, NCD
recommends Congress enact legislation that will enable the Department to
make the promises of the ACAA a reality.

[]{#__RefHeading___Toc181717865 .anchor}Recommendations

***Recommendation 10.1:*** NCD recommends that the CCAM develop
procedures to ensure that federal departments and agencies participating
in CCAM's work incorporate transportation-access considerations into
their own planning and decisionmaking and to ensure that their
contractors and grantees will consider transportation in all relevant
planning and implementation.

***Recommendation 10.2:*** NCD recommends that the CCAM, in conjunction
with OMB, propose specific legislation to Congress designed to
facilitate cost-sharing among federally funded participants in the human
services transportation sector.

***Recommendation 10.3:*** NCD recommends enactment of authorizing
legislation to permit the development of unified or single-system
transportation demonstration projects in which a consolidated federal
funding stream would be used to meet the total mobility needs of
transportation-disadvantaged populations.

***Recommendation 10.4:*** NCD recommends that the FTA undertake a study
of its own regulations and of the accessibility practices of human
services transportation service providers.

***Recommendation 10.5:*** NCD recommends that DOJ formalize procedures
for routine patterns-and-practices monitoring of the ongoing compliance
by local mass transit systems with the requirements of the ADA.

***Recommendation 10.6:*** NCD recommends that DOT issue its cruise ship
NPRM as quickly as possible and that the department expedite the process
of comment solicitation and review, so that final regulations may be
promulgated at the earliest possible date.

***Recommendation 10.7:*** NCD recommends that DOT revisit its decision
to curtail the hours of its consumer hotline and that it works with the
industry and consumers on a campaign to promote the existence and
function of the hotline.

***Recommendation 10.8:*** NCD recommends that the TSA immediately
announce the status of the proposed accommodation guideline for the
security screening of deaf airline passengers and state its intentions
with regard to the promulgation of the guideline.

***Recommendation 10.9:*** NCD recommends that DOT indicate its legal
authority to move under both applicable laws (the ADA and the ACAA) and
announce an expedited timetable for completion of the regulatory
process. This action should result in meaningful accessibility in the
increasingly self-service world of the modern airport for all passengers
with disabilities, including passengers who are blind or who for other
reasons cannot access touch screens.

***Recommendation 10.10:*** NCD recommends that the Secretary of
Transportation state the Department's position regarding its legal
authority to require airline Web site accessibility and its intentions
with regard to the issue, whether in the context of its existing 2004
NPRM or otherwise.

[]{#__RefHeading___Toc181717866 .anchor}Chapter Eleven: Assistive
Technology and Telecommunications

[]{#__RefHeading___Toc181717867 .anchor}Introduction

This chapter highlights several issues related to assistive technology
(AT) and to access to our nation's communications networks.

The chapter begins with a discussion and lengthy quote from NCD's
December 2006 technology report. The chapter provides a review of
recently published research findings concerning the persistence and
extent of the digital divide to illustrate some of the problems and
concerns discussed in the report.

In connection with specific policy contexts in which opportunities for
heightened communications access exist, the chapter then discusses the
pending revision of regulations governing the two key civil rights
provisions: Section 255 of the Communications Act and Section 508 of the
Rehabilitation Act. A number of procedural and substantive issues
surrounding the content of the new guidelines and concerning oversight
and implementation of these laws by federal administrative agencies are
considered.

Next, the chapter reviews a number of access-related issues falling
under the jurisdiction of the Federal Communications Commission (FCC),
including issues concerning relay services and closed captioning,
suggesting strategies for rationalizing and improving practice and
policy in the oversight of these areas.

The chapter then discusses developments under the Assistive Technology
Act that promise heightened coordination in the delivery of services and
the development of programs under the Act.

Finally, a recommendation for using the tax law to promote the
development of accessibly and universally designed technology and
services is presented.

[]{#__RefHeading___Toc181717868 .anchor}NCD's *Over The Horizon* Report

In December 2006, NCD issued a comprehensive report, *Over the Horizon:
Potential Impact of Emerging Trends in Information and Communication
Technology on Disability Policy and Practice.*[^125] This report draws
together the major trends in technology today and identifies both the
positive implications and the risks posed to access for people with
disabilities. Speaking of the concerns and issues, the report states:

Many of the same technological advances that show great promise of
improved accessibility, however, also have the potential to create new
barriers for people with disabilities. The following are some emerging
technology trends that are causing accessibility problems.

Devices will continue to get more complex to operate before they get
simpler. This is already a problem for mainstream users, but even more
of a problem for individuals with cognitive disabilities and people who
have cognitive decline due to aging.

Increased use of digital controls (e.g., push buttons used in
combination with displays, touch screens, etc.) is creating problems for
individuals with blindness, cognitive and other disabilities.

The shrinking size of products is creating problems for people with
physical and visual disabilities.

The trend toward closed systems, for digital rights management or
security reasons, is preventing individuals from adapting devices to
make them accessible, or from attaching assistive technology so they can
access the devices.

Increasing use of automated self-service devices, especially in
unattended locations, is posing problems for some, and absolute barriers
for others.

The decrease of face-to-face interaction, and increase in e-business,
e-government, e-learning, e-shopping, etc., is resulting in a growing
portion of our everyday world and services becoming inaccessible to
those who are unable to access these Internet-based places and services.

In addition, the incorporation of new technologies into products is
causing products to advance beyond current accessibility techniques and
strategies. The rapid churn of mainstream technologies, that is, the
rapid replacement of one product by another, is so fast that assistive
technology developers cannot keep pace. Even versions of mainstream
technologies that happen to be accessible to a particular group can
quickly churn back out of the marketplace. To complicate the situation
further, the convergence of functions is accompanied by a divergence of
implementation. That is, products increasingly perform multiple
functions that were previously performed by separate devices, but these
"converged" products are using different (and often incompatible)
standards or methods to perform the functions. This can have a negative
effect on interoperability between AT and mainstream technology where
standards and requirements are often weak or nonexistent. Thus, without
action, the gap between the mainstream technology products being
introduced and the assistive technologies necessary to make them
accessible will increase, as will the numbers of technologies for which
no accessibility adaptations are available.

This summary lays out a formidable array of problems, but in view of the
opportunities and benefits that are at stake, they are problems that can
and must be overcome. To all those of good will who share a desire to
ensure technological access and equality (even if they do not
necessarily have the personal experience or technological knowledge to
understand the problem in each case) a careful reading of this report,
including especially the principles it sets forth for overcoming these
barriers, is recommended.

[]{#__RefHeading___Toc181717869 .anchor}The Digital Divide

A powerful illustration of the access problem and its consequences can
be gleaned through a recent review of several surveys. Since a 2002
National Telecommunications Information Administration report announced
that the digital divide had closed, the very term "digital divide" has
become anachronistic in the minds of many. Yet a detailed report
published in September 2006 by the University of Montana's Research and
Training Center (RTC) on Disability in Rural Communities shows that the
digital divide is still very real, and with the increasing centrality of
the Internet in our lives, that it is growing ever-more profound in its
implications.[^126] The RTC report studied several sources of survey
data. Though their methodologies differed, their results pointed to the
existence of a significant gap between computer use and Internet access
for people with and people without disabilities. Broadly speaking, it
appeared that the rate of access for people with disabilities may be
only about half that for the general population.

In attempting to account for these discrepancies, one factor cited by
the review was the low rates of employment among people with
disabilities. This could account for some of the disparity, because many
people use computers and have Internet access at work. Likewise, if
income and education levels were controlled for, it is possible that the
disparities would have been less pronounced. But to say that people may
have lesser access to the Internet because of unemployment and poverty
is to say something akin to higher death rates can be explained by poor
health.

NCD believes that the processes at work are circular and mutually
reinforcing. Lesser education, lower incomes, and higher unemployment
contribute to digital isolation, but among the factors contributing in
turn to these, the serious problem of the inaccessibility of much
mainstream technology, as described in *Over the Horizon*, surely plays
a major role. A generation ago this was not an independent variable of
great significance. But today it has joined all the familiar problems as
a source of exclusion and a breeding ground for frustration and despair.

Bringing people with disabilities fully into the technological
mainstream has emerged as one of the chief arbiters of equal opportunity
and full participation in our society. No serious commitment to
equality, such as that embodied in the President's New Freedom
Initiative, can hope to succeed unless this dimension is addressed.

For this reason, NCD believes that an intensive effort to achieve equal
access to electronic communication, resources, and environments is
vital. NCD recommends that Congress create a national panel, with
representatives drawn from government, industry, and the disability
community, tasked with identifying and recommending specific measures to
overcome barriers, such as the barriers described in the NCD report. The
remainder of this chapter will focus on a number of the key barriers and
the most viable solutions that can be implemented quickly and that would
have the greatest value in bringing about increased access and
participation.

[]{#__RefHeading___Toc181717870 .anchor}Nondiscrimination

To some, the notion that telecommunications inaccessibility can be a
form of discrimination may initially be jarring or implausible. After
all, how can the host of decisions made by a broad range of public and
private entities, based on a tangle of laws and regulations, and
motivated largely by the perceived interests of the economy as a whole
and of certain businesses in particular, involve or amount to
discrimination? The answer depends on one's definition. If you believe
that discrimination can only occur intentionally, that it can only take
place when a decision is made for the specific purpose of excluding
people with disabilities, without regard to any other consequences, then
no, most decisions about technology and telecommunications are not
discriminatory. But that is not what the law says.

As early as in its 2001 paper *The Accessible Future* NCD made the case
that decisions made with indifference to their negative consequences for
people with disabilities, under circumstances in which the existence of
inclusive alternatives is known and in which these alternatives are not
costly or impractical, are discriminatory. When such indifference is
manifested in the face of laws specifying a higher standard of care, the
inference of discrimination becomes even stronger.

