National Disability Policy: A Progress
Report
December 2001-December 2002
July 26, 2003
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
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Publication date: July 26, 2003
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The views contained in this report do not necessarily represent those of the Administration as this and
all NCD reports are not subject to the A-19 Executive Branch review process.
Letter of Transmittal
July 26, 2003
The President
The White House
Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD), it is my duty and honor to submit NCD's National Disability Policy: A Progress Report, as required by Section 401 (b)(1) of the Rehabilitation Act of 1973, as amended.
This report covers the period from December 2001 through December 2002. It reviews federal policy activities by issue areas, noting progress where it has occurred and making further recommendations where necessary to the executive and legislative branches of the Federal Government.
As noted in the report, NCD has observed many examples of progress in disability policy. Among these are enactment of the Help America Vote Act for increasing access to elections for Americans with disabilities; establishment of the Presidential Commission on Mental Health to examine and recommend changes in our nation's mental health system; and the Supreme Court's ban on execution of persons with mental retardation.
Despite reforms in disability policy which are intended to improve the lives of people with disabilities, many challenges remain for our citizens who are living with disabilities and who wish to be more independent, more productive and more engaged in their families and communities. Far too many Americans with disabilities are undereducated and unemployed. Many of them are desperately trying to improve the quality of their lives, but they are frustrated by a lack of affordable accessible housing, transportation, personal assistance services, medical rehabilitation and job opportunities. NCD will continue to develop policy recommendations to address these issues.
The Administration's New Freedom Initiative provides a road map to increase investment in and access to assistive technologies and a high-quality education, and to help integrate Americans with disabilities into the workforce and into community life. NCD will continue to work with the Administration and Congress to ensure that every individual with a disability has access to the American dream.
In the past year, NCD has undertaken and completed a number of projects that support the New Freedom Initiative and that respond to NCD's statutory mission. In particular, NCD has completed a series of policy evaluations and evidence-based studies that are intended to measure progress toward implementation of the Americans with Disabilities Act.
NCD encourages all government agencies and Congress to use our work as a reference point and source of data for recommendations, and as a basis for further examination of issues that impact the lives of people with disabilities. NCD stands ready to work with the Administration, Congress and the public to ensure that public policy is shaped in a manner that will provide the greatest possible opportunities for people with disabilities as they strive to be fully productive, contributing citizens.
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, Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, 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, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Acknowledgment
The National Council on Disability wishes to express its appreciation to Steven Mendelsohn for drafting this document.
CONTENTS
Executive Summary
PART I
PART II
APPENDIX
EXECUTIVE SUMMARY
The National Council on Disability (NCD) is charged with preparing an annual status report to the President and Congress. In this annual report covering the year 2002, we survey major legal and policy developments over the past year. The report identifies both the progress and deterioration in the conditions faced by Americans with disabilities and in their opportunities for full participation in society.
Based on what has happened, the report analyzes major issues likely to be confronted in the coming year, and makes recommendations for legal and policy measures and for research that we believe would contribute to the achievement of America's widely shared goals, including those of the President's New Freedom Initiative (NFI).
Whether in connection with education, employment, health care or independent living, we find legal and policy discussion to be informed by six recurrent themes: the mainstreaming of disability issues (convergence of disability policy and other issues in ways that no longer allow disability policy to be considered in isolation); the rise of the technical assistance model (involving reliance on education and information as the primary means of achieving civil rights compliance, to the relative or even total exclusion of traditional enforcement); evidence-based decisionmaking (reflecting the need for statistical data in evaluating all programs and activities); cost-effectiveness (embodying the notion that economic impact on a variety of parties should be a primary determinant of program value, even in civil rights or social policy areas); intergovernmental coordination (the recognition that all important objectives cut across program and agency lines); and budgetary constraint (the realization that for the foreseeable future federal and state spending must be sharply curtailed).
NCD's 2002 Progress Report contains the following major findings and recommendations:
Disability Statistics and Research
Findings-The measures taken over the past year to improve the relevance and reliability of disability data utilized and disseminated by the Federal Government are encouraging. The report finds that existing cost-benefit assessment research models do not take a number of key factors sufficiently into account, including economic benefits to individuals, nonmonetary costs and benefits, and the net results, particularly over the longer term, of cross-agency cost-shifting. The report finds that no widely accepted methodologies exist for reliably measuring the full impact of accessibility policies on the out-of-pocket and transfer payment costs associated with disability, and on the economic gains associated with enhanced opportunity that accessible architecture, transportation and communications afford.
Recommendations-High-quality research yielding reliable demographic and economic data needs to be a central priority of the NFI, not as an alternative to action but as a guiding force for the major policy changes already under way. People with disabilities should be given expanded opportunities for input into the research agenda. Data elements used in "scoring" legislative proposals for their fiscal impact should be expanded, and new techniques for measuring tangible and intangible impacts of programs and expenditures should be developed.
Civil Rights
Findings-The greatest achievement of the year was the inclusion of access to the polls and of a secret ballot for people with disabilities in the new national voting legislation. In other areas such as judicial interpretation of the Americans with Disabilities Act (ADA), the past year has brought further losses and narrowing of civil rights. Among other things, in the past year the Supreme Court has created a new defense (threat-to-self) that employers can use to avoid the employment-related requirements of ADA. The Supreme Court has also ruled that even where reasonable obligations in employment are required, any seniority system can take precedence, so far as job assignments are concerned, if workers without disabilities relied upon it for their expectations of work. We note the general pattern of decisions stripping individuals of the right to privately enforce ADA and other civil rights laws.
Recommendations-We applaud the new national voting legislation and note that implementation of the law will depend upon the financial resources and the level of commitment that follow. In relation to the Supreme Court's recent and negative impact on ADA, NCD recommends that the Federal Government, as increasingly the only entity with the power to enforce the law and vindicate individual rights, must incorporate vigorous enforcement into a broad-based strategy that includes education and technical assistance but does not shrink from enforcement in those cases where noncompliance arises from more than lack of information. In a related connection, because the administration has begun to vet proposed social policy and even civil rights regulations by their projected economic impact on small business and other entities, NCD recommends that the administration clarify the role of such potential costs in the area of civil rights. Existing defenses in ADA and other laws are adequate to prevent undue expense to any particular entity.
Education
Findings-Written against the backdrop of historic change in the nation's education system. The chapter begins with lengthy analyses of the No Child Left Behind Act (NCLB) as it bears upon students with disabilities, and of the report of the National Commission on Excellence in Special Education. With reauthorization of the Individuals with Disabilities Education Act (IDEA) scheduled for 2003, these analyses highlight areas in which NCLB and the report either fail to address issues of great concern to students with disabilities or recommend policies (such as restriction of parental due process rights and after-the-fact evaluation of individualized education plans) that we believe threaten the ability of IDEA to continue as an effective tool for preparing students with disabilities in mainstream settings for full participation in society as adults.
Recommendations-IDEA reauthorization should be designed to achieve an effective synthesis of the old and the new and include input to Congress from a broad range of voices including students and former students with disabilities who have benefitted from due process and other controversial procedures surrounding the individualized education plan process; unambiguous requirements for nondiscrimination by school choice; private and charter schools that receive federal education funding; elimination of barriers to the ability of funds to follow students; and clarification of exactly how new testing regimens can effectively and fairly recognize the role of reasonable accommodations for students with disabilities.
Health Care
Findings-Addresses what is perhaps the most tumultuous area of national social and economic policy. The report also examines the implications for people with disabilities of drastic cutbacks of Medicaid by the states, including the implications of such cuts for implementation of the work incentive provisions of the Ticket to Work program. We reiterate basic recommendations for how systemic health-care reform can be done in ways that ensure equal access to persons with disabilities, noting for example the need for Medicare prescription drug legislation to bear in mind the inclusion under Medicaid of many people with disabilities under the age of 65, often with unique, highly individualized needs.
Recommendations-NCD offers basic recommendations for how systemic health-care reform can be done in ways that ensure equal access to persons with disabilities, noting for example the need for Medicare prescription drug legislation to bear in mind the inclusion under Medicaid of many people with disabilities under the age of 65, often with unique, highly individualized needs. NCD also recommends that the severity of this risk be urgently investigated and that Congress consider a number of measures for preventing its occurrence.
Long-Term Services and Supports
Findings-Concentrates on the crisis in long-term care facing our nation as the population with disabilities grows and converges with the rapidly increasing demographic composed of older persons. Taking the Supreme Court's Olmstead decision and the President's NFI as its point of departure, the chapter describes a variety of cross-programmatic, multi-agency and intergovernmental coordination issues that must be confronted if the goal of minimizing unnecessary and costly institutionalization is to be achieved. These issues include funding for personal assistance services in the home but extend far beyond this to include transportation, housing, assistive technology and others. We find that mechanisms for achieving the requisite coordination do not now exist, or if they exist are not widely in use. A high-level planning mechanism is needed for coordinating and for ensuring accountability in the Olmstead-related activities of a number of federal agencies and programs.
Recommendations-NCD recommends that the Office of Management and Budget and the Congressional Budget Office work together to develop new accounting techniques for scoring the overall effects of multi-agency, cross-programmatic initiatives such as Olmstead. Because the effective provision of home- and community-based alternatives to nursing homes for America's at-risk citizens will ultimately require the full partnership of the public and private sectors, NCD also recommends that Congress hold hearings on a range of possible incentives for creation of long-term care insurance coverage from the private sector that will be oriented toward facilitating community living rather than institutional care.
Youth
Findings-Focuses on programs designed specifically to affect youth and on the importance of input to policy from youth on programs that affect their lives. First the report considers school-to-work transition. Effective transition has been frustratingly elusive for many years. This year, the simultaneous reauthorization of IDEA and the Federal Rehabilitation Act creates the unique opportunity to incorporate the identical transition language in each law. In this way, disputes and cost-shifting over transition between these two service systems based on variations in their governing laws can be eliminated.
Recommendations-Recommendations are also made for cross-budgeting experiments whereby transition services would be funded by grants or appropriations to education-rehabilitation partnerships, with availability of continued funding and accountability jointly and inseparably borne by both.
