NATIONAL DISABILITY POLICY: A PROGRESS REPORT
December 2004 - December 2005

National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
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Publication date: November 9, 2006

Letter of Transmittal

November 9, 2006

The President
The White House
Washington, DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I am pleased to submit NCD’s National Disability Policy: A Progress Report, as required by Section 401(b)(1) of the Rehabilitation Act of 1973, as amended. This report comes at a pivotal time; a time when American citizens and leaders call for dramatic change in a range of areas of public policy and programs for people with disabilities consistent with the vision of the Americans with Disabilities Act of 1990 (ADA). For example, an Equal Employment Opportunity Commission report has recently noted that the proportion of federal employees with disabilities has decreased to less than 1 percent of the federal workforce.

The attached progress report covers the period December 2004 to December 2005. It reviews federal policy activities noting progress where it has occurred and makes further recommendations where necessary. The recommendations apply to the Executive Branch, to the Legislative Branch, and in some instances to both. While NCD believes the country is moving forward, expanding opportunities and inclusion for Americans with disabilities, the rate of progress is slow. Federal policy still contains inconsistent messages and unrealistic requirements for people with disabilities who rely on such federal programs as Social Security disability benefits, Medicaid, Medicare, special education, and Temporary Assistance for Needy Families.

NCD believes that to accomplish the vision of ADA, it is critical that the Administration work with leaders in Congress to implement an effective disability agenda that results in quality lives for over 50 million Americans with disabilities. Thank you for the opportunity to play the independent role that our mission requires and to offer an objective assessment of progress. As the nation celebrates the 16th anniversary of the ADA, NCD stands ready to work with you and stakeholders outside the government to see that the public policy agenda set out in the attached report is implemented.

Sincerely,


John R. Vaughn
Chairperson

National Council on Disability Members and Staff

Members

John R. Vaughn, Chairperson
Patricia Pound, First Vice Chairperson
Glenn Anderson, Ph.D., Second Vice Chairperson

Milton Aponte, J.D.
Victoria Ray Carlson
Chad Colley
Robert R. Davila, Ph.D.
Barbara Gillcrist
Graham Hill
Young Woo Kang, Ph.D.
Kathleen Martinez
Lisa Mattheiss
Anne M. Rader
Marco Rodriguez
Linda Wetters

Staff

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

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

Table of Contents

Executive Summary
MAJOR TRENDS

(a) Applying the ADA to the 21st Century
(b) A Time of Scarcity
(c) Accountability in Disability Programs
(d) Specific Evalutation Issues
(e) Innovation
(f) Timing
(g) Conflicting Trends
(h) Partnership and Collaboration
(i) Asset Development
(j) Conclusion

Introduction
(a) Legally-Mandated Statistics
(b) The Census
(c) Labor Market Data
(d) Quality of Life
(e) Data and Database Coordination
Recommendations

Introduction
(a) The ADA
(b) Civil Rights Forum
(c) Assisted Suicide
(d) Genetic Nondiscrimination
(e) Voting
(f) Rights of Institutionalized Persons
Recommendations

Introduction
(a) Burden of Proof
(b) Implementation of IDEA
(c) IDEA and No Child Left Behind
(d) Costs of Compliance
Recommendations

Introduction
(a) Disparities in Health Care or Outcomes
(b) Medicaid
(c) Mental Health Parity
(d) Veterans Health
Recommendations

Introduction
(a) Background
(b) Critical Distinctions
(c) Insurance
Recommendations

Introduction
(a) Juvenile Detention
(b) Foster Care and Adoption
(c) Comphrehensive Health Insurance
Recommendations

Introduction
(a) The Continuing Statistical Problem
(b) The Vocational Rehabilitation System
(c) One-Stop Centers
(d) Social Security Initiatives
(e) Employer Education and Law Enforcement
(f) Innovation
Recommendations

Introduction
(a) Background
(b) The Problem of Definitions
(c) Work Activity
(d) Pathways to Independence Act
(e) The Hard-Core Unemployed
Recommendations

Introduction
(a) Civil Rights
(b) Homelessness
(c) Rental Assistance
(d) Home Ownership
Recommendations

Introduction
(a) Surface Transportation
(b) Paratransit
(c) Other Surface Transportation Programs
(d) Air Travel
Recommendations

