National Disability Policy: A Progress Report

On behalf of the National Council on Disability (NCD), it is my duty and honor to submit NCD’s National Disability Policy: A Progress Report, as required by Section 401(b)(1) of the Rehabilitation Act of 1973, as amended.

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

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

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

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

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

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

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)

National Council on Disability Members and Staff

Members
John R. Vaughn, Chairperson
Chad Colley, Vice Chair
Patricia Pound, Vice Chair
Milton Aponte, J.D.
Victoria Ray Carlson
Robert R. Davila, Ph.D.
Graham Hill
Marylyn Howe
Young Woo Kang, Ph.D.
Kathleen Martinez
Lisa Mattheiss
Lonnie Moore
Anne M. Rader
Cynthia Wainscott
Linda Wetters

Staff
Michael C. Collins, Executive Director
Martin Gould, Ed.D., Director of Research and Technology
Mark S. Quigley, Director of Communications
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Senior Attorney Advisor
Sharon M. Lisa Grubb, Special Assistant to the Executive Director
Geraldine Drake Hawkins, Ph.D., Senior Program Analyst
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Secretary

Acknowledgments

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

Executive Summary

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

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

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

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

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

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

The chapter then discusses a suit over the accessibility of U.S. currency to blind people and some of the complexities involved in trying to balance competing interests when enforcing civil rights laws.
The next section of the chapter deals with voting. It discusses continuing progress under the Help America Vote Act, and addresses the interface between that law and the Voting Rights Act.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These watershed events, however, unfold against an increasingly ominous backdrop. Research findings indicate that, after peaking in 1994, the percentage of adults with disabilities who are employed has fallen steadily.⁹¹ Moreover, although stimulation of mainstream participation in society through employment was one of the primary objectives of President Bush’s New Freedom Initiative, the negative 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 reports⁹² and in analyses of various dimensions of the issue in each of its annual status reports. NCD is obliged by statute to address employment in its annual reports to the President and Congress, but that obligation has been merely the starting point for the Council’s involvement and concern.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chapter Eleven addresses the broad topic of technology and telecommunications. This chapter deals with a variety of issues related to assistive technology and to access to our nation’s communications networks.
The chapter begins with a summary of technology access barriers set forth in NCD’s December 2006 “Over The Horizon” technology report. By way of illustrating some of the problems and concerns discussed in the report, the chapter reviews recently published research findings concerning the persistence and extent of the digital divide.

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

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

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

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

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

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

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

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

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.

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:

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:

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

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

Programs aimed at people with disabilities are estimated to cost between $300 and $400 billion per year. Efforts to get a handle on these figures have long been hindered by their diffusion among agencies and jurisdictions; however, people with disabilities, advocates, and policy analysts—as documented in a succession of NCD reports—have long noted that they lack coordination, administrative coherence, or policy consistency. Apart from anything else, there is no way that this $300 or more billion per year can be omitted from consideration as we address the entire role and basis of government.
NCD hopes and believes that 2007 will witness major efforts to come to grips with the articulation of key indicators for disability-oriented programs. NCD pledges its maximum support to GAO in the identification of issues, barriers, opportunities, and measurement criteria.

Asset Development

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

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

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

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

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

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

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

Market-Based Regulation

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

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

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

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

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

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:

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

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

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

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.

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 old³. 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 program on that target population are important. No single disability program applies to all of the more than 50 million people who are counted as having disabilities. Education programs, employment programs, health insurance, and income support all apply to different subgroups of the population.

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

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

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

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

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

Experimentation

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

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

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

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.

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 Americans with Disabilities Act

The ADA Restoration Act

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

The law needs to respond to many changes that have occurred since its passage, and the harmful impact of several court decisions needs to be addressed. For this reason, NCD has proposed and now renews its call for adoption of the ADA Restoration Act⁴.

Several major NCD reports have detailed the key court decisions and analyzed their effects on the lives of people with disabilities⁵. These reports are highly recommended to those seeking a fuller understanding of this subject. Rather than reviewing the extensive historical and legal data already amassed, the sections that follow highlight three key areas in which reform is needed.

Definition of Disability

Concerns about the definition of disability were most recently discussed in NCD’s September 20, 2006, letter to the chair of the House Judiciary Committee’s Subcommittee on the Constitution, in connection with its ADA oversight hearing⁶. When the ADA was passed, it is doubtful anyone would have imagined that a large proportion of important court cases dealing with the act would concern jurisdiction. That is, the belief was that these cases would deal with whether the person seeking protection under the ADA met the statutory definition of being a person with a disability, rather than with such questions as whether discrimination had occurred, or whether a reasonable accommodation was required, or whether a proposed accommodation was unduly burdensome to the employer or public-accommodation entity. Yet, 16 years after enactment of the law, precisely that has become and continues to be the case.