Employment
Findings-Begins with a discussion of experience during the first year of implementation of the Ticket to Work and Work Incentives Improvement Act (TTWWIIA). NCD notes certain concerns revealed by reported first-year experiences, including inconsistencies between the Act and the underlying Social Security Act that create interpretive uncertainties, and provisions of the Ticket to Work program that in themselves are so complex that they may prevent individuals with disabilities from having the confidence needed to enter employment. Of equal concern, NCD finds that the type of Medicaid cutbacks being pursued by many states (including curtailment of the discretionary Medicaid buy-in programs that were established under the Ticket law to enable Social Security Income recipients to retain health insurance benefits after returning to work) may seriously thwart the efficacy of the new law.
Recommendations-NCD recommends that the Administration and Congress speedily address the question of whether Medicaid cuts are jeopardizing the success of work incentive provisions in TTWWIIA aimed at preserving health insurance for Medicaid recipients who return to work, and if so to devise means for states to fully participate. The forthcoming reauthorization of the Rehabilitation Act is also important, and NCD recommends that Congress address the role of labor market and other pertinent data in the operation of the federal-state vocational rehabilitation system for individuals with disabilities. We also recommend that Congress enact provisions ensuring that relevant and systematically obtained labor market data will be used by the vocational rehabilitation system in determining the training, placement and service priorities these agencies pursue.
Welfare Reform
Findings-Addresses issues raised by the forthcoming reauthorization of the welfare reform legislation of 1996. New restrictions on the permissibility of rehabilitation services for meeting work requirements have been proposed by the administration. NCD expresses concern that these will leave inadequate time for recipients with disabilities to obtain the services they need to enter or return to work. NCD is likewise concerned that recipients with disabilities or recipients with caregiver responsibilities for people with disabilities will be penalized by loss of benefits for failure to find work, but that in many cases this failure will be the result, not of any lack of effort or motivation on their part, but of the unavailability of support services, assistive technology, accessible transportation or specialized childcare resources that they need.
Recommendations-NCD makes recommendations for addressing these needs (including the need for mandatory linkages between welfare reform and vocational rehabilitation agencies), as well as for addressing the long-term health insurance needs of those who because of illness or disability are uninsurable in the private sector. Finally, because there are some people who, whether or not eligible for Temporary Assistance for Needy Families, may qualify for Social Security Disability Insurance or Supplemental Security Income (SSI), NCD recommends review of all potentially relevant cases for these programs before cessation of benefits occurs.
Housing
Findings-Concerns itself primarily with the draft five-year strategic plan issued by the Department of Housing and Urban Development (HUD) in November 2002. While expressing its continuing appreciation for HUD's responsiveness to NCD recommendations and its openness to dialog on these recommendations, the report finds serious shortcomings in the plan, especially in its failure to deal with key housing accessibility and affordability issues and in its apparent lack of analysis concerning some of the disability-related issues that it does address. NCD calls upon HUD to develop clear and precise plans for gathering baseline data, evaluating obstacles and postulating numerical and qualitative goals for accessible and affordable housing in this country.
Recommendations-NCD suggests the need to establish goals of national policy. It should be the goal of national policy to so enhance the amount, variety and dissemination of accessible housing as to minimize or eliminate the disparities in cost and supply currently faced by people with disabilities or by people who wish to make their homes welcoming to people with disabilities. More broadly, the report suggests that HUD needs to adopt a longer-term vision that addresses the accessible housing needs of an aging population over the next generation and that reflects some attempts to begin a national dialog over where the impetus and resources for the creation of the necessary housing stock can be found.
Transportation
Findings-Notes the profound changes in air transportation that have continued during the past year and congratulates the Transportation Security Administration for its attention to disability issues and outreach to travelers with disabilities. Concerns continue to be expressed about the availability of services and accommodations in airports during embarkation and disembarkation phases of trips.
Recommendations-NCD recommends that the Department of Transportation clarify the allocation of responsibility among carriers, airport operators and contract services providers for a variety of services and accommodations. Because changes in technology also require updated interpretation of the Air Carrier Access Act and new assessments of the relationship between its and ADA's jurisdiction, NCD recommends that the Departments of Justice and Transportation clarify which law applies to the accessibility of airport ticketing machines and other technological enhancements. In terms of heightened security issues, the report makes a number of recommendations aimed at ensuring that transportation-system safety and accessibility concerns of persons with disabilities will be covered by the transportation legislation and not left solely to ADA. With our growing recognition of the role played by accessibility and by pedestrian safety in the ability of people with disabilities to live in their communities safely and independently, NCD also recommends that the reauthorization of the Transportation Act strengthen the resources available for, and the requirements applicable to, incorporation of these principles and of suitable consumer input into the design of all federally supported transit projects and into the design of projects that will utilize transit as part of their infrastructure.
Assistive Technology and Telecommunications
Findings-Briefly reviews the role of assistive technology under the NFI. Progress under Section 508 of the Rehabilitation Act was reviewed, a year and a half after it went into effect. Major progress is visible in a number of areas, particularly in the consciousness of Web accessibility issues. But problems have emerged, including delays in implementation of certain provisions and a continuing failure to collect key data that would shed light on the efficacy of the law. With Section 508 due for reauthorization as part of the Rehabilitation Act this year, the Department of Justice's biannual report on Section 508 to the President and Congress, also due this year, is particularly timely. NCD also notes that the E-Government Act represents a watershed in federal information management, providing an important endorsement for the principles of Section 508. Finally, NCD addresses the Federal Communications Commission (FCC), one of the most important federal agencies for people with disabilities. Its role and activities in telecommunications accessibility, hearing aid and cell phone compatibility, accessibility of computer networks in schools and libraries, and other areas are discussed. NCD notes a perceived lack of movement on the FCC's part regarding disability civil rights issues and community fears that regulatory reform will be used to curtail existing protections. Recommendations are made for a major change of direction on the FCC's part, including the following: that the FCC reaffirm its commitment to the principle that economic deregulation and civil rights enforcement are separate issues; that the FCC rethink its apparent inclination to reduce the scope of telecommunications access rights under Section 255 of the Telecommunications Act; and that the FCC complete action to require that schools and libraries receiving telecommunications subsidies under the E-Rate program ensure the accessibility of the technology and services they offer.
Recommendations-On the basis of its review of the role of assistive technology under the NFI, the report makes bold recommendations for research, not on the barriers to technology access embodied in current law, but on the potential benefits to society that could realistically be expected to result over measurable periods from intensive utilization of assistive and accessible technology. In terms of Section 508, NCD recommends that the Department of Justice expand the scope of its report to provide Congress and the Administration with more of the crucial information they will need. In terms of the FCC, NCD makes the following recommendations for a major change of direction on the FCC's part: that the FCC reaffirm its commitment to the principle that economic deregulation and civil rights enforcement are separate issues; that the FCC rethink its apparent inclination to reduce the scope of telecommunications access rights under Section 255 of the Telecommunications Act; and that the FCC complete action to require that schools and libraries receiving telecommunications subsidies under the E-Rate program ensure the accessibility of the technology and services they offer.
International Issues
Findings-Begins with the crucial recollection that in matters of disability rights as much as in other spheres, our connection with and impact upon the rest of the world is complex and growing, but that in this area perhaps more than in any other it is our example and leadership that account for our influence. While we have many ways of influencing other countries for good, it has primarily been through the respect they garnered that our disability rights laws have had such a profound effect as models in many countries.
Recommendations-The report also notes the long-standing role of the NCD in advising the State Department on international policy issues. On this basis, the report emphasizes the importance of including people with disabilities, and their insights and concerns, in our international development programs. Beyond this, the existence of legal requirements for such incorporation is noted. In the area of international treaties, support is expressed for the UN Convention on the Rights of Persons with Disabilities, and strong U.S. support is urged.
Homeland Security
Findings-Concerns itself with the implications for disability civil rights of the amalgamation of many diverse agencies and programs into the new department. The decisions this department makes, the priority it accords to civil rights and the methods it adopts to ensure uniformity in the ways agencies handle their disability-related responsibilities are likely to be established in the early days and be difficult to change if not set on the right course at the outset. NCD offers its assistance in helping the department to establish policies and practices in these areas.
Recommendations-Emergency preparedness planning around the country presents many issues relating to the inclusion of people with disabilities. All too often a sense of urgency leads to the legitimate concerns of this sector of the population being swept aside. Yet in areas ranging from the accessibility of emergency information to the evacuation plans for high-rise buildings, great urgency surrounds the need for preparedness planning to be done inclusively. The report cannot make detailed recommendations, given the variety of issues already brought to our attention. Instead, we give several examples of effective planning and strive to create awareness and discussion of the issues, as part of the evolving national response to the threats that all too tragically characterize our age.
PART I
Introduction: Major Trends
This annual progress report deals with many issues, programs and laws. While each of these are addressed with specificity, the overarching patterns and general trends that link them together must also be identified. This introduction therefore describes these recurrent themes or major trends, in order to create a framework for the discussion that follows in the next 13 chapters.
1. THE MAINSTREAMING OF DISABILITY ISSUES
One pattern evident for some time became even more noticeable and important this year. Increasingly, issues of disability policy cannot be confronted in isolation from a host of questions facing the entire society. The growing interaction among disability and other public policy concerns results in part from fuller participation of Americans with disabilities in mainstream institutions, but this interconnectedness of issues creates complications unknown to policymakers and advocates of an earlier day.
Two examples from 2002 legal developments illustrate this point. First, Supreme Court decisions that restrict the right of people with disabilities to enforce the Americans with Disabilities Act (ADA) by suits against state government are based on the Court's interpretation of the Eleventh Amendment to the Constitution. As such, these decisions arise from a jurisprudence that affects the enforceability of many federal laws, including but hardly limited to those establishing civil rights for people with disabilities. Their impact on people with disabilities being only one illustration, these decisions may have far-reaching consequences in redefining the understanding of federalism in our nation.
Second, debate over the forthcoming reauthorization of the Individuals with Disabilities Education Act (IDEA) cannot be conducted without reference to the broad-based educational goals and policies of our nation, as recently embodied in the No Child Left Behind Act (NCLB). Nor can IDEA be amended without attention to likely developments in the areas of school choice and state autonomy, which affect all of America's children.
