National Disability Policy: A Progress Report
December 2003 - December 2004

National Council on Disability
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Publication date: November 17, 2005

This report is also available in alternative formats and on the award-winning National Council on Disability (NCD) Web site (www.ncd.gov).

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The views contained in this report do not necessarily represent those of the Administration as this and all NCD documents are not subject to the A-19 Executive Branch review process.

Letter of Transmittal

November 17, 2005

The President
The White House
Washington, D.C. 20500

Dear Mr. President:

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

The report covers the period from December 2003 through December 2004. It reviews federal policy activities by issue areas, notes input by other federal agencies on their progress where it has occurred, and makes further recommendations, where necessary, primarily to the executive and legislative branches of the Federal Government.

As indicated in the report, NCD has observed examples of progress in disability policy and the broader policy arena. Among these are the efforts made by the Transportation Security Administration (TSA) to ensure that the concerns of people with disabilities are taken into account in the formulation of security and screening procedures, as well as the continuing efforts by the TSA to reach out to the disability community and to take its views into consideration. As another example, the Department of Education (DOE) issued a request for public comment as part of the process of writing implementing regulations for the Individuals with Disabilities Education Act (IDEA), including focus groups to obtain stakeholder and public input. NCD believes this outreach will result in useful and broad-based input.

Under NCD’s statutory mission, examination of the status of disability policy discloses that incremental progress made in some areas is clouded by other major barriers and challenges that continue to block paths available to the general population. Gaps in necessary services and supports remain to the extent that, as stated in NCD’s 2003 progress report, far too many Americans with disabilities are undereducated and unemployed.

NCD encourages all Federal Government entities to use our work as a source of data for recommendations and in furtherance of disability policy issues. NCD offers its readiness to work with the Administration, Congress, federal agency partners, and members of the public in ways that have a bearing on the lives of people with disabilities.

Sincerely,

Lex Frieden, Chairperson

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

National Council on Disability Members and Staff

Members

Lex Frieden, Chairperson
Patricia Pound, First Vice Chairperson
Glenn Anderson, Ph.D., Second Vice Chairperson

Milton Aponte, J.D.
Robert R. Davila, Ph.D.
Barbara Gillcrist
Graham Hill
Joel I. Kahn, Ph.D.
Young Woo Kang, Ph.D.
Kathleen Martinez
Carol Novak
Anne M. Rader
Marco Rodriguez
David Wenzel
Linda Wetters

Staff

Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Senior Attorney Advisor
Martin Gould, Ed.D., Director of Research and Technology
Geraldine Drake Hawkins, Ph.D., Senior Program Analyst
Allan W. Holland, Chief Financial Officer
Pamela O’Leary, Interpreter
Mark S. Quigley, Director of Communications
Mark E. Seifarth, Congressional Liaison
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Secretary

Acknowledgments

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

Table of Contents

Executive Summary
Introduction

(a) Program Design for a New Century
(b) Program Evaluation
(c) Coordination

(a) The Extent of Disability
(b) New Uses of Statistics
(c) Reporting Requirements
(d) Scoring

Recommendations

Chapter Two—Civil Rights
Introduction

(a) The Americans with Disabilities Act
(b) Federal Funding for Civil Rights Enforcement
(c) Voting
(d) Hate Crimes
(e) Genetic Discrimination

Chapter Three—Education
Introduction

(a) Current Context
(b) Major Goals of Reform
(c) Monitoring
(d) Additional Concerns
(e) Higher Education

Recommendations

Chapter Four—Health Care
Introduction

(a) Health Insurance
(b) Social Security Reform and Health
(c) The National Health Information Infrastructure
(d) Medicaid
(e) Medicare
(f) Consumer-Directed Services

Recommendations

Chapter Five—Long-Term Services and Supports
Introduction

(a) Definitions
(b) The NCD Study
(c) The Current Context of Discussion
(d) The Private Sector

Chapter Six—Children and Youth
Introduction

(a) Incarceration
(b) Child Welfare
(c) Youth Leadership
(d) New Transition Challenges

Chapter Seven—Employment
Introduction

(a) Work Incentives
(b) The Workforce Improvement Act
(c) The Eroding Job Base

Chapter Eight—Welfare Reform
Introduction

(a) Background
(b) The Goals
(c) Specific Proposals
(d) Cost-Shifting

Chapter Nine—Transportation
Introduction

(a) Airport Security
(b) Air Carrier Access Act
(c) Human Service Transportation
(d) The National Transportation Act

Chapter Ten—Housing
Introduction

(a) Civil Rights
(b) Long-Term Planning and Housing Goals
(c) Linkages
(d) Innovative Strategies

Chapter Eleven—Technology and Telecommunications
Introduction

(a) Assistive Technology Act Renewal
(b) The Broad Range of AT Initiatives
(c) Section 508
(d) Cost-Effectiveness
(e) Telecommunications and the FCC

Chapter Twelve—International
Introduction

(a) Cruise Ships
(b) Foreign Aid
(c) U.N. Convention

Chapter Thirteen—Homeland Security
Introduction

(a) Recent Developments
(b) Emerging Legal Issues
(c) Inclusion of People with Disabilities in Planning
(d) Administrative Problems
(e) Other Contexts

Appendix

Mission of the National Council on Disability
Overview and Purpose
Specific Duties
International
Consumers Served and Current Activities
Statutory History

Executive Summary

This introductory section sets the stage for the subject matter covered in the following chapters. The introduction identifies major trends and overarching issues that are valuable in organizing information and creating a framework for the discussion of complex issues.

The body of the report begins with Chapter 1 on disability statistics and research. Research and statistics increasingly lie at the heart of public policy and represent the chief source of data on which policy is based. The chapter discusses the increasingly important links between the accuracy and completeness of research and statistical data, and the formulation of evidence-based program and expenditure policy.

Section (a) addresses the role of the Census in creating an understanding of disability and its implications for policy in our nation. Section (b) addresses new areas in which statistical data is becoming a predominant source of evidence-based policy. Section (c) considers some potentially important groups that may fall through the cracks of current data collection efforts. Section (d) discusses the choices that are made as they relate to the kinds of information collected.

Chapter 2 covers civil rights. It addresses substantive civil rights issues along with the interagency relationships necessary to bring about effective implementation of the law.

The chapter begins with the Americans with Disabilities Act of 1990 (ADA), addressing the current context created by court decisions, legislative proposals, and Executive Branch actions. It then discusses National Council on Disability’s (NCD’s) work on ADA, summarizing some of the Council’s key findings and recommendations, including its support for the ADA Restoration Act.

Section (b) of the chapter concerns itself with planning and coordination issues, including the budgeting process, involved in enforcement of disability rights laws. With efforts to contain federal spending likely to grow more intense, NCD highlights the importance of addressing these issues as soon as possible.

Section (c) deals with voting rights. It addresses developments and issues under both ADA and the Help America Vote Act (HAVA). Commending several major initiatives of 2004, the section emphasizes the need for continued attention and coordination among the several agencies involved in HAVA implementation. Section (c) further counsels that, even in a nonelection year, loss of focus or momentum would be dangerous.

Section (d) reiterates the need for hate crimes legislation to protect vulnerable people with disabilities from opportunistic or prejudice-based violence, much as laws already protect racial and ethnic minorities.

Section (e) addresses the need for legislation barring the improper use of genetic information. It reviews some of the concerns underlying the need for genetic nondiscrimination legislation and identifies two areas in which interactions between genetic information and privacy laws warrant further action.

Chapter 3 examines recent developments in education, emphasizing issues concerning integration of the new Individuals with Disabilities Education Act into the framework of the No Child Left Behind Act. The chapter also addresses developments in higher education related to students with disabilities.

Chapter 4 deals with health care issues. Individuals have varying health care needs and look to different practitioners or payment sources, but no one is unaffected by the challenges facing our health care system. The chapter filters some of the most timely health policy issues through the experiences of Americans with disabilities.

Section (a) deals with the issue of the uninsured. It explores its dimensions and suggests that application of various proposed solutions to people with disabilities requires careful attention and analysis.

Section (b) concerns itself with Social Security reform. It points out ways in which the Social Security system affects many people with disabilities whose situations or numbers are not reflected in the current public debate.

Section (c) considers the proposed National Health Information Infrastructure (NHII) with a view to incorporating, at an early point, issues of concern to people with disabilities into the NHII planning process. NCD addresses a range of issues that are critical to an effective and inclusive system.

The chapter next confronts the Medicaid program as it stands on the threshold of great change. The section draws out some of the main implications for people with disabilities, of major structural changes in the program, and of Medicaid’s role in helping to reduce work disincentives for beneficiaries with disabilities.

The next section probes issues arising under the Medicare program devolving from implementation of the Medicare Modernization Act. The section also raises concerns about the ability of Medicare to contribute to the return to work of beneficiaries, as it is expected to do under several laws.

The recent controversy over the Medicare standard for availability of powered wheelchairs is also discussed, both from the standpoint of the light it sheds on the relationship between cost-driven and medically based decision making and from the standpoint of new procedures recently adopted for increasing public input into program design. Finally, the chapter reviews the growth and implications of consumer-directed health care as it relates to people with disabilities.

Chapter 5 addresses long-term services and supports. Section (a) begins with a discussion of the definition of long-term services and supports (LTSS) in the context of income replacement, health care, and community-based services. Clear and widely accepted definitions of the concept of LTSS are needed before effective planning or forecasting can take place.

Section (b) discusses the major NCD study on this subject, which is expected to be released in winter 2005. Based on key issues explored by that study, it raises additional questions about how reasonable expectations for LTSS can be set and about the role of federalism in the allocation of responsibility in this area.

Section (c) provides further background for the emerging national discussion of LTSS by describing the situation of people with disabilities under age 65 and by describing some of the issues that affect them in the design of LTSS.

