National Disability Policy: 

A Progress Report 

National Council on Disability 

January 15, 2008 
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

National Disability Policy: A Progress Report 

This report is also available in alternative formats and on the award-winning National 

Council on Disability (NCD) Web site (www.ncd.gov). 

Publication date: January 15, 2008 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

The views contained in this report do not necessarily represent those of the 

Administration, as this and all NCD documents are not subject to the A-19 Executive 

Branch review process. 
 National Council on Disability 

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families. 

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 evidencebased 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 

1 
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, 

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.) 

2 
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 

3 
Acknowledgments 

The National Council on Disability expresses its sincere appreciation to Steve 

Mendelsohn, Esq., for all his work in the development of this report. 

4 
Table of Contents 

EXECUTIVE SUMMARY .............................................................................................. 11

MAJOR TRENDS.......................................................................................................... 27

Pay-As-You-Go Budgeting.......................................................................................................................28

Key National Indicators ............................................................................................................................29

Asset Development...................................................................................................................................31

Market-Based Regulation.........................................................................................................................33

CHAPTER ONE: DISABILITY STATISTICS ................................................................ 35

Introduction ...............................................................................................................................................35

The Fundamental Problem.......................................................................................................................36

The Census................................................................................................................................................36

Program Data.............................................................................................................................................37

Experimentation ........................................................................................................................................39

Recommendations....................................................................................................................................40

CHAPTER TWO: CIVIL RIGHTS.................................................................................. 41

Introduction ...............................................................................................................................................41

The Americans with Disabilities Act .......................................................................................................42

Section 504 of The Rehabilitation Act.....................................................................................................51

Voting Rights.............................................................................................................................................54

The Civil Rights of Institutionalized Persons Act..................................................................................57

Genetic Nondiscrimination and Privacy.................................................................................................58

Recommendations....................................................................................................................................59

CHAPTER THREE: EDUCATION ................................................................................ 63

Introduction ...............................................................................................................................................63

Idea Regulations and NCLB Reauthorization.........................................................................................64

5 
Other Issues under IDEA ..........................................................................................................................67

Recommendations....................................................................................................................................77

CHAPTER FOUR: HEALTH CARE.............................................................................. 79

Introduction ...............................................................................................................................................79

Medicaid.....................................................................................................................................................80

Medicare.....................................................................................................................................................90

Mental Health Issues.................................................................................................................................97

Veterans ...................................................................................................................................................100

Recommendations..................................................................................................................................101

CHAPTER FIVE: LONG-TERM SERVICES AND SUPPORTS.................................. 105

Introduction .............................................................................................................................................105

Scope of the Concept .............................................................................................................................106

Recommendations..................................................................................................................................116

CHAPTER SIX: CHILDREN AND YOUTH ................................................................. 117

Introduction .............................................................................................................................................117

The Youth Advisory Committee ............................................................................................................117

The National Youth Leadership Network..............................................................................................118

White House Conference........................................................................................................................119

Foster Care ..............................................................................................................................................120

Transition and Employment...................................................................................................................120

Recommendations..................................................................................................................................121

CHAPTER SEVEN: EMPLOYMENT .......................................................................... 123

Introduction .............................................................................................................................................123

The Changing Nature of Employment...................................................................................................125

Work Incentives.......................................................................................................................................131

Employer Education ...............................................................................................................................135

6 
Federal Government Employment ........................................................................................................136

Other Specialized Programs ..................................................................................................................138

Recommendations..................................................................................................................................139

CHAPTER EIGHT: WELFARE REFORM................................................................... 141

Introduction .............................................................................................................................................141

The Law....................................................................................................................................................141

Problems in Program Administration ...................................................................................................144

Asset Development.................................................................................................................................144

Financial Education ................................................................................................................................146

Recommendations..................................................................................................................................146

CHAPTER NINE: HOUSING ...................................................................................... 149

Introduction .............................................................................................................................................149

Affordable Housing.................................................................................................................................150

Civil Rights ..............................................................................................................................................154

Energy and Transportation ....................................................................................................................157

Homeownership ......................................................................................................................................159

Recommendations..................................................................................................................................163

