December 2000--December 2001

National Council on Disability
July 26, 2002

National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004

National Disability Policy: A Progress Report
December 2000--December 2001

This report is also available in alternative formats and on NCD's award-winning Web site (www.ncd.gov).

Publication date: July 26, 2002

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The views contained in the 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

July 26, 2002

The President
The White House
Washington, DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I am pleased to submit NCD's National Disability Policy: A Progress Report, as required by Section 401 (b)(1) of the Rehabilitation Act of 1973, as amended.

This report covers the period from December 2000 through December 2001, the end of the first session of the 107th Congress. It reviews federal policy activities by issue areas, noting progress where it has occurred and making further recommendations where necessary to the executive and legislative branches of the Federal Government.

Disability is not the experience of a minority of Americans. Rather, it is an experience that will touch most Americans at some point during their lives. Today, more than 54 million Americans have disabilities, a full 20 percent of the U.S. population. About half of these individuals have a severe disability, affecting their ability to see, hear, walk, or perform other basic functions of life.

Significant barriers, however, still exist for individuals with disabilities who try to participate fully in American society. People with disabilities want to be employed, educated, and active citizens in the community. Unfortunately, on average, Americans with disabilities have a lower level of educational attainment and are poorer and more likely to be unemployed than those without disabilities. In today's global economy, America must be able to draw on the talents and creativity of all its citizens.

In your New Freedom Initiative, you laid out a blueprint to increase investment in and access to assistive technologies and a high-quality education and to help integrate Americans with disabilities into the workforce and into community life. This initiative comes at a time when many disability advocates are expressing concern about the future of disability policy. NCD will work with your Administration and Congress to ensure that every individual with a disability has access to the American dream.

With strong, representative, and experienced leadership and open, ongoing input from the disability community, we can meet the challenge to make the most of the opportunities facing us at the start of your new Administration. NCD has completed over the past several years civil rights policy evaluations directly related to the disability policy areas addressed in the New Freedom Initiative. NCD invites you and your Administration to draw on the research and studies conducted by our agency for information on how and where executive agencies can act to the maximum benefit of their consumers.

NCD stands ready to work with you and stakeholders inside and outside the government to see that the public policy agenda set out in the attached report, in Achieving Independence, in a series of civil rights monitoring studies published as NCD reports, and in the New Freedom Initiative is implemented.

Sincerely,

Marca Bristo
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
Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson

Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Ela Yazzie-King

Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ed.D., Director of Research
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Allan W. Holland, Chief Financial Officer
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Joan M. Durocher, Esq., Fellow

Acknowledgment

The National Council on Disability wishes to express its appreciation to Steve Mendelsohn for assisting in the development of this report.

Contents

PART I

Executive Summary
Introduction
Chapter 1: Disability Statistics and Research
Chapter 2: Civil Rights
Chapter 3: Education
Chapter 4: Health Care
Chapter 5: Long-Term Services and Support
Chapter 6: Issues of Special Concern to Youth
Chapter 7: Employment
Chapter 8: Welfare Reform
Chapter 9: Housing
Chapter 10: Transportation
Chapter 11: Assistive Technology and Telecommunications
Chapter 12: International
Chapter 13: Homeland Security
Endnotes

PART II

Major Activities Summary--Fiscal Year 2001
Appendix--Mission of the National Council on Disability

PART I

Introduction. The National Council on Disability's (NCD) 2001 annual progress report marks a turning point in public policy, with the advent of a new national Administration. Such moments in our history not only offer great hope for innovation and reform but also require a sense of continuity, necessitating perspective and awareness of what has come before and a recognition of the continuity and complexities underlying policy in all spheres.

To help link the past and the future, NCD provides an overview of some of the major public policy initiatives in disability during the decade of the 1990s. These initiatives can be grouped in three areas: civil rights, service delivery programs, and technology. Although the various works differ in accordance with their goals and contexts, the body of work constituting the statutory record of the 1990s reflects an overarching and unifying conceptual framework that gives the laws much in common.

Among the key features these diverse laws have in common are the recognition that issues of concern to Americans with disabilities, such as the design of our public buildings and communications infrastructure, can no longer be addressed in isolation from the general society; the fact that consumer participation is a key element in the effective operation of all programs and laws; the awareness that advocacy resources and technical assistance are critical to the success of all initiatives; and the belief, in areas ranging from employment to education to housing, that society benefits by the inclusion of Americans with disabilities in the mainstream institutions of society.

The laws have also recognized that the allocation of the costs of nondiscrimination and inclusion are often as important as any assessment of the total amount of such costs. For that reason, the laws also have in common various mechanisms aimed at ensuring that the burden of access and equality will not unduly fall on a narrow range of institutions or entities. Equally, the costs of policy not only must be reckoned in the sense of what is required to achieve various goals but also must include a sophisticated awareness of both the costs of inaction and the indirect benefits of various measures and strategies.

NCD has played an important, ongoing role in identifying issues and barriers, bringing key actors from within and without government together, and providing objective, unbiased data from which policy can be reliably derived or better understood. This role is discussed from a historical standpoint and as it relates to the demands of this new era.

If continuity is important, it must alert us to our collective failures as well as remind us of our successes. A series of NCD reports has documented failures in enforcement across a broad spectrum of programs and laws. Without credible enforcement, even the best laws become ineffective. Just as we know that laws in other areas are not self-executing, so must we carry this awareness into the disability policy arena. With energetic enforcement, the sincere efforts of most can be honored, the dereliction of the few can be addressed, and the goals of public policy can be effectively and consistently advanced.

Census 2000 and Disability Statistics. Problems continue to be associated with widely used disability employment and other data, including issues surrounding the collection and analysis of relevant and reliable statistical data on America's population with disabilities.

The findings of the 2000 Census, together with those of other compilations relating to the employment status of Americans with disabilities, have been severely questioned on methodological and validity grounds. The accuracy of these data are critically important in an era of evidence-based policy because misleading information can lead to misguided or premature public policy decisions.

Federal agencies extensively use and underwrite the costs of disseminating a great variety of disability data. Whereas people should be entirely free to use whatever data and data sources they see fit, public money should not be used to support the dissemination of suspect findings and conclusions.

Similarly, in other areas of disability research, new barriers have emerged to the collection and analysis of reliable data. These barriers range from the new definitions of disability crafted by the courts under various statutes to the problems associated with measuring function as it relates to employment, education, or independent living when assistive technology is taken into account.

The report recommends that the Federal Government review and rationalize the range of statistical efforts and test proposed new measurement techniques and research practices to ensure their reliability before they are put into widespread use.

Civil Rights. A perceived hostility toward disability on the part of the courts, congressional proposals that would treat disability civil rights laws differently and more harshly than any other laws, and other factors have combined to create a sense of great unease and fear among America's population with disabilities. In light of persistent under enforcement of civil rights laws and lax monitoring of the requirements of service programs, the report examines each of the major areas where erosion in civil rights protections has occurred or is seriously foreseen.

Major areas addressed and explained are court decisions dramatically restricting the applicability of the Americans with Disabilities Act (ADA); lack of coordination among agencies or of material progress in key enforcement areas identified over recent years as needing reform; failure to include persons with disabilities among those protected by hate crimes laws; failure to stem genetic discrimination by employers and insurers that disproportionately affects persons with hidden disabilities; the need for continued outreach to people with disabilities from diverse cultural groups who face cultural, linguistic, and other barriers to full participation in society and who interact with the issues posed by societal reactions to their disabilities; court decisions outside the ADA that adversely impact access to the courts by persons with disabilities and, in the aggregate, can be characterized as reflecting a closing of the courts to individual citizens; and the need for greater outreach to the disability community by the Department of Justice in formulating its interventions through amicus curiae briefs in Supreme Court and other major federal court cases involving the rights and interests of Americans with disabilities.

Education. As the Individuals with Disabilities Education Act (IDEA) faces reauthorization, we must carefully assess the implications of our approach to education for students with disabilities and sensitively apply the policy initiatives central to the No Child Left Behind Act (NCLBA)--the reauthorization of the Elementary and Secondary Education Act. At the same time, the successes of special education should not be overlooked, and the widely documented need for more effective monitoring and enforcement should be borne in mind under any revised framework.

