National Disability Policy: A Progress Report
December 2002-December 2003

National Council on Disability

December 9, 2004

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

National Disability Policy: A Progress Report
December 2002-December 2003

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

Publication date: December 9, 2004

202-272-2004 Voice
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The views contained in this report do not necessarily represent those of the Administration, as this and all NCD documents are not subject to the A-19 Executive Branch review process.

Letter of Transmittal

December 9, 2004

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

Dear Mr. President:

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

The report covers the period from December 2002 through December 2003. It reviews federal policy activities by issue areas, notes input by other federal agencies on their progress where it has occurred, and makes further recommendations where necessary, primarily to the executive and legislative branches of the Federal Government.

As indicated in the report, NCD has observed examples of progress in disability policy and the broader policy arena. Among these are the findings and recommendations of the President's New Freedom Commission on Mental Health in its report on recovery from mental illnesses and a proposed transformation of the nation's approach to mental health care; the Department of Health and Human Services' funding of several model projects (Demonstration to Improve the Direct Service Community Workforce) designed to develop and implement programs that recruit and retain personal assistance workers for people with disabilities and people who are aging; and critical attention to the needs and inclusion of people with disabilities in preparation for emergency situations, such as the Department of Homeland Security's work and coordination with other agencies.

Under NCD's statutory mission, examination of the status of disability policy discloses that incremental progress made in some areas is clouded by other major barriers and challenges that continue to block paths available to the general population. Gaps in necessary services and supports remain to the extent that, as stated in NCD's 2002 report on progress, far too many Americans with disabilities are undereducated and unemployed.

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

Sincerely,

Lex Frieden
Chairperson

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

National Council on Disability Members and Staff

Members

Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio

Staff

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

CONTENTS

Executive Summary

Chapter One: Disability Statistics and Research
Chapter Two: Civil Rights
Chapter Three: Education
Chapter Four: Health Care
Chapter Five: Long-Term Services and Supports
Chapter Six: Youth
Chapter Seven: Employment and the Workforce Development System
Chapter Eight: Welfare Reform
Chapter Nine: Housing
Chapter Ten: Transportation
Chapter Eleven: Technology and Telecommunications
Chapter Twelve: International Affairs
Chapter Thirteen: Homeland Security

Chapter One. Disability Statistics and Research

Introduction
The Premise of Disability Statistics
Limitations in the Approach
New Directions and Approaches

The New Paradigm
New Directions in Research

Conclusion

Recommendations Summary
Recommendations to the Administration
Recommendation to Congress
Recommendation to the Census Bureau

Chapter Two. Civil Rights

Introduction
The ADA

Continued Erosion of Rights in the Courts
The Need for New Approaches to the Judicial Process
New Federal Legislation

Section 504 of the Rehabilitation Act
Accountability in Civil Rights Enforcement
Genetic Discrimination
Voting Rights
Conclusion
Recommendations Summary

Recommendations to the Judicial Conference and the
Administrative Office of the Courts
Recommendations to Congress
Recommendations to the Department of Justice

Chapter Three. Education

Introduction
IDEA Reauthorization

Student Discipline
Full Funding
Due Process
Textbook and Multimedia Accessibility

Coordination of IDEA and NCLB

Application of Average Yearly Progress
Teacher Qualifications
Educational Technology
Accountability

Higher Education
School-to-Work Transition

Transition Savings Accounts and IRAs
Individual Development Accounts

Conclusions
Recommendations Summary

Recommendations to Congress
Recommendation to the Department of Education
Recommendation to the Department of the Treasury

Chapter Four. Health Care

Introduction
Medicaid

Institutional Bias
Medicaid Waivers
Consumer-Directed Services
Medicaid Buy-In

Medical Device Review
HIPAA Privacy Regulations
Medicare Reform

Choosing Coverage
The Mix of Services

Dual Medicaid and Medicare Eligibility
Mental Health Parity and Services
Insurance Premiums
Conclusion
Recommendations Summary

Recommendations to Congress
Recommendation to the Administration
Recommendations to CMS
Recommendations to HHS
Recommendation to FDA

Chapter Five. Long-Term Services and Supports

Introduction
The Looming Crisis
Community Integration

Key Pending Legislation
Actions Necessary

Insurance
Cost Effectiveness and Accountability
Conclusion
Recommendations Summary

Recommendations to Congress
Recommendations to CMS

Chapter Six. Youth

Introduction
Juvenile Justice

Recognizing the Problem
Coordination
Outcomes

Youth Leadership Development and Empowerment

The Youth Advisory Committee
National Youth Leadership Network

Definitions
Conclusion
Recommendations Summary

Recommendations to the Administration
Recommendation to DOJ
Recommendation to OMB

Chapter Seven. Employment and the Workforce Development System

Introduction
The Workforce Investment Act

Antidiscrimination and Accessibility
Outcome and Performance Measures
Aging of the Workforce
The Navigator Program
Outreach by One-Stop Centers

The Vocational Rehabilitation System

Order of Selection
Technical Assistance

Other Resources and Issues

Loan Programs
Tax Incentives
Ticket To Work

Conclusion
Recommendations Summary

Recommendations to Congress
Recommendations to the Administration
Recommendations to DOL
Recommendations to ED

Chapter Eight. Welfare Reform

Introduction
Time and Benefits Limits
Work Requirements
Individual Development Accounts
The Streaming Problem
Conclusion
Recommendations Summary

Recommendations to Congress
Recommendation to HHS
Recommendation to DOJ

Chapter Nine. Housing

Introduction
Coordination
Existing Programs
Civil Rights

Interagency Efforts
Voluntary Compliance Agreements
Research
Training and Technical Assistance
Disability and Homelessness

Incentivizing Accessibility

Disclosure
Definitions
Visitability

Conclusion
Recommendations Summary

Recommendations to Congress
Recommendations to the Administration
Recommendations to HUD

Chapter Ten. Transportation

Introduction
The Legal Framework

Community Integration
Olmstead
Assistive Technology Mobility Devices

Air Travel

Civil Rights and Nondiscrimination
ACAA Enforcement
Ticket Machines and Other Technologies

The Transportation Act

Budget
Olmstead
Other Accessibility Issues

Paratransit
Conclusion
Recommendations Summary

Recommendations to Congress
Recommendations to the Administration
Recommendations to DOT

Chapter Eleven. Assistive Technology and Telecommunications

Introduction
The Assistive Technology Act
The Federal Communications Commission

Cell Phone Access for Hearing Aid Users
Section 255
Closed Captioning
Video Description
E-Rate

Section 508

Monitoring
Outstanding Legal Issues

Conclusion
Recommendations Summary

Recommendation to Congress
Recommendations to the FCC
Recommendations to DOJ
Recommendation to GSA

Chapter Twelve. International Affairs

Introduction
The Legal Framework
Foreign Assistance
Section 504 and ADA
UN Convention
Technical Assistance
Conclusion
Recommendations Summary

Recommendations to the Administration
Recommendations to the Department of State

Chapter Thirteen. Homeland Security

Introduction
Nondiscrimination
Emergency Preparedness
Private Organizations
Conclusion
Recommendations and Summary

Recommendations to the Department of Homeland Security

A Compilation of Report Recommendations to Congress, the Administration, and Federal Agencies

Part I. Recommendations to Congress

Chapter One-Disability Statistics and Research
Chapter Two-Civil Rights
Chapter Three-Education
Chapter Four-Health Care
Chapter Five-Long-Term Services and Supports
Chapter Six-Youth (no specific recommendations to Congress)
Chapter Seven-Employment and the Workforce Development System
Chapter Eight-Welfare Reform
Chapter Nine-Housing
Chapter Ten-Transportation
Chapter Eleven-Assistive Technology and Telecommunications
Chapter Twelve-International Affairs (no specific
recommendations for Congress)
Chapter Thirteen-Homeland Security (no specific
recommendations for Congress)

Part II. Recommendations to the Administration

Chapter One-Disability Statistics and Research
Chapter Two-Civil Rights (no specific recommendations to
the Administration)
Chapter Three-Education (no specific recommendations to
the Administration)
Chapter Four-Health Care
Chapter Five-Long-Term Services and Supports(no specific recommendations to the Administration)
Chapter Six-Youth
Chapter Seven-Employment and the Workforce Development System
Chapter Eight-Welfare Reform (no specific recommendations for the Administration)  
Chapter Nine-Housing
Chapter Ten-Transportation
Chapter Twelve-International Affairs
Chapter Thirteen-Homeland Security (no specific recommendations for the Administration)

Part III. Recommendations to Federal Agencies, Offices, and Courts

Chapter One-Disability Statistics and Research
Chapter Two-Civil Rights
Chapter Three-Education
Chapter Four-Health Care
Chapter Five-Long Term Services and Supports
Chapter Six-Youth
Chapter Seven-Employment and the Workforce Development System
Chapter Eight-Welfare Reform
Chapter Nine-Housing
Chapter Ten-Transportation
Chapter Eleven-Assistive Technology and Telecommunications
Chapter Twelve-International Affairs
Chapter Thirteen-Homeland Security

Appendix I-Mission of the National Council on Disability

Appendix II-List of Acronyms

Endnotes

Executive Summary

This National Council on Disability (NCD) annual progress report to the President and Congress is prepared pursuant to NCD's statutory responsibility to make a full report of its activities, findings, and recommendations in key areas to the leaders of our nation. The report covers subjects on which NCD must report according to the law. It also addresses several additional subjects that NCD believes to be of importance to Americans with disabilities and to the nation.