Recognizing the potential importance of private sector partners in any solution to the LTSS needs of our country, the chapter discusses the role of long-term care insurance and recommends finding strategies for expanding its role.

Chapter 6 deals with issues of special relevance to youth. Section (a) discusses some of the issues arising from the intersection between the juvenile justice and mental health systems, noting disturbing evidence of the increased warehousing role of juvenile detention facilities. Section (b) addresses needs and gaps in current adoption incentives and in neglect and abuse data reporting. Section (c) addresses the work of NCD’s Youth Advisory Committee (YAC). Finally, Section (d) directs attention to new issues emerging in connection with the provision of school-to-adult life transition services.

Chapter 7 is about employment. Despite a long history of bipartisan commitment to programs designed to enhance employment among people with disabilities, unemployment among adults with disabilities remains unacceptably high.

NCD commends the significant efforts being made by a number of federal agencies and programs to develop strategies for getting recipients of Social Security program benefits and others with disabilities back to work. A number of these efforts are discussed in this chapter. But NCD also believes that new and dramatic approaches will be needed for the problem of unemployment among people with disabilities to be materially and durably reduced. Some suggestions along these lines are also discussed.

In this connection, the chapter reviews a number of work incentive programs undertaken in recent years, discusses some of the procedural and evaluation issues involved in their use, and explores the origins and current viability of a number of the basic assumptions underlying work-incentive efforts.

Next, the chapter addresses issues arising in connection with the forthcoming reauthorization of the Workforce Investment Act. This discussion covers issues arising under the mainstream career-development and labor-market programs charged with serving people with disabilities on a full and equal basis, and issues facing the specialized system of vocational rehabilitation for people with disabilities that exists alongside of and in partnership with general programs.

Finally, the chapter explores the implications for disability employment projects of a range of issues presented by changes in society, in the labor market, and in the expectations of employers and government. It raises key questions that must be answered if the efficacy of our career development services is to be strengthened.

Chapter 8 of the report draws attention to welfare. The legal framework for welfare reform has not changed in the past year. Thus, NCD believes that the detailed recommendations set forth in both our 2002 and 2003 status reports continue to apply to the reauthorization of the nation’s welfare law.

The chapter points up the prevalence of people with disabilities among the welfare-recipient population and suggests issues bearing on achieving successful employment outcomes.

Although transportation is referenced in a number of other chapters, Chapter 9 deals with the subject in its own right. Section (a) addresses accessibility-related issues in transportation security; Section (b) deals with developments under the Air Carrier Access Act; Section (c) reviews developments in local and regional transportation policy during 2004; and Section (d) looks forward to possible enactment of a new national transportation bill in 2005.

Chapter 10 considers housing. NCD continued to address concerns relating to the coherence and organization of federal civil rights enforcement, the adequacy and sufficiency of funding and staffing in key program areas, and the extent to which long-term planning and goal-setting in the housing area have taken the needs and concerns of citizens with disabilities into account. Section (a) deals with civil rights enforcement and policy. Section (b) deals with the place of people with disabilities in housing goal-setting and planning. Section (c) addresses key linkages that underlie the role and importance of adequate housing. Section (d) reviews a number of innovative strategies for improving the housing situation for people with disabilities.

Chapter 11 considers a variety of issues related to technology and telecommunications, reviewing in a number of areas how key decisions, including seemingly unrelated ones, will have a profound impact on the lives of people with disabilities.

The chapter begins with a discussion of the reenactment of the Assistive Technology Act and discusses some of the benefits of that program. The chapter goes on to consider the broad range of technology initiatives undertaken by the government, arguing for their importance and urging that they be maintained intact until the results of major ongoing research are published.

Taking NCD’s universal design report as its point of departure, the chapter next considers the role of federal policy and programs in supporting universal design practices. A study of how this could be done more effectively is recommended.

We next consider developments during 2004 in the implementation of the accessibility requirements of Section 508 of the Rehabilitation Act, making recommendations for enhanced monitoring, discussing impacts of the law going well beyond its actual jurisdiction, and suggesting ways that outcomes research can be done in a technological environment.

The remainder of the chapter addresses a constellation of increasingly important access and civil rights issues falling within the domain of the Federal Communications Commission. These include enforcement of Section 255 of the Communications Act, technological and economic challenges facing closed-captioning and telecommunications relay services, the role of accessibility in the e-rate program, and the implications for civil rights and accessibility requirements of the above to Voice over Internet Protocol (VoIP) communications.

Chapter 12 turns to international issues. The chapter begins with a discussion in Section (a) of the growing convergence between domestic and international issues. Section (b) deals with U.S. foreign aid practices, and Section (c) addresses developments surrounding the pending U.N. Convention on the Rights of People with Disabilities.

Chapter 13, the final chapter, represents the newest addition to the subjects considered by NCD’s annual status report: homeland security. Section (a) reviews developments during the past year, commending the Executive Order issued in connection with emergency preparedness and people with disabilities. Section (b) goes on to express concerns about the possible inadequacy of existing legal provisions to ensure that critical electronic information resources will be available in emergencies to all people with disabilities on a real-time basis. Section (c) reviews the importance of including people with disabilities in emergency planning, especially in emergency planning that is specifically undertaken with them in mind. Section (d) deals with the host of issues confronted in harmonizing and standardizing the accessibility and related practices of the numerous agencies making up the homeland security system.

Finally, Section (e) reflects on other dimensions of civil rights enforcement in a system composed of so many diverse organizations and traditions, noting that a major report on this subject was issued by NCD in early 2005.

Introduction

Each year, as required by law [1], NCD submits to the President and Congress a status report, summarizing major developments affecting the lives of people with disabilities in the preceding year and highlighting issues likely to emerge in the year to come. Key topics include issues of concern to all people with disabilities (such as housing, health care, transportation, technology, and homeland security) and issues of concern to people at every stage of the life cycle (from education and youth to employment and long-term services).

As the range and complexity of issues have grown, NCD has wrestled with how best to help readers gain an overview for dealing with a dense and detailed body of what to many may be unfamiliar information and issues. To do this, the Council has, in recent years, endeavored to introduce its report with a discussion of major overarching trends and unifying themes that should help readers organize the material in the chapters to come. This year, as in past years, NCD has identified several important and recurrent themes that need to be addressed. Discussion of the three most important and timely themes follows.

(a) Program Design for a New Century

Our nation faces the process of structuring and financing domestic programs, including programs with particular significance for people with disabilities, in a new and rapidly changing environment. It is an environment rich with hope for the opportunities that innovation, attitudinal change, and technology hold out. But it is also an environment beset by anxiety and challenge, as the limitations of available resources in the face of growing expectations and needs become all the more inescapable and ominous.

In programs for people with disabilities, such as special education and vocational rehabilitation, the need for innovative program design has been recognized, but the means for carrying it out remain matters of debate. How tightly should these programs be tied, in procedures or expectations, to their mainstream counterparts―No Child Left Behind in the case of education and the Workforce Investment Act in the case of employment? How literally can the expectations of these mainstream programs be carried over, and how are the potentially varying resource demands of such expectations to be understood and met?

By the same token, many programs are not designed with people with disabilities specifically in mind, but they have a disproportionately large impact on their lives. Health insurance programs, including Medicaid and Medicare, are prime examples. As debate over the reform and restructuring of these programs proceeds, how can the effects of proposed changes on beneficiaries with disabilities (which may often be quite different and quite surprising) best be identified and taken into account?

Similarly, the interests and destinies of Americans with disabilities are frequently implicated and significantly affected by decisions made with little or no awareness of this group’s unique concerns, in areas that at first seem to have little or no special connection to their lives. For example, in policy areas ranging from telecommunications (in which issues of accessibility of equipment and services are central to the ability of people with disabilities to participate in mainstream society) to long-term services and supports (in which the range of services people may need belies any traditional notion about the boundaries between medical and social programs), most discussion and debate fail to acknowledge, let alone understand, the significant ways that the decisions made will impact the lives and hopes of more than 50 million Americans. How are these issues and concerns to be incorporated into the public debate?

Without coherent and consistent notions of the role people with disabilities are expected to play in society and without clear recognition that real-life issues can no longer be addressed through the lens of a single program or the jurisdiction of any one agency, these overarching questions are likely to go unanswered or to receive only ad hoc and fragmentary answers on an unpredictable, case-by-case basis.

The new era in program concept and design will take many forms. New program models; new definitions of services themselves and of target populations and stakeholder groups; new allocations of responsibility and authority among federal, state, and private sector partners (including end-users and consumers); and new criteria for measuring program outcomes and success—all of these can be seen to one degree or another in virtually every major piece of legislation discussed in this report. All such changes may have implications for various subgroups of Americans, of course. Few subgroups are as large as that of people with disabilities, though, and few are as certain to be affected by almost every program development, whether expressly aimed at them or not.

In the chapters that follow, numerous examples of this are encountered, including the effects of Census data collection techniques on our understanding of who people with disabilities are (Chapter 1); the impact of proposed Medicaid restructuring on the key low-incidence services so crucial to many beneficiaries with disabilities (Chapter 4); the implications for access to employment of how the Federal Communications Commission (FCC) decides to regulate new VoIP communications services (Chapter 11); and the ways that several recent trends have combined to make the juvenile detention system a default treatment venue for children and youth with mental and emotional disabilities (Chapter 6).

Consistent with its mission, NCD has traditionally sought to provide decision makers with key background information, perspective, and human dimensions to assist them in reaching their decisions. While the Council continues to offer its balanced recommendations and informed views in numerous legislative, regulatory, and judicial contexts and through a variety of issue briefs, white papers, research reports, and testimony presentations, we recognize that the torrent of issues makes it impractical for us or any small advisory body to weigh in on a timely basis in all instances where our data and views might prove valuable. What we fundamentally urge, therefore, is the development of mechanisms for ensuring that, whether the ultimate decisions are made in a manner that best serves the interests of people with disabilities or that subordinates those interests to larger or more pressing concerns, they are at least made with the fullest possible consciousness of the interests and implications at stake.