In addition to the issues surrounding implementation of NCLBA and a review of NCD's comprehensive IDEA assessment study, NCD specifically deals with the charge of the President's Commission on Excellence in Special Education; the key issues and controversies involved in IDEA reauthorization, including student discipline; minority overrepresentation among students receiving special education services; parental involvement and due process; use of assistive technology; universal design and access to mainstream school technology, instructional materials, and media; disability harassment; full funding; and accountability of schools for the educational outcomes of special education students.

Health Care. NCD has a long record of activity, research, and involvement in the area of health care and access to medical resources and services. Against this background of interest and expertise, the current congressional and national debate over the Patients' Bill of Rights raises important questions for what inclusion means for people with disabilities in the health care realm.

In connection with this proposed legislation, the report identifies issues and offers analysis and recommendations concerning coverage of all privately insured persons; access to specialized care; point-of-service options; continuity of care; standing referrals; timely and accurate information, including accessible information, regarding details of coverage and available options for treatment; access to clinical trials and availability of clinical trials for assistive technology or other nonpharmaceutical interventions and modalities; grievance procedures; medical necessity determinations; and mental health parity.

Beyond this proposed patients' rights legislation, the report deals with the status of efforts to identify and treat persons with mental health conditions in the criminal defendant and prison population; the problem of balancing pain-relief promotion with the avoidance of assisted suicide; the need for reforms in Medicare and the procedural vehicles available for carrying out the necessary review of current program rules; and the potential applicability of telemedicine to persons with disabilities, who are likely to be among its most frequent users.

Long-Term Services and Supports. Taking the unprecedented interagency effort culminating in the Department of Health and Human Service's December 2001 Olmstead implementation report as its point of departure, NCD reviews the Administration's continuing support for the Supreme Court's Olmstead decision and draws out implications; analyzes the major premises of the report as a basis for clarifying the issues and options it raises; discusses the economics of Olmstead as these relate to national policy favoring institutional versus community-based living and care for all Americans, including those who are elderly and those of a younger age with disabilities; discusses some of the other, specific programmatic initiatives addressed in the report and in other expressions of Administration policy; considers the implications of broad-based policy changes favoring community-based and in-home services and care for the private long-term care insurance and other non-Medicaid recipient populations; and addresses the role of Social Security Disability Insurance (SSDI) and other programs of particular concern to people with disabilities in the context of social security reform.

Youth. Although such issues as housing, education, health care, and even employment are important for everyone, within each of these areas are some subjects of particular concern and importance for our youth with disabilities. One key example is school-to-work transition services, as required by both the federal Rehabilitation Act and IDEA. Widely recognized to be inadequate, despite notable successes in certain localities, these services are crucial for the ability of students with disabilities to enter adult services and employment after leaving school.

NCD discusses chronic transitioning problems and suggests several remedial approaches, such as establishing system-to-system continuity in the availability of assistive technology; cost-shifting between rehabilitation and education agencies; and the implementation of joint accountability between the service systems for the success of transition services and programs.

Employment. As it is for society as a whole, employment is a cherished goal for most Americans with disabilities, but one that continues to elude all too many. Implicating the education, vocational training, health care, and transportation systems as they do, the barriers to increased employment for people with disabilities are as complex and multifaceted as those faced in any area of policy, even as enhanced employment becomes the ever-more central objective of so much public policy in the disability area.

For this reason, NCD's discussion of this subject begins with an appraisal of the importance of interagency coordination, focusing particularly on the potential of the new Office of Disability Employment Policy to spearhead the necessary effort. Related to the discussion of statistics, NCD also examines the sources and role of statistics in the employment policy sector.

Major new initiatives in employment policy are also dealt with, including issues surrounding the implementation of the Ticket to Work and Work Incentives Improvement Act; recent federal hiring initiatives to expand opportunities for persons with psychiatric disabilities; federal initiatives to ensure the availability of information about the provision of reasonable accommodations in governmental employment; and concerns regarding the accessibility and responsiveness to work-aspirants with disabilities of the resources and services of one-stop career centers.

From the standpoint of the broadest possible perspective, two other issues are covered: the proper role of the Federal Government in ensuring that those operating under federal contracts, grants, or licenses adhere to principles of nondiscrimination and accessibility; and the role of employment tax incentives for both workers with disabilities and businesses in stimulating opportunities and heightening the prospects for success and job tenure.

Welfare Reform. As Congress and the nation prepare to fashion this year the reauthorization of the 1996 welfare reform law, a number of questions about the intersection between welfare and disability, as well as about the use and coordination of resources, emerge as needing discussion and answers. To the degree that states are obliged to meet return-to-work and related targets under the welfare system currently in effect, NCD notes that effective identification of recipients with disabilities and coordination with other programs in meeting their needs can contribute to the ability of states to meet their employment goals. Such attention can also facilitate the effective entry into employment of persons with caretaker responsibilities for children or other family members with disabilities.

NCD recommends that the new law include clear provisions, incentives, and mechanisms to assist state welfare reform systems in reaching out to vocational rehabilitation, developmental disabilities, and other programs to identify and marshal the resources and expertise that will contribute to the quality of work with persons with disabilities among those receiving or at risk of needing welfare supports.

Housing. Housing plays a role in every aspect of people's lives, from the amount of discretionary money available for meeting other needs to the time and distance involved in going to work to the quality and availability of a wide range of community resources. Affordable housing is in short supply for many Americans, but for people with disabilities, the scarcity is exacerbated by inaccessibility and all too often by discrimination.

Based on the definitive findings of its November 2001 report Reconstructing Fair Housing, NCD reviews the status of fair housing and equal opportunity laws and practices, including the organization of the fair housing laws' enforcement effort; complaint-handling and case-processing procedures; funding of fair housing resources; enforcement of fair housing laws; mediation alternatives to litigation; disposition of aged cases that have remained unresolved in the enforcement system for prolonged periods of time; and such related matters as the role of "visitability" in housing policy and the benefits to be expected from the Department of Housing and Urban Development's (HUD) fair housing survey.

The progress report then addresses related issues, such as means for increasing the supply of affordable and accessible housing; expanding the use of housing vouchers; and stimulating home ownership, including proposals to galvanize market forces on behalf of accessible design; and providing incentives for the availability of mortgage financing for persons with disabilities.

Transportation. For many Americans with disabilities who cannot drive or who, if they could drive, do not have the resources for the adaptive driving controls, lifts, telescopic systems, or other assistive technology that may be necessary, accessible transportation represents one of the chief barriers to participation in economic and community life.

Air travel presents its own set of vexing issues. Implementation of the Air Carrier Access Act has long involved a delicate balancing of nondiscrimination and security concerns. In the wake of the tragedy wrought by terrorism in September 2001, implementation of this law has become all the more difficult and, at the same time, more and more important.

NCD describes the issues that have emerged and the problems reported around the country by air travelers with disabilities, many of whom have been inconvenienced and some endangered by misapprehensions and suspicions on the part of security screening personnel that appear to have little to do with the imperatives of security. NCD recounts these concerns, based on the reports reaching it, and makes proposals for additional measures on the part of the Department of Transportation (DOT) to ensure that the ability of Americans with disabilities to travel by air will not be unduly restricted.

Although agreements and requirements have been set in place for establishing timetables and performance standards for the implementation of accessibility for travelers with disabilities on intercity buses, grounds exist for concern regarding the speed, adequacy, and universality of compliance. NCD discusses these concerns and makes recommendations for the follow-up and monitoring necessary to make certain that the legal and societal expectations in this area are met.

NCD also makes recommendations for improved collaboration between the Department of Justice (DOJ) and the DOT in the implementation and enforcement of civil rights laws bearing on transportation. NCD's major report on the ADA, Promises to Keep, disclosed significant shortcomings in the ability of the DOJ and DOT to work together in enforcement, including the DOT's referral of cases to the DOJ when other methods for solving problems proved unavailing. As in other areas of the law, enhanced coordination plays a large role in enforcement, and methods for increasing this coordination are at hand.