Through convergence of a number of legal requirements and social trends, services of all kinds are being provided in integrated environments, from the public school to the managed care organization. As a result, decisions about how and what services should be provided to people with disabilities could not be made without reference to the overall structure of these programs. Equally, decisions about the operation of these programs and services can no longer be made without reference to the fact that people with disabilities will be using them.
Technology has also contributed significantly to merging mainstream and disability concerns. Under these conditions, where entities and institutions that care or know little about disability are nevertheless obliged to take it into account in their decisionmaking, and in an environment where even decisions bearing specifically on people with disabilities often have major and far-flung implications, we can hardly be surprised at the growing politicization of disability policy issues and rights.
2. THE RISE OF TECHNICAL ASSISTANCE
Over recent years, the Federal Government has placed increasing reliance on technical assistance as the means for increasing participation in mainstream society for people with disabilities, and as the means for enabling a variety of institutions and entities to accommodate these citizens.
The Administration has emphasized technical assistance and provision of informational and educational resources for people with disabilities and for the public at large. Recent examples of this approach include the New Freedom Initiative's (NFI) emphasis on coordinated, interagency strategies; establishing and strengthening disability-oriented offices within the Department of Labor and the Department of Health and Human Services (HHS); and creation of centralized informational Web sites such as http://www.disabilityinfo.gov and http://www.firstgov.gov.
Productive as these efforts are, they can all too easily be seen as an alternative, rather than an adjunct, to civil rights enforcement. A series of civil rights monitoring reports issued by the National Council on Disability (NCD) over the past three years have documented persistent failures of civil rights enforcement by administrations of both parties. This year, a 10-year retrospective study by the U.S. Commission on Civil Rights put these issues in a broader context.1 While education and information are invaluable in facilitating responsible behavior by most people, the inescapable truth remains that in some instances, only requirements of the law,
enforceable when not voluntarily complied with, can bring about nondiscriminatory and inclusive practices. As we have learned in so many other areas of life, without meaningful legal sanctions, all too many people will fail to uphold the standards society expects, no matter how often or how well they are informed of those expectations. The test for public policy is to develop methods that strike a correct balance between enforcement and technical assistance.
3. EVIDENCE-BASED DECISIONMAKING
Society has often made its most fundamental decisions on the basis of faith or of shared values that neither require nor admit of empirical verification. For example, we differ not on whether people with disabilities should be educated, empowered to work and assisted to live productive lives, but on what the best methods are for bringing these goals about. In choosing among policy options, evidence (including statistical data) is becoming increasingly important, both as tools for defining issues and as a means for evaluating the efficacy of various strategies.
The growing reliance on evidence makes sense, but only to the extent that data are correct and actually prove what they purport to show. Where decisions about issues ranging from the value of medical technology to the effectiveness of educational interventions are made on the basis of statistical data, great sensitivity in formulating research designs will be required if accurate data are to be mined.
A classic example relates to the phenomenon of "abandonment" of assistive technology (AT) by persons with disabilities. Research has been cited for having disclosed high rates of abandonment,2 but unless these findings are further analyzed they can be seriously misleading. In what proportion of instances is this so-called abandonment in fact the result of a change in disability status, perhaps even medical recovery? What proportion can be attributed to the user's changing job requirements or personal circumstances, to a failure to prescribe the correct device to begin with, or to a lack of training and technical support in the use of the equipment? To what extent should the useful life of assistive devices be compared with the life cycle for other devices used by people without disabilities? Until or unless questions such as these are answered, the stark notion of abandonment will remain more emotionally evocative than pragmatically useful.
4. COST-BENEFIT ANALYSIS
An increasingly important branch of evidence-based policymaking is the use of cost-benefit analysis to evaluate various laws and practices. Several factors differentiate recent approaches to such analysis from those traditionally used by Congress to estimate the impact of proposed legislation.
Too often only those costs and benefits that can be readily aggregated are considered. Thus, if a proposed regulation (including potentially a civil rights regulation) potentially imposes financial costs on government or private entities, data concerning the extent of such costs would quickly be made available by the affected parties.
In an effort to minimize the burdens borne by small entities, regulatory flexibility and other impact statements are now required in a number of areas that might traditionally have been judged on other grounds. For example, civil rights have long been thought too important to rise or fall on cost alone, particularly when the methodology for deriving such estimates is often unverifiable and where no parallel resources exist for measuring the economic benefits. If cost-benefit analysis is to emerge as a reliable source of information, its methodology, its fairness and its balance must be greatly improved.
5. INTERGOVERNMENTAL COORDINATION
A corollary to the increasing complexity of policymaking is the involvement of a growing number of partners in implementation of any major public policy initiatives. As an interagency, cross-governmental undertaking, the NFI powerfully demonstrates this point.
Yet as our need for coordination grows, our tools for achieving it remain inadequate. From the standpoint of planning, budgeting, implementing and evaluating programs in the disability policy arena, we continue to rely on narrowly targeted programs that operate within limited jurisdictions in attempting to address problems that transcend and confound traditional jurisdictional lines or statutory demarcations.
Means must be found for making and carrying out policy that are equal in scope to the problems being addressed or the goals being pursued. The year 2003 offers a unique opportunity for beginning this new era in policymaking. Several major disability-related laws, including IDEA, Temporary Assistance for Needy Families (TANF), Transportation Equity Act for the 21st Century (TEA-21), Head Start, the Higher Education Act, the Rehabilitation Act and the Assistive Technology Act all are due for reauthorization this year. Never in recent history have so many seminal and closely intertwined programs been on the congressional agenda at the same time. The opportunity for thoroughgoing coordination and for creating a cohesive approach that this coincidence of timing offers must not be missed.
6. BUDGETARY CONSTRAINT
For the foreseeable future, what is termed discretionary spending at federal and state levels is likely to be under severe pressure. While new categories of spending at the federal level, including homeland security, make it difficult to determine whether or not what is called discretionary domestic spending has risen, fallen or remained flat, as far as the concerns and priorities of the disability community are concerned, a growing number of policymakers are coming to view these concerns as necessarily subordinate to other costs. As such, even investments in infrastructure or civil rights enforcement may be viewed as among the most discretionary of discretionary costs.
Reflexive budget cutting, though an understandable reaction to short-term crises, is all too likely under current circumstances, particularly at the state level. Under such circumstances, the demand for hard choices and for the establishment of priorities can all too easily be taken as nothing more than the special pleading of another interest group.
But public officials, however beleaguered, cannot be allowed to evade responsibility for the long-term implications of their decisions.
Disability Statistics and Research
1. STATISTICS
In today's evidence-based policy environment, the ways that disability-related data are collected and used have come under growing scrutiny. In our 2000-2001 annual progress report,3 NCD detailed concerns about employment data in particular and expressed the twin hopes that methods for its collection are improved and that existing suspect data not be disseminated under government aegis. The report offered recommendations for developing effective data-gathering tools and techniques.
Spearheaded by the Bureau of the Census and the Bureau of Labor Statistics, work has continued on the perfection of questions and methodology, but as of this writing the results of these efforts have not yet been presented. NCD continues to offer its assistance in evaluating proposals, in bringing persons with disabilities into the process and in field-testing new questions and techniques. We note that with the inclusion of disability-demographics questions in the March Supplement to the Census Bureau's Current Population Series survey, new urgency and opportunity attach to this effort.
Because of the critical need for reliable and comprehensive Census data regarding individuals with disabilities, NCD recommends that Congress legislatively require an official and accurate enumeration of Americans with disabilities through the decennial census, as well as through related national census-like efforts (e.g., American Community Survey).
Nor is employment policy the only area in which statistics and evidence-based decisionmaking are coming to play a larger role. An increasing number of government agencies are now involved in the disability data collection process and in making decisions predicated upon assumptions regarding the number and status of Americans with disabilities. From the Centers for Disease Control and Prevention (through its Healthy People 2010 initiative and its state-by-state disability prevalence studies),4 to the Food and Drug Administration (through its role in evaluating high- and low-incidence medical devices),5 the venues and complexity of decisionmaking and priority-setting demand quality data as they never have before.
Because of the variety of entities and data sources involved, NCD recommends that the NFI should make improvement of data collection a high priority.
2. RESEARCH
(a) THE RESEARCH AGENDA
In its reports over the years, NCD has consistently advocated for a broad-based research agenda. In this connection, we wish to acknowledge the work of the Interagency Subcommittee on Disability Statistics (ISDS) and its parent Interagency Committee on Disability Research (ICDR). Given the potentially enormous range of issues worthy of statistical and analytical research, NCD recommends that these entities seek input from the disability community regarding their most pressing concerns.
NCD also recommends that the new International Classification of Function (ICF) (discussed at the ISDS meeting of December 11, 2002)6 be evaluated for its applicability to laws and programs in the United States, and for its potential impact on the disability research agenda. ICF's approach suggests the need for wholly new types of research. Adoption by much of the world of the ICF signals a turning away from organic- or deficit-based models of disability in favor of models of function that link the individual and the environment in new and direct ways, that in effect allow the presence and extent of a disability to be determined by the nature of the physical, communication or social environment in which the individual functions.
Such a model holds out intriguing and compelling possibilities. By way of disease prevention, it suggests the need to go beyond the traditional boundaries of causation and treatment that are considered medical, and to examine a variety of interactions between individual, environment and community in order to better understand means for enhancing function and participation. Similarly, in areas such as rehabilitation, education and employment, adoption of the ICF approach suggests the need to include research not only into how to make various environments more accessible to people with disabilities, but also into how the functional and benefits and other results of such environmental modifications can be identified and measured. Researchers will, however, need to ensure that ICF items are valid, reliable and useful to policymakers and researchers.
Research into the measurable impact of environmental modifications on the economic and opportunity costs of disability is therefore warranted. Put broadly, the disability research agenda needs to include systematic assessment of the cost-benefit equation attaching to universal design in various settings.
Particularly when linked to the aging of the population, such research could help establish the business case for accessible design in a number of product areas. Yet industry cannot necessarily be expected to conduct such research on its own.