Illustrations of this need are evident in every chapter of this report. Solutions require new partnerships in fashioning policy and identifying relevant stakeholders; that is, partnerships in planning similar to those increasingly being used to deliver program services to citizens, customers, and consumers.

(b) Program Evaluation

1. Evidence-Based Practice

As program models and goals change to accommodate new values, new notions of federalism, and new fiscal realities, so too must the ways we evaluate programs evolve and grow. Evidence-based criteria in the evaluation of programs and evidence-based practices in their design and implementation have justly become watchwords of this new environment.

But identifying an evidentiary, research-driven basis for many programs and activities can be difficult, controversial, and time-consuming. If childhood nutrition influences health in adulthood, how many years would be required to establish the efficacy of children’s nutrition programs? If the benefits of a good education are accrued over the course of a lifetime, when is the proper time for evaluating the impact of investment in education, let alone for assessing the comparative merits of various educational techniques about which experts and practitioners disagree?

To a great extent, the nature and significance of evidence remains a function of baseline performance and basic expectations for a program, how important the perceived outcome is, and a host of other contextual factors. For instance, in applying per capita expenditure levels to the work of vocational development programs (as might be done through the use of the Office of Management and Budget’s (OMB) Job Training Efficiency Common Measures program) (see Chapter 7), what role should be accorded to the specialized needs of particular subgroups of job seekers? For people with disabilities who may need assistive technology to access data or even to get to and from interviews or work locations or who may need specialized training services to perform their jobs, what scope should mainstream program evaluation standards accord to these accommodation needs and costs? How should the level of these costs be evaluated, how should their extent be measured, and how should the costs of accommodations be allocated among the parties to the employment relationship? Finally, how should small reductions in unemployment be regarded for a population group that begins from a much higher and intractable baseline of joblessness than the population at large?

NCD is frankly concerned, as illustrations drawn from this report demonstrate, that broad-based decisions about programs’ value and effectiveness are being made without adequate knowledge of, or attention to, such variables. What constitutes acceptable outcomes can sometimes be measured on per capita cost or other aggregate numerical bases but must, at other times, be measured by the impact of program services and goals on the lives of individuals.

Again, in addressing the question of how evaluation and outcome measurement can flexibly, but rigorously, be applied to programs and services that affect people with disabilities as part of a larger target population, NCD does not contend that programs can or even should always be designed to maximize the achievement of successful outcomes by people with disabilities. The Council does insist, though, that if programs are to be evaluated in ways that create barriers to successful outcomes by people with disabilities (such as through the use of per capita cost measures that do not take the costs of necessary accommodations into account) or if program outcomes for individuals are to be subordinated to other worthy or larger priorities (as on occasion they must be), this subordination be done knowingly and consciously, not accidentally or as a casual byproduct of other decisions.

As our nation prepares to enter into a major debate over the restructuring of Medicaid, such questions become particularly pertinent. What is the relative priority to be accorded to the individualization that may be necessary to ensure the preservation of every individual life? How are the demands for standardized evaluation techniques, evidence-based validation of program modalities and treatments, encouragement of state innovation, and restriction of spiraling costs to be reconciled? For people with disabilities—who often depend for their quality of life, if not in many cases for life itself, on services and supports that have traditionally been considered optional and of little value in relation to their cost—the answers to these questions are of inestimable importance.

Whatever the answers, the trend NCD observes is for the evidentiary standards of practice and the outcome standards for evaluation to be centralized and formalized. If formal evaluation processes are to be increasingly demanded in order to qualify treatments and devices for coverage, how will the low-incidence but high-impact interventions needed by people with disabilities be ensured a place anywhere near the front of the evaluation queue? If an extended time frame is required for the evaluation of a practice or treatment that has strong practitioner and professional support but little empirical data behind it, how will the practice be handled pending the completion of controlled research that meets prescribed methodological standards? Will it be covered based on practitioner experience and belief, or will it be withdrawn because of the lack of supporting clinical validation? And if particular modalities, such as sensory access or mobility technology, yield measurable improvements in the quality of life for their users but don’t result in any changes that would be regarded as medical in nature, will they be eligible for coverage?

NCD appreciates the need to ensure that public resources are wisely and efficiently used, but the Council continues to be concerned that, unless the processes for creating official and governing standards of practice and criteria for outcomes are inclusive, the results will too often omit or inadvertently harm people with disabilities.

2. Accountability

Perhaps no single word is heard more often in the discussion of domestic policy today than accountability. Problems with accountability as it is often discussed relate to the difficulty of grasping or tracking the cross-program nature of many outcomes. An example (discussed in Chapter 4) illustrates the twofold problem this creates. The Medicare program has engaged in a process of changing the standards for which beneficiaries are eligible to obtain powered wheelchairs and other powered mobility devices. It is widely believed that these changes will result in significant curtailment of access through Medicare (including, therefore, access for recipients of Social Security Disability Insurance to their health care through Medicare) to these devices. What is the range of consequences that accountability and outcomes measurement will encompass? Put another way, what are the medical outcomes of these changes, and are there other outcomes that, although not traditionally considered medical in nature, need to be considered as part of the powered-mobility proposal review process?

For example, many people believe the new rule will result in loss of employment for some people with disabilities who use powered mobility devices to get to and from work as well as in their homes (but who would be ineligible to receive them under the new Medicare standard). Should the Centers for Medicare and Medicaid Services (CMS) be required to assess the extent of this risk before implementing the new eligibility requirements? If the new rule does result in job losses, should vocational programs suffer in their accountability ratings as a result? Where does accountability end? What responsibility does accountability impose on one agency or program for the effects its self-referential decisions have upon the success and resources of another?

Current evaluation procedures and outcome measurement criteria derive from two principal sources: the Government Performance and Results Act (GPRA) and the OMB’s Performance Assessment Rating Tool (PART) Performance Measurements Program (used for rating programs in the federal budget). Neither GPRA nor PART currently lends itself to this kind of cross-program, interagency outcomes analysis. NCD believes this must change before accountability can be meaningfully assessed or applied.

Perhaps nowhere is the meaning of accountability more critically at issue than in the area of civil rights. Although various statistical, caseload, case-processing time, complaint outcome, and other measures can be used to assess the administrative efficiency of civil rights programs, fundamental questions about the value of civil rights enforcement do not lend themselves to any conventional outcome measures or cost accounting. While administrative efficiency and internal controls are key, only in the extent to which civil rights compliance and resultant equal opportunity are increased can programs’ value ultimately be measured.

NCD believes that vigilant civil rights enforcement is an indispensable component of any balanced effort to achieve equality of opportunity in society. But if statistical evidence were needed to justify this belief, one would be hard-pressed to produce it. Evidence of the costs of compliance to industry and government can readily be produced, but comparable data demonstrating the value of a just society or tracking the impact of vigorous enforcement on public attitudes and behavior over time is hard to define, let alone to collect. Yet the incredible complexities surrounding efforts to demonstrate the benefits of a just society, and the likely impossibility of ever proving them with statistics, does not make the critical importance of promoting a just society any less meaningful or urgent.

NCD enthusiastically supports the goal of extending accountability to as many programs and sectors as possible. But the Council is concerned about two features of this effort. First, the Council is concerned with the increasing tendency on the part of some in Congress and the Executive Branch to equate the dollar costs of compliance or participation with burdensomeness or ineffectiveness. While NCD believes that the costs of compliance with all laws should be minimized, the Council also strongly believes that emphasis on the dollar costs to government and business of compliance is premature, unless accompanied by reciprocal attempts to ascertain the costs of noncompliance for individuals and for society as a whole. No statistic collected by government would recognize as a cost of nonenforcement the amount of money not earned by a person with a disability who does not get a job because of discrimination. There is no mechanism for measuring the dollar, let alone the human, benefits of civil rights compliance or for readily comparing those benefits with dollar costs. Yet all too often discussion and debate about how much compliance costs seem to end with the furnishing of cost data by those entities in a position to collect it.

Cost savings to some, without the fullest possible inquiry into the related cost benefits and losses to others, cannot represent a sufficient approach to outcomes measurement in civil rights or in any area of traditional public concern.

NCD’s second concern regarding accountability is the shrinkage of options by which citizens with disabilities can hold government and its private sector partners accountable for misapplication, error, or even discriminatory implementation of the law. Along a broad front, virtually every major program reauthorization enacted by the last Congress and every major proposal by the administration contains some curtailment of the means available to individuals for seeking redress. Most notable among these are provisions of the Individuals with Disabilities Education Improvement Act (discussed in Chapter 3) that create the possibility, under an as yet imprecisely defined legal standard, for parents who appeal against special education decisions made in connection with their children to be held financially liable for the potential attorneys’ fees of their school districts. NCD has already heard several anecdotal reports of dissatisfied parents being told by school administrators, “If you lose, you pay.”

While recognizing and respecting the widely held view that in many settings the pendulum has swung too far in the direction of individuals’ ability to intervene in expert decisions or to thwart program administration, NCD believes that accountability must be a two-way street. While federal and state oversight have always been and should remain the chief guarantors of program effectiveness and integrity, history teaches that individual self-advocacy has served not only as a spur to effective oversight but also as the source of some of our most important programmatic innovations.

Assuming the best intentions in the world, administrators may often have as much difficulty as recipients understanding the inordinately complex and technical nature of many laws. Serious and potentially harmful errors in their interpretation and administration are inevitable. Yet, against this backdrop and at the very time when we are seeking to give consumers increased control over their own lives in a variety of program settings and relationships, it would be sad indeed if we simultaneously witness systematic efforts to limit the ability of consumers to protect their growing rights.