The President's New Freedom Initiative discusses some of the transportation issues affecting people with disabilities and was followed up by budget recommendations for a variety of pilot demonstration and competitive programs aimed at improving transportation access and options for people with disabilities. Regrettably, some of these initiatives did not meet with initial approval by Congress. NCD recommends that Congress reconsider its decisions in this area and delineate a range of transportation strategies and modalities that these innovative programs ideally ought to include.

Although we travel today much as we did 50 years ago, research and innovation in transportation are emerging as important elements of our future. Innovative personal transportation vehicles are being introduced and will come into greater use with time, but by no means is it certain that these innovations will prove as meaningful to people with disabilities as they could. To maximize their relevance to all Americans, NCD makes recommendation for the testing and evaluation of these new devices and designs by and with people with disabilities so the developers can be informed, at a time when modifications in the service of accessibility should still be possible, of the extent to which these devices currently and prospectively can meet the needs of persons with disabilities.

Paratransit remains a concern for many of its users, according to anecdotal reports coming in from around the country. NCD recounts the most frequently heard of these complaints and problems and makes suggestions for how these services can be monitored and improved.

Technology and Telecommunications. Giving birth to what we call the information society, the so-called technological revolution has changed our lives more dramatically and irrevocably than almost any other force or set of developments. Whereas the general assumption is that this is a democratic revolution with benefits and opportunities for all, for many people with disabilities some new technologies are as much or more a barrier to than a source of access and inclusion. The cellular telephone is a great boon to many, but for people who use hearing aids, problems of incompatibility have made cell phones largely inaccessible and unusable. The graphical user interface has vastly enhanced access to high-speed data and pictures, but if Web sites are not designed with persons who use speech access in mind, these ubiquitous technologies become impenetrable walls blocking access to the wealth of information and opportunity the Web conveys.

Because the implementation of Section 508 of the Rehabilitation Act in mid-2001 was a watershed for assistive and accessible technology, NCD reviews the experience of operating under this statute thus far and discusses the issues that have emerged in the operation of the law to date. NCD makes proposals for oversight, technical assistance, and outreach and discusses the applicability of the law to telecommuting by federal employees.

Distance learning has made the benefits of education and training available to many people who could not otherwise obtain them. But again, these benefits may prove illusory to computer users with disabilities unless accessibility is taken into account in the design of the software and course materials. Based on the work of a national commission, NCD discusses the issues involved and makes continuing recommendations designed to ensure that no one is excluded from the promise of this new modality.

The so-called e-rate, providing grants and subsidies for Internet access to schools and libraries, is one of the most important innovations of the Telecommunications Act of 1996. But those entities receiving such subsidies or cash grants have not been required to make their resources accessible to students or library patrons with disabilities. NCD reviews the history of efforts to correct this and calls on the Federal Communications Commission (FCC) to propose reforms.

Another key provision of the Telecommunications Act is Section 255, which requires telecommunications equipment and services to be accessible to individuals with disabilities where readily achievable. Based on research and experience under the law, NCD identifies a number of barriers to its effectiveness and recommends reforms in such areas as enforcement and the apparent distinction the law makes between voice communication, which is covered by the law, and the communication of data or pictures, which appears not to be covered by it and hence is subject to no accessibility requirements. NCD offers recommendations for studying and remedying this anomaly.

A wide variety of activities are encompassed under the concept of e-government. NCD discusses the implications, achievements, and management of the variety of measures and strategies involved as they relate to access to governmental information and programs by persons with disabilities.

Recent developments in copyright law may bring intellectual property and disability access rights into collision in cyberspace. NCD describes the sources and implications of this conflict and requests clarification of the law from the appropriate administrative agencies as a first step in determining whether further legislation is required.

Among the many agencies and actions praised in the report, NCD takes note of the FCC's opening of a proceeding aimed at reviewing the temporary statutory exemption of wireless phones from coverage under the Hearing Aid Compatibility Act of 1988. NCD expresses confidence that this will result in the exercise by the FCC of its statutory discretion in favor of requiring that such phones be brought under the coverage of the law.

With the Assistive Technology Act of 1998 scheduled to sunset on September 30, 2002, NCD reviews the unique role played by the programs operating under this small but highly instrumental law, notes the needs that would go unmet if the program were to be abolished, and recommends reauthorization of the law.

International. With full recognition of the many critical issues competing for the attention of American foreign policymakers and with full regard for the balancing that must underlie so many foreign policy decisions and initiatives, NCD reiterates recommendations for the incorporation of disability rights, alongside women's rights and respect for diversity, in America's foreign policy commitments. In particular, NCD offers recommendations to support inclusion of Section 504-like antidiscrimination provisions.

NCD also discusses and will participate in development of a United Nations (UN) convention on disability and recounts awards made at 2001's commemoration of the International Day of Disabled Persons, praising the awardees and expressing confidence that the new Administration will produce its own generation of honorees.

Homeland Security. Sadly, no discussion of public issues can be complete today without a recognition of the imperatives of security. Based on reports and concerns expressed from around the country, NCD expresses a number of concerns regarding the ability of people with disabilities to obtain key security information or to participate fully in community responses to emergency situations. For the most part, these dangers can be avoided by simple planning, but addressing them should be part of the overall emergency preparedness planning process.

The advent of a new national administration is an opportune time for looking forward, but new approaches and innovative policies are not created in a vacuum. For the sake of the lessons learned and to understand the historical and programmatic context in which to make new policy initiatives or corrective systemwide decisions, looking forward must include some looking back. Only with perspective on what has been accomplished as well as what has not been achieved can we begin the process of building consensus around what remains to be done.

An enormous amount of activity, and an impressive legacy of achievement in enhancing equality and opportunity for Americans with disabilities, constitute the data from which we derive both perspective and prospects. The past decade has been a period of remarkable accomplishment and energy in the articulation and expansion of civil rights, employment and educational opportunity, technology access, and, perhaps most of all, attitudinal change around disability in our society.

In concert and cooperation with other federal agencies and partners in the nonprofit and private sectors and with the commitment and participation of individuals and organizations in the disability community, the National Council on Disability (NCD) is proud to have played a role in the development and growth of a bipartisan consensus for opportunity and inclusion. In reports, recommendations, and performance reviews, NCD has helped to frame the debate, made detailed recommendations for change, and monitored the efficacy and enforcement of a variety of programs and laws. NCD has sought to serve as a catalyst to progress, a bridge builder among sectors and stakeholders, and a source of reliable information and tempered judgment in the identification of barriers and in defining the form necessary changes should take.¹

What has characterized the work of the 1990s? Foremost in the record of the past decade are major legislative achievements in several areas. Principal among these areas are civil rights, service delivery, and access to technology. Overarching and unifying this legislative record are two dominant and recurring themes: (1) people with disabilities deserve the same opportunities in society as everyone else, and (2) decisions society makes about broad issues of policy, ranging from health care, housing, and education to telecommunications and transportation, inevitably affect people with disabilities just as much as they do everyone else. People with disabilities must be involved in leadership roles in policymaking and implementation processes.

CIVIL RIGHTS

Symbolically, the decade began in 1990 with the enactment of the Americans with Disabilities Act (ADA),² which has often been referred to as the landmark civil rights statute for people with disabilities. Dealing with employment,³ access to state and local government services,⁴ and access to public accommodations,⁵ the ADA barred discrimination on the basis of disability and established the obligation of mainstream public and private institutions to reasonably accommodate persons with disabilities.

While controversy surrounds some aspects of ADA implementation and enforcement, few would dispute that the law has had a profound effect, both in terms of creating opportunities to learn, work, and participate in society for many people with disabilities and as a spur to institutional and attitudinal changes in all sectors of our society. The wheelchair lift on city buses or the braille signage in the elevators of major buildings testify not merely to our creation of a more accessible environment but more broadly to the changes in attitudes and awareness that have marked this era.

As our awareness of people with disabilities has grown, so has our understanding of the range of situations in which their interests, opportunities, and civil rights hang in the balance. Through the development of our awareness and because of advances in technology, the meaning of access has come to be redefined. This redefinition has been embodied in a number of important new laws, including Section 255 of the Telecommunications Act of 1996⁶ (requiring telephone equipment and services to be accessible to people with disabilities) and Section 508 of the Workforce Investment Act of 1998⁷ (mandating that electronic and information technology bought and used by the Federal Government for use by federal employees or members of the public be accessible on terms of equality to all persons, irrespective of disability).