To help fill this need, NCD is undertaking research into barriers to and costs associated with universal design,7 but models for capturing the long-term benefits of such practices do not yet command broad-based consensus. For example, it is plausible that if all the homes in which a population of senior citizens lived were equipped with certain accessibility and safety features (e.g., nonslip flooring surfaces and bathtub grab bars), significant reductions in hospital costs attributable to falls might be achieved, or admission to nursing homes delayed. As one small study has already found, provision of accessible telephone equipment to a sample of people with disabilities could result in increased telephone usage of sufficient scope to yield revenues to the carrier exceeding the costs of the AT.8
Accordingly, NCD recommends that in prioritizing disability research the Administration also fundamentally assess current research agendas to make sure that the potential benefits of a wide variety of environmental and community-design strategies can be fully taken into account in the formulation of public policy, and to ensure that suitable methodologies for gathering such information are developed and validated.
(b) QUALITY OF LIFE
If data from various sources can be combined in ways that show new relationships among various demographic, social and economic findings, important new insights into the comparative quality of life for people with and without disabilities can begin to emerge. Preliminary analysis of several data sets in conjunction has begun to yield some provocative evidence of clustering, which begins to shed new light on the relationships between location, age, disability, employment and education, and which demands further attention.
In deriving these data, NCD looked to several national-level sets of data for some quality-of-life indicators for Americans with disabilities, such as the Census 2000 data system and the special education child count data system. Specifically, NCD looked at the Census 2000 Summary File 3 (SF3), which incorporates a set of products that include disability data involving detailed tables, quick tables and thematic maps. For detailed tables available from SF3, "disability" is reported by age, sex, employment status and poverty in the detailed tables labeled P40-P41, P119-P126 and PCT26-PCT34.
The thematic maps, available from SF3, display population density data with a color scheme representing the percentage of persons with a disability within three specific age groups. According to the SF3 tables, nationally, 17.6 percent of Americans with disabilities live at or below the poverty level, while 10.6 percent of Americans without disabilities live at or below that level. This national average may obscure even greater disparities from state to state. According to the SF3 tables, when looking state by state, poverty estimates for Americans with disabilities range from 11.6 percent to 25.1 percent.
According to the SF3 detailed tables, nationally, 43.4 percent of Americans with disabilities ages 21-64 were identified as "not employed," while only 22.8 percent of Americans without disabilities (approximately half as many) were identified as not employed. In the 41 states whose data were included in the SF3 flow of information for this table, the percentage of Americans with disabilities identified as "not employed" ranged from 35.0 to 59.6 percent.
When the state-by-state poverty and the not-employed data are plotted on a map, a visual inspection reveals (a) a clustering of southeastern states whose average poverty rates among Americans with disabilities exceeds the national average and (b) a clustering of southeastern states whose average not-employed rate exceeds the national average.
Turning to the education data, the 23rd Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (2002) provides another national data system for consideration. Table AD1, in particular, provides outcome indicators for "Basis of exiting" from special education. An analysis of the data related to the indicator referred to as "dropped out" was reviewed. It shows that state-by-state dropout rates also vary widely, ranging from 4.5 percent to 28.2 percent. In addition, Table I-2 reports that the dropout rates for students age 14 and older with disabilities by race and ethnicity were 44.0 percent for American Indians/Alaskan Natives, 18.8 percent for Asian/Pacific Islanders, 33.7 percent for African Americans, 32.3 percent for Hispanic Americans and 26.9 percent for Caucasians.
Available data highlight the persistence of higher poverty rates among persons with disabilities than among the general public in all three major age groupings-children up to age 16, working ages 16-64 and senior citizens 65 and over.9 Among persons with disabilities of working age, some would regard the higher incidence of poverty as no mystery, given the statistical correlations between poverty and such variables as higher levels of unemployment and unmarried status and lower levels of educational attainment, all of which characterize the disability demographic and are generally associated with poverty.
But whether these variables entirely account for the poverty level, let alone what accounts for these underlying differences, remains far from certain.
If data were adjusted to control for the statistical significance of the four variables of age, employment status, marital status and educational level, would people with disabilities still be poorer than other Americans? If so, their possession of less discretionary income and resources (including limitations imposed on their resources by various means-tested public programs aimed at helping people with disabilities enter or return to work) could be a factor in explaining why. Hence one potentially fruitful direction for further research into the causes of lesser economic attainment by persons with disabilities is the uncompensated costs of living with a disability. NCD recommends that research into these costs of living with a disability should likewise be made part of the national agenda, with a view both to documenting their nature and extent and to determining whether out-of-pocket costs of disability (such as the need for various forms of personal assistance) could be reduced by changes in the design of products, environments or communities.
3. SCORING
The point at which statistics and research bear practical fruit is in the cost estimates and related analyses of proposed federal legislation carried out by the Congressional Budget Office (CBO). In the nearly 30 years since its creation, the CBO has earned a reputation for nonpartisanship and objectivity. While the quality of CBO's work is unquestioned, the adequacy of the statutory framework governing its evaluation of certain disability policy proposals may be open to question.
Three basic problems must be noted here. First, many of the benefits of full participation in society are intangible. They cannot be measured in dollars cost or saved, nor should they be, any more than the costs of national defense or of civil rights.
In this connection, even when economic impact data may exist, people with disabilities are not "private entities" of the sort about which economic impact data can readily be collected. Many of the practical benefits foreseen for disability-related proposals appear all too conjectural under the microscope of current analytical techniques. Costs and benefits to government, industry and other identifiable institutions, not to individuals, inevitably take center stage in any cost-benefit analysis, including many of those conducted by the CBO, which, like any other scoring agency, can utilize only the criteria established by law and the data available.
The second major problem with scoring has to do with when programs are scored. Once a program or service system is in place, occasion does not ordinarily arise for formally re-evaluating its costs and benefits unless amendments are proposed, Government Accounting Office (GAO) studies are conducted or special commissions are appointed. Thus, potentially ineffective or even destructive policies, such as those which in the aggregate are believed to direct a far higher proportion of resources to institutional care than to community- and home-based services, escape the opprobrium they deserve.
Third and finally, many measures in disability policy are likely to have positive revenue implications for government, but these measures are achievable only after a number of years and only through increased up-front expenditure. Too often, the existence of a long timeframe is confused in the public mind with the hypothetical or conjectural nature of the benefits to be achieved in the future. Equally problematic, the budget process does not create opportunity or incentive for one agency or program to incur expenses today so that another can reap greater savings tomorrow.
For all these reasons, NCD recommends that the CBO undertake a review of these issues, including the extent to which it can seek input directly from individuals with disabilities on issues of concern to their lives, the extent to which nonfiscal impacts can be captured by existing scoring assumptions and methodologies, the feasibility of rescoring selected existing programs where appropriate, and the capacity of current techniques to reliably take longer-term forecasts and extrapolations and cross-agency budget relationships into account. The CBO should report to Congress and to the nation on its findings at the earliest possible time, and should be given the resources needed to gather the expertise it will need to authoritatively answer these key questions in forming public policy.
Civil Rights
1. ADA
(a) THE COURTS
In a series of papers this year entitled "Righting the ADA,"10 NCD has continued to report on a succession of Supreme Court decisions narrowing the rights of citizens with disabilities under ADA. In 2002, the cavalcade of anti-ability rights decisions reviewed in last year's report has been joined by rulings
- barring the award of punitive damages in cases brought under Title II of ADA (or under Section 504 of the Rehabilitation Act);11
- holding that reassignment of workers or other reasonable accommodations are not required when their provision would violate an established seniority system, even a system unilaterally implemented by an employer without collective bargaining; and12
- further narrowing the definition of disability in the workplace.
The two most widely discussed cases deal with employment. In Toyota v. Williams,13 the Court ruled that the company had not violated the law by refusing to accommodate a worker with severe carpal tunnel syndrome. Williams was not considered a person with a disability within the meaning of the law, because she could perform many routine housework tasks at home. This meant she was not "substantially limited" in the major life activity of working.
To understand how the Supreme Court could draw conclusions about someone's ability to work based on what they can do in nonwork situations, a new and disturbing approach adopted by the Court must be addressed. In previous cases, the Court looked directly at whether working was substantially limited by the impairment. In this case, the court did not look directly at working at all but assumed that since the carpal tunnel syndrome did not totally preclude the performance of all routine manual tasks in everyday life, the condition could not constitute a work disability.
Thus, it appears that the Court will look to the impact of the impairment in the workplace in resolving some ADA employment cases but will look to different impacts in deciding other cases. Very few people are likely to have impairments that meet this new test. For example, if a person using a wheelchair is able to move around her home or community, would the Court now rule that mobility-related limitations on her job performance in the workplace do not amount to a major limitation of working since she is able to get around all right at home?
In the other major ADA employment case, Echazabal v. Chevron,14 the Supreme Court was called upon to interpret the "direct threat" language of the law. Prior to this case and based on the statutory language and legislative history of the statute, observers had believed that this language allowed an employer to refuse to hire someone with a disability when doing so would pose a direct and objectively verifiable risk to others.15 But in upholding Chevron's refusal to give Echazabal a refinery job, the Supreme Court held that the company could deny him the position based on risk to the life and health of the employee himself, which supported expansion of the standard contained in Equal Employment Opportunity Commission regulations. Moreover, the Court held that in making this decision, the employer need not give credence to either the views of the job seeker's physician or the informed consent of the worker. This decision legitimizes reliance on fear and stereotypes as grounds for denying employment to people with disabilities.
In addition to legitimizing the fears and stereotypes of some employers, this decision dramatizes more than any other the major problem confronting Americans with disabilities in the courts. As discussed in section b below, disability discrimination has not been accorded constitutional status. A quarter century ago, the Supreme Court held it illegal to refuse a job to a woman employee based on risk to her health where informed consent existed.16 But today the Supreme Court says the identical refusal to allow a person with a disability to work raises no issues. Because gender is constitutionally recognized (a so-called "suspect classification"), discrimination against women (or against men) is reviewed with special scrutiny, whereas discrimination against people with disabilities, who have no constitutionally protected status, is governed only by statute. If ADA can be interpreted to allow a given employer practice, then no recourse to the Constitution may be available.
Beyond these decisions themselves, we noted in last year's report an atmosphere of profound fear and uncertainty among Americans with disabilities because of potential or real loss of legal protections. This climate of fear has become more pervasive during 2002 as a result of the continuing trend of court decisions unfavorable to disability rights and of the Federal Government's disinclination to include civil rights enforcement as a major element of the NFI.