(c) Coordination

In light of the concerns about cross-program accountability noted previously, it is extremely gratifying and reassuring to note that President Bush’s New Freedom Initiative (NFI) recognizes the interconnection of programs and subjects. The creation of issue-specific task forces and interagency committees and working groups, the issuance under the NFI rubric of multiagency reports, and a variety of other measures reflect this awareness.

In 2004, NCD published Livable Communities for Adults with Disabilities [2]. This report vividly shows how a variety of programs must work together efficiently to achieve a high quality of life for intended beneficiaries. As NCD’s work and common experience make clear, it is no longer possible to look at housing in isolation from transportation, at employment separately from health care, or at income supports in old age apart from long-term services and noncash supports. The challenge is to shape this growing awareness into processes that will fulfill the promise of coordinated planning and programming.

In part, the need is to develop accountability measures that reflect the full extent of program impacts and possibilities. But there is also an increasing need to develop planning, budgeting, analytical, and scoring methodologies that anticipate interactions and that take them into account from the very beginning. Without such intelligent design, programs are likely to continue to work at cross-purposes, to counteract each other in foreseeable or unforeseeable ways, or to create a patchwork of inconsistency and complexity impenetrable to anyone who does not devote full time to understanding the complexities.

NCD does not underestimate the difficulties associated with such efforts. Throughout this report, readers will encounter these difficulties in illustrations of inconsistency or even conflict among programs, and in instances in which the recognition of the need for coordination was sincere but achievement of the goal was largely lacking. Broadly speaking, as these examples show, the methods for implementing this next vital step in effective planning and budgeting are yet to be devised or put in place. It remains the unmet challenge, but the unique opportunity, of the NFI to demonstrate that government can act coherently, effectively, and constructively with its limited resources to build livable communities and to honor productive lives.

Each of the following chapters provides recommendations that flow from the data collected; the Council believes that these recommendations are responsive to the issues raised and to the resources available. The recommendations are also collected in a section at the end of the report. While recognizing that not all of them can be adopted, the Council believes that all will contribute to informed discussion and to the wisest and most inclusive decisions in the year to come. NCD stands ready, as it has for the past 20 years, to be of all possible help and support in these efforts.

Chapter One—Disability Statistics and Research

Introduction

Statistics increasingly lie at the heart of public policy and represent the chief source of data on which policy is based. No longer can anecdotes or emotions suffice to guide programs and expenditures. In this era of growing insistence on evidence-based data, the accuracy and completeness of our statistics thus become more important than ever.

In few areas of public policy are the demographic and other data collection issues more complex than in the area of disability. This chapter will examine the complexity and importance of some of these issues.

Section (a) addresses the role of the Census in creating our understanding of the nature and extent of disability, and in fashioning our response. Section (b) addresses new areas where statistical data is becoming a predominant source of evidence-based policy. Section (c) considers some potentially important groups that may fall through the cracks of current statistics-gathering efforts. Finally, Section (d) discusses the importance of the information we collect, as well as about whom we collect it.

(a) The Extent of Disability

The importance of the U.S. Census conducted every 10 years (the Decennial Census) and its interim and subsidiary surveys—including the Current Population Survey (CPS) and the American Community Survey (ACS)—is well known. The Census determines the allocation of seats in the House of Representatives among (and in some cases within) the states; it governs numerous funding formulas used in distributing federal funds; and it plays a large role in defining many of the issues and problems our nation faces. One need only look at the current debate over Social Security reform to see the way statistical projections of revenue, expenses, and population drive our perception of and response to problems.

One important goal of Census data collection is to determine the size of various subgroups of the population. This includes people with disabilities, whose numbers, employment and economic status, educational attainments, and health status are all vitally important questions. But while some groups may be difficult to find and count, no population subgroup presents the definitional complexities that characterize the population of Americans with disabilities.

NCD has long and carefully documented the importance and the strengths and weaknesses of our efforts to obtain accurate data on people with disabilities. Through our annual status reports and through such studies as our January 2004 report Improving Federal Disability Data [3], NCD has provided detailed commentary and strong and continuing support for improved data collection. Those concerned with these issues are urged to study this paper in depth. For the moment though, it is important to look forward to the 2010 Decennial Census, which holds out the opportunity for improving on our past efforts.

In this connection, NCD is concerned about both the content of disability-related questions and the procedure for validating these questions and arranging for their inclusion in the short-form household survey questions and the long-form follow-up interviews. Recognizing that time is limited, even at this midpoint in the 10-year Census cycle, NCD reiterates its commitment to work with the Bureau of the Census, the Bureau of Labor Statistics, and other key partners in field-testing appropriate and useful question formulations.

Broadly speaking, so far as the content of recommended questions is concerned, NCD believes that previous versions have suffered from two fundamental weaknesses. First, they have left the assessment of disability too much to the subjective responses of answerers. Second, the approaches taken have overstated and oversimplified the correlation between disability and work.

Changes in the nature of work, together with advances in technology and evolution in attitudes, have made it possible for more people with disabilities than ever to work. Any serious effort to use employment status as a marker for disability, therefore, requires attention not merely to the functional limitations posed by a physical or mental condition but to the barriers of design, transportation, disincentives, and attitudes that may combine to limit options and prevent successful outcomes. Hence, as part of our effort to understand the links between disability and the painful persistence of high levels of unemployment or underemployment, our inquiries must include an effort to obtain some sense of respondents’ understanding of what factors have contributed to their failure to obtain or retain employment, and of what factors most influence their efforts and expectations in this regard.

To help clarify the relationships among physical or mental function, intervening societal variables, individual employment, and health or educational status, and to help reduce the subjectivity inherent in the disability data collection process, NCD recommends that the Interagency Committee on Disability Research (ICDR) undertake an intensive assessment of the feasibility of applying the principles and organization underlying the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) to the formulation of Census questions [4].

In this connection, NCD also recommends that Congress adopt legislation requiring the Census Bureau to determine to the best of its ability, and to report to Congress the estimated number of persons with disabilities in our nation, together with the methodology used for arriving at that number.

(b) New Uses of Statistics

More and more, our evidence-based policy environment seeks and uses objective performance data to evaluate the impact of a variety of measures and programs. To a large degree, this objective data is statistical in nature. Moreover, in terms of planning, the objectives of many major initiatives are being expressed in statistical and numerical terms. From the savings expected to result from the National Health Information Infrastructure (NHII) discussed in Chapter 4, to the health improvements anticipated under CDC’s Healthy People 2010 initiative, to the energy savings predicted by those who favor a two-month extension of daylight savings time, proposals and policies are judged by objective statistical results.

Existing data collection techniques are being reviewed (as in the current discussions of reauthorization of the Workforce Investment Act), and new instruments and categories of data are being created (as in the tracking mechanisms put in place for educational reform or that will be used to measure the savings accrued under the NHII). A crucial issue in all these cases is that the potential for differences in the ways programs affect people with disabilities must be taken into account. It is possible that programs that yield aggregate statistical or outcome gains may not always do so for people with disabilities. It is equally possible that initiatives that do not demonstrate large-scale benefit or cost-effectiveness may have a significant impact on the lives of various subgroups, including people with disabilities. Finally, evaluative criteria used to measure program impact or program value cannot always be the same for people with disabilities as for people without disabilities. For example, one would not expect the per capita costs of successful long-term job placements to necessarily be the same for people with disabilities as for other people, any more than one would expect them to be identical for well-educated computer professionals and non-English-speaking manual workers.

Sophisticated approaches to the design of measurement strategies and tools will be needed across a broad spectrum of programs to capture and understand the key nuances and distinctions. To give a graphic example, no one would expect the per operator technical assistance call volume or call time for operators receiving TTY calls to be the same as for operators receiving voice calls. Yet, unless recognition of such distinctions were factored into the evaluation of an information and referral (I&R) service, the existence of such differences, let alone their significance, would be lost under the weight of undifferentiated, aggregated numbers.

In this light, NCD recommends that OMB incorporate measures for identifying disability-related variables in its review of all management data practices and procedures and of all data-collection instruments. OMB should not endorse or utilize data-collection instruments or program-review criteria that fail to take these variables into account. OMB should adopt methods for determining when such impacts are most likely to occur and, if they occur, when they are most capable of either skewing or being obscured by aggregate data.

(c) Reporting Requirements

Each year, seemingly countless numbers of agencies and programs submit their statutorily required reports to Congress. In light of our findings in the child-maltreatment area—that required state data was not being systematically collected or forwarded to Congress (Chapter 6)—NCD recommends that the Government Accountability Office (GAO) conduct a broad-based study of statutorily required agency, program, GPRA, and other periodic reports submitted to Congress. This study should examine the extent to which statutorily required data or other information pertinent to programs and policies affecting people with disabilities is being collected, analyzed, and made available to Congress for its consideration and use. GAO should, of course, be free to utilize such sampling techniques as it believes adequate in reaching reliable determinations on these points.

NCD recognizes that a number of existing reporting requirements may prove unrealistic, outmoded, or unduly expensive. In these cases, the Council expects that Congress will reevaluate the requirements in the light of current resources and today’s informational needs.

(d) Scoring

The FY 2006 budget proposals submitted by the President to Congress will result in painful and austere decisions. Many programs, including programs of importance and concern to people with disabilities, are certain to undergo cuts or even be eliminated. Administration recommendations on what programs should be cut or abolished will hinge in part on what are known as PART (Performance Assessment Rating Tool) ratings. These are the scores or evaluations assigned to each program by the OMB.

Without regard to any particular program, NCD believes that the process of PART scoring has taken on sufficient importance to warrant discussion and attention. Congress, in most cases, will rightly defer to OMB’s considered judgment of the relative merit of various programs in its deliberations over budgets and authorizing legislation. For this reason, NCD regards it as vitally important for Congress and the public to have the fullest possible understanding of both how the ratings process is conducted and the assumptions and goals underlying the ratings.