These and other civil rights statutes of the decade have many features in common, but their chief unifying element lies in the recognition of the indispensability of what is best called accessible or universal design. This means that these statutes recognize the impossibility of fully integrating people with disabilities into mainstream society without the buildings, facilities, communications infrastructures, and institutional practices and policies of a variety of entities being designed and implemented with all potential participants and users in mind. Thus, although once it may have been appropriate and sufficient to create jobs in sheltered, segregated settings for people with disabilities, today we understand that only the mainstream economy can provide the resources and rewards necessary to create and sustain the needed range of opportunities and that the competitive economy is where all willing and able workers should be employed. Although formerly we created overly restrictive instructional settings for children with disabilities, now we know that mainstream, integrated settings are the educational venue of choice for a majority of our children. And although once we devised purpose-built, "dedicated" devices--ranging from braille typewriters to hearing aids--to accommodate the communication needs of persons with disabilities, now our laws have come to recognize that participation in the communications environment of today cannot be achieved or preserved by these approaches alone but requires that the entire information infrastructure be designed and deployed with accessibility and usability in mind.

In many ways, the World Wide Web is a metaphor for the 1990s. As such, it illustrates the need for accessible design of mainstream environments if assistive technology (AT) is going to be effective in securing access to the Internet for people with disabilities. The guidelines implementing Section 508 therefore contain detailed information on the functional requirements governmental Web sites must meet in order to be deemed accessible. A number of prestigious private sector organizations have also provided accessibility guidelines⁸ and accessibility assessment tools.⁹ The Web brings a world of information onto a computer and has enriched the lives of many with disabilities. Yet, technology creates challenges of its own. For example, the brilliant graphics that add life to many Web pages can make it difficult for a person with visual impairments to get the information he or she needs from a Web site. Now, through application of Section 508 accessibility standards, federal agencies must include descriptive text with Web page images. As another example, the captioned video Web casting that brings live events to a desktop computer can make it possible for a person who is deaf to follow the proceedings.

Even in this time of unprecedented national crisis and peril, our commitment to the maintenance of moral as well as practical balance can be glimpsed in the issuance of a fact sheet by the Federal Aviation Administration (FAA)¹⁰ providing guidance on application of the Air Carrier Access Act (ACAA) (which provides for nondiscrimination against persons with disabilities in air travel and in airport services and practices) to our new airport security imperatives. The fact sheet reinforces the continued applicability of the ACAA, while making clear how its application is necessarily conditioned by the need for dramatically heightened air travel security under current world conditions.

Yet another archetypal statute of the 1990s demonstrates the evolution in our notions of what equal access means and our parallel recognition of the role of technology in bringing this equality of access about. In 1990 Congress enacted the Television Decoder Circuitry Act,¹¹ which required virtually all TVS sold in America to be equipped with a closed-caption decoder chip. This chip ensures that all TV watchers can access closed captioning, whether they are deaf or not, and that they can do so without the necessity of spending several hundred dollars to buy and install a separate decoder box. The Decoder Act created a new market for captions, as anyone who has ever attempted to watch TV in a crowded sports bar or noisy airport well knows. It has probably also saved more than one relationship by allowing the partner who likes to watch TV late into the night do so without disturbing the sleep of the partner who hates noise.

By itself, the Decoder Act could not create or guarantee the existence of captioned content. For that, the law had to go further, requiring (as the Federal Communications Commission [FCC] did under the Telecommunications Act of 1996)¹² that major TV networks provide specified amounts of captioned programming.

In our nation's heightened commitment to technology as a tool for increasing employment and enhancing the productivity of our economy, the role of assistive technology as a means for increasing employment opportunities for persons with disabilities has not been overlooked. Most recently, this commitment has been taken up in President Bush's New Freedom Initiative (NFI).¹³ Measures aimed at ensuring the accessibility of mainstream technology to people with disabilities and measures for ensuring the compatibility of mainstream with assistive technology will remain indispensable components of our strategy.

Likewise, in areas where technology does not necessarily mediate access and participation, our approach to the articulation and enforcement of civil rights has partaken of the same values. For example, in housing, a slowly evolving thrust of policy has been in the direction of making our nation's overall housing stock accessible to the maximum extent possible. So also in long-term services, our growing commitment to community living and deinstitutionalization for all has extended to older Americans and Americans with disabilities alike.

Everywhere then, in sphere after sphere, the recognition has taken hold that Americans with disabilities have the right to equal access and full participation and that the design of programs, facilities, and systems must take the rights, needs, and legitimate aspirations of these Americans into account.

SOCIAL LEGISLATION AND HUMAN SERVICE SYSTEMS

Through federal-state partnerships, our nation operates a number of service systems designed to provide educational and vocational rehabilitation (VR) and other services to people with disabilities. Based on the recognition that people with disabilities need interventions and service inputs that people without disabilities do not need but that have not historically been provided within the general labor market and public educational program frameworks, these programs can perhaps best and most generally be described as intended to create a level playing field for Americans with disabilities. These programs have been influenced in fundamental ways also by the values of integration and equality that have come to the fore in the past decade. The Individuals with Disabilities Education Act (IDEA), as substantially revised in 1997,¹⁴ most graphically demonstrates this philosophy through its commitment to mainstream education in the least restrictive environment and in its procedural and substantive provisions regarding the role of parents in the identification of needs and in the delivery of key special education and related services.

From their beginnings to the present day, major service programs--including developmental disabilities services,¹⁵ Medicaid,¹⁶ special education under IDEA, and VR¹⁷--have contained civil rights protections for those receiving services. These provisions have been strengthened and clarified throughout the 1990s. Specific provisions embodying our commitment to civil rights in these service programs have included appeal and other due process procedures for impartial review of agency or program decisions; requirements that individualized case services be provided pursuant to plans of service, in the nature of contracts jointly developed and agreed to by the service-provider agency and the individual or family receiving services; requirements that key program information be effectively communicated to the service recipient, including in alternative formats where necessary; and requirements for when and how the need for AT must be taken into account in the eligibility-determination, needs-assessment, and service-planning phases of involvement.

CONSUMER PARTICIPATION

As these due process, informed consent, and related procedural requirements indicate, consumer involvement, based on notions of empowerment and self-determination, has also been a key feature of statutes adopted or substantially amended during the 1990s. These principles are also evident in the overall structure and governance of these programs (e.g., the establishment of rehabilitation advisory committees, state independent living councils, state developmental disabilities planning councils, and similar entities) to guide state and local agencies in the administration of the programs. Additionally, on the program-planning and regulatory-development levels, the commitment is evident in the methods adopted by such federal agencies as the Access Board and the FCC for developing guidelines to implement the requirements of Section 255 of the Telecommunications Act and Section 508 of the Workforce Investment Act. On both occasions, a government-industry-consumer committee was created (i.e., the Telecommunications Access Advisory Committee [TAAC] in the one case, the Electronic and Information Technology Access Advisory Committee [EITAAC] in the other).

ADVOCACY AND SYSTEMS CHANGE

Recognizing that the direct effects of many programs and expenditures can be magnified by long-term systems-change, many of the legislative enactments of the 1990s have included this concept among the goals and resources they provide. Illustrative of this feature of contemporary policy are the systems-change strategies and options contained in the Assistive Technology Act of 1998¹⁸ (formerly the Technology-related Assistance for Individuals with Disabilities Act [the Tech Act]) Amendments of 1994.¹⁹ State-based projects funded under Title I of the Act have been given the task of obtaining a greater visibility for, and focus on, AT in the work of a variety of agencies and programs in their states.

Systems-change, often expressed in terms of removal of barriers to employment, to education, to accessing other services, or to the acquisition of AT, is also a prominent feature of the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA),²⁰ which endeavors to reduce key work disincentives in the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) programs. TWWIIA is aimed at changing the health insurance system. Because recipients of benefits under these programs typically become ineligible for cash benefits after entering or returning to work, the linkage between cash benefits and Medicaid or Medicare health insurance coverage under these programs has often left those who return to work uninsured when, as is all too frequently the case, they cannot obtain adequate health coverage through their employers. To help remedy this serious disincentive, TWWIIA extends to a total of about eight years the time during which Medicare recipients can continue to be covered under this insurance program and broadens the options available to the states for changing their Medicaid systems by allowing TWWIIA work-returnees to retain health insurance benefits under this program as well.