This current situation has evolved largely because of court decisions that have emphasized case-by-case determinations of whether a particular person is “an individual with a disability” subject to the protection of the law. The law provides that a person has a disability, and hence is covered, if the individual’s physical or mental impairment “substantially limits” or constitutes a limitation on one or more major life activities. But by their erratic and case-by-case methods of deciding what is an impairment, what are major life activities, what degree of limitation is substantial, and what connection is required between the particular impairment and the life activity in question⁷, the courts have, perhaps unintentionally, created more confusion and uncertainty. A given type or level of impairment may substantially limit one major life activity but not another, and may substantially limit a major life activity in the view of one court but not in the view of another.

Furthermore, by holding that the determination of whether an individual is a person with a disability needs to be made after “mitigating measures” have been taken into account, individuals with disabilities may be facing potentially greater obstacles in seeking the protection of the ADA. These mitigating measures may involve assistive technology (AT), but far more often, judging from the cases surveyed in early 2006 by the Congressional Research Service (CRS)⁸, they involve medical treatment, principally drugs. Although the Supreme Court decision establishing the mitigation requirement⁹ and the numerous lower-court decisions interpreting and applying it are not entirely clear or consistent, it appears that the individual employee or job seeker requesting reasonable accommodations will find no protection under the ADA unless medical measures to control the condition and its substantially limiting effects, such as blood sugar or seizures, have been attempted. If they succeed and the employee no longer needs the accommodation, then there is no longer any ADA issue. If they fail, only then must the accommodation request be addressed on its merits, and even then, there are barriers to its consideration, such as that the individual will be deemed medically unqualified to do the job though not disabled.

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

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

Sovereign Immunity

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

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

The second problem left in the wake of Lane is that the Supreme Court’s earlier decision in 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 by private citizens (although the Federal Government can always sue them) without their consent.

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

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

The courts have upheld the right of Congress to condition federal funds on the waiver of sovereign immunity. Legislation to incorporate such waivers in the ADA and the Age Discrimination in Employment Act was introduced in the 109th Congress¹¹. NCD recommends that such legislation be reintroduced and enacted without delay.

Major Developments During 2006

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

Project Civic Access

Project Civic Access (PCA) is a major ADA initiative by the Department of Justice (DOJ) aimed at helping local governments comply with Title II of the ADA. NCD commends DOJ for this initiative, because it directs important attention and resources to local and community services and facilities that affect the daily lives of many people, and also because it directs those resources to smaller communities that may be in particular need of the assistance. Seen in this light, ADA implementation becomes not merely the fulfillment of legal requirements but also a means to the achievement of the goals set forth in NCD’s Livable Communities report¹².

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 practices¹³. But one thing that is striking about the reported settlement is that a number of the buildings and facilities involved were new, and were designed and constructed long after the ADA standards came into effect. Consequently, if the PCA project is to have maximum effect, the following key question needs to be addressed: “How was it possible that a medium-size city and its engineering or architectural contractors could engage in major public works projects either without knowledge of, or with inaccurate knowledge of, or perhaps with indifference to the applicable requirements of the ADA?”

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

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

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

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

National Settlements

Within the same week in January 2006, DOJ reached a settlement with one national movie theater chain, and there was a court decision in the case of another¹⁴. These cases both resulted in accessibility enhancements to several hundred stadium-seating-style theaters across the nation. In another example later in the year, DOJ reached a settlement with a national retail chain, Jo-Ann Fabric, which again means that a significant number of stores in numerous locations will become more accessible as a result.

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

The ADA Accessibility Guidelines

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

NCD is very concerned with this lack of follow-up. If public comment or departmental review, both of which were understood to be well under way by the end of 2005, disclosed problems with the proposed guidelines, that should be announced and efforts to remedy the problems should be commenced through whatever procedures are considered appropriate. But if, on the other hand, the guidelines are adequate, they should be adopted. In the meantime, the Department of Transportation has adopted those portions of the ADAAG dealing with transportation¹⁵.

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 2004¹⁶, several court rulings have held that at least where there is a connection (or nexus) between the services and activities available on the Web site and those taking place at the public accommodation’s physical place of business (as there apparently would be in various instances under Target’s business model), commercial Web sites can be covered by the ADA.