NCD’s particular concerns—which the Council has addressed before in the context of Congressional Budget Office (CBO) scoring [5] and the application of “undue burden” and similar standards under civil rights legislation—remain simple and straightforward. Do the criteria used fully reflect the impact of the program on the lives of the individuals to be served? Do those criteria take full account of the cross-program, intergovernmental, and long-term costs and benefits of programs? And do the methods and criteria used consider the opportunity costs that would result from elimination of the program or service?

To ensure that the criteria and methods used to evaluate programs are fully consistent with the goals of Congress in establishing the program or service, and to create the opportunity for public input into the processes by which the value of competing priorities are assessed, NCD recommends that GAO undertake a study of the PART system with a view to determining the way it reflects and balances the range of human, administrative, and other considerations that effective management and fidelity to program goals must take into account.

Recommendations

Recommendation 1.1: NCD recommends that the Interagency Committee on Disability Research undertake an intensive assessment of the feasibility of applying the principles and organization underlying the World Health Organization’s International Classification of Functioning, Disability and Health to the formulation of Census questions.

Recommendation 1.2: NCD recommends that Congress adopt legislation requiring the Census Bureau to determine, to the best of its ability, and to report to Congress the estimated number of people with disabilities in our nation, together with the methodology used for arriving at that number.

Recommendation 1.3: NCD recommends that OMB incorporate measures for identifying disability-related variables in its review of all management data practices and procedures, and in its review of all data-collection instruments.

Recommendation 1.4: NCD recommends that the GAO conduct a broad-based study of statutorily required agency, program, GPRA, and other periodic reports submitted to Congress. This study should examine the extent to which statutorily required data and other information of pertinence to programs and policies affecting people with disabilities are being collected, analyzed, and made available to Congress for its consideration and use.

Recommendation 1.5: NCD recommends that GAO undertake a study of the PART system with a view to determining the way it reflects and balances the range of human, administrative, and other considerations that effective management and fidelity to program goals must take into account.

Chapter Two—Civil Rights

Introduction

Chapter 2 addresses key civil rights issues in light of developments during 2004. It addresses them substantively, as well as in terms of the procedures and interagency relationships necessary to bring about effective implementation and advancement of the law.

The chapter begins with the Americans with Disabilities Act of 1990 (ADA). It addresses the current context of court decisions about the law and discusses means for capitalizing on the Tennessee v. Lane decision. It then discusses NCD’s work on ADA, summarizing some of the Council’s key findings and recommendations, including its support for the ADA Restoration Act. The chapter then considers the oversight role Congress can play in reviewing the proposed legislation and more broadly in reviewing the progress of ADA. Particular attention is paid to the authority and responsibility that continue to rest with Congress, even after the courts have asserted such a large role in interpreting ADA.

Finally, the ADA section discusses Executive Branch activities relating to updating ADA. These include the revision of the ADA Accessibility Guidelines and a number of other pressing issues not covered by the guidelines but of great importance to many of the law’s constituencies.

Section (b) of the chapter deals with planning and coordination issues, including the budgeting process involved in effective and coordinated enforcement of disability rights laws. With efforts to contain federal spending likely to grow more intense and imperative, anticipation of these issues and development of methods for maximizing resources and for performing evidence-based assessments of existing policies and priorities need to be developed while there is still time.

Section (c) deals with voting rights. It addresses developments and issues under both ADA and the Help America Vote Act (HAVA). Commending several major initiatives of 2004, the section emphasizes the need for continued attention and coordination among the several agencies involved in HAVA implementation and counsels that, even in a nonelection year, loss of focus or momentum would be dangerous.

Section (d) reiterates the need for hate crimes legislation to protect vulnerable people with disabilities from opportunistic or prejudice-based violence, much as laws already protect racial and ethnic minorities. The section recommends positive congressional action on pending legislation on this subject.

Section (e) addresses the need for legislation barring the improper use of genetic information. It reviews some of the concerns underlying the need for genetic nondiscrimination legislation, recommends adoption of legislation introduced into the last Congress, and identifies two areas in which interactions between genetic information and other privacy laws warrant executive Executive Branch investigation and action.

(a) The Americans with Disabilities Act

1. The Supreme Court’s Landmark Lane Decision

In cases decided over the past five years, the Supreme Court has interpreted and applied the Americans with Disabilities Act. These cases are discussed in detail in NCD’s series of issue briefs titled Righting the ADA [6]. The issues are brought fully up to date in NCD’s major Righting the ADA report of December 2004 [7].

For the most part, these cases have been decided in ways that NCD and much of the disability community regard as violating the intent of Congress in adopting the ADA [8]. Several of the decisions interpreted ADA as a whole and are applicable to all of its three major titles of employment, state and local government, and public accommodations. Most notable among these would be the three decisions known as the Sutton trilogy, which held that whether an individual has a disability must be determined after the application of “mitigating measures” [9]. Other decisions specifically related to Title I, employment. Most notable among these is the Garrett decision, which held that Congress lacked constitutional power to authorize suits by private individuals against state governments seeking money damages for disability-based employment discrimination [10]. By the end of 2003, Title II of ADA, dealing with state and local government, had emerged as the least interpreted and least narrowed of the three major titles.

It was against this backdrop that the disability community watched the Supreme Court oral argument in January 2004 and awaited the Court’s decision in the case of Tennessee v. Lane. The facts of this case have been so widely reported and discussed as to need no repetition here. Because the defendant State of Tennessee conceded that the inaccessibility of the courthouse was a violation of ADA [11], the legal issue in the case could be narrowly and clearly focused on whether the statute was constitutional in authorizing suits by citizens against states. Thus, Tennessee contended not that it had complied with the law, but that the suit seeking to enforce the law and punish its violation could not be brought. The state argued that this suit was barred by recent Supreme Court decisions holding that the Fourteenth Amendment prevented suits by private citizens against states to enforce a number of federal laws. ADA, Tennessee argued, should be added to that list.

The plaintiffs, on the other hand, contended that in light of the central role of access to the courts in any definition of citizenship or in any notion of full participation, the history of discrimination brought to Congress’s attention when it enacted ADA provided ample constitutional justification for the law and the enforcement mechanisms it contained [12]. Moreover, the plaintiffs contended that without the right of citizens to enforce the law, including by suit, no effective means for protecting many key civil rights would exist.

By a 5-4 margin, the Supreme Court ruled that Title II’s application was constitutional and that the lawsuit could be brought and decided on its merits [13]. Reflecting its crucial awareness of the importance of access to the courts, the decision stated the following:

“Like Title I, Title II seeks to enforce the Fourteenth Amendment’s prohibition on irrational disability discrimination. But it also seeks to enforce a variety of other basic constitutional guarantees, including some, like the right of access to the courts here at issue, infringements of which are subject to heightened judicial scrutiny. Congress enacted Title II against a backdrop of pervasive unequal treatment of people with disabilities in the administration of state services and programs, including systematic deprivations of fundamental rights. With respect to the particular services at issue, Congress learned that many individuals, in many States, were being excluded from courthouses and court proceedings by reason of their disabilities. Congress’s chosen remedy for the pattern of exclusion and discrimination at issue, Title II’s requirement of program accessibility, is congruent and proportional to its object of enforcing the right of access to the courts.

“This duty to accommodate is perfectly consistent with the well-established due process principle that, within the limits of practicability, a State must afford to all individuals a meaningful opportunity to be heard in its courts.

“Ordinary considerations of cost and convenience alone cannot justify a State’s failure to provide individuals with a meaningful right of access to the courts.”

As with so many far-reaching Supreme Court rulings, the real meaning of the Lane decision may take some years to unfold. Of course, the decision prevented a dramatic further closing of the courts to people with disabilities in the most literal sense of the word. But time and further cases will be required before we can know whether the Court will apply these access rights to a broader range of state and local government services, facilities, and programs, or whether it will restrict this role for Title II enforcement to a narrow range of settings (like courthouse access) deemed particularly central to equality and citizenship.

NCD commends the Supreme Court for its enlightened and careful analysis in the Tennessee v. Lane case. In light of the narrow margin of victory, the uniquely compelling facts underlying the case, and the special scrutiny long extended to access to the courts, the Council also recognizes that much work and reinforcement will be needed if the Lane decision is to take its enduring place in the annals of civil rights. For the moment though, it may be worth noting that the decision was issued 50 years to the day after the Supreme Court announced its Brown v. Board of Education ruling, regarded by many as the seminal court decision of the 20th century.

NCD believes there is much the disability community, Congress, and other interested citizens can do to help ensure that Lane lives up to its highest potential. Therefore, the chapter turns next to some strategies for preserving and revitalizing the civil rights values enshrined in ADA.

2. The ADA Restoration Act

NCD has proposed the ADA Restoration Act [14] as a means for correcting what our analysis concludes are the serious and unwarranted losses of civil rights protection for people with disabilities resulting from the succession of Supreme Court decisions noted previously. NCD’s proposals do not come lightly, but are supported by exhaustive analysis of the nature, rationale, and impact of judicial decisions interpreting and applying ADA. In its report Righting the ADA, released December 1, 2004, NCD analyzes each of the key legal controversies the Supreme Court and the lower courts has addressed [15]. While recognizing that Congress cannot alter the Supreme Court’s constitutional decisions, many of the most pressing issues reflect only judicial interpretations of the statute that can be modified by Congress.