This report's 13 chapters address disability statistics and research, civil rights, education, health care, long-term services and supports, youth, employment and the workforce development system, welfare reform, housing, transportation, assistive technology and telecommunications, international affairs, and homeland security. Each chapter recounts developments of importance from the previous year, describes the key issues likely to emerge or open for discussion in 2004, and addresses long-term trends and interconnections between subject areas that NCD believes must inform our analysis. Each chapter also contains detailed recommendations, addressed to specific agencies or decision makers. The chapters call for actions that NCD has concluded would contribute to improvement of the opportunities available in society for people with disabilities. For easy reference, these recommendations are numbered and grouped by targeted institutions-Congress, the Administration, implementing entities, and courts-at the end of each chapter. The final section of the report is a compilation of the recommendations into three sub-sections directed to Congress, the Administration, and specific federal agencies and courts.

NCD's 2003 Progress Report contains the following salient findings and recommendations.

Chapter One: Disability Statistics and Research

Findings -Based on an examination of the methods and uses of disability research over recent years, problems with research techniques and inconsistencies among data sources have made reliable assessment of many issues difficult, including even such fundamental questions as the precise number of Americans with disabilities. Because of the difficulties associated with obtaining adequate data, and because even good data does not necessarily point the way clearly toward the most effective solution, there may be a need to reassess the kinds of research being conducted and the purposes for which that research is done.

Recommendations- Congress should authorize research to supplement the accumulating baseline data and to conduct forward-looking experiments designed to create new statistics by observing and measuring the impacts of various innovations on people's lives. Prospective designs that observe and measure the results-instead of relying on retrospective methods of trying to determine impact-would prove far more useful in creating meaningful statistics and clarifying policy options. Disability-related questions need to be retained and improved in the 2010 census. The Census Bureau should seek whatever authority is needed to make improvements.

Chapter Two: Civil Rights

Findings- A succession of Supreme Court decisions narrowly interpreting the Americans with Disabilities Act (ADA) and ruling against individuals with disabilities have combined with other factors to create great unease among Americans with disabilities regarding the robustness of our nation's commitment. Among other concerns are the failure of the federal courts to take voluntary actions, such as making more of their electronic documents accessible; the need for improved accountability in civil rights enforcement; growing concerns about genetic discrimination; and questions about accessibility issues linked to voting technology.

Recommendations- Pilot experimental implementation programs are suggested to the federal courts to provide them with the kind of experience that would lead to more informed and balanced adjudication of disability rights claims in the future. With the increasingly complex issues of our time, intergovernmental efforts are required to ensure that consistent and effective application of Section 504 is carried out to achieve greater civil rights. This recommendation coincides with the recommendations of NCD's recent major report on Section 504 of the Rehabilitation Act (Rehabilitating Section 504). On accountability, NCD recommends that methods be developed for establishing the relative value of various approaches (e.g., agency reporting of numerical data reflecting settlements, cases processed, technical assistance, or other dimensions of civil rights implementation), alone or in combination with civil rights enforcement. NCD also calls for the prompt enactment of pending legislation that would prohibit the use of genetic information to deny people employment, housing, insurance, or other basic opportunities. Finally, NCD advises that vote verification is important, but this must not be achieved at the cost of hard-won accessibility rights. Congress should ensure full implementation of the Help America Vote Act.

Chapter Three: Education

Findings -Behind the debate over such hot-button issues as school discipline, full funding, and high-stakes testing, important decisions are due to be made by Congress that will affect the lives and futures of many school-age Americans with disabilities via reauthorization of major components of the Individuals with Disabilities Education Act (IDEA). Despite strides made in reconciling the operation and tenets of IDEA and the No Child Left Behind Act (NCLB), much work remains to be done in applying the philosophies of the two Acts seamlessly and in a manner that will be wholly respectful of each. Issues of paying for and obtaining appropriate supports, services, and accommodations for postsecondary or other continuing education still confront students with disabilities and institutions of higher education working with these students. Despite government efforts to address transition through more effective cooperation between educational, rehabilitation, and other adult service systems, smooth transition from secondary school to postschool pursuits for people with disabilities has remained elusive in all too many cases.

Recommendations- Because adequate data does not yet exist to justify curtailment of parental due-process rights in special education, Congress should undertake definitive research to provide empirical evidence on the impact of appeals and attorneys on special education before it further restricts family rights. Congress should also ensure that when disciplinary considerations require the removal of students with disabilities from the mainstream, integrated classroom, such students are ensured the right to uninterrupted educational and related services consistent with their Individualized Education Program (IEP) and with evolving assessments and needs in the most appropriate educational settings. In this way, no child will be left behind. Building on approaches the Administration has taken to help resolve other persistent problems and to contribute to the ability of families to advance their children's education, NCD suggests new tax-based strategies that may help to improve the availability of transition resources.

Chapter Four: Health Care

Findings -Changes in Medicaid (e.g., budgetary and structural), along with what is known as the institutional bias of the Medicaid program, have major implications for people with disabilities. Aspects of the recent Medicare reform legislation also have a distinct bearing on the lives of people with disabilities and need to be addressed. A related matter-medical device review-presents issues important to assistive technology (AT) users. The need for parity in insurance coverage for mental and physical health services continues. The report of the President's New Freedom Commission on Mental Health confirmed many of NCD's earlier reports of major shortcomings and coordination and systemic problems in current arrangements for the provision of mental health treatment and services, and made important, far-reaching recommendations for reform.

Recommendations -Congress should begin the process of facilitating expanded use of Medicaid buy-in programs, in light of their potential to reduce the number of uninsured Americans, by adopting the Family Opportunity Act and by enacting the Money Follows the Person legislation. Federal agency leadership in improving medical device review will need to give attention to low-incidence AT device users, coordination of device regulations, and review between the Food and Drug Administration and the Centers for Medicare and Medicaid Services. Congress needs to establish a national commission to study the question of how consumer participation and direction can be maximized throughout the federal health insurance programs, with a view to adding the findings and recommendations of this study to future Medicaid reform proposals. In view of the accumulating weight of findings and data that point to parity needs, NCD urges Congress to implement the major recommendations of the President's New Freedom Commission on Mental Health and NCD reports. The Administration should publish detailed, point-by-point reactions to the findings and recommendations.

Chapter Five: Long-Term Services and Supports

Findings -The nation could face a crisis as life expectancy increases, unless our nation finds some way to reallocate the growing costs of long-term care and provide the same attention to long-term services as health care or income support has received. NCD fully shares the vision of the President's New Freedom Initiative (NFI) in support of home and community-based services (as alternatives to institutional settings) as a means to achieving greater equality and full participation in society for people with disabilities. NCD commends the Administration for sponsoring important research into a number of key related issues. However, in view of the variety of legal and economic forces operating to slow Olmstead implementation, strong and concerted measures are required at the national level to overcome barriers to community integration. NCD recognizes the role of private insurance in any comprehensive effort to reform our systems of long-term care. Accountability and cost-effectiveness continue a major theme throughout this report and require the development of means for assessing the efficacy of various public expenditure patterns.

Recommendations- The Department of Health and Human Services Centers for Medicare and Medicaid Services should require timely planning for and documented achievement of Olmstead goals as a condition for states to receive federal funds under the Medicaid program. NCD also recommends measures and research designed to tap the potential of the private sector in this area, with significant partnership and involvement of the nation's insurance industry. Congress should hold hearings to fully explore the potential role of the insurance industry, the tax code, the employer community, and existing programs in fashioning experimental models of coverage that can be tested and studied.

Chapter Six: Youth

Findings- NCD's 2003 juvenile justice report paralleled the findings of major reports by the Government Accountability Office and the President's New Freedom Commission on Mental Health. Children and young adults with disabilities continue to be overrepresented among incarcerated juveniles. There is a continuing need for knowledge about what constitutes effective programs that may prevent entry into the juvenile justice system, ways to address and provide clear governmental support for ongoing youth leadership programs, and efforts to increase the direct input of youth with disabilities in decision making.

Recommendations- The Administration should appoint a high-level national commission to make recommendations about juvenile justice systems and disability interconnections. A federal official should be designated with authority to speak for the Administration. The findings must be formally reviewed, adopted, rejected, or otherwise responded to by the appointed federal official as part of follow-up work on the commission's advice. The Administration should instruct each federal agency that implements programs and services for youth with disabilities or their families to develop ways of obtaining and considering opinions, experiences, and recommendations of this constituency in future program planning.

Chapter Seven: Employment and the Workforce Development System

Findings- Among the key findings are the need for antidiscrimination provisions in legislation, the development of program outcome measures as they relate to individuals with disabilities, and increased attention to the implications of the aging of the workforce for people with disabilities. The latter observation also portends a substantial increase in the proportion of people with disabilities in the workforce, given the strong correlation between disability and aging. The new role of the vocational rehabilitation (VR) system operating through One-Stop Centers raises questions that VR needs to address. Finally, the availability and feasibility of resources to support employment of people with disabilities will require addressing issues linked to various loan programs, employment tax incentives, and the Ticket to Work and Work Incentives Improvement Act (TWWIIA).

Recommendations- A critical proposal focuses on ensuring that evolving principles of accountability can be applied to enhance the ability of the workforce development system, in its mainstream and specialized components, to respond most effectively to the employment needs and aspirations of Americans with disabilities. The Department of Labor (DOL) needs vigorously monitor and enforce the law, as one key means for ensuring full participation in the workforce and employment development system by all job seekers. DOL should also develop outcome measures that take due account of all the relevant variables involved in working with job seekers with disabilities-including not only the potential costs of working with this population within a mainstream setting, but also the benefits to the taxpayers of commitment and success in such work. The Administration should establish a blue-ribbon task force for expedited study and recommendations to Congress on ways to strengthen the capacity of the economy to retain and benefit from the services and experience of older workers with adult-onset disabilities. Recommendations are also made for clarifying the objectives of loan programs, enhancing the reach of the Work Opportunity Tax Credit (currently awaiting reauthorization), and responding to key research findings on the adequacy of TWWIIA incentives and procedures to meet the needs of people with disabilities.