In light of the many questions raised by recent Supreme Court decisions, the disability community lives under an atmosphere of legal siege. With few exceptions, court decisions bearing upon their rights and interests are being adversely resolved. When disability rights advocates discuss court decisions today, their focus is rarely on the extension of civil rights but rather on how to prevent or slow further erosion.
Other ADA issues making their way through the courts raise concerns about the ability of the law to accommodate changes in technology and society. Of particular concern here is the question of the applicability of ADA to Web-based services and commerce, and other electronic and information technology (E&IT) used in employment, education or commerce. Several federal court cases this year have dealt with the applicability to the Internet of Title II (local government services) and Title III (public accommodations). Perhaps the most publicized Title III case is a Florida District Court decision holding that ADA does not extend to an airline's Web site.17 The leading Title II case from the Federal District Court in Georgia is more favorable.18This case holds that the Web site of a public transit agency must be accessible to users with disabilities. Pending NCD's publication of an in-depth analysis of ADA and the Internet, the legal issues surrounding these cases will not be further explored here.
In a positive development, the Supreme Court in Atkins vs. Virginia ruled that executions of persons with cognitive disabilities found guilty of a crime are "cruel and unusual punishments" prohibited by the Eighth Amendment. The Court reasoned that it was "not persuaded that the execution of mentally retarded criminals will measurably advance the deterrent or the retributive purpose of the death penalty." The Court also referred to the growing number of states prohibiting the execution of persons with mental retardation as a reflection of society's view that those with cognitive disabilities are less culpable for their offense.
(b) THE CHALLENGE
Faced with a disheartening and deteriorating judicial situation, NCD is issuing a series of studies, Righting the ADA, which set forth the legal and human implications of these decisions, explain to the public and judiciary the background of ADA, and analyze the prospects for reform. Three in this series of policy briefs have been issued thus far.19 The series of briefs will conclude with a comprehensive report including legislative proposals and options.
Whether these and other efforts can bring about a reduction in apparent judicial antipathy to ADA and disability civil rights, only time will tell. But as suggested above, and as important as the outcome of particular cases, is the overall stance and leadership role taken, or not taken, by the Department of Justice (DOJ). In its law enforcement role, its regulatory functions and its role of informing and educating the courts, DOJ may well occupy the most pivotal position of any institution in our nation for shaping the course of disability civil rights and full inclusion. While the department's efforts in a number of areas warrant commendation and encouragement, we feel compelled to observe reluctantly that in a number of other key areas the progress has thus far fallen short of what might be hoped.
As indicated in the introduction to this report, a new and different philosophy may be at work in the Administration's implementation of ADA and other civil rights statutes. As opposed to the inadequate, under-resourced and passive approach that marked the previous decade, the current Administration may believe that vigorous civil rights enforcement, through the use of the sanction of the law, is not an effective way of bringing about nondiscriminatory behavior. If this is indeed the Administration's view, we urge its reconsideration.
Even in a time of limited resources and elimination of regulatory burdens on the public and private sector, we do not face an either-or situation in which public education and technical assistance on the one hand are somehow inconsistent with or pitted against vigorous law enforcement on the other. Indeed, we believe that neither can be effective without the other. At this critical time, only a full-spectrum approach can make the best use of scarce resources. To ensure the necessary scope and balance in the federal approach, NCD recommends that the Administration recommit itself to the appropriate use of civil rights enforcement as one technique among those it will use to bring our commitment to equality to fruition.
In this connection, NCD notes with alarm the apparent intention of some to subject civil rights enforcement to a new and ominous form of cost-benefit analysis. A letter written by the Small Business Administration's (SBA) Office of Advocacy to the Architectural and Transportation Barriers Compliance Board (the Access Board) (which the letter repeatedly misidentifies as the "Compliance Board") on September 6, 2002, epitomizes this new approach.20 In this letter the SBA office urges delay in adoption of a final rule amending the Americans with Disabilities Act Accessibility Guidelines (ADAAG) on the grounds that a number of required regulatory assessments had been made in ways that did not comply with required procedures or were inaccurate. The letter (which is similar to others this office has written to other federal agencies, protesting their proposed regulations)21 indicates that the Office of Advocacy is working closely with the Office of Management and Budget (OMB) and DOJ and indicates that more formal measures may have to be taken if the draft final rule is not withdrawn.
NCD is seriously concerned about the approach to ADA, and by implication to other civil rights laws that this protest embodies. ADA provides a number of defenses, including "undue burden" under Title III and "undue hardship" under Title I, for the protection of entities against excessive financial obligations. NCD is aware of no research suggesting either that these defenses are unworkable or that courts or administrative tribunals have in any way narrowed their applicability. Yet a protest such as this cites federal regulations, including executive orders, purporting to shift the analysis from a case-by-case determination to an up-front, global one, predicated upon what must be highly unscientific estimates and subject to no detailed examination or cross-examination as a particular entity's claim of undue burden would be.
NCD questions the wisdom or legal basis for allowing unsubstantiated global cost estimates that impede the adoption of regulations implementing civil rights laws in accordance with statute, or that place a heavy burden of proof and procedural compliance on the agencies acting in fulfillment of their statutory responsibility to adopt regulations. NCD recommends that the OMB clarify its views regarding the applicability of pre-adoption regulatory-burden analyses to civil rights legislation, and to make clear that the defenses available to private entities under ADA should in most circumstances provide ample protection against excessive or burdensome demands.
2. HATE CRIMES
As we did in last year's report, NCD recommends that Congress adopt legislation extending federal hate crimes protection to a number of groups, including persons with disabilities. NCD believes the needs underlying this recommendation are more imperative than ever.
Although all vulnerable groups (including people with disabilities and the very young or very old) face heightened risks and unique forms of victimization, some of the threats specific to those with disabilities have received far less attention than dangers facing other groups. In the cases of people with disabilities who do not dare report physical abuse or economic exploitation by caregivers, women with disabilities who remain in abusive relationships longer than abused women without disabilities, or victims of street crimes whose assailants are charged with less serious offenses because of prosecutors' perceptions of difficulties associated with winning a conviction, the likelihood, severity or duration of their victimization is determined by disability.22
3. GENETIC DISCRIMINATION
In reports dating back to 1996 (including most recently its White Paper on Genetic Discrimination, issued in February 2002),23 NCD has urged the enactment of strong genetic antidiscrimination legislation ensuring that DNA would not become destiny in matters of employment, insurance or health care. Regrettably, little progress has been made in this regard during the past year. Meanwhile, developments have occurred making such legislation all the more urgent and pressing.
NCD's white paper recounts studies demonstrating the widespread occurrence of genetic discrimination suffered by people believed to be at risk for genetic disease. More ominous, the studies document how fear of genetic discrimination leads many people to forego medical testing or even necessary treatment. Genetic discrimination therefore has already resulted in harm, and very probably, in more than a few deaths.
Increasing reliance on newly available sources of genetic information can only make these problems worse. The past year has witnessed the completion of the mapping of the human genome. Moreover, barely a week goes by without media accounts of research findings linking one or another disease or disease predisposition to a particular gene, missing or duplicated chromosome, or other genetic marker. While this research has not yet resulted in major successful interventions in the clinical course of any condition or disease, and while the fine print beneath the headlines usually indicates that the genetic marker in question accounts for only some fairly small percentage of disease instances, new genetic tests continue to proliferate, with the prospect even of home test kits in the offing.
The build-up of data purporting to link genes and health provides increasing rationalization for those who would use putative science to engage in what is known as "adverse selection" (that is, screening people out of insurance or employment on health-risk grounds). Moreover, since genetic information can often be obtained as a byproduct of other permissible tests, many people may be victims of genetic discrimination without ever knowing that such information has been obtained and used.
In a nation that prides itself on its belief in the worth of the individual, what could be more shocking, more objectionable, than a system of laws that countenances life-altering decisions being made about us on the basis of tiny snippets of protein in our cells over which we have no conceivable control? How does such a situation square with the values of personal responsibility that we invoke?
Hopes for application of ADA to prevent genetic discrimination were dealt a severe blow this year by the Supreme Court's Echazabal decision, noted in section 1a, above. Echazabal involved an individual with a long-standing liver condition seeking a job that would expose him to potential liver toxins, which in the view of the company would pose a "direct threat" to his health. What if instead of an actual liver disease, the employee had a genetic marker regarded as highly predictive of liver disease? Nothing in the Court's decision suggests the outcome would be different if the employer's decision were based on the perceived interaction between a genetic predisposition and environmental hazards. From the law's standpoint, there now seems to be little to distinguish a latent from a chronic condition.
Although many complexities and technical issues surround the crafting of genetic rights legislation, only one bona fide argument against trying appears to exist: namely, that if insurers and employers were prevented from using genetic information in their decisions about who to insure or employ, the costs of insurance and of doing business would increase, resulting in unaffordable insurance for some and a general decline in economic efficiency for all. NCD is aware of no empirical research confirming these predictions, especially in light of the arguably greater costs to society, even to health insurers and employers, of people's foregoing diagnosis or delaying treatment. Thus, against an undocumented claim that the sky will fall is set the basic right, fundamental under any standard of human dignity, to be judged on the basis of one's actions, capabilities and life choices.
Of course, there is no constitutional right to health insurance or to hold a particular job, but as use of genetic screening increases, the time may soon be at hand when the question for people with certain genetic makeups will be not whether they have a right to any particular job, but whether they have any right to work at all.
As genetic screening becomes more accessible, growing numbers of people with suspect genes are likely to appear. When we take into account group insurance decisionmaking based on the genetic endowments of family members (or of nonbiologically related but covered spouses and dependents), soon there will be few of us who are free from the risk of genetic discrimination if anyone cares to look into our cells.
NCD's white paper makes detailed recommendations for remedial legislation. NCD recommends that the new Congress recognize the growing importance of this issue and curb the discriminatory use of genetic information in insurance and employment, while there is still time. Genes are everybody's endowment, and one way or another discrimination based on genetic makeup is everybody's problem.