This annual status report is not the place to detail the findings of the Righting the ADA report or the proposals contained in the recommended legislation. NCD urges all those with an interest in this subject, or who recognize the importance to the future of our nation of its efforts to fully include people with disabilities in mainstream society, to review the report in depth. We believe that people of goodwill will find its recommendations sensible and balanced, carefully designed in accordance with the original intent of Congress, and capable of achieving the goals of ADA in a manner that both maximizes the opportunities for inclusion of people with disabilities and reflects the rightful desire of all to prevent undue financial and other burdens from falling on individuals, businesses, or other entities and institutions.

Therefore, NCD recommends that the 109th Congress include among its highest domestic priorities the holding of public hearings on the proposed ADA Restoration Act legislation. In approaching these oversight and legislative hearings, NCD urges that Congress proceed with several key points in mind. First, Americans with disabilities have reason to feel alienated from and fearful about the law’s ability to protect their rights. Second, people with disabilities note the repeated introduction in Congress of the ADA Notification Act that, by imposing notice requirements before the filing of suits under ADA, would treat ADA claimants differently from people seeking to assert their rights under any other federal law [16]. Third, people with disabilities note language in Supreme Court opinions suggesting a belief among some of the justices that disability discrimination is rational [17]. And fourth, people with disabilities recall that the Supreme Court has applied principles of statutory interpretation to ADA that are at variance with those normally used in other civil rights contexts, which the court adopts and abandons without explanation, but in ways that seem to indicate their selective use to bring about negative results. [18]

There is yet another matter that NCD urges in Congress’s consideration of these hearings. Beyond the suspicion of double standards, one-of-a-kind ad hoc legal reasoning, judicial hostility, and result-oriented decision making, there are two problems with the Supreme Court’s decisions that cannot be overlooked. First, the decisions are consistent in expressing concerns for the impact of ADA on the costs or other burdens and responsibilities faced by private, state, or local governmental entities [19]. Absent from the decisions, however, is any parallel concern for the impact of the rulings on the lives of Americans with disabilities or any effort even to assess that impact. Put another way, there is little attempt to place a value on opportunity costs borne by large numbers of individuals with disabilities or to balance these costs with the financial costs to government or the private sector. There is no recognition of the admittedly complex, finely crafted set of assessments developed by ADA to ensure that just such balancing takes place.

Let us examine one important case in this light. In Murphy v. United Parcel Service, the Supreme Court ruled that employees with diabetes were not entitled to reasonable accommodations (such as specifically timed breaks to take insulin) because their blood sugar could be controlled by medication [20]. Such medication was a mitigating measure, and with it taken into account, these workers failed to meet the law’s definition of disability, because no major life activity was substantially limited by their physical condition. It can be argued that if these workers are not covered by ADA, the impact of the decision on them is beyond the scope of the Court’s inquiry. After all, the decision was jurisdictional, and how can the impact on people who simply fall outside the jurisdictional category be part of the record or the discussion?

But whether covered by the law or not, the fact remains that some of these workers may continue to need reasonable accommodations, and some are going to be unable to control their blood sugar and insulin levels adequately with drugs, and some are going to have insurance that doesn’t cover the needed pharmaceuticals. How many people have lost jobs or have failed to obtain or been refused jobs because employers, freed from any obligation under ADA, simply decided that in a labor market with more applicants than jobs, they might just as well not bother hiring someone with diabetes who might prove more complex or expensive to manage or insure?

One would have thought or hoped that the U.S. Supreme Court, which has shown itself willing to speculate about financial or other harms to business or government going well beyond the record in many of the cases before it, would pause to recognize the utility, if not the imperative, of at least acknowledging the consequences of its rulings for the vulnerable and isolated individuals whose destinies are at issue in those cases. The Supreme Court had every right to hold that the law does not cover them, but NCD believes it owes the American people some acknowledgment of their existence and some awareness of the likely harm that will befall many.

NCD also looks forward to working with Congress to identify key facts and myths, and to helping distinguish the products of data and experience from those of misunderstanding and fear, as well as, more important, to emphasizing the potential of hope. For example, a number of states have adopted definitions of disability that are broader than ADA’s definition, as narrowed by the courts [21]. Many of these definitions dispense with the requirement of a showing of “substantial limitation” in a major life activity, and some do not look to the potential availability of “mitigating measures,” regarding these mitigating measures as relevant not to the definition of disability but to the question of what accommodations or services would be appropriate.

What is important about these alternative definitions is what has and what has not happened in the states that have adopted them. NCD is unable to find a shred of empirical data or even credible anecdotes suggesting that use of these alternative, far less restrictive definitions has resulted in increased expenses, additional demands, or any other burdens or impositions on small business. Any claims that broadening of the ADA definition would give rise to such risks must carry a burden of proof in light of the evidence of absence of any such consequences in a number of states.

Another issue NCD hopes to assist Congress in fully addressing is the way the role of the courts and the balance of power among the branches of government have been changing since ADA was written. Through the use of the Commerce Clause of the Constitution [22] and, as noted above, the Eleventh and Fourteenth Amendments, the Supreme Court has shown itself willing to declare congressionally enacted civil rights laws unconstitutional. Under these circumstances, Congress must not lose sight of the prerogatives and responsibilities it retains, including its right and responsibility to review and react to judicial determinations of what Congress itself meant to do or say in various statutes. Even if Congress were to determine that it was entirely satisfied with the Supreme Court’s ADA jurisprudence, that determination should come after a full and public review of what the Court has done.

A related concern involves the often-used term “judicial activism.” Throughout the recent campaign, President Bush insisted strongly that appointed judges, however wise and well intentioned, should not make decisions best left to the people through their elected representatives. In the case of ADA, the analytical tools the Supreme Court has adopted have led to a situation in which in many instances judges are called on, with little guidance from anywhere, to decide whether a given physical or mental impairment does or does not limit a major life activity and, if so, whether the limitation is substantial. As documented in the Council’s Righting the ADA report, the Supreme Court has not been consistent or clear in its definition of “substantial limitation” or even in its identification of which “major life activity” is relevant in each situation. As a result, there is uncertainty today as to whether working, in its own right, is regarded by the Court as a major life activity.

Judges also have little guidance on what, if any, nexus needs to exist between a major life activity and the tasks of the job. The situation is, in short, impossibly confused, leaving employees, employers, and parties to various other relationships and transactions dangerously uncertain and unnecessarily fearful. Uncertainty in the law is never good for anyone—not business, government, or the individual and family. The costs of uncertainty are difficult to measure, but surely they are as or more worthy of concern than the costs of compliance.

At the moment, it is enough to say that Congress will find fertile opportunity for rebalancing the law, for taking into account a host of legal and technological developments of the past 15 years, and for clarifying expectations and responsibilities across society by taking up the findings and recommendations of NCD’s report.

3. The Americans With Disabilities Act Accessibility Guidelines

A. Guidelines Revision

The Americans with Disabilities Act Accessibility Guidelines (ADAAG), promulgated by the U.S. Department of Justice (DOJ) in 1992, represent the principle regulatory guidance for interpreting ADA [23]. The ADA statute contemplated that the guidelines would be updated from time to time. The process of updating the guidelines began in 2004 with the issuance on July 23 of proposed new and revised guidelines by the Architectural and Transportation Barriers Compliance Board (Access Board) [24].

The proposals issued by the Access Board will not necessarily become law, however. Ultimately, the final guidelines will be those adopted by DOJ. As its opening step in the process, the Department issued an advance notice of proposed rulemaking (ANPRM) seeking public comment on, and examples of, cost-benefit data bearing on ADA [25]. The comment period ended January 28, 2005. Thereafter, following review of the comments and of the Access Board’s proposals, DOJ issued a notice of proposed rulemaking (NPRM) and extension of comment period until May 31, 2005, setting forth its proposed final guidelines and providing opportunity (typically between 60 and 120 days) for public input before the revised guidelines become final.

NCD commends the Access Board for its work in updating the guidelines. In particular, NCD appreciates the clarification of legal requirements that should result from inclusion in this edition of the guidelines of subjects and facilities covered by ADA but not previously referenced by ADAAG. Among these requirements are children’s playgrounds, public rights of way, correctional facilities, and recreational facilities [26]. Accordingly, NCD recommends that coverage for these important facilities and services be retained in the final DOJ guidelines.

Pending the issuance of the NPRM, NCD will not make detailed comments on the Access Board’s proposals at this time. The Council does, however, believe that legal developments involving ADA during 2004 give rise to an urgent need for certain matters to be covered. These matters are not required by the statute to be addressed, so they are not included in the Access Board’s revised ADAAG proposals; but they are issues that have been brought to the fore by court decisions and by changes in technology in recent years.

B. Needed Update

First and perhaps foremost among subjects the DOJ must address, whether through ADAAG or by other means, is the issue of the applicability of ADA to the Internet. In September 2004, in the case of Access Now v. Southwest Airlines, the U.S. Court of Appeals for the Eleventh Circuit dismissed the appeal from a lower court decision [27]. The district court had concluded that the Web site of Southwest Airlines was not covered by Title III of ADA and therefore did not need to be accessible. This ruling by the Court of Appeals has been widely misunderstood, but that very misunderstanding, together with the reasons for it, demonstrate why action by DOJ is greatly needed by potential plaintiffs and defendants alike. NCD commends DOJ for the amicus briefs it has filed in several cutting-edge Internet-related ADA cases [28], but more needs to be done to clarify the law.

Although the effect of the Court of Appeals action in the Southwest Airlines case was to let the lower court judgment against accessibility stand, in fact the Court of Appeals did not affirm or endorse the judgment of the lower court. It simply dismissed the appeal from that judgment, principally on the ground that the issues sought to be raised in the appeal could not properly be considered by the appeals court because they had not been raised before the lower court first.

Thus, key questions of ADA jurisdiction and statutory interpretation were left open. Most important among these is the question of whether airline Web sites or related electronic and information technology (E&IT) such as ticketing machines, baggage weighing machines, and other such modalities are governed by ADA at all or by the Air Carrier Access Act (ACAA) [29]. As discussed in Chapter 10, the Department of Transportation believes that the ACAA is the controlling statute; it has issued an NPRM that would establish accessibility requirements for airline Web sites.