Most recently, the Bush Administration, although not embracing traditional systems-change terminology, has undertaken a multiagency study of a variety of barriers to access and participation in the programs operated by and in the laws governing more than a half dozen major federal agencies. This self-evaluation effort, undertaken as part of the Administration's Olmstead initiative and conducted pursuant to an Executive Order issued in June 2001,²¹ resulted in the preparation of a preliminary report and findings by the Department of Health and Human Services (HHS) on December 26, 2001.²²

Closely related to systems-change is advocacy. Legislation of the past decade often has provided advocacy resources for use both on behalf of and by individuals and for use in bringing about broad-based legal or institutional reform. Thus, such statutes as IDEA include technical assistance resources for training parents in understanding the special education system and in fully benefiting from the rights and services the law offers. Technical assistance to people with disabilities, governmental entities, and business is also a key component of the ADA and represents a significant element of the Department of Justice's (DOJ's) implementation of that statute.

Advocacy assistance has not been confined to education and training or to the provision of information about the law; it has also included creation of individualized legal advice and assistance resources, mainly through the protection and advocacy (P&A) system, to assist individuals not only in understanding but also in securing their rights. Such resources exist in the VR system, in the developmental disabilities program, and under the TWWIIA.

RESEARCH

Recognizing the technological, legal, economic, and social complexities associated with many of the issues faced by Americans with disabilities, Congresses and Administrations of both parties have placed a high priority on research. Conducted mainly through the National Institute on Disability and Rehabilitation Research (NIDRR)--also through a number of other agencies and programs under the auspices of agencies ranging from the Department of Commerce, the Department of Veterans Affairs, and the National Science Foundation--this research effort has featured the creation and support of a number of specialized rehabilitation engineering research centers (RERC) and rehabilitation research and training centers (RRTC). These include centers devoted to specific kinds of technology (e.g., telecommunications access, augmentative communications, or wheeled mobility) and centers concerned with specific issues or groups (e.g., older persons or children or technology transfer).

THE NATIONAL COUNCIL ON DISABILITY

NCD has been an active partner and catalyst for change in the public and private sectors over the past years, from its role in conceptualizing and building consensus and momentum around the passage of the ADA to its Tech Watch and other subject-specific watch committees that seek to identify access problems before they become acute and reach out to government and the private sector in an effort to foster timely dialog aimed at resolving problems to its recent work in developing consensus recommendations around education program monitoring²³ and description and elimination of the discrimination faced by persons with mental illness.²⁴

As an oversight agency without legal power to direct the actions of others, NCD's impact stems from the cogency of its arguments and the depth of its commitment. Most recently, NCD has published a series of five civil rights monitoring reports addressing in detail the implementation of the ADA, IDEA, the Air Carrier Access Act, the Fair Housing Amendments Act, and Section 508 of the Rehabilitation Act.²⁵ Growing out of findings and recommendations from its 1996 disability summit,²⁶ these reports have cataloged impressive achievements in the protection of civil rights, but, as will be discussed, they have also uncovered serious and recurrent problems.

ENFORCEMENT

Taken individually and as a whole, these reports show that enforcement of disability civil rights statutes and of civil rights provisions of the laws creating service programs has fallen far short of what is minimally necessary to make these laws effective. Whereas the specifics differ from statute to statute and from enforcement agency to enforcement agency, some of the chronic problems disclosed are lack of resources devoted to enforcement; failure of agency leadership to identify enforcement as a high priority; lack of clear enforcement goals or of accountability for failure to meet such goals as do exist; absence of pattern and practices reviews by oversight agencies; poor coordination between and among agencies with overlapping or dual jurisdiction; lengthy backlogs and delays in civil rights complaint processing; failure to give the disability community reason to believe that consistent and meaningful redress for real grievances is available under law; and inconsistent involvement by people with disabilities in articulating priorities and providing advice on implementation.

NCD believes that without credible sanctions, achievement of progress in civil rights under law becomes all the more slow and difficult. As detailed later in this report, the stakes on effective federal enforcement have grown higher in the past year because a series of U.S. Supreme Court decisions has significantly narrowed the opportunities available for individuals with disabilities to pursue their rights by private lawsuits. These decisions include limiting the range of people who meet the definition of "qualified individual with a disability" for purposes of coverage under the employment discrimination provisions of the law; barring many suits by individuals against states for violation of most disability civil rights laws; and restricting the availability of fees to attorneys who represent individuals with disabilities in many civil rights settings.

THE NEW FREEDOM INITIATIVE

Another development in disability policy during the past year was the issuance in February of President Bush's New Freedom Initiative (NFI), reflecting the president's support for equality of opportunity and full participation in society for Americans with disabilities. The NFI includes several innovative approaches to the achievement of these goals. NCD believes that in the years ahead, through refinement and implementation, whether dealing with existing laws or with new legislative proposals, enforcement will remain key to achieving NFI's objectives and outcomes.

In charting new directions and seeking new ways to harness the energies and values of our society, the Administration and Congress can make all our laws meaningful by enforcing them with fairness and vigor, thereby bringing closer the day when not merely the laws but the values they enshrine become axiomatic in our daily lives and shared experience.

CONCLUSION

In the pages that follow, NCD continues its annual practice of reviewing policy developments from the preceding year and offering constructive, forward-looking recommendations in areas of greatest concern. NCD comes to its task this year with a sober awareness of the many new complexities, issues, demands, and preoccupations that lawmakers and members of the executive branch face. It does so also with the realization that the new policy initiatives and programmatic directions charted by the Administration and Congress will have profound and irreversible effects on the lives of all our citizens for many years to come.

In pursuing these new directions, we know society can no longer afford to consider so-called "disability issues" in isolation from the broader dimensions of policy and practice. Whether involving education, employment, health, or technology, the decisions we make about these subjects for the mainstream will affect all of us and cannot be made without full awareness of our indissolubility and oneness as a nation. Nor can decisions about disability policy be made in a vacuum or on a clean slate. The context for these decisions and the options available to us are defined by what has gone before, and only through careful attention to the strengths and weaknesses of that record can we hope to build on our successes, avoid repetition of failures, and escape confusion and chaos. With attention to the past and confidence in the future, the potential of our values, our resources, our technology, and certainly our people is unlimited.

Disability Statistics and Research

1. CENSUS 2000

NCD's 1999-2000 progress report expressed and documented grave concerns over the accuracy and reliability of widely disseminated information about employment rates among people with disabilities.²⁷ Our concern was that data developed from the latest Current Population Survey (CPS) questionnaire could lead to ineffective or even dangerous public policy decisions. The concern was based on a federal consensus that certain CPS items are not adequately designed to elicit accurate and reliable information from people with disabilities. So, recognizing the problems associated with the use of CPS data to assess employment rates, the Presidential Task Force on Employment of Adults with Disabilities (PTFEAD) was tasked to develop more accurate and reliable methods for determining the employment status of people with disabilities. This work is expected to be completed by July 2002--PTFEAD's sunset date--and is being conducted through the Bureau of Labor Statistics.

But even as recognition of the deficits in our current data is confirmed by further research,²⁸ repetition and dissemination of these data continue, much of that dissemination carried out with federal support. The danger of the situation is not merely in the proliferation of questionable findings, but in the effect of those findings on policy. For example, based in part on the conclusion that employment rates among people with disabilities have decreased during the 1990s, as the CPS data suggest, some researchers have inferred that the ADA, enacted into law in 1990, must be irrelevant or even a hindrance to the employment of Americans with disabilities.

As Congress and the courts grapple with key employment policy and civil rights issues, our deliberations must be guided by accurate and timely information. Whatever one believes about the wisdom of the ADA, the reliability of information is indispensable in evaluating its effects.

The Federal Government should not encourage or support the dissemination of employment data until a methodology for assessing employment rates among people with disabilities that is acceptable to leading researchers and demographers in the field and credible to persons with disabilities can be developed. This methodology, including proposed questionnaires or other data collection instruments, should then be validated through field testing before being put into widespread use.