CHAPTER TEN: TRANSPORTATION ....................................................................... 167

Introduction .............................................................................................................................................167

United We Ride........................................................................................................................................168

Job Access Program ..............................................................................................................................171

Urban and Regional Mass Transit.........................................................................................................173

Passenger Vessel and Cruise Ship Accessibility Guidelines ............................................................174

Air Travel..................................................................................................................................................175

Recommendations..................................................................................................................................178

7 
CHAPTER ELEVEN: ASSISTIVE TECHNOLOGY AND TELECOMMUNICATIONS....181

Introduction .............................................................................................................................................181

NCD’s Over The Horizon Report............................................................................................................182

The Digital Divide ....................................................................................................................................183

Nondiscrimination...................................................................................................................................185

Specific Issues ........................................................................................................................................186

Relay Services.........................................................................................................................................193

Closed-Captioning ..................................................................................................................................195

E-9-1-1 Access.........................................................................................................................................196

The Assistive Technology Act...............................................................................................................197

Tax Provisions.........................................................................................................................................197

Recommendations ..................................................................................................................................198

CHAPTER TWELVE: INTERNATIONAL AFFAIRS ................................................... 201

Introduction .............................................................................................................................................201

The U.N. Convention...............................................................................................................................201

Global Initiative .......................................................................................................................................202

The Organization of American States...................................................................................................203

Involving People with Disabilities In Policymaking.............................................................................203

Trade and Commerce .............................................................................................................................204

Recommendations..................................................................................................................................205

CHAPTER THIRTEEN: HOMELAND SECURITY ...................................................... 207

Introduction .............................................................................................................................................207

Accessible Trailers .................................................................................................................................208

The Rebuilding Process .........................................................................................................................209

The Scope of the Problem......................................................................................................................210

Emergency Communications ................................................................................................................211

Recommendations..................................................................................................................................212

8 
APPENDIX A: MISSION OF THE NATIONAL COUNCIL ON DISABILITY ............... 213

Overview and Purpose ...........................................................................................................................213

Specific Duties ........................................................................................................................................213

International.............................................................................................................................................215

Consumers Served and Current Activities...........................................................................................215

Statutory History.....................................................................................................................................216

ENDNOTES ................................................................................................................ 217

9 
10 
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-yougo 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 

11 
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. 

12 
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 

13 
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 

14 
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 selfdetermination 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 

15 
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. 

16 
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 

17 
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 

18 
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 lesserknown 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. 

19 
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. 

20 
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 

21 
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. 

22 
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 

23 
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 

24 
with planning, attention, and outreach, the goals of inclusiveness can be achieved and 

enhanced security can be brought to all Americans. 

25 
26 
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. 

27 
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 

28 
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. 

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 

29 
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, 

30 
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. 

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?” 

31 
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 subsistenceoriented income support programs, into rigidly means-tested in-kind service programs, 

32 
and into institutional and custodial programs can and must be redirected into assetbuilding 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?” 

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 highrisk 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 

33 
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. 

34 
Chapter One: Disability Statistics 

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 

35 
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. 

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. 

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. 

36 
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. 

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 

37 
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. 

38 
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. 

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, 

39 
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. 

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. 

40 
Chapter Two: Civil Rights 

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. 

41 
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 provisions be restored. As a result of many Supreme Court decisions, 

which have severely restricted the application of the ADA, as well as Lower-court 

decisions that emerged during 2006, there is a 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 

its scope as originally contemplated by Congress. 

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 

two key areas in which action 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 the definition of “disability.” 

The belief was that ADA cases would deal with whether the person seeking protection 

under the ADA had experienced discrimination. Yet, 16 years after enactment of the 

law, the majority of ADA cases are decided based on whether a person with a disability 

42 
is disabled enough to qualify for ADA protections, and rarely reach the question of 

discrimination. 

The Supreme Court severely undermined the purpose of the ADA by holding that the 

determination of whether an individual is a person with a disability must be made after 

“mitigating measures” have been taken into account. The result is that individuals with 

disabilities face inquiries into all aspects of their personal lives and functioning when 

bringing an ADA claim. The case law has developed in such an illogical manner that an 

employer can admit to discriminating against an individual with a disability, because of 

the disability, and defend its actions by arguing the person does not meet the ADA 

definition of “disability.” 