4. VOTING RIGHTS
NCD congratulates all those involved in enactment of the Help America Vote Act of 2002.24 Among its reforms, the new law provides authorization for funding to assist states in creating accessible polling places and requires installation of at least one accessible voting machine in each precinct.
For the first time many voters with disabilities look forward to casting their ballots independently and in private. Others who could not access their polling places at all look forward to entering the voting booth for the first time. But after pausing to acknowledge the significance of these reforms and to praise all those involved in bringing them about, we must turn our attention to ensuring that the law proves effective in fulfilling its promise.
In this connection, several areas need to be watched carefully. Despite the fact that the bill provides for federal grants to the states for a number of purposes, the law is generally regarded as weak in enforcement mechanisms. DOJ can seek injunctive relief to stop its violation, and the potential does exist for criminal prosecution for those who conspire to deprive Americans of their vote, but no federal entity has rule-making authority of the kind with which we have become familiar under most other funding programs, and nothing in the law defines as clearly as might be hoped what will constitute compliance in respect to various key provisions.
To provide a baseline for evaluating the success of the Act in enfranchising Americans with disabilities, NCD recommends that the Administration (through the voluntary oversight commission created by the statute, in combination with DOJ, the Federal Elections Commission, HHS or such other entity as may have the resources and the jurisdiction to be of assistance) undertake research during and after the 2004 election campaign aimed at determining whether or not significant numbers of voters with disabilities who might not otherwise have been able to vote were facilitated in doing so by the law, and whether or not significant numbers of persons with disabilities who could not previously do so were enabled to exercise the right of a secret ballot.
Because the discretionary funding formula established for the distribution of federal grants requires continued appropriations, and because of the current budget situation, NCD also fears that the sums authorized for disability access in the states may prove insufficient or prove unavailable, particularly in larger states, poor states or those hard-hit by the economic downturn. NCD is also concerned about the photo-ID requirement. We urge Congress to be alert to these concerns and to ensure that actual appropriations levels are adequate to meet the need.
5. SECTION 504
NCD expects to issue the sixth in its series of major civil rights monitoring reports early in 2003.25 The report will cover Section 504 of the Rehabilitation Act of 1973, the first major civil rights statute covering persons with disabilities in our nation.
In anticipation of this report, NCD has become increasingly concerned with the erosion of consciousness and enforcement surrounding Section 504. As evidenced in court decisions limiting availability of damages to victorious civil rights plaintiffs, the failure of Administration plans to feature many, if any, references to Section 504, and the use of new funding approaches that may narrow the extent to which federally sponsored activities are covered by Section 504, serious concern exists regarding the continued vitality of this historic and effective law.
NCD recommends that DOJ publicly affirm its commitment to the principles and the use of Section 504 as an important instrument for ensuring full access and civil rights for all citizens. In this connection, we also recommend that the Administration revitalize and empower the Interagency Disability Coordinating Council as a major vehicle for the coordination of Section 504 policy and implementation among the numerous federal agencies that must be engaged if the law is to achieve its full potential.
Education
In last year's report, NCD noted that education is at a crossroads in our country. With passage of NCLB,26 the role of the Federal Government in the education of America's children was transformed more significantly than at any time since passage of the Elementary and Secondary Education Act of 1965. NCLB is still in development, but many of the regulations needed for its implementation have now been published,27 and a number of issues of particular significance to students with disabilities have emerged.
For all students, including those with disabilities, we stand at a historic turning point. The confluence of NCLB, this year's report of the National Commission on Excellence in Special Education28 and the imminent reauthorization in 2003 of IDEA creates both grave risks and unprecedented opportunities. The challenge for Congress in reauthorizing IDEA is to develop a statute that meshes IDEA smoothly and seamlessly with NCLB, that carries the positive vision of NCLB into the special education realm, and that respects and preserves those features of the special education system that have allowed so many children with disabilities to learn in integrated classrooms and to take their places in mainstream society.
1. NCLB IMPLEMENTATION
With a few specific exceptions, NCLB does not address the issues and concerns unique to students with disabilities. Moreover, it does not always address practical details about how provisions theoretically applicable to all students and all schools are to be applied to students with disabilities. While the NCLB implementing regulations have of course answered many questions about the law, they have also created new questions and concerns. As the NCLB implementation process continues, many of these new questions should be answered as well, and these answers must be widely disseminated throughout the education community.
(a) SCHOOL CHOICE
One area of residual uncertainty is exactly how the new provisions bearing on school choice apply to students with disabilities, particularly in relation to compliance with IDEA requirements and in terms of how the Federal Government will exercise its monitoring and enforcement responsibilities regarding school choice. NCLB makes clear that all students are entitled to the benefits of choice. Where poor school performance triggers the school-choice provisions of the law, all students, including those with disabilities, will have the opportunity to benefit. But the regulations also seem to indicate that the precise range of choices that a local district or local education agency (LEA) offers to students with disabilities receiving services under individualized education plans (IEPs) or under Section 504 plans need not necessarily be identical to the choices offered to other students.29
Many factors determine what transfer options must be made available when school choice is invoked. If distance or overcrowding result in the unavailability of a suitable alternative school, then no student, with or without a disability, will have transfer options within the public system. But what about situations where otherwise appropriate schools are available but inaccessible? Are schools exempted from being appropriate alternative placements on this ground?
Similarly, what, if any, other restrictions can school districts or LEAs impose on the transfer rights of students with disabilities that would not be applicable to their classmates? A complicating factor here relates to funding-not to the adequacy of funding but to how it can be used. The new regulations make clear that special education funding can and should by and large follow students, so that when schools receive new special education students as enrollees their funding will increase commensurately. But the new rules also remind us that special education funding goes not to individual students but to school districts.30 Clarification of the law's flexibility with respect to funds transfers, including interdistrict or inter-LEA transfers, is needed.
(b) TEACHER TRAINING
NCLB makes clear that teacher competencies must be upgraded and sets forth certification standards for teachers of primary subjects.31 Because many students with disabilities have continued to receive their education and related services in relatively segregated classes, it appears that a number of special education teachers have, in fact if not in name, become these students' teachers for the primary subjects of the core curriculum.
As testing becomes an increasingly central determinant of student and school success, issues surrounding the training and qualifications of these teachers become all the more pressing. Both from the standpoint of the legal requirements bearing upon special education teachers and from the standpoint of their ability to prepare their students for the increasingly rigorous challenges they will face, the NCLB implementation process needs to include detailed guidance on what training and credentialing requirements will be placed on special education teachers, what resources will be made available to help these already highly skilled and well-trained professionals adapt to the new requirements, and other related questions.
(c) TESTING
At the heart of the NCLB's emphasis on accountability is universal testing. Through testing, the relative performance of every school is to be judged, and their year-to-year changes in performance (revealed primarily by test scores) trigger funding, technical assistance, school choice and other statutory provisions. Once again, though, while in principle students with disabilities are expected to be tested, and their tests results counted along with the outcomes achieved by other students, many key questions remain about how testing is to be done with this population.
For example, because NCLB vests states with considerable authority in choosing tests, the problems of test validation (norming) for use with students with various disabilities are likely to increase with the number of tests in use. Moreover, if testing is to be fair (that is, produce reliable comparisons among all schools using the same tests), then issues of reasonable accommodation such as extra time and use of assistive technology (AT) must be systematically addressed and uniformly resolved. The National Commission on Special Education report recommends that all tests be developed with universal design and that the accommodations that are reasonable be specified for each test. Yet the Commission has not identified or estimated the resources needed for carrying out these assessments, has not recommended that test developers be required to do so as a condition for marketing their instruments and indeed has not addressed whether all tests currently in use can be made fully fair and accessible or can be validated for use with reasonable accommodations.
The Department of Education's August 2000 guidance on the applicability of testing requirements to IDEA remains the most specific authority available on the relationship between IDEA and performance testing.32 But with the enactment of NCLB, many of its precepts are likely to be out of date or superseded by new provisions. Ideally as a baseline for Congress's use in IDEA reauthorization (but if not, then certainly as soon after re-enactment of IDEA as possible), NCD recommends that the Department of Education (ED) update its policy guidance on the relationship between special education and performance testing.
2. THE REPORT OF THE NATIONAL COMMISSION
Although initially scheduled for reauthorization during 2002, IDEA was not reauthorized but received an automatic one-year extension, meaning that it will be a subject of importance and necessary action for the first session of the 108th Congress. As a result of the delay, Congress will have the benefit of the report of the National Commission on Excellence in Special Education in its deliberations.33 Undoubtedly this report will provide the jumping-off point for much of the discussion on reauthorization, organized around support for and opposition to its specific findings and recommendations, and around questions of how to operationalize its proposals. While bearing in mind the need to review and modernize all programs, NCD recommends that in reauthorizing IDEA Congress remember the accomplishments and achievements attributable to this law. Specifically, in evaluating this report and in assessing special education, as it has existed until now, NCD urges Congress to consider the following points.
(a) THE BASIC PARADOX
One of the basic premises of the Presidential Commission's report is that excessive bureaucracy, paperwork requirements, compliance reporting and other rigidities and technicalities significantly interfere with the educational process. Partly for this reason, the report recommends major revamping of ED's monitoring, technical assistance and other oversight practices.
At the same time, a number of studies, including NCD's 2000 Back to School on Civil Rights report,34 have catalogued a pattern of inadequate monitoring and underenforcement over many years, almost to the point of virtual nonenforcement, of IDEA by ED, spanning administrations of both parties. Perhaps not surprisingly, Assistant Secretary of Education for Special Education and Rehabilitative Services Pasternack has indicated that no state is in full compliance with IDEA.35
How could it be then that we have an excess of regulation, control and paperwork on the one hand, and a shortage of monitoring and enforcement on the other? Put another way, is it possible that both these conditions exist simultaneously? The report offers one possible explanation for the paradox by noting that checklists of federally required stipulations have grown to more than 814 items, leading the Commission to conclude that because of an emphasis on "process compliance" rather than outcomes and results, a school could in theory comply with all these requirements while not necessarily providing students with a quality education. The Commission does not estimate how many of the 814 compliance items have real educational value, let alone how much better off students with disabilities might be if the law had been enforced in reality as much as it was on paper.