In its December 2006 paper, *The Need for Federal Legislation and
Regulation Prohibiting* *Telecommunications and Information Services
Discrimination*,[^127] NCD assessed many of the strategies that would be
most effective in bringing about equal access to the high-speed digital,
wireless, Web 2.0 and related environments. These strategies include
better enforcement of existing laws, promulgation of clear standards and
design principles, and development of strategies to help the competitive
marketplace to correct for its failure to achieve accessibility.
Additional strategies include economically rewarding service providers,
software developers, and equipment manufacturers who incorporate
accessibility into their products and services through adherence to
principles of universal design (UD) and through support for
interoperability with AT.

These strategies, which should be made operational by the national panel
recommended in the previous section, are embedded in existing law. With
that in mind, let us turn to some current legislative and regulatory
initiatives through which their application can be understood and
advanced.

[]{#__RefHeading___Toc181717871 .anchor}Specific Issues

Access Board Update of Section 255 and Section 508 Regulations

Section 255 of the Telecommunications Act[^128] and Section 508 of the
Rehabilitation Act[^129] are two of the bulwark provisions bearing on
telecommunications and information technology accessibility. Both embody
the principles just described. Section 255 requires that
telecommunications services and equipment (including "customer premises
equipment") be accessible to and usable by all people, including people
with disabilities, to the extent that it is "readily achievable" to do
so. Section 508 attempts to harness the Federal Government's enormous
buying power in the service of accessibility. It requires that
electronic and information technology (E&IT) purchased by the government
for its own use be accessible to users with disabilities unless one of
several exceptions apply, including that making it accessible would
constitute an "undue burden."

The meaning of these requirements is not always self-evident, and both
statutes provided for the establishment of government-industry-consumer
committees under the auspices of the Access Board to draft guidelines
and standards. Both processes were duly completed, and the standards
were adopted, in the case of 255 by the FCC, and in the case of 508 by
the Department of Justice (DOJ) and the General Services Administration.

In its annual progress reports over the past four years, NCD has tracked
the progress and implementation of these statutes and has carefully
reviewed the effectiveness of these guidelines. That effort has obliged
the Council to note repeatedly what it regarded as serious deficiencies
in enforcement and oversight of both laws.

Against this backdrop, and recognizing the rapid evolution of
technology, NCD noted with great interest the announcement in mid-2006
of the creation by the Access Board of the Telecommunications and
Electronic and Information Technology Access Advisory Committee
(TEITAAC)[^130] to revise the guidelines for both laws. NCD understands
that none of the guidelines recommended by the TEITAAC, or indeed by the
Access Board, will have the force of law until adopted by the FCC in the
case of 255 and by DOJ in regard to 508. NCD is confident that
well-thought-out recommendations that responsibly address the serious
problems associated with both laws will be hard for those implementing
agencies to ignore or disregard.

Therefore, NCD believes that this revision process has the potential to
remedy many of the administrative and enforcement problems affecting the
two laws, but the Council is also concerned that the revisions could
result in serious weakening of these vital protections.

Does One Size Fit All?

NCD's first overriding concern is that the effort to create a single set
of guidelines, while desirable from the standpoint of clarity and
simplicity, could obscure key differences between the two laws,
including distinctions in how responsibility for enforcement is
allocated and on whether the "readily achievable" or the "undue burden"
standard is used. Accordingly, NCD recommends to the Access Board that
while avoiding unnecessary duplication and including as much shared
material as possible, the revised guidelines being developed by the
TEITAAC treat Sections 255 and 508 separately, as their differing
requirements, procedural elements, and oversight and enforcement
mechanisms require.

Section 255 Guidelines

Not all that needs to be done to strengthen and vindicate Section 255
can be done by the TEITAAC. A number of key issues fall outside its
sphere of responsibility. But the Committee can take a number of steps.

First, by way of documentation requirements, the Committee needs to do
two things. The first is to define the documentation of accessibility
features as a key element of those features. However it may be that a
particular feature or function is accessible, if knowledge of that fact
and of how to use it are not conveniently and widely available to users,
the net effect may be the same as if the capability did not exist at
all.

But documentation in the context of Section 255 has another meaning as
well. Thus, the second key element of documentation relates to the need
to track companies' efforts to make their products and services more
accessible. If a company is going to claim that accessibility, UD, or
interoperability with AT is not "readily achievable" in connection with
a particular device, system, or function, then it is at least reasonable
to ask that the company asserting this defense be able to present
evidence of the efforts it has made, the research it has done, and the
outreach it has undertaken to achieve the desired results.

The goal is threefold: (1) to discover those rare cases of bad faith in
which the claim of "not readily achievable" is glibly made but no
serious efforts to achieve accessibility were ever undertaken; (2) to
reveal cases in which a firm acting in good faith was mistaken or
misinformed about the capabilities of existing technology or design; and
(3) to qualify UD research expenditures for the expanded research and
development tax credit proposed below.

Section 508 Guidelines

In connection with Section 508 guidelines, there is also much the
TEITAAC can do. Once again, perhaps its greatest contribution can be in
the area of documentation. Consistent with the underlying statute and
with the scope of its responsibility, the committee should clarify how
and when federal agencies must document the reasons for their inability
to procure compliant equipment or services. The statute provides a
number of circumstances in which full compliance is not required,
including circumstances in which compliance would represent an undue
burden and situations in which accessible products simply do not exist.
No one suggests that the TEITAAC can or should modify these exceptions
and defenses. But it can and should ensure the integrity of the process
by requiring, as the statute clearly contemplates, more transparent,
standardized, and available explanations by procuring agencies whenever
any applicable exceptions are brought into play.

The goal is to identify situations of mistake or misinformation and to
focus attention on products and services for which achievement of
accessibility remains a problem.

A second key step the TEITAAC can take with respect to Section 508 is to
reverse the exceptions added to the requirements by its predecessor
advisory committee, the EITAAC. For example, in exempting "back office"
equipment from the requirements of the law,[^131] the original EITAAC's
action had the unintended effect of denying accessibility, and
potentially employment opportunities, to some number of federal workers
or job applicants with disabilities. Nothing in Section 508 indicated an
intention to draw a distinction between covered and noncovered employees
based on whether they did their work in the front or the back office.

The third step the TEITAAC can take to strengthen Section 508 is to
clarify whether the information created, stored, and transmitted by the
technology, or only the technology itself, needs to be accessible. This
is particularly important with respect to the role of the public.

Section 508 extends beyond federal employees to include members of the
public who are permitted or required to use federally owned E&IT for
various transactions or interactions. But exactly what this means
remains unclear in several respects. Take for example the case of an
executive branch Web site required to be accessible under the law. For
example, assuming that people with disabilities are able to find and
download video clips from a covered Web site, does the law also require
that accessible versions of the content (for example, audio or text
versions, or captioned versions of videos) be accessible? Similarly, if
a member of the public uses an information terminal machine or
point-of-sale machine such as a postal service stamp machine or a
machine that issues forms, do the documents emanating from such machines
need to include any accessibility features? Finally, if the computers
and printers on which federal employees prepare sensitive personal
communications with citizens are required to be accessible to and usable
by those workers, does it follow that the documents or other materials
produced by them need to be accessible as well?

One way the TEITAAC can help federal agencies answer these questions is
by strengthening its guidance concerning the planning provisions of the
law. The statute requires that agencies develop plans for alternate
methods of making information accessible when E&IT cannot be made
accessible. By emphasizing the importance of developing these plans, the
line of demarcation between what is required to be made accessible and
what is not can be more clearly analyzed and understood.

The TEITAAC needs to consider all these questions. NCD recommends that
the TEITAAC seek the broadest possible range of input in answering the
inseparable policy and technical questions that will so heavily
influence the impact of Sections 255 and 508 in the years to come.

FCC Implementation of Section 255 Recommendations

In terms of implementing the recommendations made by the TEITAAC, and in
terms of actions that are solely within its own jurisdiction, the FCC
can do many critical things. NCD's annual reports over the past four
years have articulated many of these actions and have urged the FCC to
take action, but despite the Commission's admirable and energetic
pursuit of equal access for people with disabilities under other laws,
its extreme passivity in regard to Section 255 remains inexplicable and
disheartening.

Regulatory Categories

Over the years, the FCC has continued to redefine various
telecommunications technologies and services in ways that remove them
from the coverage of Section 255 altogether. Section 255 covers
"telecommunications" services and equipment. But by defining almost all
Internet-based services and Internet-enabled devices as "information
technology" or services, the Commission has steadily narrowed the scope
of 255, leaving it to cover only those residual, dial-up, analog, and
other traditional services that are increasingly marginal in our
high-speed, online world.

As discussed in last year's progress report, congressional enactments
ratifying these FCC policies, together with a major Supreme Court ruling
on the subject, appeared to give these regulatory decisions the force of
law. NCD came to believe that the question was left open whether, even
if it wanted to, the FCC could restore civil rights protections under
Section 255. NCD therefore urged the FCC to work with Congress to
restore the necessary protections, and considerable effort has been made
by the advocacy community to incorporate civil rights safeguards in
pending broadband legislation.

To NCD's knowledge, the FCC has not reached out to Congress in
connection with this matter. Nevertheless, apart from what Congress does
or does not do, a number of regulatory initiatives emanating from the
Commission during 2006 strongly suggest that it does believe itself to
have considerably more authority in relevant areas than many had
supposed. Accordingly, NCD no longer believes that the FCC lacks
authority to cover many of the newer Internet-based, broadband,
high-speed, and wireless services under the civil rights protections of
Section 255. Nor does NCD think that the FCC regards itself as lacking
the statutory authority to protect the civil rights of people with
disabilities in cyberspace.