Chapter Eight: Welfare Reform

Findings- Rigid application of recipient time and benefits limits and work requirements-central to the current Temporary Assistance for Needy Families (TANF) legislation and which seem likely to be retained in some form in the reauthorization-may not serve the goals of promoting independence and self-sufficiency. People with disabilities may have unique training and/or supports (including AT) needs in order to reach their goals of joining the workforce. Individual Development Accounts (IDAs) are a source of increased funds for goods and services needed for success in employment, but currently applicability to TANF recipients with disabilities is limited in ways that are easily correctable.

Recommendations- As Congress considers reauthorization of TANF, flexible interpretation and application of the law that provides for structured relationships between the welfare and disability services sectors, including VR, are recommended to ensure that the goal of people with disabilities joining the workforce is served. Congress should broaden the definition of qualifying savings goals for TANF IDAs to include assistive or universally designed technology and modified vehicles or other specialized transportation services needed in order to work. Before sanctioning or curtailing benefits based on time and duration limits, states should ensure that any individual with a significant disability, a hidden disability, or whose service needs as primary caregivers for family members with disabilities have been offered a full medical-vocational assessment through the state's Office of Disability Determination and its VR agency.

Chapter Nine: Housing

Findings- Problems are inherent in the lack of coordination among programs and agencies. Improvement is needed in evaluating the effectiveness of existing housing programs that have unique implications for people with disabilities or that were designed to specifically impact the lives of people with disabilities. Civil rights enforcement continues to play a key role in bringing about an increase in the supply of accessible and affordable housing. The marketplace needs incentives to build accessible housing and modify existing units to make them accessible.

Recommendations- Agencies need to ask basic questions in order to evaluate the effectiveness of housing programs. The Departments of Justice (DOJ) and Housing and Urban Development (HUD) should systematically address each of the housing accessibility and discrimination issues and jointly publish guidelines delineating the management of cases from HUD (or Fair Housing Assistance Program) complaint to DOJ or judicial disposition. Procedures and standards could be applied to ensure that antidiscrimination provisions are meaningfully implemented and that they contribute to the achievement of their objectives. The Administration should appoint a high-level national commission-composed of economists, housing and transportation experts, tax practitioners, legal analysts, architects, land-use planners, and individuals with disabilities-to map a long-term strategy for steadily increasing the proportion of the nation's housing stock that meets standards of accessibility. Pending the full demonstration and realization of the broad-based benefits of greater housing accessibility, interim recommended measures include stronger federal encouragement of the visitability concept and the modernization of standards for what constitutes accessibility.

Chapter Ten: Transportation

Findings- Without attention to transportation, important goals in employment, education, access to medical care, and even the ability to live in the community may all be put at risk. The Transportation Security Administration (TSA) can build on its successes in incorporating the rights of people with disabilities into the nation's airport security screening system. The expected reauthorization of the Transportation Equity Act for the 21^st Century raises issues such as authority for NFI transportation programs and other specialized transit demonstrations and programs of particular interest to people with disabilities. New challenges confront paratransit programs, such as the practice of determining trip eligibility on a trip-by-trip basis, as well as new needs created by changing residential and employment patterns.

Recommendations- TSA should build on its successes with disability rights by clarifying for consumers the distribution of authority for civil rights enforcement, and incorporating accessibility considerations into the design of new airport technologies. Coordination of transportation planning with state-based efforts to implement the Olmstead Supreme Court decision is also recommended. How the practice of determining trip eligibility on a trip-by-trip basis affects the users of the service should be investigated.

Chapter Eleven: Technology and Telecommunications

Findings- The Assistive Technology Act is in danger of sunsetting if not reauthorized. Key areas of Federal Communications Commission (FCC) jurisdiction have important bearing on the technological infrastructure regarding equal opportunities for people with disabilities. The DOJ is recognized for undertaking to survey federal agencies regarding various aspects of their implementation of Section 508 of the Rehabilitation Act.

Recommendations- Congress should move forward to reauthorize the Assistive Technology Act. The FCC needs to enforce Section 255 of the Federal Communications Act-the law vests the FCC with jurisdiction to enforce requirements for accessibility of telecommunications equipment and services-in the manner intended by Congress or necessary for achievement of the law's objectives. The FCC should also ensure that schools and libraries receiving subsidized telecommunications services will make those services accessible to persons with disabilities. Further research is needed on agencies' practices in areas such as how exemptions to Section 508 of the Rehabilitation Act requirements are granted.

Chapter Twelve: International Affairs

Findings- U.S. foreign assistance programs can be made responsive to the rights and interests of persons with disabilities within the countries receiving aid. Civil rights protections afforded to Americans under such laws as Section 504 and the ADA can be brought to bear on behalf of Americans serving their nation abroad and even on behalf of the residents of other nations.

Recommendations- Successful efforts to incorporate human rights or other ethical concerns into the administration of foreign assistance should be used as examples of how to ensure U.S. foreign assistance programs are responsive to human rights and interest of people with disabilities. Strong Administration support for the treaty of the pending United Nations Convention on the Rights of People with Disabilities, including a commitment to ratification, is recommended.

Chapter Thirteen: Homeland Security

Findings- TheDepartment of Homeland Security (DHS) has taken steps to incorporate nondiscrimination into its programs. Models and technical assistance supporting dissemination and application of the models for including people with disabilities in emergency preparedness planning at all levels are vitally necessary. NCD commends efforts to address the issue on the federal interagency level.

Recommendations- NCD applauds DHS efforts on inclusion and offers its assistance in the agency's continued application of nondiscriminatory policies and practices to a variety of situations and contexts. Emergency preparedness models should be extended to the private sector. DHS should study its contractors' policies and practices and provide them with the technical assistance necessary to ensure that in the development of all technology and procedures, users with disabilities will be included in the testing process and otherwise be taken fully into account. Civil rights protections need to be extended to the variety of private sector entities doing product and systems development on behalf of homeland security.

As stated previously, a compilation of all specific recommendations to Congress, the Administration, federal agencies, courts, and other entities can be found at the end of the report.

Chapter One
Disability Statistics and Research

Introduction

Statistics play a large role in all we do. From the role of population and relative wealth and poverty in determining the allocation of various federal funds among the states, to the use of trend data about various diseases that influences the allocation of medical research funds, statistics are a constant source of data for policy and decision making.

In the area of disability, the need for good baseline statistical data and the complexities encountered in collecting that data are considerable. This chapter reviews some established strategies and assumptions and suggests some new approaches that may help to break new ground in the gathering and effective use of statistical data.

The first section reviews some of the major assumptions that have gone into the collection of disability-related statistics over the years. The next section discusses limitations in our traditional approach. The third section addresses new approaches for defining and obtaining the statistical information we need.

The Premise of Disability Statistics

No one is likely to dispute the premise that the more we can learn about the number of people with disabilities in this country, about the types of disabilities they have, and about the kinds of lives they live, the better informed decision making will become. Such evidenced-based data can inform public policy; give direction to the allocation of time and resources; and offer baseline data from which trends, improvements, or deterioration can be measured.

On this premise, we have concentrated considerable attention on the long form used by the Census Bureau for the decennial censuses of 1990 and 2000, the Census Bureau's American Community Survey (ACS) program, and research funded under the auspices of the Centers for Disease Control and Prevention (CDC). Efforts were undertaken in collaboration with the National Institute on Disability and Rehabilitation Research (NIDRR) and other government agencies. Common to these efforts were objectives focused on (a) determining the number of people with disabilities; (b) establishing the levels of income, employment, and education of these citizens; and (c) comparing existence and experience data on people with and without disabilities in a variety of areas.¹

By and large, this research has taken as its point of departure the notion of disability as a static, although often subjective, fact. When people are asked in self-reporting surveys whether they have a disability or condition that limits one or more major life activities, including a work disability, we assume that, although two people in very similar situations may answer the question differently, or the same person may even answer it differently at different times, the answer given reflects some assessment of factual data by the respondent at that moment.

One may characterize this research as one dimensional as it relates to employment, education, health care, or other intervention programs. That is to say, it seeks to develop direct correlations and draw conclusions based on the premise that the existence of a disability gives rise to certain consequences and predicts the need for and the utility of certain services and programs.

Because reliable and comprehensive data has proved difficult to collect, researchers and decision makers have found themselves without effective means to fully evaluate and validate the intervention strategies and program models we have used. While continuing to refine data collection techniques in traditional demographic areas, perhaps it is time to pursue new avenues of research as well. Further discussion in this regard is presented in the sub-section below on new directions in research.