People with disabilities that Congress expressly intended to protect under the ADA, 

such as people with epilepsy, diabetes, cancer, hearing impairment, and depression, 

are experiencing disability-based discrimination with impunity. An ADA Restoration Act 

is urgently needed to return the focus of ADA cases to whether discrimination occurred. 

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 fundamental civil rights, such as 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. 

43 
The second problem left in the wake of Lane is that the Supreme Court’s earlier 

decision in Garrett10 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 for monetary damages 

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. 

One 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.7 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. 

44 
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.8 

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.9 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 

45 
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. 

46 
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.10 These 

cases both resulted in accessibility enhancements to several hundred stadium-seatingstyle 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 

47 
should be adopted. In the meantime, the Department of Transportation has adopted 

those portions of the ADAAG dealing with transportation.11 

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,

12 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. 

48 
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)

13 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 

49 
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. 

50 
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. 

Section 504 of The Rehabilitation Act 

Perhaps not since the famous golf cart case Casey Martin v. PGA Tour14 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.15 

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. 

51 
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.16 

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 

52 
considered in answering this question,17 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. 

53 
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. 

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. 

54 
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.”18 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.19 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 wellcoordinated implementation of a number of related laws can these goals be met. 

55 
The previous discussion focused on HAVA, but the Voting Rights Act (VRA) is another 

important component of the effort.20 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.21 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 

56 
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. 

The Civil Rights of Institutionalized Persons Act 

In late 2005, NCD issued a major report on the Civil Rights of Institutionalized Persons 

Act (CRIPA).22 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. 

57 
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.23 

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. 

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 

58 
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. 

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 

59 
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 

60 
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. 

61 
62 
Chapter Three: Education 

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. 

63 
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. 

IDEA Regulations and NCLB Reauthorization 

New IDEA Regulations 

Pursuant to the reauthorization of the IDEA Amendments of 2004,24 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.25 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.26 

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 

64 
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.27 Lying behind the effort is the desire to balance the counting of 

65 
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 performance66 
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. 

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.28 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 

67 
(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.29 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. 

68 
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 

69 
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).30 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. 

70 
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,31 rapid technological change 

sometimes can be a double-edged sword as far as efforts to achieve and preserve 

accessibility are concerned. 

71 
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.32 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. 

72 
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.33 

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 

73 
unauthorized practice of law.34 The implications of the Winkelman case extend far 

beyond special education, and already, the case is beginning to cast long shadows.35 

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 littlenoticed 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.36 

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 

74 
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.37 

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.38 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. 

75 
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.39 

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.”40 

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.”41 

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. 

76 
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. 

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 

77 
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. 

78 
Chapter Four: Health Care 

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 

79 
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. 

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. 

80 
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. 

81 
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.42 

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 entrylevel 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 

82 
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.”43 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 (dualeligibles), that is, people who receive coverage under both the Medicaid and Medicare 

programs. In light of the administrative and coverage differences between Medicare and 

83 
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.

44 

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. Dualeligibles 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.45 This, in 

turn, redirects attention to the perennial question of whether and to what extent removal 

84 
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.46 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 communitybased 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. 

85 
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.47 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 communitybased 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.48 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. 

86 
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.49 

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.50 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. 

87 
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.51 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.52 

88 
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.53 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. 

89 
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. 

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. 

90 
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. 

91 
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,54 (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.55 

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. 

92 
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, 

93 
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.56 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, 

94 
or request the ALJ [Administrative Law Judge] Board to strike down the applicable 

provision(s) of the policy, whichever is the more expeditious option.”57 

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.58 

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 

95 
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.59 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 2006,60 to assess the applicability of various healthpromotion 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 

96 
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. 

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 

97 
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.61 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 

98 
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 

99 
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. 

Veterans 

No discussion of health and disability is complete without paying attention to America’s 

growing number of wounded veterans. 

100 
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. 

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 

101 
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 

102 
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 riskreduction 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 highlevel 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. 