For more detailed information, consult the two NCD papers noted earlier
in this chapter. Although prepared to take the initiative by extending a
number of legal requirements, including the levying of certain taxes or
fees, to the supposedly deregulated realm for Internet-based information
services, the Commission has remained strangely reluctant to extend
disability rights protections, especially any arising under Section 255
to this domain. Yet, through a number of pathways, NCD is confident that
it has the legal power and the responsibility to do so.

NCD several times has urged the FCC to issue an authoritative statement
regarding its interpretation of its authority under existing law to
extend civil rights protections to the Internet and to the IP-based
(Internet Protocol) services and technologies involved. NCD renews its
strong recommendation that the FCC issue a statement regarding its
authority to apply Section 255 to so-called information services, and if
the Commission determines that it lacks statutory authority to do so,
then to consult Congress for the necessary legislative authorization.
NCD stands ready to work with the Commission to define the changes that
would yield the greatest benefit to people with disabilities in terms of
education, employment, commerce, and access to government, and to work
with the Commission in devising approaches that would maximize the
incentives to industry of incorporating accessibility and UD into its
product and service offerings.

Monitoring

CD can find no evidence in FCC publications or dockets that the
Commission is undertaking any effort under Section 255 to determine the
level of telecommunications accessibility, to identify positive or
negative trends, or to address problem areas. Judging from anecdotal
reports, even the list of companies' Section 255 contact officers that
the FCC requires be maintained is inaccurate and out-of-date. NCD has
found no indication that the Commission has made any effort to get
companies to update or verify the accuracy of the contact information on
this list.

With respect to monitoring, the Commission appears to believe that the
complaint process will meet this need. NCD emphatically disagrees. As
explained in last year's progress report, isolated consumers are in no
position to negotiate on terms of equality with large telecommunications
companies, and in particular, such consumers are in no position to
refute company claims regarding what is and what is not possible.

For this reason, returning to the question of documentation, NCD
recommends that the FCC notify all Section 255 complainants of their
right to have a review by the Commission of the respondent company's
claims of fact, including statements regarding the efforts it has made
to achieve accessibility and the reasons it could not be done. Isolated
civilian petitioners cannot be expected to evaluate such claims on their
own. Nor should they be required to go through the complex process of
filing formal complaints to invoke the Commission in resolving disputes.

Access Board and DOJ Implementation of Section 508 Recommendations

In terms of the recommendations noted above, and in terms of
administrative actions within the discretion of DOJ, a number of
important things can be done to ensure the integrity of Section 508. The
Access Board should adopt and forward to DOJ for approval the TEITAAC
recommendations noted above, and, unlike the apparent case with the
revised ADAAG (discussed in Chapter Two), DOJ, after seeking and
reviewing comments, should adopt the revised 508 guidelines into law,
reject them, or amend them. Under no circumstances should it leave them
to languish unattended.

A related area of concern, noted in previous progress reports, is the
biennial reports to Congress by DOJ specified in the statute. These
reports have not been forthcoming for a number of years. NCD therefore
urges DOJ to announce its intentions and timetables regarding the
preparation of these required reports. NCD further urges DOJ, in the
event the Department feels that its other heavy responsibilities prevent
it from carrying out this function in a timely manner, to ask the
President to request that Congress transfer the responsibility to
another appropriate federal entity.

[]{#__RefHeading___Toc181717872 .anchor}Relay Services

There was a time when references to relay services could be abbreviated
as TRS because of their applicability to telecommunications relay
services. Because of the proliferation of new methods for delivering
captioning, real-time signing, and other modalities, the *T* in TRS is
increasingly inadequate to capture the dynamic range of possibilities
and developments.

Any attempt to come to terms with the current potential for risks
confronting video relay services (VRS), real-time captioning, and
related services requires disentanglement of a number of intersecting
technologies and several applicable laws. Not only Section 255 but also
the ADA, the Communications Act, and various state statutes and programs
are implicated in the discussion. Two confounding issues need to be
addressed.

Funding

Mechanisms exist for funding traditional TRS services, as well as for
funding teletypewriters and other specialized equipment that people with
hearing, speech, or other telephone-access disabilities use. As new
Internet-based equipment and services have become available, and as new
subpopulations have been enabled to benefit from speech- or
voice-carryover, from redundant audio and visual presentations, and from
other techniques, questions of how these devices and services should be
funded, as well as for whom they should be provided, have become
increasingly important.

NCD believes that the current Universal Service Fund (USF) should be
made available for use in supporting VRS. State-based equipment
distribution programs should be broadened to address the technology
needs of people with a wide variety of telecommunications disabilities
and should be available to subsidize all devices designed to overcome
such disabilities.

Various means exist to bring about the most flexible utilization of
funds. Debate has raged this year about extending USF fees to
Internet-based telephony, with a view toward increasing funds available
to define and accomplish our nation's traditional commitment to
universal telephone access. NCD takes no position on whether a per-line
surcharge or a percentage-of-bill approach should be used, but we do
believe that no sound policy basis exists for taxing one form of
telephone communication but not another. The attraction of VoIP (voice
over Internet protocol) is sufficiently great to ensure that the
development of the technology will not be hindered by the addition of
the USF fee.

What NCD believes necessary is a broad-based consideration of the
funding mechanisms that currently exist, or that need to be created, to
ensure that present and emerging relay technologies will be supported
and made available. Therefore, NCD recommends that the FCC initiate a
rulemaking proceeding to solicit the broadest possible input concerning
existing and potential funding streams, with a view toward drafting
regulations or making legislative proposals designed to ensure that
resources will keep up with technology in this key area.

Jurisdiction

With the Telecommunications Act administered primarily by the FCC, with
ADA responsibility (including ADA Titles II and III responsibility for
payphone accessibility) divided between DOJ and the FCC, and with state
laws playing the major role in determining what specialized
telephone-access equipment (and for what classes of users) will be
subsidized, it is no wonder that a comprehensive overview of the video
access question remains elusive. Depending on whether computers, cable
or satellite television, high-speed wire or wireless, cable- or phone
company-provided technology or services are involved, different laws
with differing regulatory structures will apply. Therefore, NCD
recommends that as part of the rulemaking proceeding recommended above
the FCC seek input about rationalizing jurisdiction and ensuring the
necessary interagency coordination.

[]{#__RefHeading___Toc181717873 .anchor}Closed-Captioning

In connection with the requirements for provision of closed-captioning
of television programming, the FCC has been aggressive in its efforts to
ensure that timetables for closed-captioning would be established,
understood, and met. The applicable regulations do contain provisions
allowing program creators to petition for waivers under various hardship
conditions, but consistent with the ADA standards, they must show that
captioning would constitute an undue burden.

A decision released in mid-September, as amplified and spotlighted by a
letter of concern written by Representative Markey shortly
thereafter,[^132] has thrown this long-standing FCC commitment into
doubt and raised concerns that the FCC may be in the process of
unilaterally carving out new and far-reaching exceptions to the
captioning requirement. The Markey letter expressed concern regarding
the secrecy surrounding the review of waiver requests.

NCD has not been able to determine whether Representative Markey's
letter was answered. In view of the concerns expressed, however, NCD
believes it would be prudent for the Commission to reaffirm the
established legal standards for reviewing closed-captioning waiver
requests. The Commission should establish procedures to ensure that the
review of such requests takes place in an open environment, through
official publication and posting, and with opportunity for public
comment before a request can be granted.

[]{#__RefHeading___Toc181717874 .anchor}E-9-1-1 Access

On November 15, the Commission held an E-9-1-1 Disability Access Summit
to bring together government, industry, experts, and advocates to gather
critical input on needs, barriers, and possible solutions related to
accessing the 9-1-1 system.[^133] The Commission provided Web casting of
this summit, which allowed for great participation of stakeholders.

On December 15, the Commission issued an order extending by one year, to
January 1, 2008, the deadline for VRS providers to become compatible
with the 9-1-1 system. NCD is not aware of what conclusions the
Commission has drawn from the summit or how it will affect Commission
policies, or whether the VRS decision was influenced by anything that
took place at the summit. However, NCD commends the FCC for coordinating
the summit to address possible solutions to improved access.

NCD anticipates many positive outcomes from the summit. NCD urges the
FCC and potentially other agencies to expand the use of inclusive and
interactive strategies such as this subject-based summit. These
technology-based venues expand involvement for people with disabilities
in the public policy decisionmaking process and allow them to have a
voice in issues that so profoundly affect their lives.

[]{#__RefHeading___Toc181717875 .anchor}The Assistive Technology Act

In 2006, there was a major reorganization of the three technical
assistance programs operating under the AT Act: (1) statewide AT
programs, (2) the Protection and Advocacy for Assistive Technology
Program, and (3) the Access to Telework Financial Loan Program. These
three programs have been combined to form the National Assistive
Technology Technical Assistance Partnership (NATTAP), under the auspices
of the Department of Education's Rehabilitation Services Administration.
These technical assistance projects reflect the broad scope of AT Act
activities.

NCD commends the opportunities for coordination and for information and
resource sharing that this partnership makes possible. NCD understands
that a NATTAP conference, bringing together all AT Act constituencies,
is slated for the spring of 2007. NCD commends this effort and hopes
that it will result in significant capacity building throughout the
nation.

[]{#__RefHeading___Toc181717876 .anchor}Tax Provisions

It comes as little surprise that the leaders of our nation regard tax
law as a primary vehicle for the achievement of a wide variety of
economic and even social goals. Rare in the public policy discussions of
this decade is a subject or problem that has not been deemed amenable to
tax-based intervention. Given the economic realities that surround the
development and dissemination of AT and of accessible information and
communication technology and services, NCD believes that the tax code
can play a significant role in the advancement of AT and UD as well.