Limitations in the Approach

In its annual progress reports over the past several years, NCD has discussed in detail the limitations confronting the collection and use of current disability statistics and research data.² We do not propose to repeat those findings here. Suffice it to say, a number of factors have combined with bureaucratic and interagency coordination issues to stymie the collection and use of current disability statistics and research data. Examples include varying definitions of disability from statute to statute and program to program, ambiguities in the wording of questions, and variations in the precise wording of questions among survey instruments. In addition, many respondents are unaware of the availability of assistive technology or other resources that could overcome functional limitations and legal restrictions on eligibility under various programs (which in effect force people to assume lesser roles in society).³

Nor is it even clear that more reliable statistics would have a definite impact on public policy. Debate persists over the number of Americans with disabilities, with estimates varying widely. But is there any ground for supposing that the competing approaches to improving participation levels and quality of life for people with disabilities would differ depending on if there were 40 or 60 million such persons? For example, answers to one of the six disability-related questions on the Census 2000 long form suggest significantly higher levels of employment than other data does. Can the people who follow one set of policies be readily distinguished from those who advocate another set of policies based on their belief as to the reliability of the answers to this census question? The answer is no. Everyone agrees that the unemployment number is still too high, and disputes over the kinds of programs to adopt are not fought on the basis of clearly differentiated positions on the trajectory of disability employment.

NCD strongly supports the continued collection and refinement of all possible data. To that end, NCD recommends that disability-related questions be retained and improved in the 2010 Census. If the Census Bureau believes that it lacks legislative authority to retain or enhance these questions, it should immediately seek the necessary legislative authority from Congress.

NCD further recommends that the U.S. Government's Interagency Committee on Disability Research (ICDR) be given all possible resources, status, and visibility by the Administration to carry out the interagency research and coordination so vitally necessary to the collection and rationalization of disability statistics.

While these important efforts go forward, new directions in statistical research are urgently needed. These efforts will not only lead to clear answers to important questions, but by spotlighting new questions they can help to improve and modernize policy and law affecting people with disabilities in many areas of American life.

New Directions and Approaches

The New Paradigm

NCD believes, in concert with the growing body of opinion among people with disabilities and others, that a disability is not an objective or static fact or event. Consistent with the approach taken by the International Classification of Functioning, Disability and Health (ICF),⁴ NCD believes that disability, too often confused with impairment, exists not in the individual, but in the inadequate interface between the individual and society.

We know that when buildings are made accessible, people with mobility disabilities can enter, learn, shop, and work there. We know that when information is provided in an accessible format, persons with sensory disabilities can obtain and use it in the same manner as anyone else. In a world in which technology and society reflect the fact that the interface between the individual and the environment is what determines function and possibilities, there is little point or meaning in asking people whether they have a substantial limitation in one or more major life activities due to a physical or mental impairment.⁵ The source or measure of substantial limitation resides not within the individual, but rather in the absence of an elevator, a sign-language interpreter, or assistive technology resources.

There is nothing new in this paradigm. What may be new is to ask a perennial question in a different way: If we recognize and embrace the role of technology, convenience, and infrastructure in the lives of Americans at large, how can there still be debate over whether it is the presence or absence of these, rather than any individualized limitations, that in aggregate terms defines the participation and function of America's nearly 60 million citizens with disabilities?

New Directions in Research

From the limitations of existing data and from this new paradigm, it follows that new kinds of research are urgently needed. The growing awareness of the need for accountability in public expenditure and programs also points the way toward, and emphasizes the need for, new directions in investigation.

Broadly speaking, the need is for vastly more data on the effects of various societal decisions and arrangements on people with disabilities, and on the diverse costs and benefits to society of changes in those arrangements. For example, under most of our disability civil rights laws, what constitutes a reasonable accommodation under the Americans with Disabilities Act (ADA)⁶ is conditioned on whether the necessary measure would represent an "undue burden" to the employer, state or local government, or public accommodation. Of course it is appropriate to make this determination and vital to avoid making demands on any sector of society that would be disproportionate, counterproductive, or unachievable. But the matter cannot end there.

Too often, as is increasingly the government's approach in Office of Management and Budget (OMB) or other assessments of proposed actions or regulations, inquiry and official interest focus on short-term financial impact on a small group of entities. This may be small businesses, large businesses, or units of government, depending on the circumstances. Again, it is just as important to avoid disproportionately burdening or harming definable sectors of society as it is to avoid doing such harm to individuals or single companies. But again, this cannot be the end of the discussion.

We must also pursue with equal vigor, and with equal methodological rigor, the related question of the effects on people with disabilities of the particular decision at issue. What will be the opportunity costs of exclusion, and what will be the benefits of fuller participation and access?

Today, we have few tools for reliably addressing these issues, particularly in connection with policy proposals that involve upfront expenditures but will yield their full economic return to society over a number of years. Statements such as "every dollar spent on rehabilitation returns $7 in taxes and consumer demand" are gospel to some people, urban myth to others; but until we have reliable means for evaluating them, and for placing their results on a par with the interests and prospects of other groups in society, can we hope to develop or implement effective policy?

Throughout this report, we will encounter instances in which the existence and application of new analytical tools would, to a great degree, inform and clarify decision making. The process of developing these tools is by no means simple, but as competition for scarce resources intensifies and the need for accountability grows, what alternative do we have?

Accordingly, NCD recommends that Congress authorize research studies into the effectiveness of a number of leading programs and intervention strategies. The first step might be assessing key indicators-such as the employment and income status of persons with disabilities who have been employed following successful completion of vocational rehabilitation (VR) programs--and comparing the information obtained to the disability population generally and the working-age population as a whole. Additional avenues of study should look at the employment and income status of persons with disabilities who have graduated from college and/or those who are in a pilot experiment, ensured of full and uninterrupted access to comprehensive medical care after they enter employment. Other research should address the impact-again through a pilot experiment, if necessary-of the provision of adequate transportation in rural areas on nursing home admissions and care costs. Finally, the research could focus on the level of employment sustainability achievable in a sample of persons who are allowed to retain their Social Security Income (SSI)cash benefits for two years after they enter work, subject to gradual phase out over a multiyear period.

Such studies will not resolve differences in approach and will not answer all questions as to what is fair or appropriate. But such studies will provide data on the basis of which such underlying philosophical and pragmatic disagreements can be more responsibly discussed and addressed. Until such data begins to become available across a broad range of programs and issues, we can have little confidence in the wisdom of current approaches or in the relative merits of alternative proposals.

Even more broadly, we need analytical tools for measuring the diverse effects-short- and long-term, direct and indirect-of current or prospective policy. While the law of unintended consequences may be the one law we can always be sure of, methods can be improved for assessing the knowable consequences of our acts, especially the indirect implications for one program, group of people, or action taken with particular reference to other programs or target populations. Accordingly, NCD recommends that the Administration appoint a high-level presidential task force that includes leaders in economics, demographics, health care, education, and law, and leaders from within the disability community. This task force should begin the task of identifying econometric, statistical, observational, forecasting, and other techniques and tools that may be available to bring greater accountability to disability policy. It should also identify the range of outcomes, consequences, implications, and relationships that must be taken into account in designing policy and assessing its effects. This presidential task force should be charged with developing methods for identifying long-term benefits that are as reliable and persuasive as those methods we now use for measuring short-term costs. It should assemble all data on the investment value of public expenditures and on the relative impact of various forms of subsidy and cross-subsidy arrangements, including those we now utilize. It should also develop and apply techniques for measuring opportunity costs and for measuring other hitherto conjectural, but nonetheless increasingly real and powerful, dimensions of our collective experience.

Conclusion

This chapter has reviewed the assumptions and issues surrounding current and traditional disability statistics collection and research. It has suggested the strengths and weaknesses of such research, and it has indicated the reasons for believing that emerging new value systems call for new statistical approaches aimed at gathering and validating new categories of information. The chapter suggests some of the techniques that might be used and outcomes that might be foreseen. The chapter closes with the confidence and hope that better research techniques, resulting in the availability of better data, and dealing with the pressing issues of our time, cannot help but be useful, whatever strategy or approach they tend to support.

Recommendations Summary

Recommendations to the Administration

Recommendation 1.1-NCD recommends that the Administration give the Interagency Committee on Disability Research (ICDR) all possible resources, status, and visibility to carry out the interagency research and coordination so vitally necessary to the collection and rationalization of disability statistics.

Recommendation 1.2-NCD recommends that the Administration appoint a high-level presidential task force, including leaders in economics, demographics, health care, education, and law, and leaders from within the disability community, to begin the task of identifying econometric, statistical, observational, forecasting, and other techniques and tools to bring greater accountability to disability policy, and to identify the range of outcomes, consequences, implications, and relationships that must be taken into account in designing policy and assessing its effects.

Recommendation to Congress

Recommendation 1.3-NCD recommends that Congress authorize research studies into the effectiveness of a number of leading programs and intervention strategies. The first step might be assessing key indicators such as the employment and income status of persons with disabilities who have been employed following successful completion of vocational rehabilitation programs and comparing the information obtained to the disability population generally and the working-age population as a whole. Additional avenues of study should look at the employment and income status of persons with disabilities who have graduated from college and/or those who are in a pilot experiment, ensured of full and uninterrupted access to comprehensive medical care after entering employment. Other research should address the impact-again through a pilot experiment if necessary-of the provision of adequate transportation in rural areas on nursing home admissions and care costs. Finally, the research could focus on the level of employment sustainability achievable in a sample of persons who are allowed to retain their SSI cash benefits for two years after they enter work, subject to gradual phase out over a multiyear period.

Recommendation to the Census Bureau

Recommendation 1.4-NCD recommends that disability-related questions be retained and improved in the 2010 Census. If the Census Bureau believes that it lacks legislative authority to retain or enhance these questions, it should immediately seek the necessary legislative authority from Congress.

Chapter Two
Civil Rights

Introduction

This chapter presents a number of threats to and opportunities in the area of civil rights. It also addresses issues that need to be discussed publicly in developing policies to maximize and ensure the fullest effectiveness of civil rights laws.

This chapter addresses the Americans with Disabilities Act, examines Section 504 of the Federal Rehabilitation Act, discusses accountability in civil rights enforcement, examines concerns about genetic discrimination, and considers voting rights.