Introduction
(a) Assistive Technology Research
(b) Federal Procurement Under Section 508
(c) Telecommunications
Recommendations

Introduction
(a) The U.S. as Model, Teacher, and Student
(b) Health Promotion
(c) The UN Convention
(d) International Travel and Commerce
Recommendations

Introduction
(a) Context
(b) The Report
(c) Critical Infrastructure
(d) The Needed Response
Recommendations

Executive Summary

The National Council on Disability (NCD) is required by law to produce an annual progress report to the President and Congress identifying issues of concern to citizens with disabilities and of importance to policymakers, and highlighting developments occurring in the previous year. As such, it can be regarded as America’s Disability State of the Union Message.

Subjects covered in the report are of two kinds: those topics (transportation, housing, education, etc.) required by statute to be included, and subjects (e.g., assistive technology, and homeland security) whose growing importance has led NCD to add them to the report. In addition, this year’s report continues the practice begun two years ago of including at the front of the report, as an introduction to the specific topical chapters, of a Major Trends section. This section attempts to draw out the common or recurrent themes that run through and serve to unite the different subject areas. It also attempts to place disability-related policy issues as fully as possible within the context of the broader range of decisions that government is being called upon to make.

This year’s Major Trends begins with the premise that in all social policy areas, our nation stands at a crossroads, facing major choices and attempting to incorporate new approaches. The section endeavors to relate these broad themes to many of the specific issues facing people with disabilities and disability policymakers. Scarcity of resources, accountability of agencies, methods of program evaluation, application of innovations, role of government-private partnerships, and the development of asset-development as a major antipoverty strategy are among the issues discussed as they specifically relate to disability policy.

Chapter One of the report deals with statistics. Recognizing the growing importance of data, especially statistical data, in the formulation of goals and the evaluation of programs and strategies, the chapter addresses some of the ways in which our choice of what data to collect reflects assumptions about what is important and about the nature of such relationships as the one between disability and work.

The chapter also discusses current statistical requirements, including progress toward collection of data elements mandated by law. Progress is appreciatively noted in connection with several ongoing data-collection requirements, but concern is also expressed regarding the scope and viability of other collection efforts.

Particular attention is focused on the work of the Census Bureau in gathering disability-related demographic data. The need for recognition of the difficulties involved and the importance of involvement of people with disabilities in the formulation and field testing of proposed questions are noted.

Recommendations are offered for a thorough review of a variety of data collection efforts in light of current needs, informational resources and research capabilities. In particular, the need for updated cost-benefit methodologies is stressed, including methodologies that track the indirect, cross-programmatic and long-term impacts of various measures and decisions.

Chapter Two addresses civil rights. Civil rights differs from almost every other subject area, because the enforcement choices we make and the results achieved cannot be evaluated in the same ways as decisions in other policy areas. Determinations can be made of the per settlement costs of enforcement efforts, of case-processing backlogs and timeframes, and of other important indicators. But determinations of what allocation of resources is best between civil rights enforcement and other methods, or within civil rights between enforcement and technical assistance, these are far more complex and involve questions that cannot be answered with statistics or numbers.

As any discussion of civil rights and disability must, the chapter begins with a review of developments in the Americans with Disabilities Act (ADA) during 2005. On this historic 15th anniversary of its enactment, the chapter addresses issues surrounding the assessment of current ADA enforcement strategies, including the role and efficacy of technical assistance, mediation and other key components of the government’s approach.

Not strictly related to the ADA but reflective of its spirit, NCD participated in the convening of a major civil rights forum during 2005. As important as the specific issues and recommendations coming out of the forum is the diversity and the broadening of input that this forum represented.

In light of the profound emotions and agonizing debate that surrounding the Teri Schiavo case, the chapter also deals with the issue of assisted suicide. In light of the Schiavo case, NCD reissued its paper on that subject, with a revised introduction raising additional concerns and marshalling new evidence in favor of the Council’s opposition to assisted suicide.

Another area that could conceivably fall within the jurisdiction of the ADA, but that has not yet been viewed in that light, is genetic discrimination. Reiterating its support for pending legislation to outlaw genetic discrimination in employment, insurance or other settings, the report notes new concerns that can be foreseen if such legislation is not passed. With the rapid progress of work on sequencing the human genome, the time is close at hand when almost everyone can be found to have some genetic characteristic that has a statistical linkage to some illness or undesirable propensity.