103 
104 
Chapter Five: Long-Term Services and Supports 

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. 

105 
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. 

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, 

106 
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 longterm services needs, but also of what criteria constitute livable communities. These 

reports are Livable Communities for Adults with Disabilities,

62 The State of 21st Century 

Long-Term Services and Supports: Financing and Systems Reform for Americans with 

Disabilities,

63 and, most recently, the Council’s October 2006 report Creating Livable 

Communities.64 

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 longterm 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 

107 
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 

108 
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,65 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.,

66 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 percent67) 

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 commitment68); 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. 

109 
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-andCounseling 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, 2006,69 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. 

110 
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 stategrant 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. 

111 
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.70 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. 

112 
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,71 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 

113 
health policy. These preliminary data suggest that they hold out the potential for 

improving consumer satisfaction and autonomy as well as enhancing health 

outcomes.72 

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.73 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 longterm-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 home114 
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 Supports74 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. 

115 
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. 

116 
Chapter Six: Children and Youth 

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. 

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 

117 
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.75 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.76 

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. 

The National Youth Leadership Network 

NCD commends the continuing work of the National Youth Leadership Network 

(NYLN).77 Currently funded by a consortium of federal agencies, NCD is proud to have 

been a supporter of the NYLN over the years. 

118 
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.78 

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.79 

White House Conference 

NCD commends the White House for hosting the White House Conference on Helping 

America’s Youth80 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 

119 
disabilities are affected by the way programs are designed and implemented, and 

should emphasize the values of inclusiveness that we all share. 

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,81 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. 

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.82 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. 

120 
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).83 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.”84 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. 

Recommendations 

Recommendation 6.1: NCD recommends that all federal agencies engaged in youthrelated 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. 

121 
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. 

122 
Chapter Seven: Employment 

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.85 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.86 

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.87 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 reports88 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. 

123 
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.89 

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. 

124 
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 

125 
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. 

126 
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 

127 
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 

128 
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”).90 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 selfsufficiency? 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 

129 
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 credit91 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 2003.92 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, 

130 
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. 

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),93 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. 

131 
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 selfsufficiency 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.94 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 

132 
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.95 

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.

96 

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 

133 
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.97 

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 

134 
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. 

Employer Education 

The proposed solutions in the previous section represent a classic illustration of supplyside 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 

year98 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.99 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. 

135 
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.100 Following a meeting in June 

to gain the views of a variety of stakeholders regarding the reasons for this decline,101 

EEOC launched its Leadership for Employment of Americans with Disabilities initiative 

in October.102 

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 

136 
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.103 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. 

137 
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. 

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.104 At the same time, 

renewed attention has been directed to the relevance and impact of the RandolphSheppard 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, 

138 
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. 

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. 

139 
140 
Chapter Eight: Welfare Reform 

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. 

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 

141 
reauthorized.105 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 

142 
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. 

143 
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-signlanguage-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. 

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 

144 
accounts (IDAs).106 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 selfemployment 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. 

145 
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 2006.107 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. 

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 

146 
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. 

147 
148 
Chapter Nine: Housing 

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. 

149 
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 taxbased and asset-accumulation strategies, to increase homeownership for Americans 

with disabilities. 

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 

150 
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)108 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.109 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 

151 
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 

152 
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 

153 
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. 

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. 

154 
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.110 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, personalassistance, 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 

155 
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.”111 

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. 

156 
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. 

157 
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 twentyfirst 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 

158 
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. 

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 

159 
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. 

160 
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 downpayment 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-sufficiencyrelated activities, including the purchase of work-related assistive technology, training 

and education, and related costs. All are subject to Social Security Administration 

161 
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 

162 
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. 

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 

163 
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 

164 
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. 

165 
166 
Chapter Ten: Transportation 

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: transportationdisadvantage. 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 

167 
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. 

United We Ride 

Pursuant to President Bush’s 2004 Executive Order on human services transportation 

coordination,112 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 “transportationdisadvantaged,” 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. 

168 
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.113 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 

169 
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. 

170 
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 costsharing, 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. 

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. 

171 
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 2005.114 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.115 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. 