The ADA

Continued Erosion of Rights in the Courts

The year 2003 witnessed continuation of the trend of Supreme Court and lower federal court decisions narrowing the scope of the ADA and complicating reliance on its provisions. Supreme Court decisions of note this year included the Clackamas case, an employment discrimination case that narrowly defined the term "employee" for purposes of determining whether a medical facility had the minimum number of employees (15) required for coverage under Title I of the ADA.⁷ In another major decision, the Raytheon case, the Supreme Court was called on to determine whether a firm's refusal to rehire a rehabilitated substance abuser violated the law. The Court did not answer the question, but found instead that the lower court had applied an improper analysis and remanded the case for further proceedings. The Court acknowledged that discrimination claims based on disparate treatment (the intention to discriminate against an individual because of his disability) and cases based on disparate impact (facially neutral, but discriminatory in effect) are cognizable under the ADA. However, the Court stated that, in a claim of disparate treatment, if an employer applies a neutral, generally applicable no-hire policy in rejecting an employment application, the ADA is not violated.⁸

Perhaps as important as the cases that were addressed or resolved by the Supreme Court in 2003 are the issues that were not. Several cases presenting major issues were settled, withdrawn, or otherwise terminated short of Supreme Court adjudication. These cases raised issues such as how undue burden was to be measured when a city that had failed to comply with the ADA's requirements for sidewalks and curb cuts for more than a decade now claimed that requiring it to make up for lost time would be too financially burdensome.⁹ Yet another case would have raised the issue of whether the ADA covers decisions by state boards regarding professional licenses.¹⁰

As 2003 ended, attention focused on a case that was argued before the Supreme Court on January 13, 2004. The much-publicized case of Tennessee v. Lane¹¹ squarely raised the question of whether Title II of the ADA can be used for lawsuits by private individuals for money damages against states, or whether, as with cases alleging employment discrimination under Title I, such suits are barred by the doctrine of sovereign immunity under the Eleventh Amendment to the Constitution.¹² The case has received as much attention as any disability rights case, or perhaps more.¹³ One reason may be the compelling facts of the case: A citizen who uses a wheelchair, after first crawling up two flights of stairs to an inaccessible courtroom, refused to do so again and as a result was arrested for failure to appear. Or the attention may stem from the poignant fact that access, not merely to public services in the abstract, but specifically to the courts, is at issue; from the absolutist position taken by the state, which argued that its actual behavior is not at issue because the Constitution bars the suit;¹⁴ or perhaps from the potentially large sums of money at stake, depending on whether or not citizens are permitted to sue states for damages under Title II.

NCD wishes to commend the Department of Justice (DOJ) and the solicitor general for the amicus brief supporting the constitutionality of the ADA filed with the Supreme Court in this case.¹⁵ The recognition by an Administration, generally committed to states' rights, of the need for application of a federal statute in this case affirms the importance of the rights at stake in Lane.

NCD prepared a policy brief on the issues raised by the Lane case and recommended that the Court uphold the constitutionality of Title II as a whole.¹⁶ Limiting the Title II remedy to recognized constitutional violations or to violations based on the Due Process Clause would impose arbitrary limitations on the reach of the remedy because it would exclude situations in which Congress was well within its power to legislate under Section 5 of the Fourteenth Amendment, and where the states have demonstrated a record of constitutional violations. However, it is likely that the Lane case will be decided in favor of a disabled individual's right to sue states for disability-based discrimination for failing to make judicial proceedings accessible, leaving unanswered questions about how the Supreme Court will interpret the constitutionality of Title II as applied in other state programs and services.

The Need for New Approaches to the Judicial Process

To the degree that many Supreme Court decisions limiting the ADA involve constitutional issues, advocates have been at something of a loss to know how to respond to or reverse these decisions. Amending the Constitution would be difficult and dangerous, and would in any event take many years to accomplish. Short of such a drastic and impractical measure, efforts to educate judges, greater awareness as they see more cases, and perhaps even their own personal experiences as they and their family members grow older may, in time, result in some reassessment of their views, even of their constitutional philosophies; but these, too, are long-term and highly uncertain prospects.

To expedite the learning processes that we hope and believe will take place, NCD urges that the Judicial Conference of the United States, through the Administrative Office of the Courts, undertake a number of discretionary measures that may be helpful in better acquainting courts with the human suffering that discrimination entails and also with the usually simple strategies available for preventing its occurrence. First, NCD recommends that attorneys and judges with disabilities be invited to participate in seminars at institutes and meetings of and for federal judges held under various auspices during the year. Second, NCD recommends that, in several sample federal districts and circuit courts of appeals, the courts undertake a comprehensive ADA self-assessment, including physical, programmatic, and communications barriers. We believe that such an assessment would serve three goals. First, it would familiarize judges and administrators with hitherto unexposed issues that are of concern to citizens, litigants, employees, journalists, and attorneys with disabilities. Second, it would demonstrate how relatively unobtrusive and nonburdensome elimination of most of these barriers can be. Third, once judges and court administrators realize the great benefits and the minimal disruption associated with nondiscrimination and barrier removal, they are likely to incorporate such new knowledge into their actions in the management of the courts and into the ways they approach cases coming before them.

One serious but easily remedied barrier to access to the federal courts is the inaccessibility of many electronic versions of court documents, including judicial decisions. Although this inaccessibility occasionally results from the design of the Web sites on which the materials are published, the major problem appears to be that they are created in a PDF format, which is not readily accessible to persons using screen-readers-people who are blind, who have low vision, and who have other disabilities that interfere with reading standard print.

It is not our purpose here to review the methods that other branches of the Federal Government have successfully used and smoothly adopted to make a wide variety of documents, including documents of record, available in formats accessible to citizens. Suffice it to say that, without compromising the independence or autonomy of the judicial branch in any way, resources and technical assistance for doing this are readily available within and outside the government.

Accordingly, NCD recommends that the Judicial Conference of the United States adopt the standards and protocols for Web site accessibility and document formatting and design embodied in Section 508 of the Rehabilitation Act; seek and provide the technical assistance resources that each court will need to implement these principles; establish realistic but meaningful timetables for completion of the work; and seek the input of persons with disabilities, including attorneys, litigants and court employees, as well as jurists, to provide input and feedback as the process goes forward.

Even if these experimental measures do not effect trends in constitutional jurisprudence or judges' senses of where the balance between competing rights and principles should be struck, they can hardly fail to have a large impact on the growing array of critical cases where statutory interpretation rather than constitutional adjudication is involved.

The judicial branch should, at its discretion and under its sole management and control, undertake additional consciousness-raising efforts. Such efforts might include surveying federal judges about the number of law clerks with disabilities they have employed or interviewed. Similar research in the past, conducted within and outside the court system, has disclosed a significant lack of ethnic and cultural diversity in the ranks of high-level judicial personnel and has resulted in levels of awareness that one hopes are leading to remedial action and renewed outreach.¹⁷

Efforts to educate the federal judiciary must also proceed along the traditional lines of legal scholarship and argumentation. NCD has published a series of some 20 Righting the ADA policy briefs since late 2002, carefully and comprehensively analyzing the legal issues raised by the Supreme Court's ADA decisions.¹⁸ These policy briefs offer a wealth of insights and data for those wishing to advance legal arguments on behalf of the rights of Americans with disabilities in a variety of settings or forums.

But these briefs also do something more, something for which, in this age of accountability, the judiciary needs to acknowledge and accept responsibility. They show that in many legal contexts, the Supreme Court has adopted shifting standards and result-oriented analytical principles, in ways that compel the conclusion that many of the decisions are preordained. This progress report is not the place to reiterate or summarize the inconsistencies and patterns in question, but mention of a few of the most glaring examples may at least help to explain why the disability community may be growing apprehensive and mistrustful of our courts.

Three illustrations may be cited. First, gratuitous language in a number of the opinions reflects hostility to the civil rights claims of individuals with disabilities. Second, in many disability rights cases, normal and well-established maxims of statutory construction, such as the principle that civil rights statutes should be broadly construed to achieve the purposes of the law, are rejected, without explanation, in favor of narrow constructions-for example, the definition of "substantial limitation of a major life activity." Third, in cases where reliance on the administrative interpretations of law made by federal oversight agencies such as the Equal Employment Opportunity Commission (EEOC) support a decision against the disability rights claim, the court embraces deference to agency expertise. But in cases where such reliance would support a finding in favor of the civil rights claim, agency interpretations of the law are dismissed, usually without explanation as to why they are being treated differently.¹⁹ This pattern gives disparate impact a whole new meaning.

Citizens, of course, have no means of holding appointed, life-tenured judges accountable for their actions, nor would anyone advocate curtailment of the independence and autonomy of the courts. All that citizens and advocates can do is call on the conscience of the judicial and legal communities to search their law books and hearts to ensure that, whether the decisions come out for or against this or that interest or value system, they are made in accordance with neutral principles of law and without fear or prejudgment.

New Federal Legislation

The year 2003 witnessed reintroduction in Congress of the ADA Notification Act, ²⁰ a bill that would require potential ADA litigants to give defendants 90 days' notice of their intention to sue. While justified on grounds of giving defendants an opportunity to avoid litigation by remedying violations of the law, this proposal treats the threat of ADA litigation differently from that of lawsuits under any other federal statute; nowhere else in the law are potential defendants given this benefit. To comprehensively provide for a warning period in the case of all civil suits under all federal statutes would be one thing; to single out the ADA this way, particularly when the ADA Notification Act would also restrict the availability of attorneys' fees, is something else, reflecting an agenda having little to do with balance or justice.