The Eleventh Circuit never considered the role of the ACAA. But regardless of which statute controls the situation, a second key problem has to do with issues the plaintiffs did try, but were unsuccessful in, raising. This is the nexus theory of ADA applicability to private sector Web sites. In essence, the nexus theory, which a number of courts have endorsed [30], holds that if there is a sufficient connection or nexus between the Web site and activities conducted at a “place” of public accommodations, then Title III of the ADA requires that the Web site, as an extension of the place of public accommodations, be accessible, even though Title III may not generally apply to Web sites.

Through the ADAAG update process or by other means, DOJ needs to provide guidance to business and the public as to its views regarding the viability of the nexus theory and as to, if nexus is the proper test to be applied, what standards determine when a sufficient nexus exists to trigger application of ADA to the commercial Web site. Leaving the matter wholly to case-by-case determination cannot serve the interests of predictability or effective Web design. With some courts embracing nexus, others completely denying the applicability of ADA to the Web under any circumstances, and still others accepting that ADA covers the commercial Web without need of establishing a nexus, failure by DOJ to authoritatively address this issue can only lead to uncertainty and chaos.

4. Other Issues

Experience with ADA over the past year has suggested a number of other areas in which DOJ may wish to address emerging questions or problems of interagency coordination in the law’s interpretation.

A. Service Animals

One of the great advances wrought by ADA is the establishment of a clear right, not dependent on varying state laws, to use and be accompanied by service animals in places of public accommodation [31]. Recently however, attempts to expand the definition of service animals under other laws have created the potential for confusion.

In 2003, the Department of Transportation (DOT) issued a new and expanded definition of service animals [32]. This definition was promulgated under the ACAA and is the basis for determining what service or companion animals will be allowed to accompany people on commercial air flights and in airports. The trouble is that because this definition was established under the authority of a different statute than ADA, and applies only in places where ACAA takes precedence over ADA, a traveler who is allowed to take a companion animal on an airplane may arrive at her destination only to find she is not allowed to bring the same animal into her hotel room at journey’s end. Great confusion and real danger to the person and to the animal can result.

In this connection, anecdotal information reaching NCD indicates that many people believe that a physician’s prescription of a service animal is enough to qualify the animal as a service animal entitled to admission to places of public accommodation. While it is not clear where this erroneous belief comes from, it may have something to do with confusion between the provisions of ADA and the requirements of other laws. For instance, the Internal Revenue Code (IRC) allows service animal costs to be deducted as medical expenses but does not use the ADA definition [33].

It may be argued that since the ACAA and the IRC are not administered by DOJ, the Department lacks authority to provide clarification or coordination of statutes that it does not enforce. But DOJ can and should take the lead in developing joint issuances with the coordinate agencies involved so that confusion can be avoided and continuity in the understanding and application of the law can be maximized.

Apart from coordination between ADA and other statutes, concern is warranted over whether the procedures and standards adopted by the various federal agencies with concurrent jurisdiction over ADA reflect a high degree of consistency and coherence. While some variation is inevitable in how agencies interpret and apply the law, NCD recommends that DOJ should undertake a comprehensive assessment of ADA requirements, monitoring, and administration as understood and practiced by all federal agencies with relevant jurisdiction. If DOJ determines that excessive variation or inconsistency exists, it should seek to develop means for creating greater predictability and uniformity.

B. Availability of Legal Assistance

In January 2004, DOJ entered into a settlement with an upstate New York attorney whose failure to provide a sign-language interpreter in a domestic relations divorce case for consultations with his client who was deaf constituted a violation of ADA [34]. Discussions with people with disabilities, including but not limited to people with hearing impairments, have yielded concerns regarding whether people with various disabilities are finding availability of legal representation artificially constricted by the unwillingness of attorneys to take them on as clients.

NCD recommends that DOJ undertake an inquiry into this question, and that it develop and disseminate such targeted technical assistance (TA) resources as may be appropriate to remind the legal profession of its obligations in the client-acceptance, auxiliary services, office accessibility, and related areas.

C. Privacy and Confidentiality

In areas from health information to credit histories, individual privacy and data confidentiality are becoming matters of ever-growing concern and increasing legal magnitude. As the crime of identity theft has reached epidemic proportions, the significance of these issues and the consequences when standards are breached have become much more far-reaching and profound.

Many of the entities called on to guard privacy rights and adhere to confidentiality requirements in their dealings with people are also subject to ADA. The question of the interplay between its requirements and the requirements of other laws needs to be systematically addressed. Last year’s status report discussed the implications of informed consent and related requirements of the Health Insurance Portability and Accountability Act (HIPAA) for information access by people with sensory or other disabilities. As new and self-contained legal formulations—such as the new law governing access to credit reports (effective December 1, 2004)—come into play [35], it has become increasingly clear that a comprehensive review of these legal interrelationships between ADA and other privacy laws is greatly needed.

If a credit report is available to a person with visual impairment only in standard print, then, by definition (because the services of a third party are required in order to read it), confidentiality is impossible. If key oral information in a medical examination, including securing consent, requires the intervention of a sign-language interpreter in communication between practitioner and patient with a hearing impairment, confidentiality cannot be ensured.

How and whether ADA has anything to say about resolving these matters and about what is required represent important dimensions of the application of these and future laws to the lives of people with disabilities. Put simply, DOJ needs to determine whether the “effective communication” requirements of ADA are violated when people with disabilities are compelled to waive their privacy rights conferred under other laws because of the inaccessibility of personal information or because information is communicated inappropriately.

NCD recommends that DOJ develop procedures for anticipating issues arising under other laws but that impact ADA and procedures for working proactively with other agencies to develop strategies and approaches that answer key questions and provide necessary guidance.

(b) Federal Funding for Civil Rights Enforcement

The U.S. Commission on Civil Rights has regularly tracked federal spending on civil rights over the past 10 years, most recently in its report Federal Funding for Civil Rights Enforcement: 2005 [36]. While this report documents greater support for some civil rights programs than for others, it reflects a firm and steady commitment by the Administration and Congress to the work of the Disability Rights Section of DOJ’s Civil Rights Division. But as all domestic spending comes under pressure in the effort to control federal spending, it is readily foreseeable that this, as well as other civil rights enforcement and outreach programs maintained by a variety of government agencies, may face stagnation or reductions in the resources available to do their work. On the eve of this new era of scarcity, efforts at coordination, planning, and priority setting will be required if the efficacy of civil rights programs is to be maintained.

NCD believes that such an effort must begin with two steps. First, procedures must be developed for maximizing effective coordination among agencies and programs in the information-collection, case-referral, rulemaking, and technical assistance–public outreach spheres. Existing planning processes, such as those carried out by each agency under GPRA, established intergovernmental review and coordination processes and other budget and program coordination activities carried out by OMB. While valuable, these activities do not necessarily ensure continuity and consistency in the interpretation and enforcement of major civil and disability rights laws.

The second, closely related step is to undertake serious planning for future levels and allocation of civil rights funding and other enforcement resources. What are the next steps for federal funding of civil rights enforcement? Where do we need to go? Are there optimal staffing ratios of personnel to caseloads, personnel to inquiries, or personnel to technical assistance commitments? What is the best allocation of resources among the potentially competing goals of public education, guidance development, public outreach, enforcement and other priorities? Among agencies with overlapping jurisdictions, what methods exist for determining the most effective allocation of resources, and what strategies exist for sharing of resources to leverage them as much as possible?

NCD does not presume to know the answers to these questions, but the Council believes it is critically important for them to be addressed thoughtfully and at the highest levels. NCD recommends that the administration appoint by Executive Order a high level commission to examine, beyond mere numbers and statistics, the effectiveness of current civil rights practices and relationships, to develop evidence-based tools for evaluating the relative efficacy of varying priorities and expenditure patterns, and to recommend overarching funding and administrative strategies to ensure effective cross-agency planning and monitoring efforts in the future.

(c) Voting

Voting was uppermost in the minds of many Americans during 2004. For voters with disabilities, it was a year of important milestones on the path to what the Assistant Attorney General for Civil Rights has justly called participation in democracy [37].

Developments occurring in 2004 can be divided into two groups. The first group relates directly to the integrity and accessibility of the voting process in 2004. The second group set the stage for full implementation of HAVA, which begins January 1, 2006.

Regarding developments pertaining to the recent elections, in February 2004 DOJ issued the ADA Checklist for Polling Places [38]. NCD commends DOJ for publication of this resource and believes it provided and consolidated important information and guidance on many issues faced in the various settings where polling takes place.

As valuable as the checklist was, it necessarily took only ADA as its point of departure, because HAVA was not yet in effect. Thus, the checklist had comparatively little guidance to offer about the nonphysical barriers to voting, such as inaccessible voting machines that many voters with cognitive, sensory, or other disabilities continue to confront. The coming challenge will include creating the synergy between ADA and HAVA that will bring about the greatest overall benefit.

Because of the dual or potentially overlapping jurisdiction created by HAVA, developments under that statute are also of great importance. In this connection, NCD congratulates the federal Election Assistance Commission (EAC) for its issuance, in conjunction with the National Institute on Standards and Technology (NIST) in April 2004, of the report Improving the Usability and Accessibility of Voting Systems and Products [39]. Without standards as to what constitutes accessibility in the design and operation of voting systems, the challenge of promulgating and implementing voting accessibility requirements cannot be effectively met. For this reason, the EAC-NIST report, mandated by Section 243 of HAVA, represents an important marker on the path to achieving the goal of at least one accessible voting machine per polling place by 2006.