NCD has made tax-related technology recommendations in previous reports.
With the recent reauthorization of the research and development (R&D)
tax credit[^134] (now the research and experimentation credit), NCD
recognizes the potential applicability of that provision to AT and UD
product and service development efforts by businesses. To ensure that
such an application of the R&D credit would be equitable and
administered with integrity, NCD recommends that Congress create a joint
Internal Revenue Service (IRS) and Access Board committee, modeled on
those used in the Section 255 and 508 contexts, to develop guidelines
for determining the activities that would qualify for the AT and UD R&D
credit and to specify the documentation that will be required to
demonstrate such qualification.

[]{#__RefHeading___Toc181717877 .anchor}Recommendations

***Recommendation 11.1:*** NCD recommends that Congress create a
national panel, with representatives drawn from government, industry,
and the disability community, tasked with identifying and recommending
specific measures to overcome barriers, such as the barriers described
in the 2006 NCD report, *Over the Horizon.*

***Recommendation 11.2:*** NCD recommends to the Access Board that,
while avoiding unnecessary duplication and including as much shared
material as possible, the revised guidelines being developed by the
TEITAAC treat Sections 255 and 508 separately, as their differing
requirements, procedural elements, and oversight and enforcement
mechanisms require.

***Recommendation 11.3:*** NCD recommends that the TEITAAC seek the
broadest possible range of input in answering the inseparable policy and
technical questions that will so heavily influence the impact of
Sections 255 and 508 in the years to come.

***Recommendation 11.4:*** NCD reiterates its strong recommendation that
the FCC issue a statement regarding its authority to apply Section 255
to what are denominated as deregulated information services, and NCD
further recommends that if the Commission determines that it lacks
statutory authority to do so, that the Commission then reach out to
Congress for the necessary legislative authorization.

***Recommendation 11.5:*** NCD recommends DOJ announce its intentions
and timetables regarding the preparation of required Section 508 reports
to Congress, and NCD further urges DOJ, in the event the Department
feels that its other heavy responsibilities prevent it from carrying out
this function in a timely manner, to ask the President to ask Congress
to transfer the responsibility to another appropriate federal entity.

***Recommendation 11.6:*** NCD recommends that the FCC initiate a
rulemaking proceeding to solicit the broadest possible input concerning
existing and potential funding streams, with a view toward drafting
regulations or making legislative proposals designed to ensure that
resources will keep up with technology in this key area.

***Recommendation 11.7:*** NCD recommends that the FCC reaffirm the
established legal standards for reviewing closed-captioning waiver
requests and that it establish procedures to ensure that the review of
such requests takes place in an open environment, with official
publication and posting, and with opportunity for public comment before
a request can be granted.

***Recommendation 11.8:*** NCD urges the FCC and potentially other
agencies to expand the use of inclusive and interactive strategies such
as a subject-based summit, and to expand the use of techniques such as
Web casting, as tools to involve people with disabilities as fully as
possible in the public policy decisions that so profoundly affect their
lives.

***Recommendation 11.9:*** NCD recommends that Congress create a joint
IRS and Access Board committee to develop guidelines to determine the
activities that would qualify for the AT and R&D tax credit and to
specify the documentation that will be required to demonstrate such
qualification.

[]{#refheading___toc181717878 .anchor}Chapter Twelve: International
Affairs

[]{#__RefHeading___Toc181717879 .anchor}Introduction

This chapter deals with a number of developments occurring in the
international arena during 2006 that are of particular importance to
disability policy in this country and in the world. The chapter begins
with a discussion of the historic U.N. Convention on the Rights of
Persons with Disabilities. It then discusses international efforts to
respond to communications accessibility and efforts by the Organization
of American States (OAS) to harness the expertise of groups working in
the area of disability policy. Following this, the chapter discusses the
work of the U.S. Department of State to address disability-related
concerns. Finally, the chapter deals with interconnected legal and
technology design issues that have arisen in the implementation of
accessibility standards in recent years.

[]{#__RefHeading___Toc181717880 .anchor}The U.N. Convention

In December 2006, the U.N. General Assembly adopted the Convention on
the Rights of Persons with Disabilities.[^135] The treaty was opened for
signature by member nations beginning in March 2007 and will come into
effect once ratified by 20 countries.

The treaty is comprehensive, dealing with matters ranging from the right
to life to health care, employment, participation, nondiscrimination,
and other access and equality goals. For those interested in gaining a
fuller sense of all the Convention's provisions, previous NCD papers and
statements marking the development of the Convention, explaining its
provisions, and clarifying potential misunderstandings regarding its
terms and implications are recommended.

To many, the decision by the United States to not sign the U.N.
Convention is disappointing. NCD has made clear its belief that the
United States should sign, and more important, has outlined its reasons
for this belief.[^136] Several points about the post-Convention world
are worth addressing. In this regard, although the United States will
not be a signatory to the treaty, American experience and American law
contributed significantly to its development and final form. As noted in
last year's NCD progress report, numerous briefings on American
approaches and American law were prepared for the committee drafting the
Convention. The impact of American law, and even more powerfully, the
impact of America's example can be felt in the words and the spirit of
the Convention. NCD hopes and believes that once the Convention goes
into effect experience will, in the course of time, calm the fears and
suspicions currently shadowing it.

[]{#__RefHeading___Toc181717881 .anchor}Global Initiative

The International Day of Disabled Persons (IDDP), observed in December,
has a chosen theme or issue each year, and those involved seek to
increase awareness and to galvanize effort around it. The issue chosen
in 2006, for what came to be known as e-Accessibility Day, was access to
technology and, in particular, to the Internet.[^137]

In connection with this observance, several elements of primary
importance emerged. By selecting technology and communications access as
its theme, this year's IDDP drew attention to the international nature
of communications access for people with disabilities. The international
nature and implications of the Internet---in terms of regulation,
language, censorship, technology standards, costs, encryption, and other
matters---have been long and widely discussed. Now the status of people
with disabilities, as an element of these discussions, has been raised
to a previously unprecedented level of awareness.

Time will tell what will be the long-term effects of the IDDP. At the
very least, it is safe to say that, to the extent nations rely on
technology for their economic development or for the conduct of their
institutions, they must be more aware than ever that failure to
incorporate people with disabilities into the development of these
communications infrastructures carries with it a substantial long-term
cost.

[]{#__RefHeading___Toc181717882 .anchor}The Organization of American
States

NCD commends the work of the OAS in its adoption of the Inter-American
Convention on the Elimination of All Forms of Discrimination Against
Persons with Disabilities, and on its efforts to implement that
Convention. Specifically, NCD notes the organization's outreach efforts
in requesting input from civil-society organizations that work on issues
related to people with disabilities.[^138] The OAS has invited comments
from such agencies in connection with the work of creating the initial
documentation involved in establishing the Committee for the Elimination
of All Forms of Discrimination Against Persons with Disabilities
provided for in the Convention.

NCD believes that regional efforts of this kind can prove valuable in
responding to the economic and social conditions in this hemisphere. NCD
recommends that the Department of State, the U.S. Agency for
International Development (USAID), and other Federal Government entities
and partners involved in multinational, hemispheric, and regional
development efforts do all in their power to encourage and facilitate
the participation of U.S. nonprofit, private sector, voluntary, and
faith-based organizations in the work of the new committee. NCD
recommends that the United States explore ways to encourage similar
regionally based efforts and to support such efforts with culturally
sensitive technical assistance resources.

[]{#__RefHeading___Toc181717883 .anchor}Involving People with
Disabilities In Policymaking

In 2004, the Department of State and USAID established the Advisory
Committee on Persons with Disabilities to advise both agencies on issues
of concern to people with disabilities in the development and
implementation of American foreign policy. NCD has commended this effort
and appreciates the efforts made to further expand the process,
including the holding of public meetings.[^139]

NCD is eager to learn more about how this process has worked and,
subject to applicable principles of confidentiality, to gain some sense
of how this advisory committee has contributed to foreign policy
decisions or practices. To derive possible lessons from the process, NCD
recommends that the sponsoring agencies issue a report indicating their
views on how and how well the Advisory Committee has assisted them, and
setting forth such views as the agencies or the committee members may
have on how this advisory process can be made more effective and can be
extended to the foreign policy-related activities of other federal
entities, including the Department of Commerce, the U.S. Trade
Representative, Immigration and Customs Enforcement, and other agencies.

[]{#__RefHeading___Toc181717884 .anchor}Trade and Commerce

Two years ago, in the *Spector* case,[^140] the Supreme Court ruled that
the Americans with Disabilities Act applied to foreign cruise ships
operated into and out of American ports. This decision represents one of
many illustrations of the ways in which national and international law
are affecting and complicating the design of products and services. No
longer can a foreign-flag cruise line, designing and building its ships
far from the United States, ignore U.S. accessibility design
requirements, that is, if the vessel is to serve U.S. customers.

Many other illustrations of this type of interaction can be found. For
example, televisions sold in this country must comply with the legal
requirements for inclusion of closed-caption decoder chips, no matter
where the television is manufactured. Electronic and information
technology purchased by federal agencies for their own use must comply
with the accessibility requirements of Section 508 of the Rehabilitation
Act, even if some of the components were manufactured or assembled
abroad. Telephones sold in the United States must comply with the
accessibility requirements of Section 255 of the Telecommunications Act,
regardless of where they were manufactured.

Similar issues are now arising in the area of services. For instance,
many companies required to have teletypewriter (TTY) options available
as part of their customer service programs now outsource that customer
service to various foreign nations. Anecdotal reports suggest that
questions have arisen regarding the sufficiency of TTY or other
auxiliary aids and services in many of these customer service
operations.

The range of issues presented in the devices and services realms is
broad. Among the questions requiring systematic evaluation and answers
are those such as which U.S. laws apply and how overseas entities can
reliably learn about them, or what redress is available for Americans
when outsourced or out-of-country network services do not comply with
the law. Accordingly, NCD recommends that the President appoint a
blue-ribbon national commission, with the Department of State as the
lead agency. This commission should review the range of situations in
which accessibility requirements may come into play in the
administration of foreign assistance or the management of international
trade. The commission should make recommendations for the clarification
of responsibilities, rights, and sources of authoritative information
and assistance to resolve all issues that may arise in connection with
outsourced services provided by entities covered by the ADA.