In its characterization of the sea change that special education must undergo, the report juxtaposes a law that emphasizes procedural requirements and evidence of compliance with an environment that places primary emphasis on accountability for results and outcomes. But as suggested by the paradox just noted, compliance and accountability should not be regarded as opposites or as mutually exclusive. To create an effective program, they must exist together. Accordingly, NCD recommends that Congress provide authority and resources for effectively monitoring all aspects of the revised IDEA over the coming years.
(b) MONITORING
In recognizing the need for more targeted and focused monitoring, albeit on a smaller number of criteria and on the basis of broader and more general guidelines, the President's Commission on Excellence in Special Education report reflects an awareness that national standards continue to play an important role. Indeed, if compliance with uniform national standards were not still an important element of the federal approach, the regulations implementing NCLB would hardly be as lengthy and detailed as they are. Given its focus on the excesses of compliance monitoring and on the evils of a "culture of compliance," the report makes no specific effort to identify the strengths of the existing special education model. Perhaps all critical studies necessarily suffer from a preoccupation with what is wrong, and perhaps a focus on the negative is a necessary precondition for all major reforms of any system, but we must be mindful that special education has accomplished tremendous results for America, and we must therefore be careful to preserve what works while eliminating and replacing what does not.
In asserting that no demonstrable link exists between IDEA compliance monitoring and student performance, the Commission has created a proposition that should not exist and has failed to recognize some of the historic goals of special education. For example, the Commission appears to believe that process compliance was an issue early in the development of special education because of the need to identify whether or not and how much service was being provided; however, the Commission believes this information is now no longer needed. Yet, without at least some information on the process, how can anyone determine whether such IDEA-mandated goals as parental involvement, education of students in the least restrictive environment, or appropriate utilization of AT are being met?
It is seductively simple to say that student performance or comparative state performance data will tell Congress and the public all they need to know about the adequacy of services or the effectiveness of the new law. However, student and school and state performance data, including test scores, graduation rates and other end results, will tell little about nonquantifiable but key variables of the educational system such as those just noted, and in those cases in which performance fails to improve as expected, test results unaccompanied by appropriate process information will give little insight into either the causes or the solutions for the problem. On the contrary, appropriate compliance monitoring remains the only way for ensuring the educational and related service inputs necessary to bring about the desired outcome goals and results.
(c) IEPs AND PARENTAL RIGHTS
The report sharply condemns the existing IEP process, quoting one administrator who characterizes the current IEP as a "litigation document."36 The Commission proposes to replace the current IEP with a document that will be judged by student outcomes. While Congress must still flesh out the details of this proposal, some of its implications warrant discussion and concern.
First, although simple and attractive on its face, this proposal means that IEPs cannot be challenged or evaluated until their expiration, since the results by which they are to be judged will presumably not be known any sooner. The Commission also rejects the use of short-term "benchmarks." The nature of parental involvement will be dramatically changed under this proposed new structure. Additionally, if an initially appropriate IEP proves inadequate or requires modification because of changed circumstances, what opportunity for making such changes will exist, and what formal input opportunities will parents possess during the duration (typically one year under current law) of the IEP?
The report recommends a high degree of parental involvement and choice in the educational decisionmaking process, but it is far from clear what leverage parents would have when they and educational officials and experts have differing views. In the absence of any mention of the subject in the report, we can only assume that the backloaded IEP evaluation process recommended by the Commission would eliminate any legal ground for parental objection to the terms of their child's plan. As such, it is difficult to know what the new parameters for parental empowerment in the IEP process would be.
Clearly, as the report's discussion of the need for dispute reconciliation, binding arbitration and other conflict-resolution mechanisms makes clear; the Commission is not unmindful that such disagreements will arise. However, the Commission's references to the defensive purposes and legalistic nature of the IEP process suggest it does not look favorably on existing due process rights accruing to parents and families.
It is unknown whether the Commission sought or received testimony from any parents who had been able to achieve higher quality results or educationally instrumental services for their children through use of the due process provisions embodied in the current law. If the Commission did hear from such parents or from successful graduates, they would know how often a high level of assertiveness was required to obtain the necessary services. While the culture of high educational expectations the Commission hopes to produce should over time result in IEPs that reflect students' highest potentials, current practice is described by many parents as reflecting low expectations on the part of many school systems. Without due process to bolster the role of parents while the transformation in the culture of expectations takes place, what will happen in the meantime? Having identified the need to raise expectations as a central problem, the Commission cannot trust solely to the good offices of educators to bring that about.
Accordingly, NCD recommends that in its review of the Presidential Commission's report Congress seek testimony from parents and students who have been obliged to utilize due process in order to overcome low educational expectations, and who have benefitted from the services and outcomes their determination brought about.
Additionally noticeable, and frankly ominous in this regard, the Commission calls for mediators and arbitrators to be drawn from outside of education or disability advocacy. While such personnel should be trained in conflict resolution and negotiation, the notion that they should be ignorant of education or of the issues faced by individuals with disabilities is little short of frightening. However skilled they may be in smoothing feelings and cooling tempers, is it not of equal or greater concern that they have some in-depth knowledge about the subjects and the destinies they may be helping to adjudicate?
Anecdotal evidence reaching NCD over the years suggests that the admitted problems with the IEP process may have as much to do with the need of school districts to cloak economic decisions in educational justifications as with the desire of unrealistic parents or avaricious lawyers to rush into court. In any event, the point is the need for balance. As long as schools are obliged to filter their placement, services and other special education decisions through the prism of costs, as they will always be required to do, the right of parents to contest those decisions in impartial settings will be crucial to the vision of accountability and performance that the Commission upholds.
(d) ELIGIBILITY DETERMINATION AND ASSESSMENT
Rejecting the 13 categories of disability currently used to determine eligibility for special education services under IDEA, the report opts instead for a three-category classification system; 90 percent of currently covered students would be in the Category 3 group, which includes a variety of disabilities now assessed by psychometric, behavioral and emotional tests. With respect to several of the more controversial disability categories comprising Category 3, namely, mental retardation and emotional disturbance, the report devotes welcome attention to the over-representation of students from culturally diverse backgrounds in these groups. Without postulating a statistical correlation, the report plainly suggests that teacher referrals are the source of a high proportion of the referrals in these and other "high-incidence" disability categories.
While this finding suggests the commission's belief that reliance on teacher referrals is connected to the rise in absolute numbers as well as to the over-representation of culturally diverse children within special education, the report also criticizes non-classroom-based assessment instruments and argues for assessments based on classroom observation and on documentation of the behavioral and academic results of classroom interventions. Thus, while implicitly disparaging teacher evaluations, the report appears to increase the likelihood that teacher evaluations will become the basis for diagnosis and categorization.
NCD shares the Commission's serious concerns, as documented by the National Research Council, about the over-representation of culturally diverse children, especially African American males, in certain culturally influenced or inherently subjective diagnostic categories. We agree that use of culturally inappropriate IQ or other tests may contribute to this problem. But without significant investments in teacher training, reliance on the dynamics of the classroom may well serve to exacerbate rather than to solve the over-representation problem, especially in schools or communities where, due to high class size or other conditions, the opportunities for individualized intervention are limited. Accordingly, NCD recommends that Congress consider the scope and availability of resources that will be necessary to effectively impact the high-incidence diagnosis problems cited by the Commission. In considering this issue Congress must also bear in mind that correction of the culturally diverse over-representation problem, and indeed reduction in the overall rate of increase in the number of students found eligible for special education services, will also depend in large part on the ability of teachers and schools to provide adequate educational and related services. It may well be that some students are being misdiagnosed because of poor educational performance, which could be remedied by remedial education services but that, in the absence of such services, results in the students' misclassification as special education eligible.
(e) FEDERAL FUNDING
While recommending a number of significant changes in the federal funding formula for Part B special education services, the Presidential Commission does not support a concerted effort to bring federal participation up to the so-called full-funding level of 40 percent of special education costs. NCD has strongly recommended such increases, bearing in mind that this level of funding was part of the original intention of those who created the program (see, for example, http://www.ncd.gov/newsroom/publications/synthesis_07-05-02.html, for information about NCD's recommendations).
Faced with this reality, we commend a number of the Commission's financial proposals, especially its recommendations for targeting extra federal support toward defraying the costs associated with extremely high-needs, high-cost students and those allowing for the pooling and carrying-over of unspent funds to create safety nets, and for related purposes. Such measures, however, will not solve the basic problem.
Special education and vocational rehabilitation are unique among major programs serving people with disabilities, in that they are entitlement programs without any entitlement. This means that anyone who meets the eligibility requirements of the programs has an absolute right to services, but the funding of these programs is discretionary with Congress. Vocational rehabilitation has been empowered to deal with this dilemma by allowing states to declare an "order of selection,"37 under which they can temporarily cut off services to those who, though meeting statutory eligibility standards, are determined to have less severe needs. Special education, on the other hand, does not have this option. As long as this legal situation exists, educational and budgetary decisions are likely to remain impenetrably intertwined in ways that complicate and obscure each alike. We certainly do not advocate applying "order of selection" or measures to reduce eligibility for special education, since education is a fundamental right for all children. We do believe though that accountability cannot be fully achieved as long as educators have to hide budgetary decisions behind educational rationales. Accordingly, without attenuating the responsibility of the public school system to provide special education services to all students found eligible for them, NCD recommends that Congress look for means by which the relative roles of educational and budgetary considerations in school system decisionmaking about individual children can be more clearly separated and differentiated than has hitherto been the case.
(f) CHARTER SCHOOLS
The national commission endorses maximum flexibility in school choice for students with disabilities, recommending amendment of IDEA to allow special education funds to move with students and recommending amendment of other laws to further this flexibility. The report also urges states to ensure an equitable flow of various types of funding to charter schools. Missing, though, is any reciprocal requirement that when children with disabilities exercise choice to attend charter schools, such schools will be willing to accept or required to accommodate them. Without such reciprocal requirements, a significant element of choice may all too often represent an empty promise.