172 
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, 

173 
complaint-handling practices, and a variety of other matters should be included in these 

routine audits. 

Passenger Vessel and Cruise Ship Accessibility Guidelines 

In the wake of the Supreme Court’s 2005 Spector decision,116 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. 

174 
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 

175 
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.117 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. 

176 
Self-Service Kiosks 

In May 2006, NCD issued “NCD Position Paper on Access to Airline Self-service Kiosk 

Systems.”118 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,119 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 

177 
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.120 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. 

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. 

178 
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. 

179 
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. 

180 
Chapter Eleven: Assistive Technology and 

Telecommunications 

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. 

181 
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.121 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. 

182 
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. 

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.122 The RTC report studied several 

sources of survey data. Though their methodologies differed, their results pointed to the 

183 
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 

184 
most viable solutions that can be implemented quickly and that would have the greatest 

value in bringing about increased access and participation. 

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,

123 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 

185 
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. 

Specific Issues 

Access Board Update of Section 255 and Section 508 Regulations 

Section 255 of the Telecommunications Act124 and Section 508 of the Rehabilitation 

Act125 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. 

186 
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)126 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. 

187 
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 

188 
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,127 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 

189 
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. 

190 
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 

191 
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 

NCD 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. 

192 
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. 

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 

193 
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 perline 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 

194 
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. 

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 

195 
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,128 has thrown this longstanding 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. 

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.

129 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. 

196 
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. 

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. 

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. 

197 
NCD has made tax-related technology recommendations in previous reports. With the 

recent reauthorization of the research and development (R&D) tax credit130 (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. 

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 

198 
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. 

199 
200 
Chapter Twelve: International Affairs 

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 disabilityrelated concerns. Finally, the chapter deals with interconnected legal and technology 

design issues that have arisen in the implementation of accessibility standards in recent 

years. 

The U.N. Convention 

In December 2006, the U.N. General Assembly adopted the Convention on the Rights 

of Persons with Disabilities.131 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.132 Several points about the postConvention world are worth addressing. In this regard, although the United States will 

201 
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. 

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.133 

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. 

202 
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.134 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. 

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.135 

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 

203 
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. 

Trade and Commerce 

Two years ago, in the Spector case,136 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 closedcaption 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. 

204 
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 blueribbon 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. 

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. 

205 
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. 

206 
Chapter Thirteen: Homeland Security 

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. 

207 
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. 

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 2006,137 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. 

208 
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.138 

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 2006,139 

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.140 

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 

209 
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.

141 

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 

210 
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. 

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 2004.142 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 

211 
communications enacted since September 11.143 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. 

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. 

212 
Appendix A: Mission of the National Council on 

Disability 

Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency with 15 

members appointed by the President of the United States and confirmed by the U.S. 

Senate. The purpose of NCD is to promote policies, programs, practices, and 

procedures that guarantee equal opportunity for all individuals with disabilities, 

regardless of the nature or significance of the disability, and to empower individuals with 

disabilities to achieve economic self-sufficiency, independent living, and inclusion and 

integration into all aspects of society. 

Specific Duties 

The current statutory mandate of NCD includes the following: 

Reviewing and evaluating, on a continuing basis, policies, programs, practices, 

and procedures concerning individuals with disabilities conducted or assisted by 

federal departments and agencies, including programs established or assisted 

under the Rehabilitation Act of 1973, as amended, or under the Developmental 

Disabilities Assistance and Bill of Rights Act, as well as all statutes and 

regulations pertaining to federal programs that assist such individuals with 

disabilities, to assess the effectiveness of such policies, programs, practices, 

procedures, statutes, and regulations in meeting the needs of individuals with 

disabilities. 

Reviewing and evaluating, on a continuing basis, new and emerging disability 

policy issues affecting individuals with disabilities 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 

213 
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. 

214 
Preparing and submitting to the President and Congress an annual report titled 

National Disability Policy: A Progress Report. 

International 

In 1995, NCD was designated by the Department of State to be the U.S. government’s 

official contact point for disability issues. Specifically, NCD interacts with the special 

rapporteur of the United Nations Commission for Social Development on disability 

matters. 