[]{#__RefHeading___Toc181717885 .anchor}Recommendations

***Recommendation 12.1:*** NCD recommends that the Department of State,
USAID, and other Federal Government entities and partners involved in
multinational, hemispheric, and regional development efforts do all in
their power to encourage and facilitate the participation of U.S.
nonprofit, private sector, voluntary, and faith-based organizations in
the work of the new committee. NCD recommends that the United States
explore ways to encourage similar regionally based efforts and to
support such efforts with culturally sensitive technical assistance
resources.

***Recommendation 12.2:*** NCD recommends that the sponsoring agencies,
the Department of State and USAID, issue a report indicating their views
on how and how well the advisory committee has assisted them. This
report should set forth such views as the agencies or the committee
members may have on how this advisory process can be made more effective
and on how it can be extended to the foreign policy--related activities
of other federal entities, including the Department of Commerce, the
U.S. Trade Representative, Immigration and Customs Enforcement, and
other agencies.

***Recommendation 12.3:*** NCD recommends that the President appoint a
blue-ribbon national commission, with the Department of State as the
lead agency. This commission should review the range of situations in
which accessibility requirements may come into play in the
administration of foreign assistance or the management of international
trade. The commission should make recommendations for the clarification
of responsibilities, rights, and sources of authoritative information
and assistance to resolve all issues that may arise.

[]{#__RefHeading___Toc181717886 .anchor}Chapter Thirteen: Homeland
Security

[]{#__RefHeading___Toc181717887 .anchor}Introduction

In the past five years the term "homeland security" has changed from an
abstract concept to one with multiple meanings that depend on how it is
applied to everyday life circumstances. We came to understand homeland
security in relation to the risk of terrorism. Then we came to recognize
that natural disasters, too, such as those resulting from hurricanes,
came within the homeland security domain. Most recently, there has been
yet a further expansion of the concept, as we have come to know that
pandemic disease also needs to be seen as a threat to our homeland
security. And the time may be near when long-term climate change will
take its place along with the others in the growing pantheon of
concerns.

This chapter addresses a number of issues and developments from 2006
that highlight the specific ways in which homeland security affects the
lives of people with disabilities. Emergency preparedness and
communication, disaster relief, and other elements of homeland security
are critical issues in all our lives, but for people with disabilities,
they frequently present different issues and have varying effects than
may at first be apparent.

The chapter examines the litigation that resulted in an agreement by the
Federal Government to provide accessible trailers to displaced Gulf
Coast residents. It also recommends ways that litigation to achieve such
basic access rights can be avoided in the future.

Beyond disaster relief, the chapter addresses issues surrounding the
inclusion of people with disabilities in the rebuilding process, and
recounts some of the observations of organizations that have been
involved in consortium relief and renewal efforts.

To create a context for full discussion of the issues and to assess
their relative impact, the chapter describes the scope of interwoven
issues involved in the effort to restore normal life.

Finally, the chapter reviews recent Federal Communications Commission
(FCC) enforcement action in the area of emergency broadcast
communications and makes suggestions for methods to ensure that
television stations across the country comply with crucial standards for
information accessibility in times of emergency.

[]{#__RefHeading___Toc181717888 .anchor}Accessible Trailers

For many survivors of Hurricanes Katrina and Rita, the need to live in
temporary housing has gone on longer than they could have imagined. For
many, return to a permanent home still is not imminent, and for many, a
Federal Emergency Management Agency (FEMA) trailer provides the only
option for them to return to their home areas while waiting for
permanent housing to be built or rehabilitated.

For many people with disabilities, the privations of living in a trailer
have been exacerbated by accessibility problems. A federal class action
lawsuit, settled in September 2006,[^141] provided documentation of the
problem and established procedures for its remedy.

NCD commends FEMA and the Department of Homeland Security (DHS) for
undertaking the task to identify and meet the accessibility needs of
evacuees and temporary housing tenants. To prevent such situations from
recurring, however, NCD recommends that FEMA and DHS develop plans for
anticipating and preparing to meet disability-related needs in other
postdisaster activities and settings. It should not take a lawsuit to
bring such issues to the attention of federal authorities and to bring
about action. With the proper planning and outreach to the disability
community, NCD is confident that such delays in responding to serious
needs will not recur.

[]{#__RefHeading___Toc181717889 .anchor}The Rebuilding Process

If we have learned anything in the past few years, it is that decisions
about the nature of disaster relief measures and about the resources to
be provided must be made before the disaster occurs. Whether from the
standpoint of prevention, or from the perspective of damage limitation
and hastened recovery, we have learned that preparedness is key to our
efforts. In January 2006, in the wake of the Gulf Coast tragedy, the
then chair of NCD wrote:

As we forge ahead with recovery and reconstruction in the aftermath of
Hurricanes Katrina and Rita, we have the opportunity and the duty as a
nation to establish facilities and communities that are fully accessible
to all without the barriers that currently divide the landscape into a
patchwork of islands of access for people with disabilities.

The National Council on Disability urges those who are rebuilding
communities and restoring lives to include people with disabilities in
all stages of disaster relief, future disaster preparedness, and
recovery and reconstruction operations. We have a critical opportunity
to learn from our mistakes.[^142]

To create procedures and planning infrastructures that will facilitate
the participation of people with disabilities, NCD has continued to
support legislation such as the bipartisan Emergency Preparedness and
Response for Individuals with Disabilities Act of 2006,[^143] and has
endorsed the creation of state, regional, and local planning processes
and coalitions that are inclusive, both in their membership and in the
scope of their concerns.

In this connection, NCD was heartened to learn about the American Red
Cross's outreach efforts, undertaken during the summer of 2006, to
recruit and train people with relevant expertise to assist it in working
with people with disabilities in disaster planning and relief
efforts.[^144]

NCD also was pleased to learn of the participation of the National
Disability Rights Network (NDRN) in the Katrina Aid Today initiative, a
nine-organization consortium sponsored by FEMA. Reviewing the conditions
faced by hurricane survivors one year after the devastation, NDRN was
clear in its observations that far more than physical accessibility is
required if life is to regain any coherence.[^145]

[]{#__RefHeading___Toc181717890 .anchor}The Scope of the Problem

For all disaster survivors, a complex combination of issues must be
faced. These include economic, residency, interpersonal, health,
employment, and community issues.

For survivors with disabilities, the issues are the same in nature but
often different in degree and complexity. Life may have been organized
around numerous fragile arrangements, involving specialized assistance,
scarce resources, and coordinated activities and interventions, leaving
little margin for error. Often a break in the chain, like a chance event
such as the failure of a personal assistance provider to show up as
scheduled, or a paratransit ride to arrive on schedule, or an
appointment to be kept in a timely manner, can throw numerous other and
contingent details into chaos. When the underpinnings of a community
have been so fractured, when people have been scattered and resources
either destroyed or totally reoriented, the situation, including its
psychological implications, can become bleak. At a time when case
management, inclusion and self-management may be more necessary than
ever before, the resources to be managed and coordinated may be in
unprecedented short supply.

With all manner of recovery efforts believed to be slow and in disarray,
the issues faced by people with disabilities (including those who had
disabilities before the disaster and those who have acquired their
disabilities since) may best be understood as an intensified or
crystallized version of the challenges facing entire communities. In the
end, our success and capacities must be judged by our ability to address
the basic needs for sustenance, security, and community of all whose
lives are uprooted by disaster.

NCD recommends that DHS in collaboration with other key federal agencies
convene a national conference on disaster relief, reconstruction, and
assistance for people with disabilities. At this conference, the groups
involved in disaster relief and recovery work can share lessons and
experience, members and representatives of the disability community can
share their experiences and needs, and government officials and
policymakers can enter into the sort of dialog that can result in the
formulation of sound policies and programs.

[]{#__RefHeading___Toc181717891 .anchor}Emergency Communications

On November 21, 2006, the FCC levied a fine of \$12,000 on WTTG, a
Washington, DC, metro-area television station, and entered into a
consent decree settling a complaint against the station for failing to
make emergency information visually available to people with hearing
impairments during a thunderstorm/tornado alert in 2004.[^146] NCD
commends the FCC for its vigorous enforcement of the law in this case,
and congratulates the television station for the commitments embodied in
the consent decree. In particular, NCD appreciates the station's
commitment to distribute its visual information presentation policies to
all employees every six months, and to incorporate this policy in the
training of new employees.

While NCD is confident that WTTG will succeed in meeting these high
standards over time, the problem remains that for timely and effective
communication of emergency information to take place, hundreds of
television stations and their staffs must be aware of and have the
capability and the commitment to adhere to the key standards that have
been developed. Given the risks of failure, success is vital, but
monitoring is difficult or impossible.

Therefore, NCD recommends that the FCC require television stations to
periodically report on their plans and resources for making emergency
information accessible, and that accessibility be formally incorporated
into a wide variety of emergency broadcast system tests and other
simulation exercises.

The responsibility in this area should not be vested solely in the FCC.
A December 2006 Congressional Research Service (CRS) report details
legislation on emergency communications enacted since September
11.[^147] One of the major areas of concern has been the availability
and performance of emergency alert systems (EAS). Because Congress is
likely to revisit the subject of EAS each year, ample opportunity should
arise for Congress to include specific provisions regarding, or at least
to reflect consciousness of, the need for people with disabilities to be
taken into account in all EAS discussions.

[]{#__RefHeading___Toc181717892 .anchor}Recommendations

***Recommendation 13.1:*** NCD recommends that FEMA and DHS develop
plans for anticipating and meeting disability-related needs in other
postdisaster activities and settings, so that lawsuits never again will
be required to achieve basic accessibility.