Ironically, the Commission's recommendation that charter or other choice schools be held to the same standards of accountability as regular public schools may work to increase barriers to their accepting students with disabilities. Small or experimental schools, especially anxious to achieve high test scores to establish their franchise, may be unwilling or afraid to risk the burdens, the diversion from their particular focus or the perceived risk of accommodating students with severe disabilities, particularly those falling into the sensory and physical-neurological disability groups identified by the Commission. Only by including strong antidiscrimination requirements in IDEA can this risk be adequately averted. Accordingly, NCD recommends that Congress incorporate into IDEA strong antidiscrimination provisions aimed at ensuring that charter and other choice schools receiving funds, whether directly or indirectly, under NCLB or other federal programs be reciprocally required to provide the identical services and accessibility to students with disabilities that public schools would be required to provide.
3. OTHER ISSUES
A number of other concerns, raised in NCD's last status report but not addressed by the national commission, remain critical to the reauthorization of IDEA. As a backdrop for consideration of the issues that follow and all the issues surrounding IDEA reauthorization, NCD urges Congress to review our IDEA reauthorization synthesis paper38 and the recent report of our Youth Advisory Council.39
(a) ASSISTIVE TECHNOLOGY
AT represents one of the most important modalities for enabling students with a broad range of disabilities to participate and learn in the mainstream classroom. From the powered mobility device to the augmentative communication device to the assistive listening system or the synthetic speech output computer, this technology has revolutionized the lives of students with disabilities much as the technology it tracks has transformed the classroom experience for students without disabilities. For this reason, NCD, through many studies and reports, has continued to advocate for procedures that will ensure the fullest possible utilization of appropriate AT on behalf of students with disabilities through the IEP process.
To the degree that AT is not an outcome in the sense that term is used by the national commission, enactment of the Commission's recommendations may leave us in a situation where the scope and effectiveness of AT implementation and student assessment for AT cannot readily be known. Some may argue that the quality of AT assessments and inputs can be inferred from academic results, but more direct information and criteria are needed. The danger is that with AT devices and services needed by students with low-incidence disabilities, the system of accountability proposed by the national commission may actually create disincentives to the maximum use of AT. This is so because even if, as seems obvious, the failure to provide and use AT will result in lower test scores for some students with disabilities, the number of such students may be too small to make a material statistical difference in the overall performance of some larger schools and some school districts. If aggregate scores are not affected by AT policy, whatever the devastating impact of its denial on individual students with disabilities, the following question must be asked: What incentives or what mandates will the law contain to ensure its provision and use? Ironically, too, the smaller schools and districts, with presumably the least resources to provide AT, will face the greatest statistical need to do so, because for them the consequences of poor performance by even a few students may prove statistically and competitively more significant.
Accordingly, NCD recommends that Congress take steps to ensure that accountability extends to the use of and the assessment of students for AT.
The IDEA reauthorization of 1997 required that consideration be given to AT in the identification of student needs and in formulating IEPs, but that law included no specifics as to the form such consideration should take and no documentation requirements regarding the extent or nature of such consideration. While no data have been found that shed material light on how this provision of the law was handled by school districts around the country, it is clear that the requirements of the 1997 reauthorization insufficiently ensure thorough assessment of AT needs and possibilities in the IEP process.
(b) ACCESS TO MAINSTREAM SCHOOL TECHNOLOGY, INSTRUCTIONAL MATERIALS AND MEDIA
When we mention AT, as discussed above, we ordinarily think of devices, peripherals or software specifically designed for use by people with disabilities in performing various functions and tasks. Leaving aside the economic, design and attitudinal issues surrounding their use, these devices, such as assistive listening systems or computers with speech output, pose no conceptual difficulties. What they do and why is usually fairly self-evident, especially once people observe them in operation. But with the technology needed to make mainstream school equipment and instructional resources accessible, the conceptual as well as administrative issues are a good deal more complex.
As electronic media become an ever more central part of the curriculum, the importance of making such media and school computers accessible grows increasingly critical. From an administrative standpoint, a key challenge in making mainstream school technology accessible is integrating general and special education technology funding. In its report, the PCESE speaks of a need for better melding of resources, but offers little guidance on where this need is greatest or how such cross-statutory flexibility can be achieved. Suffice it to say, as indicated in last year's NCD status report, while education officials recognize the obligation to make school buildings physically accessible as a need that must be met out of mainstream construction funds, they do not always demonstrate comparable recognition of the need to make school computers, tech labs and other communications technology accessible as well. Too often, they contend that such expenses are the responsibility of special education and should not, or even cannot, be met out of general-purpose funds.
Like adding a ramp to a building after it has been constructed, the costs of retrofitting communications technology and infrastructure are typically far higher than the costs of incorporating such capabilities into the basic procurement and design strategy. Remitting these expenses to special education would mean that accessibility need not be implemented until requested by a specific student, parent or staff member, by which time (as with installing the ramp or widening the bathroom doors) it would be far more expensive and potentially undoable. Unless the reauthorized IDEA includes mechanisms for ensuring that accessibility will be treated as a core school obligation, and unless the law includes compliance monitoring that places accessibility among the accountability measures of record, differential access to educational technology and resources will undermine our aspirations and high expectations as surely and as relentlessly as exclusion from the school building would. No one would countenance exclusion of students from school buildings because of disability. We cannot permit their exclusion from the curriculum or the learning process once inside the building. Accordingly, NCD recommends that IDEA make clear that the requirements that apply to physical access to school facilities are also applicable to program participation, including access to E&IT resources and educational media included in the mainstream curriculum.
Textbooks represent one area in which the technical and administrative issues surrounding accessibility have been widely discussed. We would not dream of giving a textbook to one student in a class while denying it to another, yet this is exactly what happens when inaccessible textbooks available only in print are given to blind students or when videos without captions are presented to deaf students. It would be one thing if the technology for making most textbooks and related educational media accessible did not exist or were too expensive or difficult to use, but such is not the case.
In 2002, ED commenced an effort with various stakeholders to develop voluntary textbook accessibility standards.40 In seeking to create a national consensus, ED was responding to the varying and sometimes inconsistent textbook accessibility laws enacted in approximately half the states. While we hope the department's efforts will result in a high level of agreement and in the articulation of workable standards, we question the use of a voluntary approach. Since inconsistent state laws will not be overridden or negated by voluntary federal standards, we fail to see how the promulgation of such standards will solve the problems facing textbook publishers in their efforts to comply with state law.
Assuming that viable standards can be developed, NCD recommends that ED make these standards mandatory. We believe that federal law, including Title II of ADA and Sections 504 and 508 of the Rehabilitation Act, as well as provisions of IDEA, supports such action. In any event, the IDEA reauthorization should include provisions making clear that accessibility of textbooks and other educational media and materials is required, no less than accessible building entrances are. Accordingly, NCD recommends that ED take steps to implement regulations making mandatory such textbook accessibility standards as its current voluntary consensus-building effort yields, and if its efforts result in no such consensus, that the department nevertheless adopt suitable regulations by no later than the end of 2003, based on the findings made and the best practices discovered during the next year.
Health Care
The United States has among the finest and most advanced health care in the world, but the systems for delivering that care to many of our citizens are under severe strain and, in some sectors, in crisis. The problems are no mystery, even if their solutions are elusive. These problems include shortages of adequate primary care (particularly in inner-city and rural areas); overuse of hospital emergency rooms in the face of a decline in the number of such facilities; rising insurance premiums in the private sector that preclude individuals from purchasing or employers from providing coverage; declining incomes and growing dissatisfaction among doctors; escalating scarcity of physicians willing to treat Medicaid or Medicare beneficiaries; opting out by managed care organizations from coverage in various areas and of various subgroups of the population; narrowing definitions of what is covered and increasing co-payments and deductibles (resulting in larger out-of-pocket costs to the fully insured); growing numbers of Americans without any health insurance; crushing prescription drug costs; and, most recently, sharp cutbacks in state Medicaid programs, among others.
No one is satisfied with the current system, yet no one can bring forward anything approaching consensus recommendations for reform. Recognizing that in matters of accessibility, availability, affordability and adequacy of health care, persons with disabilities are the proverbial canary in the mineshaft, NCD has followed and contributed to the evolution of health-care policy for more than a decade.41 As with every year, 2002 has witnessed the emergence of new perspectives and new emphases in the public discussion of the issue. This chapter addresses both the core issues of concern over the years and the particular issues likely to predominate in congressional and executive branch reform efforts during 2003.
1. GENERAL CONSIDERATIONS
In last year's status report, NCD offered detailed recommendations for any major health-care reform legislation, such as a patients' bill of rights. Like many, we had hopes that Congress and the President would be able to formulate a new vision for health, as they had for education, and we remain hopeful this may prove possible in the 108th Congress.
To reiterate briefly these basic principles, NCD believes that to be inclusive of Americans with disabilities, any reform legislation must bar all plans and carriers from refusing to insure otherwise eligible individuals solely on the basis of disability; include provision for the availability of specialized care and practitioners that people with disabilities may need; provide for continuity of care for persons with chronic health problems or specialized care needs who cannot find suitable substitutes among the new roster of providers when provider networks change; call for standing referral or other flexible referral mechanisms for the predictable, specialized needs of people with disabilities; mandate that legally required information be effectively communicated to persons with disabilities who cannot access print or spoken information; ensure that if coverage for clinical trials is included as a part of any insurance coverage, it not be limited to pharmaceuticals but be available to test the safety and efficacy of AT and community-based interventions as well; and include mental health parity.
Last year's report also included recommendations for several pilot demonstration and research projects designed to shed light and potentially allay cost-fears regarding broadening of the standards used to determine medical necessity and the implications of more functionally based methods and standards for evaluating various proposed inputs and interventions. Pending broad-based reform, we believe these studies should be carried out. Specifically, they would involve controlled experiments testing and demonstrating provision of appropriate AT to persons with disabilities, carried out under conditions where the actual effects on costs, benefits and outcomes of such provision could be carefully measured, and under circumstances where the financial exposure of participating insurers or self-insured plans would be strictly limited.
2. MEDICARE
(a) PRESCRIPTION DRUGS
Because of its urgency for so many Americans, the issue of prescription drug coverage for senior citizens is high on the agenda of both political parties in the 108th Congress. Originally designed for an era in which hospital and other acute care typically represented the largest out-of-pocket risk for senior citizens, Medicare does not generally pay for prescription drugs except as an incident of hospital or other institutional care. As the role of pharmaceuticals in long-term health management has grown, and as drug costs have sk | 