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

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

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

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

Biomarker Identification

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

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

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

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

Section 504 of The Rehabilitation Act

Perhaps not since the famous golf cart case Casey Martin v. PGA Tour¹⁸ has a disability-related case received as much attention as has the case involving the accessibility of our nation’s currency. A federal district court has ruled that the U.S. Treasury, by failing to do anything to make it possible for people who are blind to independently distinguish the various denominations of currency, has violated Section 504 of the Rehabilitation Act.¹⁹

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

The International Dimension

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

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

Undue Burden

In the wake of the decision, opponents, including representatives of the government and representatives of various affected industries, have pointed out the high cost associated with reshaping or otherwise redesigning the currency. A representative of the vending machine industry has estimated, for example, that the change would cost that industry alone $560 million²⁰.

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

Leaving aside the lack of any outside verification of their accuracy, estimates of cost, even cost to the government alone, tend to be bandied about and discussed without a context. Therefore, the key question, as with all “undue burden” claims, is what cost is reasonable and what is excessive. The law sets forth a number of criteria to be considered in answering this question²¹, 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.

http://www.gao.gov/new.items/d051.pdf.

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.

ACS Content Test Evaluation Report on Disability (January 2007), http://www.census.gov/acs/wwwAdvMeth/content.test/P4_Disability.pdf.

For example, 109th Congress, H.R. 6258 (The Americans with Disabilities Act Restoration Act of 2006).

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.

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.

“Righting the ADA,” supra note 4; see also Nancy Lee Jones, “The Americans with Disabilities Act (ADA): The Definition of Disability,” Congressional Research Service, CRS Order Code RL 33304 (March 9, 2006).

See Nancy Lee Jones, “Americans with Disabilities Act.”

See “Righting the ADA,” supra note 4.

Compare Garrett v. Board of Regents, University of Alabama, 531 US 356 (2001) with Tennessee v. Lane, 541 US 509 (2004).

109th Congress, S. 3823 Sec. 4.

Creating Livable Communities (Washington, DC: NCD, October 31, 2006), http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm.

See Disability Rights Online News, Issue 14 (August 2006), http://www.usdoj.gov/crt/ada/newsltr0806.htm.

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.

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.

“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.

United States v. TicketMaster (settlement agreement, December 22, 2005), Disability Rights Online News, Issue 11 (February 2006), http://usdoj.gov/crt/ada/newsltr0206.htm.

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

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/.

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.

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.

Assistive Technology Versus Universal Design

In the International Dimension section above, one role for technology was noted. But technology plays another important role in this debate, a role that has not received nearly the attention that it should.
Devices exist that can identify currency. According to anecdotal information, the Department of the Treasury may even have participated in funding some of the research on these devices. One approach to an accessibility problem is to develop and provide AT to solve the problem, and presumably all blind people who wanted it could be provided with a currency identifier device. But the thrust of this case points in the direction of universal or accessible design. Rather than seeking the provision of currency identification devices to be carried around by citizens, the suit seeks to make the currency more accessible without regard to the need for AT.

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

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

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


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National Disability Policy: A Progress Report

Letter of Transmittal

National Council on Disability Members and Staff

Acknowledgments

Table of Contents

EXECUTIVE SUMMARY

Major Trends

Chapter One: Disability Statistics

Chapter Two: Civil Rights

Chapter Three: Education

Chapter Four: Health Care

Chapter Five: Long-Term Services and Supports

Chapter Six: Children and Youth

Chapter Seven: Employment

Chapter Eight: Welfare Reform

Chapter Nine: Housing

Chapter Ten: Transportation

Chapter Eleven: Assistive Technology and Telecommunications

Chapter Twelve: International Affairs

Chapter Thirteen: Homeland Security

ENDNOTES

Executive Summary

Major Trends

Pay-As-You-Go Budgeting

Key National Indicators

Asset Development

Market-Based Regulation

Chapter One: Disability Statistics

Introduction

The Fundamental Problem

The Census

Program Data

Experimentation

Recommendations

Chapter Two: Civil Rights

Introduction

The Americans with Disabilities Act

The ADA Restoration Act

Definition of Disability

Sovereign Immunity

Major Developments During 2006

Project Civic Access

National Settlements

The ADA Accessibility Guidelines

Growing Concerns

e-Commerce

Biomarker Identification

Section 504 of The Rehabilitation Act

The International Dimension

Undue Burden

Assistive Technology Versus Universal Design

Voting Rights

Help America Vote Act