***Recommendation 13.2:*** NCD recommends that DHS in collaboration with
other key federal agencies convene a national conference on disaster
relief, reconstruction, and assistance for people with disabilities, at
which the groups involved in disaster relief and recovery work can share
lessons and experience, members and representatives of the disability
community can share their experiences and needs, and government
officials and policymakers can enter into the sort of dialog that alone
will result in the formulation of sound policies and programs.

***Recommendation 13.3:*** NCD recommends that the FCC require
television stations to report periodically on their plans and resources
for making emergency information accessible, and that accessibility be
formally incorporated into a wide variety of emergency broadcast system
tests and other simulation exercises. Congress should reflect an
awareness of the needs of people with disabilities in its forthcoming
review of emergency alert systems.

[]{#__RefHeading___Toc181717893 .anchor}Appendix A: Mission of the
National Council on Disability

[]{#__RefHeading___Toc181717894 .anchor}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 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.

[]{#__RefHeading___Toc181717895 .anchor}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 in
    the Federal Government, at the 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*.

[]{#__RefHeading___Toc181717896 .anchor}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.

[]{#__RefHeading___Toc181717897 .anchor}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 education, transportation, emergency
preparedness, international disability rights, employment, foster youth
with disabilities, vocational rehabilitation, livable communities, and
crime victims with disabilities.

[]{#__RefHeading___Toc181717898 .anchor}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.

[]{#refheading___toc181717899 .anchor}Endnotes

[^1]: http://www.gao.gov/new.items/d051.pdf.

[^2]: Martin Gould, "A User's Perspective on Federal Disability Data,"
    paper presented before the American Statistical Association,
    National Council on Disability (August 17, 2006),
    http://www.ncd.gov/newsroom/testimony/2006/gould_08-06.htm.

[^3]: ACS Content Test Evaluation Report on Disability (January 2007),
    http://www.census.gov/acs/wwwAdvMeth/content.test/P4_Disability.pdf.

[^4]: For example, 109th Congress, H.R. 6258 (The Americans with
    Disabilities Act Restoration Act of 2006).

[^5]: For a discussion of planned employment-related research see *NCD
    Bulletin* (March 2006),
    http://www.ncd.gov/newsroom/bulletins/2006/b0306.htm; "Same
    Struggle, Different Difference: Civil Rights Policy Forum," Forum
    Summary Paper, NCD (March 29, 2005),
    http://www.ncd.gov/newsroom/publications/2005/forum_summary.htm;
    "Righting the ADA," NCD (December 1, 2004),
    http://www.ncd.gov/newsroom/publications/2004/righting_ada.htm.

[^6]: NCD letter to the Chair of the House Judiciary Committee's
    Subcommittee on the Constitution in connection with its ADA
    oversight hearing (September 20, 2006),
    http://www.ncd.gov/newsroom/correspondence/2006/chabot_09-20-06.htm.

[^7]: "Righting the ADA," *supra* note 4; see also Nancy Lee Jones, "The
    Americans with Disabilities Act (ADA): The Definition of
    Disability," Congressional Research Service, CRS Order Code RL 33304
    (March 9, 2006).

[^8]: See Nancy Lee Jones, "Americans with Disabilities Act."

[^9]: See "Righting the ADA," *supra* note 4.

[^10]: Compare *Garrett v. Board of Regents, University of Alabama*, 531
    US 356 (2001) with *Tennessee v. Lane*, 541 US 509 (2004).

[^11]: 109th Congress, S. 3823 Sec. 4.

[^12]: *Creating Livable Communities* (Washington, DC: NCD, October 31,
    2006),
    http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm.

[^13]: See *Disability Rights Online News*, Issue 14 (August 2006),
    http://www.usdoj.gov/crt/ada/newsltr0806.htm.

[^14]: For example, *United States v. AMC Entertainment, Inc.*
    (government brief),
    http://www.usdoj.gov/crt/ada/briefs/amcptaubr.doc (government's
    brief); see also *United States v. National Amusements, Inc.* (No.
    00-12568) (January 9, 2006), http://www.ada.gov/national.htm.

[^15]: *University of Iowa School of Law, Disability Law and Policy
    E-Newsletter* 3, no. 23 (December 1, 2006),
    http://disability2.law.uiowa.edu/bbs/showthreaded.php/Cat/0/Number/1479/an/0/page/0#Post1479.

[^16]: "When the Americans with Disabilities Act Goes Online:
    Application of the ADA to the Internet," NCD (2003),
    http://www.ncd.gov/newsroom/publications/2003/adainternet.htm.

[^17]: *United States v. TicketMaster* (settlement agreement, December
    22, 2005), *Disability Rights Online News*, Issue 11 (February
    2006), http://usdoj.gov/crt/ada/newsltr0206.htm.

[^18]: *PGA Tour v. Martin*, 532 US 661 (2001).

[^19]: *American Council of the Blind v. O'Neill* (Civil Action 02-0864
    (JR), F. Supp. 2d D.D.C.,(November 28, 2006),
    http://www.dc.uscourts.gov/opinions/.

[^20]: This is one of many cost estimates issued by stakeholders. We
    have found no items in the press purporting to place a dollar value
    on the benefits or current costs of inaccessibility.

[^21]: NCD has discovered no persuasive analysis of how "undue burden"
    defenses mounted by the Federal Government should be evaluated. To
    the suggestion that the size and budget of the agency should be
    primary factors, the counterargument has been made that agency
    budgets are within the control of Congress. If a court were to
    assess damages against a federal agency, such as the Treasury, for
    civil rights violations or for wrongful death in a tort action, or
    if the court were to order remedial action as it did here, the
    agency would not be able to avoid liability or responsibility by
    claiming that Congress had not appropriated the necessary funds.

[^22]: "NCD Statement: Voluntary Voting System Guidelines" (June 23,
    2006),
    http://www.ncd.gov/newsroom/publications/2006/voluntary_voting.htm.

[^23]: "Justice Department Sues New York State over Voting Rights"
    (March 1, 2006),
    http://www.usdoj.gov/opa/pr/2006/March/06_crt_108.html.

[^24]: P.L. 109-246.

[^25]: NCD letter to the Chair and Ranking Minority Member, Senate
    Committee on the Judiciary (July 27, 2006),
    http://www.ncd.gov/newsroom/correspondence/2006/specter_07-27-06.htm.

[^26]: "The Civil Rights of Institutionalized Persons Act: Has it
    Fulfilled its Promise?" NCD (August 8, 2005),
    http://www.ncd.gov/newsroom/publications/2005/personsact.htm.

[^27]: NCD letter to the Honorable Tom Davis, Chair, House Committee on
    Government Reform (June 30, 2006),
    http://www.ncd.gov/newsroom/correspondence/2006/davis_06-30-06.htm.

[^28]: P.L. 108-446 (The Individuals With Disabilities Education
    Improvement Act of 2004).

[^29]: *Federal Register* (August 14, 2006), http://idea.ed.gov.

[^30]: See letter of John H. Hager, Assistant Secretary of Education,
    announcing release of IDEA Part B regulations and noting public
    comment process, *Justice For All Archives*, Article No. 2885
    (August 18, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2885.

[^31]: See "States Await Special Education Testing Rule," *Education
    Week* (December 14, 2005). As indicated in NCD's 2005 status report,
    the Department of Education was expected to revise this rule on a
    permanent basis. NCD has been unable to determine the Department's
    decisions in this regard.

[^32]: The OSERS IDEA resources Web page,
    http://www.ed.gov/policy/speced/guid/idea/idea2004.html; see
    generally, Richard N. Apling and Nancy Lee Jones, "Individuals with
    Disabilities Education Act (IDEA): Analysis of Changes Made by P.L.
    108-446," Congressional Research Service, CRS Order Code RL 32716
    (January 5, 2005).

[^33]: "Questions and Answers on Serving Children with Disabilities
    Placed by Their Parents at Private Schools,"
    http://www.ed.gov/policy/speced/guid/idea/idea2004.html.

[^34]: 34 CFRIEND Sec. 300.172.

[^35]: "Over the Horizon: Potential Impact of Emerging Trends in
    Information and Communication Technology on Disability Policy and
    Practice," NCD (December 26, 2006),
    http://www.ncd.gov/newsroom/publications/2006/emerging_trends.htm;
    see also "The Need for Federal Legislation and Regulation
    Prohibiting Telecommunications and Information Services
    Discrimination," NCD (December 28, 2006),
    http://www.ncd.gov/newsroom/publications/2006/discrimination.htm.

[^36]: "Students with Mental Retardation Make Gains in the Classroom,"
    *Justice For All Archives*, Article No. 2924 (October 5, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2924.

[^37]: *Winkelman v. Parma City School District*, F. 3d (6th Cir. 2006),
    on appeal to the U.S. Supreme Court, No. 05-983.

[^38]: "NCD Speaks Out on Supreme Court *Winkelman v. Parma City School
    District* Case," NCD News Release No. 07531 (February 26, 2007),
    http://www.ncd.gov/newsroom//news/2007/r07-531.htm.

[^39]: Compare *Golin v. Allenby*, F. 3d (No. 04-15900, 9th Cir. 2005).

[^40]: See
    http://www.ed.gov/policy/highered/guid/secletter/0603011.html.
    Despite several accounts seeming to characterize this as a new
    provision, teacher loan forgiveness has existed in the law
    previously.

[^41]: "Principles for the Reauthorization of No Child Left Behind,"
    Consortium for Citizens with Disabilities, Education Task Force,
    *Justice For All Archives*, Article No. 2913 (September 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2913.