The proposed ADA Notification Act also would likely restrict the ability of individuals to obtain emergency injunctive relief to prevent imminent and irreversible harm. The proposal appears to make no exception to the notice requirement in such cases, and certainly nothing in the bill would prevent the courts from interpreting it to apply to suits for emergency injunctive relief as well as to conventional lawsuits brought under the ADA.

NCD is gratified by President Bush's opposition to this proposal.²¹ If Congress wishes to consider waiting periods for all civil lawsuits, including suits by large and powerful entities against individuals, the disability community would hope to play a part in such deliberations.

While the yearly reintroduction of legislation such as the ADA Notification Act has naturally placed the focus of the disability community on forestalling ill-advised legislation, and while many have feared that opening the ADA to any amendment would be dangerous in the absence of the broad consensus that brought about its passage 14 years ago, the time may have come when the risks of new legislation are outweighed by the risks of inaction. Leaving aside the Supreme Court's constitutional decisions, court rulings interpreting and applying the ADA on statutory grounds have combined to render the law a virtual nullity in many of the settings to which it was widely expected and presumably intended to apply. In such areas as the meaning of "substantial limitation," the role of "mitigating measures," the definition of "regarded as" having a disability, the availability of damages, the procedures applicable to mediation, the role of seniority systems, the meaning of "place" in the concept of public accommodations, and numerous other areas where the courts have interpreted the statute adversely to the interests of individuals with disabilities, Congress has the authority and the responsibility for determining whether the existing judicial determinations are in accord with its intentions or with the goals of full participation in society that President Bush's New Freedom Initiative (NFI) has so consistently and clearly espoused.

In connection with the ADA and in other areas as well, the Supreme Court's constitutional decisions over the past decade have dramatically altered the balance of power among the three branches of our government, depriving Congress of much of the authority that liberals and conservatives alike have assumed it possessed, whether wisely or unwisely exercised, over the past 70 years. What Congress can or should do to restore its prerogatives is beyond the scope of this report, but Congress can address the statutory dimensions of ADA implementation to a considerable and important degree.

Accordingly, NCD recommends that Congress enact an ADA Restoration Act, which will responsibly recalibrate the balance between fairness and individual dignity on the one hand, and institutional costs and convenience on the other, by addressing many of the interpretive and procedural issues noted above.

Section 504 of the Rehabilitation Act

With so much attention focused on the ADA, it may not be surprising that another equally important federal civil rights statute has been pushed into the shadows. This is Section 504 of the Rehabilitation Act of 1973,²² the first statute to declare discrimination against persons with disabilities by entities and programs utilizing federal funds to be illegal. Because of neglect in enforcing this law, and because of its continued legal and symbolic importance, NCD has sought to restore attention to Section 504 and to evaluate its implementation and its prospects in a major report, Rehabilitating Section 504, published in February 2003.²³

The latest in NCD's series of major civil rights monitoring reports,²⁴ Rehabilitating Section 504 examines the enforcement of the law by the five major federal agencies responsible for its implementation (namely, the Departments of State, Education [ED], Health and Human Services [HHS], Justice [DOJ], and Labor [DOL]). In findings that are systemic and of long standing, and that implicate Administrations of all parties, NCD's careful review and assessment finds significant absences of leadership, resources commitment, and focus in connection with the exercise by these agencies of their responsibilities under the law. Though a number of agency initiatives-including HHS's Web site, ED's technical assistance guidance, and DOL's reasonable accommodations information-warrant praise and emulation, the report discloses large-scale indifference to Section 504 on the part of the Department of State. Significantly, with respect to DOJ, which has a preeminent responsibility and a unique opportunity through its coordinating role, the report finds that DOJ has largely failed to meet its obligations in this area.

Specifically, the report finds that the Interagency Disability Coordinating Committee (IDCC), the designated vehicle for Section 504 coordination across the range of involved federal agencies, is essentially defunct. The group has not accomplished what is needed to put any alternative mechanisms in place.

The report's findings offer a blueprint and a starting point for necessary and long-overdue reforms. Its appearance is particularly timely because, for a number of reasons, Section 504 may actually be as important legally as it has been at any time since the passage of the ADA-or more so. Section 504 and the ADA parallel each other in certain respects-for example, in the obligations they impose on state and municipal recipients of federal funds-but the two laws also differ in material respects-including what entities and activities are covered, who is protected, and what actions are barred or mandated by the law.²⁵ As ADA enforcement becomes more and more problematic, this parallel statute may become more and more important. Section 504 also has important applications, alongside but separate from those in the Individuals with Disabilities Education Act (IDEA), in the area of education of students with disabilities.²⁶

This report cannot address in detail all the specific areas where Section 504 may uniquely apply or where it creates rights, responsibilities, and opportunities distinctive from those established under other laws. Suffice it to say that, in the absence of effective implementation, including, especially, coordination of resources, planning, priorities, and procedures, the law's purposes and benefits cannot hope to be achieved.

Accordingly, NCD recommends that DOJ reactivate and support the work of the IDCC, with a view to developing, publicizing, and implementing a cross-agency plan for the implementation and administration of Section 504 that will ensure clarity, consistency, and predictability for both individuals with disabilities and entities receiving federal financial assistance.

Beyond making up for lost time, major new issues also confront the enforcement of Section 504. In order to avert potential litigation, there are issues that DOJ needs to address by regulation or other authoritative pronouncement. Especially noteworthy in this regard is the changing meaning of the concept of "federal financial assistance."

As the Federal Government utilizes more and new kinds of contractual relationships in its efforts to enlist partners in the delivery of public services and in the creation of new service-delivery models that emphasize competition and choice, the question of which of these contractual relationships are covered by Section 504 emerges with increasing urgency. Existing case law does not appear to offer clear guidance on the question of whether all or only certain contractual relationships involving the allocation of federal funds to private, nonprofit, faith-based, and state and local governmental entities constitute "federal financial assistance" within the meaning of the law. If, for example, the Medicare program pays or reimburses a managed care organization for the provision of prescription drugs or other health care coverage, does the transfer of federal funds to that HMO or other managed care entity constitute federal financial assistance? Would the answer to that question depend to any degree on whether the federal payment was regarded as reimbursement only, or whether it contained an additional component designed to incentivize the HMO's participation in the Medicare program? Would Section 504 come into play if a participating prescription-drug discount-card provider refused to include drugs needed by people with certain major disabilities in its formulary?

Similarly, if a faith-based organization providing services under contract with the Federal Government declines or is unable, for reasons of conscience or doctrine, to comply with the requirements of Section 504 in some respect, does that organization fail to meet the obligations required of an entity receiving federal financial assistance? If it does, can a First Amendment religious freedom argument be interposed to block the application of Section 504?

Faced with these and other new issues, NCD urges DOJ to initiate rulemaking or other processes, based on extensive input from the public, to identify and resolve all current and potential ambiguities in the application of the law. Only in this way can the legitimate interests of people with disabilities and of funds recipients be served with certainty and predictability. Likewise, if DOJ's effort reveals the need for new or clarifying legislation, the Administration and Congress can work together to fashion the necessary new measures. For those people, from either end of the political spectrum, who worry about the undue involvement of the courts, such prophylactic measures are likely to prove of great value.

Accountability in Civil Rights Enforcement

Beyond the specifics of ADA or Section 504 philosophy and implementation, our nation today faces unique demands for effective administration of the law, persistent budgetary pressures that mandate the most efficient possible deployment of resources, and, above all, strong and long-overdue demands for accountability in the administration of all laws and programs. Because these relate to civil rights, they suggest the need for an inclusive national dialogue on the priorities and assumptions underlying current approaches to the enhancement of civil rights and on the means available for determining what approaches are most successful.

For example, testifying in February 2003 before the House Judiciary Subcommittee on the Constitution, the assistant attorney general for civil rights spoke proudly of the Administration's increased rate of settlements of civil rights complaints.²⁷ Needless to say, reducing backlogs and avoiding costly or protracted litigation are in the best interests of everyone. But as with the buying or selling of houses, you can always make a deal if you are willing to raise or lower the price enough. For all those affected by the civil rights enforcement process, the key questions to ask relate to the nature of these settlements, to how the commitments and undertakings made by parties to these settlements are tracked and monitored, and to how effective current settlement policies prove to be in bringing about compliant behavior and positive long-term change among complainants and defendants alike.

It is not the place of this report to guess whether settlement policies are too lenient or too harsh, or whether they foster long-term compliance or contribute to an atmosphere of gamesmanship and hair-splitting. What it is appropriate for this report to do is suggest that the criteria for settling cases, and the goals sought by current settlement policies, be a matter of public record and open to input from the disability, business, and other relevant communities.

This question is not unique to DOJ, as we will see in our discussion of the enforcement of the Air Carrier Access Act in Chapter Ten.

Two broader issues are raised by an inquiry into settlement practices and standards. These critical but relatively unexplored issues lead directly back to the question of accountability. The first question is how and whether the criteria used and the goals sought to be served by various choices of enforcement strategy can be made known to the public and be subject to input from the public. The other question bearing directly on accountability is how to measure the relative effectiveness and impact of various approaches, and how to combine the best of all approaches to achieve a comprehensive response.

Broadly speaking, Administration policies, consistent with the aspirations for partnership and cooperation embodied in the President's NFI and consistent with the belief that information dissemination and technical assistance represent the best long-range strategies for fostering inclusion and full participation, have tended to deemphasize traditional law enforcement sanctions as a means for achieving progress toward equality. But no less than with strategies for responding to human needs in other areas, the principles of accountability must likewise be applicable here. The Administration and the public need to know whether the deemphasis on enforcement is, in fact, resulting in greater progress toward equality of opportunity than a traditional approach to vigorous enforcement would. Based on the available data, there is yet no way to know.