Perhaps some researchers have embraced the CPS data and have been prepared to draw conclusions from it because it filled a vacuum. In the absence of other, more widely accepted, data and given the need for policy inputs, use of these data was convenient. But now, with the possibilities of a reliable methodology close at hand and with the Bureau of Labor Statistics findings expected soon, moving to the next stage of public policy development in this area should be possible and relying on questionable data simply because we have nothing better to fill the vacuum should no longer be necessary.

The issue here is not federal censorship but sponsorship. Although people have every right to use whatever data sources they choose, the government has an obligation to ensure that the information dissemination it supports, and the policy inputs it thereby generates, are as reliable as possible. To that end, when the Bureau of Labor Statistics offers a new methodology for the collection of employment data, NIDRR should convene a panel of demographers, labor economists, other appropriate researchers and policymakers, along with persons with disabilities, to review the proposed methodology for accuracy and reliability. NIDRR should also work closely with the Census Bureau, the Department of Labor's Office of Disability Employment Policy, and such other agencies as may be appropriate to carry out the field testing of all instruments suggested above.

A moratorium on federal support for the dissemination or federally funded use of unreliable disability employment data may admittedly cause some problems, but with better data collection techniques imminent, such inconveniences are greatly outweighed by the harm that results from the continued infusion of erroneous information into the public policy pipeline.

2. RESEARCH

NCD continues to urge a broad review of all disability statistics and data collection strategies and of related disability research priorities and resources. Today, with evidence-based policymaking becoming progressively more central to governmental decisionmaking, reliable and accurate statistical information and research data are more important than ever in a wide range of policy contexts.

As the need for accurate and timely data grows, the complexities associated with collecting and analyzing it are also mounting. Even the most basic information, such as how many Americans there are with disabilities, has become steadily more difficult to collect or interpret. Four reasons for this difficulty exist. First, various statutes define disability differently. Given the differing purposes of various statutes, their yielding divergent estimates of the number of Americans with disabilities is not surprising.

The question whether disability is ultimately a functional, a social, or a legal concept is beyond the scope of this report, but from all these standpoints, the differing definitions and varying purposes underlying various statutes and programs enormously complicate the research, data collection, and policymaking processes. For example, the criteria by which a person meets the definition of disability under the ADA for purposes of protection from employment discrimination or the standards determining eligibility under the Social Security Act for SSDI or the test for whether someone can claim the impairment-related work expenses tax deduction are all quite different. Our notions of the size and the needs of the disability population will be greatly influenced by which of these definitions and by which functional measures we use.

A second and related reason why valid and reliable disability statistics and research findings are more difficult to collect is that even given the same statutory definition of disability, different agencies collect data in very different ways. The CPS illustrates this point. Given the same informational objective, and with the same statutes borne in mind, the Census Bureau has modified its questions in the 2000 census, and different formulations of the questions will necessarily bring different results. Any forthcoming new definition of disability, work-ability, or similar concepts will of course initially contribute to this problem by creating yet another database, but, in the long run, introduction of viable definitions of such terms will offer the opportunity for creation of baseline data that, coupled with the use of standardized techniques of administration, will yield truly comparable findings over time.

The third reason for difficulties arises from a very positive source, namely, the increasing role of assistive technology in the lives of Americans with disabilities. Because of technology, traditional definitions of when and whether a major life activity or function is "substantially limited" have become far more difficult to determine and far less universal. For example, impairments of mobility (often measured by the ability to move certain distances independently) or impairments of vision (conventionally assessed by ability to read standard print) are today, thanks to technology, not nearly so easy to assess as once they were. Today, the individual who cannot walk may still be able to get around with the assistance of a mobility device, and the individual who cannot see the newspaper may nevertheless be able to read it through the use of optical scanners. When asked if they are limited in the major life functions of reading or moving around, do the users of such technology answer in the affirmative? Likewise, if people whose use of technology allows them to work are asked whether they have a work disability, what will they say, and what should they say? Similarly, how many people who sincerely and reluctantly believe themselves unable to work by reason of a disability could in fact do so if they had access to appropriate technology or more accessible work environments? What answer should these people give, and what answer do they give? Does their legal status (that is, whether they meet the legal test for disability), their functional limitation, or their lack of access to appropriate technology and properly designed environments account for their lack of work?

The fourth and final reason for difficulty in the collection of valid and reliable employment or other data about Americans with disabilities arises from a series of Supreme Court decisions over the past three years that raise the potential for dramatically narrowing the legal standards for who is a person with a disability. These decisions, discussed later in this report, essentially hold that in determining whether someone qualifies as an individual with a disability so as to be covered by Title I (employment) of the ADA, certain mitigating measures, including at least medications and eyeglasses, must be taken into account. Moreover, in both the employment and public accommodations contexts, the Court has made clear that this determination must be made on an individual, case-by-case basis.

These decisions inordinately complicate any assessment of who the law considers to be a person with a disability and how Congress should define those whose lives legislation is designed to affect. But from the research standpoint, these decisions also play havoc with the questionnaires and other research techniques and the self-reporting data-collection strategies we use.

For all these reasons, the time is right and the need urgent for a comprehensive reassessment of all disability statistics and all data-gathering techniques. Under the authority of Congress, the Interagency Committee on Statistical Policy, in conjunction with NIDRR and NCD, should undertake this coordinated, comprehensive, high-level review.

Civil Rights

1. THE ADA

a. CONTINUING ATTACKS

In July 2001, celebrations around the country were held to mark the 11th anniversary of the ADA. These celebrations, which have become an annual occasion for assessing progress and identifying barriers, hailed the many gains for people with disabilities over the past decade. But although proudly and gratefully recalling the many gains that have been made under the ADA, these annual events also provide an occasion for facing sober realities and for confronting the existence of many remaining, and some new, barriers.

This year, ominous new barriers were a topic of intense attention and grave concern. Efforts in Congress, such as the proposed ADA Notification Act,²⁹ would require individuals with disabilities seeking to file suit against "public accommodations" or "commercial facilities" under Title III of the ADA to give 90 days advance notice of their intention to do so. This requirement is not imposed on any other litigants seeking to avail themselves of protections or rights under federal law.

As discussed in last year's NCD progress report,³⁰ such proposals as the ADA Notification Act continue to sow fear among Americans with disabilities and to consume the time and energy of many advocates. To help allay deep-seated community concerns, NCD recommends that the Administration and Congress put on record its unequivocal opposition to any weakening amendments to the ADA, especially amendments that treat the ADA in particular or civil rights laws in general in isolation from the rest of civil legislation in our nation.

b. OTHER THREATS

Other new and disheartening threats to the ADA were also on the minds of this year's celebrants. Arising largely from judicial interpretations of the law, these new barriers to enforcement severely restrict the ability of private citizens to vindicate their civil rights in the courts.

By way of background to this year's decisions, which, in toto, continue and accelerate the process of closing the courts to civil rights claims by citizens with disabilities, the line of relevant decisions must be followed back to 1999. Then the Supreme Court ruled in the so-called Sutton trilogy of cases³¹ that for purposes of the right to bring suit for employment discrimination under Title I of the ADA, the determination of whether a person is a "qualified individual with a disability" (in other words, whether an individual is covered by the law) needs to be made after various "mitigating" factors and measures have been taken into account. This ruling meant that many persons who previously would have considered themselves to have a disability and been commonly regarded as such were barred from bringing suit under the ADA because, with the application of such mitigating measures as the eyeglasses in Sutton or the blood pressure medication in Murphy, they no longer experienced "substantial limitation" of any pertinent major life activity, including the ability to work.

Following on the heels of this restriction in who has the right to sue, additional limitations have now been placed on whom discrimination suits can be brought against. The Supreme Court ruled in February 2001, in the Garrett case,³² that ADA Title I employment suits claiming money damages cannot be brought against state governments, because the 11th Amendment to the Constitution bars suits against sovereign entities (which states are) without their consent.

Traditionally, even where a state has not consented to be sued, the 14th Amendment has overridden their immunity from suit in the civil rights area. This may remain so in connection with racial or gender discrimination, but may not be the case with disability-based discrimination. According to the Court in Garrett, the conditions established by the Constitution for federal legislation overriding state sovereign immunity have not been met by the ADA.