[^42]: Dave Reynolds, "Teachers, and Parents Support School Board's
    Inclusion Plan," *Inclusion Daily Express* (December 6, 2006),
    http://www.inclusiondaily.com/archives/06/12/06/120606flinced.htm;
    see also Rhonda J. Miller, "Board Hunts for \$17 Million; District
    Wants Students with Disabilities in Regular Classroom," *South
    Florida Sun-Sentinel* (December 7, 2006).

[^43]: *United States v. University of Chicago* (settlement agreement
    July 17, 2006), *Disability Rights Online News*, Issue 15 (October
    2006), http://www.usdoj.gov/crt/ada/newsltr1006.htm.

[^44]: Jodi S. Cohen, "University of Chicago Deal is Part of Crackdown
    by U.S.," *Chicago Tribune* (September 8, 2006), *Justice For All
    Archives*, Article No. 2896,
    http://www.jfanow.org/jfanow/index.php?mode=a&id=2896.

[^45]: Ibid.

[^46]: Compare, "Using the Medicaid and Medicare Work Incentives to
    Retain a Funding Source for Assistive Technology and Other Key
    Service" (Fall 2006), http://www.nls.org/av/late-fall06.htm, with
    "Strategies to Help States Address Increased Expenditures During
    Economic Downturns," U.S. Government Accountability Office,
    GAO-07-97 (October 18, 2006).

[^47]: "CMS News: Effort to Combat Medicaid Fraud and Abuse Launched,"
    *Justice For All Archives*, Article No. 2846 (July 19, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2846.

[^48]: "Final Report of the National Medicaid Commission" (December 29,
    2006), http://aspe.hhs.gov/medicaid/. For a variety of articles and
    analyses of the work of the national Medicaid commission, see
    http://www.aapd.com/News/commission/indexmedcomm.php. One member of
    the commission voted against its managed care recommendations,
    noting there was no evidence to demonstrate that managed care of
    beneficiaries with disabilities is less costly. NCD believes that
    only if controlled research is done, involving matched pairs of
    people with similar medical histories, diagnoses, access to care,
    and care needs, can the economic case for managed care be proved or
    refuted. A Commonwealth Fund report cited in the November 30, 2006,
    *Kaiser Daily Health Policy Report* concludes that per capita costs
    for people in Medicare managed care actually exceed those for
    beneficiaries in fee-for-service plans. See "Federal Government's
    Costs for Medicare Beneficiaries Enrolled in Managed Care Plans 12.4
    Percent Greater Than for Those in Fee-For-Service Plans, According
    to Study," http://www.kaisernetwork.org/daily_reports (requires
    log-in to access).

[^49]: See "Improving Access to Integrated Care for Beneficiaries Who
    Are Dually Eligible for Medicare and Medicaid," CMS Release,
    *Justice For All Archives*, Article No. 2856 (July 27, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2856.

[^50]: *Supra* note 47.

[^51]: P.L. 109-171, Sec. 6071.

[^52]: "Money Follows the Person---One State's Data," *Info. Bulletin*
    no. 109 (May 15, 2006), http://www.stevegoldada.com*.*

[^53]: See review of work done by demographers at the University of
    California-San Francisco, Andrew Schwartz, "School of Nursing Stat
    Mavens Make Numbers Tell the Truth" (June 15, 2006),
    http://pub.ucsf.edu/today/cache/feature/200606149.html.

[^54]: See "Change is Happening: Look at FY 2005 MA Expenditures,"
    *Info. Bulletin* no. 117 (July 6, 2006),
    http://www.stevegoldada.com.

[^55]: *Supra* note 50, Sec. 6087. For background information on cash
    and counseling, visit http://www.cashandcounseling.org.

[^56]: Ibid.

[^57]: NCD is not familiar in detail with the work of the Cash and
    Counseling National Program Office at the Boston College School of
    Social Work, but the Council does not suggest duplication of any
    ongoing work being done by this project.

[^58]: "Important Changes to Wheelchair Coverage Policy---Access
    Concerns Remain," Item Coalition, Medicare Action Alert, *Justice
    for All Archives*, Article No. 2966 (November 10, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2966 (including
    summary of recent developments in CMS-powered mobility rules).

[^59]: Ibid.

[^60]: 109th Congress, S. 3677.

[^61]: *Federal Register* 68 Fed. Reg. 63691 at 63699.

[^62]: For example, "Medicare Prescription Drug Benefit: 2007 Annual
    Coordinated Election Period," CMS Open Door Forum Announcement,
    *Justice for All Archives*, Article No. 2962 (November 8, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2962.

[^63]: See http://www.cms.hhs.gov/HealthCareConInit/.

[^64]: "Medicare Seeks Proposals for Senior Risk Reduction
    Demonstration," *Medicare News*, CMS Office of Media Affairs (August
    21, 2006),
    http://www.cms.hhs.gov/apps/media/press/release.asp?counter=1949.

[^65]: The Tax Relief and Health Care Act of 2006, P.L. 109-432, Sec.
    115 (parity extended for one year).

[^66]: *Livable* *Communities for Adults with Disabilities* (Washington,
    DC: NCD, December 2, 2004),
    http://www.ncd.gov/newsroom/publications/2004/Livablecommunities.htm.

[^67]: "The State of 21st Century Long-Term Services and Supports:
    Financing and Systems Reform for Americans with Disabilities," NCD
    (December 15, 2005),
    http://www.ncd.gov/newsroom/publications/2005/longterm_services.htm.

[^68]: *Creating Livable Communities* (Washington, DC: NCD, October 31,
    2006),
    http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm;
    compare "The Social Security Administration's Efforts to Promote
    Employment for People with Disabilities: New Solutions for Old
    Problems," NCD (November 30, 2005),
    http://www.ncd.gov/newsroom/publications/2005/ssa-promoteemployment.htm.

[^69]: These two provisions created the waiver programs under which
    states could seek federal approval to deviate from
    otherwise-applicable Medicaid rules.

[^70]: *Olmstead v. L.C.*, 527 US 581 (1999).

[^71]: *Supra* note 52.

[^72]: *Supra* note 47.

[^73]: *Supra* note 50.

[^74]: P.L. 109-365, Secs. 408-409 (Older Americans Act Amendments of
    2006).

[^75]: P.L. 109-171, Sec. 6087.

[^76]: Supported by a public-private partnership of Department of Health
    and Human Services (HHS) and Robert Wood Johnson Foundation funds,
    the Cash and Counseling program is being formally evaluated.
    According to the Cash and Counseling National Program Office at
    Boston College, Mathematica Policy Research Inc. found positive
    initial results before expansion of the program in 2006.

[^77]: P.L. 109-171, Sec. 6021.

[^78]: *Supra* note 66.

[^79]: "Overview: The Next Generation Roundtable 2006," Youth Advisory
    Council of the National Council on Disability (July 2006),
    http://www.ncd.gov/newsroom/advisory/youth/yac_roundtable.htm.

[^80]: Ibid.

[^81]: http://www.nyln.org.

[^82]: Ibid.

[^83]: See Fall 2006 Newsletter, Ibid.

[^84]: See http://www.helpingamericasyouth.gov.

[^85]: For example, Wendy Koch, "No State Fully Compliant with
    Child-welfare Standards," *USA Today* (January 18, 2006) (citing
    DHHS findings).

[^86]: In many different words, this is a recurrent theme emerging from
    all the youth forums and discussions mentioned above.

[^87]: P.L. 105-220.

[^88]: Go to www.doleta.gov/youth_services/rfpguide.cfm to find DOL's
    WIA Youth Request for Proposal (RFP) Guide. Other Department of
    Labor efforts by the Office of Disability Employment Policy (ODEP),
    such as support for youth employment mentoring efforts, also deserve
    commendation. See "First Ever Conference on Mentoring Youth with
    Disabilities," ODEP Announcement, *Justice For All Archives*,
    Article No. 2822 (June 19, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2822.

[^89]: Approximately a dozen NCD employment issue briefs are being
    developed in connection with the forthcoming employment report.

[^90]: NCD Financial Incentives Study (forthcoming in fall 2007).

[^91]: For a broad overview of the data, go to http://www.
    http://www.aapd-dc.org/index.php; see also Kris Maher, "Disabled
    Face Scarcer Jobs, Data Show," *Wall Street Journal* (October 5,
    2005) (citing findings from Cornell research).

[^92]: *Supra* note 88.

[^93]: For example, "Announcement of EEOC Public Meeting on Employment
    in the Federal Government," *Justice For All Archives*, Article No.
    2824 (June 28, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2824.

[^94]: Allen Jensen and Robert Silverstein, "Policy Proposals for
    Improving SSDI, SSI and Medicaid Work Incentives," *Justice For All
    Archives*, Article No. 2744 (April 4, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2744.

[^95]: Internal Revenue Code (IRC) Sec. 51.

[^96]: P.L. 108-173.

[^97]: "Social Security---Work Incentives Planning and Assistance
    Program (SSA) Work Incentives Planning and Assistance (WIPA)
    Program," Social Security Administration, *Justice For All
    Archives*, Article No. 2791 (May 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2791.

[^98]: For an excellent overview of work incentive provisions, see Edwin
    J. Lopez-Soto and James R. Sheldon Jr., eds., *Benefit Times
    Management for Working People with Disabilities: An Advocate's
    Manual* (Rochester, NY: Empire Justice Center, rev. ed. 2007),
    http://www.nls.org/tocplanr.htm.

[^99]: "Issue Brief: The Basics of the National Council on Disability's
    Social Security Report: The Social Security Administration's Efforts
    to Promote Employment for People with Disabilities: New Solutions
    for Old Problems," NCD (2005),
    http://www.ncd.gov/newsroom/publications/2005/ssa-promoteemployment.htm;
    see also "A Disability System for the 21st Century," Social Security
    Advisory Board (September 2006),
    http://www.ssab.gov/documents/disability-system-21st.pdf; compare,
    109th Congress: H.R. 276.