Consumers Served and Current Activities 

Although many government agencies deal with issues and programs affecting people 

with disabilities, NCD is the only federal agency charged with addressing, analyzing, 

and making recommendations on issues of public policy that affect people with 

disabilities regardless of age, disability type, perceived employment potential, economic 

need, specific functional ability, veteran status, or other individual circumstance. NCD 

recognizes its unique opportunity to facilitate independent living, community integration, 

and employment opportunities for people with disabilities by ensuring an informed and 

coordinated approach to addressing the concerns of people with disabilities and 

eliminating barriers to their active participation in community and family life. 

NCD plays a major role in developing disability policy in America. In fact, NCD originally 

proposed what eventually became ADA. NCD’s present list of key issues includes 

education, transportation, emergency preparedness, international disability rights, 

employment, foster youth with disabilities, vocational rehabilitation, livable communities, 

and crime victims with disabilities. 

215 
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. 

216 
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

 109th Congress, S. 3823 Sec. 4. 

8 Creating Livable Communities (Washington, DC: NCD, October 31, 2006), 

http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm. 

9

 See Disability Rights Online News, Issue 14 (August 2006), 

http://www.usdoj.gov/crt/ada/newsltr0806.htm. 

10 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. 

11 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. 

12 “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. 

13 United States v. TicketMaster (settlement agreement, December 22, 2005), Disability 

Rights Online News, Issue 11 (February 2006), 

http://usdoj.gov/crt/ada/newsltr0206.htm. 

14 PGA Tour v. Martin, 532 US 661 (2001). 

217 
15 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/. 

16 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. 

17 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. 

18 “NCD Statement: Voluntary Voting System Guidelines” (June 23, 2006), 

http://www.ncd.gov/newsroom/publications/2006/voluntary_voting.htm. 

19 “Justice Department Sues New York State over Voting Rights” (March 1, 2006), 

http://www.usdoj.gov/opa/pr/2006/March/06_crt_108.html. 

20 P.L. 109-246. 

21 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. 

22 “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. 

23 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. 

24 P.L. 108-446 (The Individuals With Disabilities Education Improvement Act of 2004). 

25 Federal Register (August 14, 2006), http://idea.ed.gov. 

26 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. 

27 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. 

28 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): 

218 
Analysis of Changes Made by P.L. 108-446,” Congressional Research Service, CRS 

Order Code RL 32716 (January 5, 2005). 

29 “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. 

30 34 CFRIEND Sec. 300.172. 

31 “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. 

32 “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. 

33 Winkelman v. Parma City School District, F. 3d (6th Cir. 2006), on appeal to the U.S. 

Supreme Court, No. 05-983. 

34 “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. 

35 Compare Golin v. Allenby, F. 3d (No. 04-15900, 9th Cir. 2005). 

36 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. 

37 “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. 

38 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). 

39 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. 

40 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. 

41 Ibid. 

219 
42 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). 

43 “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. 

44 “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). 

45 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. 

46 Supra note 47. 

47 P.L. 109-171, Sec. 6071. 

48 “Money Follows the Person—One State’s Data,” Info. Bulletin no. 109 (May 15, 

2006), http://www.stevegoldada.com. 

49 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. 

50 See “Change is Happening: Look at FY 2005 MA Expenditures,” Info. Bulletin no. 117 

(July 6, 2006), http://www.stevegoldada.com. 

51 Supra note 50, Sec. 6087. For background information on cash and counseling, visit 

http://www.cashandcounseling.org. 

52 Ibid. 

53 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. 

220 
54 “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). 

55 Ibid. 

56 109th Congress, S. 3677. 

57 Federal Register 68 Fed. Reg. 63691 at 63699. 

58 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. 

59 See http://www.cms.hhs.gov/HealthCareConInit/. 

60 “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. 

61 The Tax Relief and Health Care Act of 2006, P.L. 109-432, Sec. 115 (parity extended 

for one year). 

62 Livable Communities for Adults with Disabilities (Washington, DC: NCD, December 2, 

2004), http://www.ncd.gov/newsroom/publications/2004/Livablecommunities.htm. 