Whether Congress can revise the law to meet the standard by making more extensive findings of systematic and pervasive discrimination against people with disabilities by state governments remains uncertain. Given certain statements in the opinion suggesting that disability discrimination can in certain instances be "rational," and given the extensive evidence of pervasive discrimination that Congress already collected and cited in the ADA findings section and in its legislative history, considerable fear exists that the Supreme Court could hold that Congress lacks constitutional authority for overturning the Garrett ruling.

Other troubling uncertainties also surround the implications of these decisions. For instance, whether the Sutton decision and its companion Murphy decision will be extended to suits under Title II or Title III of the ADA remains uncertain. If they are, then the ability of individuals to contest alleged discrimination in the provision or denial of public services or public accommodations will likewise be substantially limited.

Similarly, critical unanswered questions attach to the more recent Garrett decision. Here again, the key issues relate to whether the decision will be extended. If states are immune from suit for money damages for employment discrimination, will they also be immune from such suits in connection with alleged denial of public services or access to public programs under Title II? To be sure, such decisions as the Court's 1999 ruling in Olmstead v. L. C.,³³ though predating the Garrett decision, have upheld the right of institutionalized people with disabilities to bring suit under Title II, and many suits under Title II, including Olmstead, seek outcomes that do not involve money damages. On the one hand, to hold that the 11th Amendment bars suits against states for injunctive relief or other nonmonetary relief, the Supreme Court would probably have to overrule its historic Ex Parte Young precedent, which has stood for nearly a century.³⁴ On the other hand, without being overruled, Young has been significantly limited by a variety of lower-court holdings in recent years, to the point where, for it to apply, suits must seek only prospective relief, must be brought not against the state but against named state officials, and must avoid a number of other highly technical pitfalls.³⁵

It does not appear that Garrett bars suits against local governments, as distinguished from states. Garrett also does not detract from the Federal Government's ability to pursue Title I cases.

c. MIXED RESULTS

Last year's report noted uneven results in the implementation of the ADA. For example, whereas it noted appreciatively that city streets in most places are more accessible than ever before, NCD's progress report also observed that public transportation in many localities and regions remains inaccessible, unreliable, inconvenient, or untimely. While this pattern remains the case, NCD is encouraged by the transportation initiatives embodied in the president's New Freedom Initiative and by the approach taken to demonstration projects in the transportation area. These efforts are discussed in chapter 10.

Because of the accessibility of growing numbers of streets and sidewalks and because of the increasing incorporation of ramps and other environmental accessibility features into the design of public and commercial buildings, the number of people with mobility disabilities who now have entry to more buildings continues to grow. But as noted last year, more needs to be done. Some of these needs continue to exist in the realm of physical access. Others involve parallel access issues of concern to people with a variety of disabilities.

While we have by no means achieved universal physical access, as the law contemplates, the pressing issues of access for people with sensory disabilities and people with cognitive disabilities must also be addressed with vigor and focus. For these citizens, the access issues are not about their literal ability to enter the building but about their ability to locate the goods, services, facilities, or information that they want. These matters too will be discussed in greater depth later in this report.

Last year's report indicated that although the ADA covers Americans with cognitive and mental disabilities just as it does those with physical or sensory ones, these citizens continue to fight for access to the programs offered by both public and private entities. Citizens with cognitive and mental disabilities face stereotypes and fears of a unique and persistent nature, the overcoming of which involves sustained and coordinated efforts in public education and law enforcement that include the efforts and resources of both the legal and public health sectors.

But across the spectrum of agencies and laws, and in connection with all disabilities, enforcement presents troubling and pervasive issues. These enforcement problems have been extensively documented. In June 2000, NCD issued its report Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act,³⁶ which analyzed ADA enforcement efforts of the Department of Justice (DOJ), the Department of Transportation (DOT), the Equal Employment Opportunity Commission (EEOC), and the Federal Communications Commission (FCC).

Although recognizing the initiatives and positive actions of these agencies, NCD's 1999-2000 annual report also identified significant shortcomings in enforcement. These shortcomings included the lack of any coherent, unified, and comprehensive national enforcement strategy as a major weakness. The report found that enforcement efforts have been shaped largely by an approach based on case-by-case complaint handling rather than compliance monitoring and follow-up technical assistance.

Our research revealed that agencies, to varying degrees, have been hesitant to exercise leadership in litigating difficult or controversial cases or even in referring cases to the DOJ for litigation. The efficiency of complaint handling has varied greatly across agencies and the complaint handling process has been slow even in the best-performing agencies, and fraught with unreasonably long delays in the worst.

Despite several funding increases in the past decade, the report found that no federal agency had an enforcement budget commensurate with the scope of its ADA responsibilities. Another significant finding was that agencies have provided few opportunities for input from people with disabilities in setting overall priorities for policy development and enforcement activities.

Accordingly, NCD recommended that the DOJ assert strong leadership in bringing together the cognizant federal enforcement and oversight agencies to develop a strategic vision and plan for ADA enforcement across the Federal Government, including a well-coordinated litigation strategy. We recommended that all the agencies must look at ways to focus their enforcement resources on means to increase the consumer-responsiveness of key operations, such as complaint handling. We argued that all these actions should be undertaken with appropriate input from and collaboration by people with disabilities.

On balance, most of these recommendations remain to be acted on. With the advent of a new Administration, initially faced with the task of putting personnel, procedures, and policies in place and more recently faced with national security concerns of an unforeseeable nature, this inaction is certainly somewhat more understandable than might otherwise be the case. Nevertheless, we believe it important to emphasize that the DOJ has an uneven history of acting decisively to promote inclusion and accessibility for Americans with disabilities under the ADA.³⁷

As we did in 2000, NCD once again commends the DOJ for intervening to help protect the integrity of the ADA and to defend it from the onslaught of lawsuits attacking the very basis of the law. Among the most notable instances over the past two years, the DOJ intervened in a court case to establish insurance as a public accommodation under Title III and to blunt efforts aimed at securing a judicial determination that Title III did not apply to goods and services made available to the public over the Internet, filing important amicus briefs in cases heard by several U.S. Courts of Appeal.³⁸ Additionally, the DOJ filed an amicus brief in the Nored case³⁹ challenging a Tennessee statute that prohibits people with "any apparent mental disorder," even the most minor, from occupying positions as public safety dispatchers.

Along with commending the DOJ for its efforts to establish constructive policy positions through the courts, NCD also urged the DOJ to make use of the variety of tools at its disposal (including regulations, subregulatory guidances, and technical assistance documents) to take a leadership role on policy issues in Title II and Title III enforcement and to help covered entities understand and comply with their obligations under the law in emerging areas, such as e-government and the Internet, that have not been highlighted in enforcement efforts or technical assistance releases to date.

Needless to say, the types of arguments the DOJ can make in court and the kinds of enforcement and technical assistance activities it can undertake depend in large part on the issues involved. In this connection, one crucial difference between the Sutton trilogy and the Garrett cases must be noted: Whereas Sutton is based on statutory interpretation, the Garrett decision is predicated on the Constitution. Nevertheless, both decisions present major issues for the DOJ to resolve and opportunities for the DOJ to act. In addition, both decisions also present major issues for EEOC to act on.

The first question to be asked about the DOJ's responses to these decisions is whether the department believes these cases to have been correctly decided. Consistent with fidelity to and respect for the decisions of the high court, various well-established strategies for reversing or limiting these decisions exist, but the DOJ must believe that the decisions represent a misconstrual of statutory meaning or constitutional principles. The Sutton trilogy decisions, because they rely on interpretation of the ADA, can readily be overturned or modified by congressional amendment of the law. Numerous precedents, such as the Civil Rights Restoration Act of 1991, exist for such congressional response in the civil rights arena over the past 15 years. Leadership by the department would be invaluable in seeking to clarify, for example, that mitigating measures do not include submission to involuntary or potentially harmful medical treatment and that such measures do not include the use of AT. If the DOJ were not prepared to go so far as recommending overturning of the postmitigation assessment of major life-activity limitation, clarification of what will and will not constitute applicable mitigation under the law would allow the postmitigation standard to continue in effect, while ensuring that workers will not be forced to submit to coercive interventions in their health and private lives as a condition for pursuing their aspirations to work.