[^100]: *Supra* note 89.

[^101]: Ibid.

[^102]: "Announcement of Scholarship Program for College Students with
    Disabilities" (a project of the Washington Center for Internships
    and Academic Seminars and the Department of Labor's ODEP, designed
    to "help increase employment for students with disabilities through
    an academic internship program"), *Justice For All Archives*,
    Article No. 2839 (July 5, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2839; see also
    "ODEP Announces Cooperative Agreement for Research Consortium to
    Design Methodology and Conduct Case Studies: Employment of
    Individuals with Disabilities: Department Announces Cooperative
    Agreement for Research Consortium to Design Methodology and Conduct
    Case Studies" (ODEP announcement of availability of funding for a
    cooperative agreement "for a Research Consortium to develop a
    standard design methodology and conduct case study research to
    identify ways in which an organization's structures, values,
    policies and day-to-day practices, facilitate the employment of
    people with disabilities"), *Justice For All Archives*, Article No.
    2785 (May 13, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2785; also,
    "Announcement of Cornell University's Rehabilitation Research and
    Training Center on Employment Policy for Persons with Disabilities,
    and the American Association of People with Disabilities' (AAPAID),
    and Georgetown Law School's Workplace Flexibility 2010 Forum:
    Workers with Disabilities: The Role of Workplace Flexibility, A
    Forum on Policy and Practice," *Justice For All Archives*, Article
    No. 2960 (November 13, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2960.

[^103]: Precisely because we understand that employer attitudes
    represent the greatest barrier to employment, the failure of
    research to address the persistence of negative attitudes represents
    a major gap in our knowledge. After years of technical assistance,
    employer education and outreach, and even the positive experience of
    so many companies, we know little about what works and why, and we
    have little data on the cost-effectiveness or instrumentality of
    current advocacy and education techniques compared with others that
    might be used or compared or in concert with aggressive enforcement
    of the law.

[^104]: See "EEOC Moves to Stem Decline in Disabled Workforce," *Justice
    For All Archives*, Article No. 2927, (October 6, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2927.

[^105]: *Supra* note 92.

[^106]: *Supra* note 103.

[^107]: Principally, these would be the General Services Administration
    (GSA), the Department of Justice (DOJ), the Office of Management and
    Budget (OMB), and, ultimately, pursuant to a congressional research
    request, the Government Accountability Office (GAO).

[^108]: See "Letter from NISH \[National Industries for the Severely
    Handicapped\]" (responding to charges regarding mismanagement in the
    Javits-Wagner-O'Day program made in the press and at a Senate
    Health, Education, Labor and Pensions Committee hearing), *Justice
    For All Archives*, Article No. 2728 (March 12, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=a&id=2728; see also
    Bryan Denson, Jeff Kosseff, and Les Zaitz, "Congress Aims to Fix Job
    Program for Disabled" (reviewing developments in the controversy
    over the program) (November 27, 2006),
    http:**//**www.newhousenews.com/archive/denson112706.html.

[^109]: P.L. 104-193.

[^110]: The IDA provisions of the new law, if not the old.

[^111]: 109th Congress, S. 3863.

[^112]: IRC Sec. 42.

[^113]: "The Low-Income Housing Tax Credit: A Framework for Evaluation,"
    Congressional Research Service, CRS Order Code RL 33904 (March 7,
    2007).

[^114]: For example, *Three Rivers Center for Independent Living v. the
    Pittsburgh Housing Authority* (settlement agreement, November 20,
    2006); see
    http://www.stevegoldada.com/stevegoldada/archive.php?mode=A&id=185;&sort=D;
    see also "Reasonable Accommodations and Federally-Funded Housing,"
    (August 21, 2006),
    http://www.stevegoldada.com/stevegoldada/archive.php?mode=A&id=171;&sort=D*;*
    see generally, "Information on the Roles of HUD, Public Housing
    Agencies, Capital Markets, and Service Organizations," U.S.
    Government Accountability Office, GAO-06-419T (February 15, 2006).

[^115]: See "Program Announcement: Money Follows the Person Rebalancing
    Demonstration," CMS (July 26, 2006),
    http://www.cms.hhs.gov/NewFreedomInitiative/downloads/MFP_2007_Announcement.\
    pdf.

[^116]: For an update on human services transportation programs under
    the reauthorized federal transportation legislation, see "FTA
    Publishes Draft Circulars for Human Service Programs," *Justice For
    All Archives*, Article No. 2902 (September 11, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2902; see
    generally, United We Ride, http://www.unitedweride.gov.

[^117]: "Progress Report: Implementation of Executive Order 13330,
    February 2005--February 2007," United We Ride (February 2007),
    http://www.unitedweride.gov/UWRProgress_report2005-20072_2_07.doc.
    This report includes an update and overview of the work of the
    Federal Interagency Coordinating Council on Access and Mobility.

[^118]: P.L. 109-59.

[^119]: "Federal Transit Administration: Progress Made in Implementing
    Changes to the Job Access Program, but Evaluation and Oversight
    Processes Need Improvement," U.S. Government Accountability Office
    GAO-07-43 (November 17, 2006); see also "Getting To Work: The Need
    for Reliable and Accessible Transportation Employment," Issue Brief
    No. 8, National Council on Disability (forthcoming).

[^120]: *Spector et al. v. Norwegian Cruise Line Ltd.*, US (2005), No.
    03-1338, http://www.admiraltylawguide.com/supct/Spector.pdf.

[^121]: *Supra* note 14.

[^122]: "NCD Position Paper on Access to Airline Self-Service Kiosk
    Systems," NCD (May 17, 2006),
    http://www.ncd.gov/newsroom/publications/2006/kiosk.htm.

[^123]: 69 *Federal Register* 64363-64395 (November 4, 2004) (this NPRM
    covers a broad range of updates to 14 CFRIEND Part 382, the
    regulations implementing the ACAA).

[^124]: Ibid.

[^125]: *Supra* note 34.

[^126]: "Disability and the Digital Divide: Comparing Surveys with
    Disability Data," RTC Rural Institute, University of Montana (June
    2006), http://rtc.ruralinstitute.umt.edu/telcom/divide.htm.

[^127]: *Supra* note 34.

[^128]: 47 U.S.C. Sec. 255; 36 CFRIEND Part 1193.

[^129]: 29 U.S.C. Sec. 794d; 36 CFRIEND Part 1194.

[^130]: Revisions of the governing regulations are expected to be
    proposed during 2007.

[^131]: 65 *Federal Register* 80,500 at 80,504 (December 21, 2000)
    (preamble to the Access Board's Final Rule implementing Sec. 508).

[^132]: FCC Consumer and Government Affairs Bureau (CGB), DA No. 06-1802
    (September 11, 2006),
    http://fjallfoss.fcc.gov/edocs_public/attachmatch/DA-06-1802A1.pdf.

[^133]: The FCC E-9-1-1 summit on November 15, or the applications for
    waivers.

[^134]: IRC Sec. 41.

[^135]: "NCD Commends Adoption of UN Convention on the Rights of People
    with Disabilities," NCD (December 18, 2006),
    http://www.ncd.gov/newsroom/news/2006/r06-527.htm.

[^136]: "Update on the UN Convention on the Rights of People with
    Disabilities," NCD (April 17, 2006),
    http://www.ncd.gov/newsroom/publications/2006/un_convention.htm.

[^137]: "UN Celebration of International Day of Disabled Persons,"
    *Justice For All Archives*, Article No. 2986 (December 11, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2986.

[^138]: See "Opportunity for Disability Groups Internationally" (letter
    from the Committee on Juridical and Political Affairs \[CAJP\] of
    the OAS \[Organization of American States\] Permanent Council,
    requesting that civil society organizations working on issues
    related to people with disabilities submit their comments and
    recommendations with respect to the establishment of the Committee
    provided for in the Inter-American Convention on the Elimination of
    All Forms of Discrimination against Persons with Disabilities),
    *Justice For All Archives*, Article No. 2963 (November 8, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2963.

[^139]: See "U.S. Department of State and U.S. Agency for International
    Development Announcement," Meeting of Advisory Committee on Persons
    with Disabilities, Article No. 2757, *Justice For All Archives*
    (April 21, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2757.

[^140]: *Supra* note 119.

[^141]: *Brou v. FEMA* (No. 06-0838, E.D.La. 2006),
    http://www.fema.gov/plan/prepare/specialplans.shtm.

[^142]: "Involve People with Disabilities in Relief Plans: Let's Learn
    From Our Mistakes Before the Next Disaster Strikes" (statement by
    NCD Chair Lex Frieden), *Justice For All Archives*, Article No. 2668
    (January 9, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2668.

[^143]: 109th Congress, H.R. 4704/S. 2124.

[^144]: "American Red Cross Wants Your Input on Emergency Preparedness:
    Tell Us What You Think, Provide Input into Emergency Preparedness
    Education for People with Disabilities" (announcement of a joint
    American Red CROSS and COULDC \[Centers for Disease Control and
    Prevention\] effort to gather information on a number of emergency
    preparedness and response-related issues including preparedness
    involving people with disabilities), *Justice For All Archives*,
    Article No. 2810 (June 9, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2810.

[^145]: "One Year Later, People with Disabilities Still Left in Wake of
    Hurricane Katrina," National Disability Rights Network (August 28,
    2006), http://www.napas.org/media/pr/060828.htm.

[^146]: "In the Matter of WTTG-TV," FCC press release, *Justice For All
    Archives*, Article No. 2971 (November 21, 2006),
    http://www.jfanow.org/jfanow/index.php?mode=A&id=2971.

[^147]: "Emergency Communications Legislation, 2002-2006: Implications
    for the 110th Congress," Congressional Research Service, CRS Order
    Code RL 33747 (December 14, 2006).