Although the 2006 elections may seem a long way off, efforts to effectuate the new law by then must proceed every day, without loss of focus or resources. As is so often the case with major initiatives and crucial concerns, jurisdiction is divided among a number of federal agencies, including, in this case, the EAC, the Department of Health and Human Services (HHS), and DOJ. Congress, through the appropriations process, will also continue to play a key role, as will state and local elections officials around the country.

Beyond noting its concerns and urging continued focus and attention, NCD has no new recommendations to make at this time.

(d) Hate Crimes

NCD continues to believe that our law needs to do more to recognize and respond to the problem of crimes against people with disabilities. As detailed in annual status reports over the past several years, NCD believes that prejudice of the sort eligible for enhanced punishment is a factor in many offenses against people with disabilities. For this reason, the Council has continued to advocate for inclusion of disability in federal hate crimes legislation.

NCD supports the Local Law Enforcement Hate Crimes Prevention Act of 2004 (H.R.4204; see also S.966), which was introduced with 178 cosponsors in April and referred to the House Judiciary Committee’s Subcommittee on Crime, Terrorism and Homeland Security

NCD recommends that this legislation, or other legislation embodying similar protections for crime victims and vulnerable people with disabilities, be reintroduced and passed in the 109th Congress.

(e) Genetic Discrimination

NCD has repeatedly expressed serious concerns regarding the misuse of genetic information, including in each of the last three annual status reports. While valuing and supporting the enormous potential of genetic testing and treatment to identify health problems and improve treatments, NCD also recognizes that unrestricted access to genetic information by employers, insurers, landlords, or others can result in the making of crucial decisions about people’s lives on the basis of factors that ought to play no part in critical access to employment, insurance, or housing.

NCD therefore recommends that the 109th Congress make the adoption of genetic nondiscrimination legislation a top domestic, health care reform and human rights priority.

Pending congressional action, NCD urges the following two measures upon the Administration. First, the Attorney General should determine whether genetic decision making in the employment context ever constitutes a violation of ADA. To the extent that an employer declines to hire an otherwise qualified individual because of a genetic characteristic or predisposition of such person, the refusal to hire is generally not limited to a single or specific job. The refusal would, logically, apply regardless of the job being applied for. Arguably, this constitutes discrimination under the “regarded as” test of Title I of ADA [40].

NCD recommends that DOJ issue an opinion as quickly as possible regarding whether it considers refusal to hire on genetic grounds a violation of ADA and, if it does determine that such practices violate the law, that it immediately proceed, in cooperation with the Equal Employment Opportunity Commission (EEOC), to enforce the employment discrimination provisions of Title I of ADA accordingly.

NCD also recommends that the Secretary of Health and Human Services determine whether personal genetic information is covered by the privacy standards implemented pursuant to the Health Insurance Portability and Accountability Act of 1996 (HIPAA) regulations, implementation of which came into force in 2003. If, as the Council believes may be the case, genetic information should come under HIPAA protections, then HHS should move quickly to implement appropriate safeguards. Opportunities for protecting personal genetic information will also emerge in the design of the National Health Information Infrastructure (discussed in Chapter 4).

Recommendations

Recommendation 2.1: NCD recommends that the 109th Congress hold public hearings on the proposed ADA Restoration Act legislation and adopt its major recommendations.

Recommendation 2.2: NCD recommends that issues and guidelines proposed by the Access Board for inclusion in the revised ADA Accessibility Guidelines be retained in the final guidelines that DOJ adopts.

Recommendation 2.3: NCD recommends that DOJ should undertake a comprehensive assessment of ADA requirements, monitoring, and administration as understood and practiced by all federal agencies with relevant jurisdiction.

Recommendation 2.4: NCD recommends that DOJ undertake an inquiry into the issues of the availability of attorney services to people with disabilities where effective communication or other accessibility issues must be addressed in order to ensure an effective attorney-client relationship.

Recommendation 2.5: NCD recommends that DOJ develop procedures for anticipating issues arising under other laws but that impact ADA, and procedures for working proactively with other agencies to develop strategies and approaches that answer the key questions and provide the necessary guidance in such areas as privacy and confidentiality of personal information.

Recommendation 2.6: NCD recommends that the administration appoint, by Executive Order, a high-level commission to examine, beyond mere numbers and statistics, the effectiveness of current civil rights practices and relationships; to develop evidence-based tools for evaluating the relative efficacy of varying priorities and expenditure patterns; and to recommend overarching funding and administrative strategies to ensure effective cross-agency efforts in the future.

Recommendation 2.7: NCD recommends that legislation on hate crimes currently before Congress, or other legislation embodying similar protections for crime victims and vulnerable people with disabilities, be reintroduced and passed in the 109th Congress.

Recommendation 2.8: NCD recommends the 109th Congress make the adoption of genetic nondiscrimination legislation a top domestic, health care reform, and human rights priority.

Recommendation 2.9: NCD recommends that DOJ issue an opinion as quickly as possible regarding whether it regards refusal by employers to hire on genetic grounds to be a violation of ADA and, if it does determine that such practices violate the law, that it immediately proceed, in cooperation with the Equal Employment Opportunity Commission (EEOC), to enforce the employment discrimination provisions of Title I of ADA accordingly.

Chapter Three—Education

Introduction

This chapter will examine recent developments and current opportunities in the integration of the No Child Left Behind Act (NCLB) and the special education system, as recently revised by the Individuals with Disabilities Education Act (IDEA) amendments of 2004 [41]. After reviewing the regulatory environment in which key decisions are now being developed, major sources of guidance in formulating and implementing special education programs will be examined. These include NCLB; the findings of ongoing NCD oversight, including the Council’s 2004 paper on improving educational outcomes [42]; and the new directions and initiatives embodied in the reauthorized IDEA.

The report will next discuss issues raised by NCD and other observers that have not been addressed either by IDEA or NCLB and its implementing regulations. Finally, the chapter will address developments in higher education as they relate to the aspirations and opportunities for students with disabilities.

(a) Current Context

1. The Legal Framework

On December 3, 2004, President Bush signed the IDEA amendments into law. This bill, at least two years in the making, reauthorizes and significantly amends the Individuals with Disabilities Education Act of 1997 [43].

Implementation of the law will proceed during the course of this year. The Department of Education (DOE) has issued a request for public comment as part of the process of writing implementing regulations [44], and the Department will hold focus groups in order to obtain stakeholder and public input [45].

NCD commends DOE for this participatory and inclusive process. NCD believes this outreach will result in useful and broad-based input, and NCD stands ready to be of all possible assistance to the Department as it goes about its work.

The work of implementing the new IDEA poses unusual challenges. Not only must a complex and far-reaching piece of legislation be interpreted and applied under requirements that place a premium on the least amount of regulation needed to apply the law [46], but the law must be interpreted and applied so as to maximize its consistency and coordination with NCLB, including under circumstances in which the absence of cross-referencing or the potential for contradiction makes this more difficult.

2. Individualization and Testing

When NCLB was enacted, one of its main premises was that federal involvement in education was too process-oriented and not sufficiently outcome-driven. Thus, NCLB concentrated on making improved student and school performance (measured primarily by academic outcomes) the chief goal of federal policy and the chief criterion for determining program outcomes and success. Under NCLB, schools and school districts are required to demonstrate adequate yearly progress (AYP) as measured by test scores, and all students are expected to participate and to have their test results counted in aggregate outcomes.

While it would be hard to find anyone who disagreed with the goals of annual improvements in school performance for all students, including students with disabilities, major issues surround full incorporation of the NCLB methods and standards into special education. Often, students with disabilities need to be assessed by alternative techniques, provided with reasonable accommodations, or learn in different ways that necessitate modifications to the standard curriculum. Variables such as these render test results noncomparable and nonstandard.

Beyond the technical, statistical, and equity issues involved, broader philosophical chasms had to be crossed as well. Deeply embedded in the philosophy of special education was the notion of individualization. This is the notion that students needed individualized approaches and goals, and that in many instances their progress needed to be judged by the achievement of the individual’s goals and by the overcoming of the individual’s obstacles, not by some universally applicable set of norms and numbers. These views, together with the relatively small number of students involved, made inclusion of students with disabilities in universal testing a difficult process.

Schools and school systems are now being judged by their levels of year-on-year improvement. Fears appear to be widespread among mainstream educators that inclusion of all students with disabilities in standardized testing could lower their schools’ aggregate scores and thus put them at a disadvantage compared to other schools.

To respond to all these concerns, various measures have been adopted. These include clarification of how and when alternate assessments can be used, particularly for students with intellectual disabilities, within the framework of states’ accountability requirements [47].

3. The New Idea

The new IDEA seeks to achieve congruence with NCLB in a number of ways. A detailed analysis of the changes wrought in IDEA by the new law, as well as a discussion of many of the relationships between IDEA and NCLB, can be found in a Congressional Research Service (CRS) report, which was released on January 5, 2005 [48].

Against this backdrop, and at this unique crossroads in the history of inclusive education in our nation, NCD wishes to examine some of the provisions of the new law as they bear upon existing practices and identified needs.

(b) Major Goals of Reform

1. NCD’s Long-Term Concerns

In its recent paper “Improving Educational Outcomes for Students with Disabilities” [49], NCD continued the history of attention and concern for educational issues that has marked its work over the years. In this paper, NCD identified a number of key outcome goals that need to be addressed and achieved if educational opportunities and achievements for students with disabilities are to reach equality with those of other students. These goals included reducing the high school dropout rate for students with disabilities; increasing the proportion of nondropouts who leave school with academic diplomas as opposed to certificates of attendance; operationalizing high standards in terms both of expectations and outcomes for students with disabilities; finding and applying evidence-based research and practices and converting them into educational practices and techniques; and ensuring the availability of highly qualified special education teachers.

NCD believes these outcome-oriented goals to be strongly supportive of the principles of NCLB. T