With Garrett, the constitutional basis for the decision makes the task of modifying its effects far more daunting. In Garrett, the state of Alabama successfully argued that the ADA does not meet the criteria established by the 14th Amendment for enactment by Congress of civil rights laws that override states' 11th Amendment sovereign immunity from suits. In reaching its decision in the case, the court found the following: (1) Congress lacked (or, in the findings section of the ADA, failed to articulate) sufficient evidence of systematic discrimination and denial of equal protection to people with disabilities by the states to justify the abrogation of 11th Amendment immunity; and (2) even if the evidence of systematic discrimination were sufficient to justify congressional action to set aside states' sovereign immunity, the requirements of the ADA, including the provision of reasonable accommodations, go so far beyond what would constitute a mere ban on discrimination as to constitute a disproportionate and excessive response on Congress's part to the problem the statute sought to address.

It is interesting that the DOJ itself filed briefs supporting the constitutionality of the ADA and urging the Supreme Court to hold the ADA's express abrogation of states' 11th Amendment immunity to be a proper exercise of Congress' power to enforce the equal protection clause of the 14th Amendment.⁴⁰

In last year's progress report, NCD forecast that "the court's decision will have a crucial bearing on the future of disability rights." If anything, that was an understatement. Pending further decisions, a number of key issues, bearing on all civil rights statutes and presumably even on access to services provided under federal-state partnerships, hang in the balance. In addition to those already noted in subsection b, the key issues now in play are whether the Court's reasoning in Garrett applies to other federal disability rights statutes, such as Section 504 of the Rehabilitation Act,⁴¹ and whether and how states can waive or be deemed to have waived their sovereign immunity from private lawsuits.

These questions will be taken up later in this chapter when we discuss recent court decisions that do not directly involve the ADA but may have a profound and adverse effect upon it. For the moment, in light of the continuing uncertainties and in view of the fears of many persons with disabilities that their hard-won civil rights face dramatic and severe erosion, NCD recommends that the DOJ develop and assert clear and unambiguous views on these points, both for presentation to Congress and, subject to the inevitable factual variations in each case, for use in the courts as circumstances warrant.

2. HATE CRIMES

In last year's report, NCD recommended that Congress hold hearings to extend federal hate crimes legislation to cover a variety of population groups, including persons with disabilities. NCD reiterates its recommendation that such legislation be adopted in 2002.

Recent months have provided the most painful reminders of what hate and prejudice can do. As our nation struggles to accommodate its values of respect and equality to an era of personal fear for many and security concerns for all, decisively and expansively asserting, in law as in practice, the enduring values that we hold becomes more important than ever. At this time, too, ensuring that all Americans are recognized and made to feel welcome as full members of our society is vital.

For Americans with disabilities, this means freedom from, and legal protection against, the extreme form of discrimination represented by bias crimes. Whether such crimes are predicated on malice, an opportunistic belief that people with disabilities are less likely to resist, resentment at the civil rights demands of these citizens, or other causes, society must make clear, through the unqualified pronouncement of federal law, that our disapproval of hate crimes is backed up by meaningful sanctions and deterrence.

Accordingly, NCD strongly recommends that Congress enact appropriate federal hate crimes legislation during its 2002 session.

In last year's status report, NCD also recommended that Congress increase appropriations for preventing and responding to alleged violations involving certain federally protected activities. Where manifestations of hate arise from or are directed against people in response to their pursuit of or exercise of federally protected rights, society's responsibility is all the greater. Because retaliation in any form places a heavy burden on the vindication of all rights and on the exercise of the responsibilities of citizenship, resources must be identified and strengthened for ensuring that the requisite vigilance, investigation, and follow-up are available and used.

In its 1999-2000 annual report, NCD commended the proactive efforts of the DOJ'S Bureau of Justice Assistance (BJA) to raise awareness at all levels of government regarding hate- and bias-related crimes. NCD recommends that these efforts, under the National Hate Crimes Training Initiative, continue. But NCD also recommends that the curriculum be reviewed to ensure that issues bearing specifically on hate crimes against persons with disabilities are fully incorporated and adequately addressed in all videos, manuals, in-person trainings, and other materials and efforts. Specifically, NCD recommends that BJA ensure that the role of bias in opportunistic crimes against persons with disabilities be fully appreciated by law enforcement personnel; that crimes committed by caregivers against persons with disabilities be recognized as bias crimes where warranted; that the difficulties faced by many people with disabilities in bringing their experiences of victimization to the attention of law enforcement be recognized; and that government agencies and officials at all levels make special efforts to ensure that people with disabilities who have been the victims of hate crimes are accorded every opportunity to participate effectively in the legal process to secure redress and protection.

NCD also recommends that training materials and official practices identify and candidly address what may best be described as the secondary consequences of bias. If a police department or public prosecutor declines to pursue charges against a defendant out of a belief that a witness or victim with a disability may not be regarded as a credible witness (as is widely reported to happen in cases of persons who are blind and therefore cannot make visual identifications of suspects), or if a prosecutor declines to call a person with a mobility disability as a witness because the courthouse is inaccessible or a sign-language interpreter is unavailable, then the individual with a disability has been doubly victimized: once by the alleged hate crime, then by the inability of the justice system to demonstrate the necessary flexibility and responsiveness.

Because they result in decisions being made that affect people's lives on the basis of factors that deny the individuality and uniqueness of each person, stereotypes are as harmful as bias, even when motivated by manifestly protective instincts. Unless hate crimes are recognized for what they are and dealt with effectively through training and oversight, any attempt to deal with them that does not take the institutional response into account is unlikely to achieve the level of success desired. Accordingly, NCD recommends that BJA take all possible measures to identify these issues and to ensure their proper prioritization in all hate crime-related training efforts.

3. GENETIC DISCRIMINATION

A year ago, NCD recommended that legislation barring discrimination by health insurers or employers based on genetic information be introduced and acted on by the 107th Congress. NCD believes that recent developments have made the case for legislation barring genetic discrimination more pressing than ever.⁴²

As a backdrop to the discussion of the specific provisions that such legislation should contain, NCD recommends that the Office of Management and Budget (OMB) or the Office of Personnel Management (OPM) undertake an assessment of the impact of Executive Order 13145, issued by the previous Administration, which barred federal agencies from making use of genetic testing in hiring and promotion decisions and further required adherence to all applicable state and federal confidentiality provisions in those rare instances where a federal employer needed to obtain genetic information about a present or prospective employee. The assessment recommended here should seek to evaluate the extent of compliance among federal agency employers, the administrative viability of the order's provisions in light of other legal and practical requirements bearing on the public sector employment relationship, and the impact, if any, of the order on documented short-term or actuarially anticipated long-term costs of providing health insurance to federal workers and their dependents.

Based on the findings of this assessment, which should be completed within the life of the 107th Congress (but which should not serve as grounds for delaying reform legislation that may in the interim be considered by Congress), the Administration should propose legislation that builds on the lessons learned in the federal sector but that applies to all employers and all providers of health insurance coverage.

As suggested, new urgency has been lent to the subject of genetic screening for employment by the rapid growth of interest in genetic testing and by scientific discoveries, associated with completion of the human genome mapping project, that purport to link specific diseases with the presence, absence, or mutation of particular genes. Although no authoritative data have been found, all indications point to the increasing use of genetic screening by employers.

Leaving aside the likely sensationalistic nature of press coverage concerning these biomedical breakthroughs, many believe that creation or manipulation of genes in the laboratory or the test tube is a process that should be approached only with the gravest humility. Others believe that such technology represents a great opportunity for increasing longevity and enhancing the quality of life. For those who believe that genetic research holds the key to the conquering of disease and a better life for all, and alike for those who believe some or all contemporary genetic research to be an assault on the fundamental dignity of the human being, use of genetic information to condition the availability of employment or health insurance should be equally anathema.

From the standpoint of any strong opinions about the wisdom or the direction of genetic research, the conditioning of key decisions about people's lives on information concerning their genetic endowment should be a matter of the utmost concern. To