Along with the growing attention to accountability as a touchstone of public policy, our nation must strive to develop techniques for answering the questions that accountability raises. We do not presume to know at this point exactly what methodology would provide sufficient rigor for reliable comparison of alternative or competing approaches to civil rights achievement. But we know that in an age of accountability, the need to evaluate all policies and approaches cannot be avoided or denied. It may be that current, nonconfrontational strategies have resulted in more access, at less cost, and with less disruption or animosity than would otherwise have been the case. But if the lack of progress toward reducing the unemployment rates among people with disabilities (see Chapter Seven) can in any way be related to the way the government approaches the question of employment discrimination, then perhaps accountability leads to different conclusions.

In this connection, NCD is concerned that cost-benefit analysis of the sort supported by OMB appears to focus largely on the potential costs to industry of various civil rights measures, while largely lacking the means or sources of information for tracking other key elements of the overall cost-benefit equation.²⁸ Consideration of the alleged costs to one sector of society, without equal reference to a variety of other costs and of potential benefits to others, is tantamount to conducting a trial at which only one side is allowed to introduce evidence or is called to testify. Once again, a true commitment to accountability as a guiding principle requires better methodology and broader input than often appears to be forthcoming. Until or unless the costs of exclusion in the lives of untold millions of people can be measured with as much certainty as are the costs of civil rights enforcement on identifiable institutions, until or unless the benefits of inclusion command as much of our attention as do its burdens, we cannot say that we have achieved either accountability or balance in the implementation of our civil rights laws or in the pursuit of our civil rights goals.

Genetic Discrimination

Going back to its white paper on the subject[29 and in detail in its annual progress reports over the past three years, NCD has called attention to the dangers of genetic discrimination in insurance, employment, and other areas, and to the pressing need for legislation barring employers, insurers, and others from making decisions about people's lives based on their genetic makeup.

Having previously set forth the issues in detail, little purpose would be served by their repetition here. However, it is important to note three major changes in the context of the discussion that have taken place over the past year. First, the Senate adopted the Genetic Information Nondiscrimination Act of 2003,³⁰ which would bar the use of genetic information in most employment and insurance decisions. NCD commends the Senate for its action and recommends the House of Representatives follow suit as early as possible.

The second major change in the context of the genetic discrimination discussion is the implementation in spring 2003 of the regulations implementing the medical-records privacy provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA).³¹ To whatever degree arguments may have existed for delaying genetics nondiscrimination legislation until the potential of HIPAA to safeguard genetic privacy could be determined, these arguments would appear to no longer apply. HIPAA is not expected, even by its strongest adherents, to curtail current uses, or to prevent expanded future collection and use, of genetic information.

No evidence is known to NCD that acquisition of or access to genetic testing and information by employers, health insurers, or others has been materially reduced or prevented as a result of HIPAA. Nor is there any reason to believe that HIPAA, whatever bearing it may have on the transfer or sharing of sensitive information, will prevent employers, insurers, even landlords from conducting blood, urine, or other tests or otherwise requiring information that can yield genetic data. As a result, the legal case for genetic antidiscrimination legislation is stronger than ever.

The third, and in some ways perhaps the most profound, new development occurring within the past year is the publication in October of Beyond Therapy: Biotechnology and the Pursuit of Happiness, a report of the President's Council on Bioethics.³² This thoughtful analysis strives to distinguish between the legitimate uses of our growing potential for genetic engineering and manipulation, and those uses that, while conducive to our vanity, our desire for greater intelligence, enhanced beauty, or longer life, are more questionable or even at variance with basic moral values. But if genetic science cannot properly or morally be used to enhance our prospects in romance, competitive sports, or intellectual pursuits, how can it simultaneously be allowable for such information to be used by institutions that would deny people full freedom of opportunity and choice?

It may be argued that the insurers or employers or landlords who deny insurance coverage or employment or housing based on perceived genetic risk or vulnerability are not manipulating genes, and hence are not implicated by the findings and warnings of the bioethics report. But the matter is more complex. How can any reasonable person expect individuals to forgo any possibility, however spurious, for genetic enhancement or correction, so long as they know that others, with potentially immense power over their lives, will be utilizing genetic information to exercise that power?

Voting Rights

Few attributes of citizenship can be more important than the right to vote, and NCD was proud to have occasion in last year's annual progress report to hail the passage of the Help America Vote Act of 2002 (HAVA).³³

For people with disabilities, the right to vote privately and safely requires more than a statute. It requires facilities that are accessible and voting machines that are independently usable. HAVA established for the first time a national commitment and the right to these opportunities.

NCD remains mindful, though, that no rhetorical commitment or statutory requirement is any better than the day-to-day willingness and ability of a variety of participants in the process to make it work. As that awareness relates to the achievement of voting rights under HAVA, it means that congressional appropriations, HHS oversight (including through the development, in collaboration with the Federal Elections Commission and DOJ, of voluntary guidelines), state decisions, and continued voter involvement are all critical to the success of the law.

Subject to several concerns (including those relating to adequacy of HAVA appropriations, to availability of appropriate technology to meet the independent voting aspirations of people with various disabilities, to resistance by some state and local elections officials, and to potential apathy among large segments of the voting public), NCD believes that significant progress has been made during the year toward implementation of HAVA. We particularly note with appreciation the indication given by DOJ in December that it intends, as of the law's January 1, 2006, effective date, to enforce the law literally, so far as its applicability to each polling place is concerned.³⁴

Because HAVA will not come fully into effect for another two years, the risk that many Americans with disabilities will be excluded from the national election process of 2004 must be confronted. In that connection, while there is little that HAVA can do to overcome this problem, there are other legal issues that may bear significantly on the enfranchisement of Americans with disabilities before and in tandem with HAVA.

A number of cases currently making their way through the courts appear to indicate that the ADA plays a role in voting rights.³⁵ Litigation and related advocacy in the District of Columbia have contributed to the implementation of unprecedented accessible voting rights for D.C. residents this year, and cases underway in Florida and elsewhere suggest similar possibilities.³⁶

NCD recommends that DOJ support the applicability of the ADA to the polling place and the voting booth by initiating cases or intervening in cases where reasonable measures on the part of state and local elections officials could result in meaningful increases in the independent and accessible voting opportunities for Americans with disabilities.

One issue that has emerged as an area of increasing concern is the verifiability of the vote totals reported by touchscreen or other so-called direct recording equipment (DRE) voting machines. NCD takes no position on whether current models of these machines are sufficiently reliable, or on whether the lack of a so-called audit trail imperils the integrity of the electoral process. NCD does insist, however, that no changes be made that would compromise or jeopardize the levels of accessibility and independent voting mandated in HAVA.

The disability community is also concerned with the possible use of accessibility as a pretext for DRE manufacturers' refusal or inability to modify their systems. We cannot believe that it is beyond the technical ingenuity of these manufacturers to modify their designs in ways that meet election security concerns while preserving the hard-won rights and legitimate expectations of Americans with disabilities.

Conclusion

This chapter has addressed a number of perceived threats to the progress of civil rights for individuals with disabilities. It has indicated why these trends are regarded as dangerous and also suggested means by which they can be reversed. It has also addressed fundamental questions that must be asked and answered through public dialogue and through research in the formulation of strategies and procedures for effectuating a broad range of civil rights goals.

Recommendations Summary

Recommendations to the Judicial Conference and the Administrative Office of the Courts

Recommendation 2.1-NCD recommends that attorneys and judges with disabilities be invited to participate in seminars at institutes and meetings of and for federal judges held under various auspices.

Recommendation 2.2-NCD recommends that, in several sample federal districts and circuit courts of appeals, the courts undertake a comprehensive ADA self-assessment, including physical, programmatic, and communications barriers.

Recommendation 2.3-NCD recommends that the Judicial Conference of the United States adopt the standards and protocols for Web site accessibility and document formatting and design embodied in Section 508 of the Rehabilitation Act; seek and provide the technical assistance resources that each court will need to implement these principles; establish realistic but meaningful timetables for completion of the work; and seek the input of persons with disabilities, including attorneys, litigants, and court employees, as well as jurists, to provide input and feedback as the process goes forward.

Recommendations to Congress

Recommendation 2.4-NCD recommends that Congress enact an ADA Restoration Act that will responsibly recalibrate the balance between fairness and individual dignity on the one hand, and institutional costs and convenience on the other, by addressing many of the interpretive and procedural issues.

Recommendation 2.5-NCD urges the House of Representatives as early as possible in the second session of the Congress to join the Senate in adopting genetic antidiscrimination legislation.

Recommendations to the Department of Justice

Recommendation 2.6-NCD recommends that DOJ reactivate and support the work of the Interagency Disability Coordinating Committee, with a view to developing, publicizing, and implementing a cross-agency plan for the implementation and administration of Section 504 that will ensure clarity, consistency, and predictability for both individuals with disabilities and entities receiving federal financial assistance.

Recommendation 2.7-NCD recommends that, pending the full implementation of the Help America Vote Act, DOJ support the applicability of the ADA to the polling place and the voting booth by initiating cases or intervening in cases where reasonable measures on the part of state and local election officials could result in meaningful increases in the independent and accessible voting opportunities for Americans with disabilities.