63 “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. 

64 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. 

65 These two provisions created the waiver programs under which states could seek 

federal approval to deviate from otherwise-applicable Medicaid rules. 

66 Olmstead v. L.C., 527 US 581 (1999). 

67 Supra note 52. 

68 Supra note 47. 

69 Supra note 50. 

70 P.L. 109-365, Secs. 408-409 (Older Americans Act Amendments of 2006). 

71 P.L. 109-171, Sec. 6087. 

72 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 

221 
Program Office at Boston College, Mathematica Policy Research Inc. found positive 

initial results before expansion of the program in 2006. 

73 P.L. 109-171, Sec. 6021. 

74 Supra note 66. 

75 “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. 

76 Ibid. 

77 http://www.nyln.org.

78 Ibid. 

79 See Fall 2006 Newsletter, Ibid. 

80 See http://www.helpingamericasyouth.gov. 

81 For example, Wendy Koch, “No State Fully Compliant with Child-welfare Standards,” 

USA Today (January 18, 2006) (citing DHHS findings). 

82 In many different words, this is a recurrent theme emerging from all the youth forums 

and discussions mentioned above. 

83 P.L. 105-220. 

84 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.

85 Approximately a dozen NCD employment issue briefs are being developed in

connection with the forthcoming employment report. 

86 NCD Financial Incentives Study (forthcoming in fall 2007). 

87 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). 

88 Supra note 88. 

89 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.

90 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.

91 Internal Revenue Code (IRC) Sec. 51. 

222 
92 P.L. 108-173. 

93 “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. 

94 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. 

95 “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. 

96 Supra note 89. 

97 Ibid. 

98 “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. 

99 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 

223 
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. 

100 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. 

101 Supra note 92. 

102 Supra note 103. 

103 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). 

104 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. 

105 P.L. 104-193. 

106 The IDA provisions of the new law, if not the old. 

107 109th Congress, S. 3863. 

108 IRC Sec. 42. 

109 “The Low-Income Housing Tax Credit: A Framework for Evaluation,” Congressional 

Research Service, CRS Order Code RL 33904 (March 7, 2007). 

110 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). 

111 See “Program Announcement: Money Follows the Person Rebalancing 

Demonstration,” CMS (July 26, 2006), 

http://www.cms.hhs.gov/NewFreedomInitiative/downloads/MFP_2007_Announcement. 

pdf. 

224 
112 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. 

113 “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. 

114 P.L. 109-59. 

115 “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). 

116 Spector et al. v. Norwegian Cruise Line Ltd., US (2005), No. 03-1338, 

http://www.admiraltylawguide.com/supct/Spector.pdf. 

117 Supra note 14. 

118 “NCD Position Paper on Access to Airline Self-Service Kiosk Systems,” NCD (May 

17, 2006), http://www.ncd.gov/newsroom/publications/2006/kiosk.htm. 

119 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). 

120 Ibid. 

121 Supra note 34. 

122 “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. 

123 Supra note 34. 

124 47 U.S.C. Sec. 255; 36 CFRIEND Part 1193. 

125 29 U.S.C. Sec. 794d; 36 CFRIEND Part 1194. 

126 Revisions of the governing regulations are expected to be proposed during 2007. 

127 65 Federal Register 80,500 at 80,504 (December 21, 2000) (preamble to the Access 

Board’s Final Rule implementing Sec. 508). 

128 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. 

129 The FCC E-9-1-1 summit on November 15, or the applications for waivers. 

225 
130 IRC Sec. 41. 

131 “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. 

132 “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. 

133 “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. 

134 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. 

135 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. 

136 Supra note 119. 

137 Brou v. FEMA (No. 06-0838, E.D.La. 2006), 

http://www.fema.gov/plan/prepare/specialplans.shtm. 

138 “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. 

139 109th Congress, H.R. 4704/S. 2124. 

140 “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. 

141 “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. 

226 
142 “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. 

143 “Emergency Communications Legislation, 2002-2006: Implications for the 110th 

Congress,” Congressional Research Service, CRS Order Code RL 33747 (December 

14, 2006). 

227