Chapter Three
Education

Introduction

Discussion of the education of children and youth with disabilities involves the identification and integration of educational knowledge and practice, along with an understanding of issues, barriers, methods, and technologies that are of particular relevance to the education of students with disabilities. Thus, for example, as discussed in our previous reports,³⁷ provisions of the No Child Left Behind Act of 2002 (NCLB)³⁸ (which applies to all public schools and public school students across our nation) must be interpreted and applied in the context of special education. At the same time, the Individuals with Disabilities Education Act (IDEA) must be developed and applied in ways that are consistent with and complementary to NCLB, but that still recognize the issues and situations that IDEA and special education are intended to address. This chapter addresses some of the key issues currently raised by that intersection. It also discusses issues of higher education and of transition from school to adult life outside of education.

It looks at the forthcoming reauthorization of IDEA, coordination between IDEA and NCLB, higher education, and school-to-work transition.

IDEA Reauthorization

IDEA was scheduled for reauthorization last year, ordinarily an occasion for amending the law to reflect the issues and experience accrued during the period since the last reauthorization. Congress did not complete the reauthorization process in 2003, but instead extended the existing law for a year.³⁹ Meanwhile, the two houses have continued working on their respective versions of the reauthorization statute.

With a version of IDEA reauthorization legislation already passed by the House, and with the Senate's version⁴⁰ well along and awaiting action, NCD recognizes that this second session of the 108th Congress does not come to the issue of IDEA reauthorization with the same range of options and choices that would be available if legislation were being considered from scratch. There are a number of key differences between the House-passed bill and the version pending in the Senate. Whatever language the Senate eventually adopts, there will be opportunities for the conference committee to reconcile the House-Senate differences and attempt to craft new language that will satisfy both houses.

This being so, NCD wishes to direct the attention of the Senate and the House-Senate conferees to a number of key issues and to the impact that Congress's imminent decisions will have on the lives and destinies of students with disabilities, as well as for education as a whole. NCD therefore directs congressional attention to the following key issues.

Student Discipline

IDEA includes procedures for the discipline of students with disabilities receiving special education services. Perhaps because of the existence of these specific provisions, some people seem to believe that students with disabilities are somehow exempt from the normal rules of school discipline or, worse, from responsibility for the consequences of their actions.

In fact, as has been made clear by NCD in a number of reports, no such free pass exists. There is, of course, legitimate scope for debate over whether the disciplinary procedures specified for use under IDEA do or should differ from those in effect for school students generally, and if so, in what ways and to what extent. NCD believes that they do need to differ in certain key respects, and we believe there are strong reasons this remains so.

Addressing these questions, Congress should bear in mind the following points. All students have the right to an education, which means as a practical matter that they have the right to various educational and related services. No parents would be permitted to withdraw their child from school because of their determination that the child was incorrigible, uneducable, or unable to attend or learn. Yet some would argue that school districts should, in effect, be permitted to do so.

Because education is not something to which children somehow earn or forfeit a right, Congress should ensure that, when disciplinary considerations require the removal of students with disabilities from the mainstream, integrated classroom, such students are ensured the right to uninterrupted education, special education, and related services consistent with their Individualized Education Program (IEP) and with evolving assessments and needs in the most appropriate educational settings. In this way, no child will be left behind.

Full Funding

In previous reports NCD has advocated strongly for full funding of special education. NCD recognizes that in the current budgetary climate, significantly increasing the percentages of special education costs met out of federal funds is not realistically possible. NCD applauds the efforts made by Congress and the Administration to maximize funds for special education within current fiscal constraints.

But NCD also trusts that, were the fiscal situation different, congressional and Administration leaders would join with advocates in the belief that full funding (meaning approximately 40 percent of total special education expenses) is a desirable goal. Therefore, while continuing to maximize current funding, NCD recommends that Congress and the Administration undertake a study of possible methods and sources for increasing, over time, the level of federal participation in special education to 40 percent. Several potential sources are recommended for investigation in this regard. For instance, substantial savings are expected to accrue to the educational system through reduction of paperwork, elimination of reporting requirements, and other administrative reforms already embodied in NCLB and likely soon to be paralleled by reforms in the reauthorized IDEA. To the extent that the Administration and Congress are proved correct in their expectations for such savings, consideration might be given to earmarking some of these recovered resources for use in raising the federal participation rate in special education.

Accordingly, NCD recommends that Congress establish a commission to study the long-term costs of special education and to recommend strategies for ensuring the financial stability of state education agencies (SEAs) and local education agencies (LEAs) in meeting national educational goals for students with disabilities.

Due Process

Many people have expressed considerable concern about the role of parental due process as a cause of inadvertent delay or complication of the provision of special education services to students with disabilities. Some, including the President's National Commission on Excellence in Special Education report,⁴¹ have argued that the right to file administrative complaints or lawsuits has been abused, in part because of the law's provision for reimbursement of attorneys' fees to parents who prevail in their claims.⁴² Accordingly, many people have come to believe that, however we may favor measures to increase parental involvement in the educational process, the legal process is not an effective or appropriate tool for achieving such empowerment.

NCD believes that rather than focusing on real or presumed abuse demonstrated by isolated incidents or widely reported anecdotes, Congress should focus on the question of what means and resources are available to parents for providing input to schools about the services their children need and in seeking to find and develop the documentation necessary to bring those services to bear. Equally, from the standpoint of balance, no one has ever suggested that school districts should be denied access to legal counsel in even the most routine or trivial of matters, and no one has ever suggested that such counsel should not be fully compensated at prevailing rates for their work. Similarly, no one has ever suggested that school district determinations about the contents of students' IEPs are always correct or based strictly on educational, non-cost-related considerations. Given these indisputable facts, the question Congress must ask before it curtails parents' right to counsel is: How, in the absence of the right to retain counsel and prosecute appeals, can parents' input and parents' knowledge about their children be fully, clearly, and reliably reflected in school system IEP decisions?

In its last reauthorization of IDEA, Congress established procedures for limiting frivolous complaints and suits. It also established procedures for mediation and arbitration before the bringing of suit, as well as requirements of sufficient notice of pending complaints to give school officials ample time to review student records and modify their decisions before litigation begins.⁴³ In light of this background, NCD recommends that before the enactment of any further curbs or restrictions of a procedural or economic nature, Congress should fully review the impact and efficacy of these provisions. Under a legal framework that precludes the award of attorneys' fees to other than "prevailing parties," and in light of other legal developments since the last reauthorization of IDEA narrowing the definition of the term "prevailing party" for purposes of a variety of right-to-counsel laws, it seems improbable, indeed little short of incredible, that unmeritorious suits could in any way be motivated or fueled by attorneys' desires for fees or by parents' expectations of having nothing to lose if suit is filed.

If, after such an in-depth inquiry, Congress believes that the current level of IDEA due process litigation is injurious to the goals or the operation of the special education system, or that the educational resources soaked up by even meritorious litigation could be used more effectively in other pursuits, then Congress should authorize a controlled experiment to test what the effects of further restricting or completely eliminating parental appeals from school-district IEP decisions or IEP implementation practices would be. NCD would be happy to work with Congress in the design of such a study, which would invite school districts to offer themselves for controlled, empirical, outcomes-based research, as test sites for a detailed comparison between current and litigation-free special education environments.

Accordingly, NCD recommends that, because adequate data does not yet exist to justify the curtailment of parental due process rights in special education, Congress undertake definitive research that would provide empirical evidence on the subject of the impact of appeals and of attorneys on special education before further restricting family rights.

Textbook and Multimedia Accessibility

Essential to mainstream school participation is access to the curriculum and to the instructional media and technology that are central to education. For that reason, it is critically important that school technology and educational resources, including software, textbooks, and multimedia instructional materials used by students, are accessible to all students, including students with disabilities.

In the 2002 Progress Report, NCD recommended that the Department of Education (ED) take steps to adopt a national file format (NFF) to help ensure that access occurs. The NFF would specify certain technical standards, having nothing whatever to do with content, that textbook and other media producers and providers would have to meet in order to ensure that their products can be made accessible to students with a variety of disabilities. The NFF would also require that electronic files embodying these features be made appropriately available along with actual printed textbooks, videos, or other media.

NCD has questioned the approach adopted by ED for developing the NFF. The Department sought agreement on the appropriate technical standards among the textbook-publishing, educational, and disability communities through a voluntary and nonbinding standards-setting process. We had expressed concern that wholly voluntary, open-ended efforts might not be successful, because, though negotiating in total good faith, the needs and views of the key stakeholders might be too far apart to allow them to reach agreement.

Against this backdrop, we are gratified to report that developments of 2003 appear to have produced consensus recommendations and have garnered the support of the textbook-publishing industry for a set of voluntary standards that they can implement and that should go a long way toward meeting students' and educators' needs.⁴⁴

Voluntary standards will go only part of the way toward solving the problem, for they will not fully reconcile the numerous and inconsistent state requirements bearing on this issue, which have contributed substantially to the need and demand for a strong national standard in the first place. If the voluntary NFF is adopted, it will not necessarily supersede inconsistent or even conflicting state laws, and it will not by itself bring about the national standardization that is desirable.

Accordingly, NCD recommends that Congress, in its reauthorization of IDEA, include provisions calling for adoption of ED's consensus NFF (or, if a comment period reveals that this standard is unsatisfactory, then for development of another one) that would have to be met as a condition for textbook purchase. Congress should also adopt the provision in the Senate draft bill calling for the establishment of a national repository of computer files so that books can effectively and promptly be made available to those schools and students that need them in accessible formats.⁴⁵

Coordination of IDEA and NCLB

If IDEA is to be effective and if it is to achieve consistency with national educational principles and goals, IDEA must be written and interpreted with NCLB in mind. NCD commends ED