The chapter then discusses developments in voting rights under the Help America Vote Act (HAVA), again noting the inevitable interplay between technological developments and law.

Lastly, on the 25th anniversary of the major federal governing statute, the chapter considers the civil rights of institutionalized persons. The very nature of institutionalization has changed in the intervening years, and this presents major issues for reauthorization of the act. On this important anniversary, NCD’s report on this subject, and on the vulnerable and isolated population it effects, is reviewed.

Chapter Three concerns education. Second perhaps only to health, education is the area of public policy undergoing the greatest transformation today as we strive for more effective methods of preparing our population to meet the demands of the 21st century global economy, and as we strive to develop adequate methods for assuring accountability in educational performance and results.

Reflecting the continuing importance of the Supreme Court in clarifying the law and framing the terms of debate, the chapter begins with a discussion of the Court’s Schaffer decision. This case clarified that in disputes between parents and schools over students’ individualized education plans (IEP’s) in special education, the burden of proof rests with the party objecting to the decision, which in most cases will be the parents. The case represents one dimension of the ongoing effort to allocate responsibility and control between families and schools.

Even as the courts were resolving one issue, the regulatory process to implement the IDEA Amendments of 2004 was underway. Accordingly, the second section of the education chapter reviews the current status of four key issues that the new law and its implementing regulations do or will need to address. These issues are: the problem of minority overrepresentation among special education students; the prospects for full-funding (meaning ultimately up to 40%) were of special education costs by the federal government; the extent to which the law does or can assure private school accessibility, especially when federal funds are involved; and issues raised in the law’s application of disciplinary principles to potentially complex emotional or behavioral problems. In regard to each of these, NCD recognizes the delicate balances that must be struck between powerful but occasional conflicting goals, and with this in mind seeks to offer prudent recommendations, based on the best available experience and data, to assist the Education Department and the states in their implementation and elaboration of the law.

As important as the Individuals with Disabilities Education Act (IDEA) may be, it does not exist in isolation from broader educational practices and policies. For this reason, the chapter then proceeds to a discussion of the several critical areas in which IDEA and the nation’s No Child Left Behind Act (NCLB) intersect, overlap, and potentially conflict. Issues considered in this context are: the application of assessment requirements to students with disabilities; the role and utilization of standardized tests and test scores in the education and evaluation of students with disabilities; and the issues surrounding high school graduation rates for students with disabilities. In regard to each of these, NCD notes the extent to which attention must be directed to differences in the way these issues affect the educational outcomes of individuals with disabilities and of schools and school districts. Tensions between standardization and fairness, as mediated by the need for reasonable accommodations and by the assessments being made of schools themselves, form the basis for this analysis and for the substantial recommendations made for reconciling these complex concerns in pragmatic, consistent and principled ways.

Finally in connection with the interplay between IDEA and NCLB, two statutes which need to be meshed and made to work smoothly together, issues relating to the allocation of costs between the two programs are analyzed. NCD knows from experience that only by addressing these issues forthrightly in the implementation of these still new laws can unnecessary controversy, waste and delay be avoided.

Chapter Four turns attention to health care. Perhaps no area of life nor topic covered in this report touches more directly on every other topic than does health. From its connection to employment through the role of employers as major providers of health insurance coverage in this country, to its confusion with disability in the minds of so many, to its increasingly profound economic impact throughout our society, health and more particularly health insurance and health services play an increasing role in a broadening range of contexts and decisions.

Our nation is currently engaged in the process of rethinking many of our traditional assumptions regarding the nature and delivery of health care. Put globally, we are engaged in the process of trying to figure out how innovation can be encouraged and access be broadened and made more equitable, while at the same time maintaining control on upwardly spiraling costs. Under no circumstances can this be easy, but when it comes to applying these principles and goals in the lives of people with disabilities a number of additional complexities, some reasonably well-known, others not, are introduced.

The purpose of this chapter is to clearly identify some of the unique ways in which our questions and their answers have affect Americans with disabilities, and to offer recommendations concerning how the available data suggests these questions can best be answered.

In light of the tremendous emphasis placed on evidence-based medicine today, data on the availability of health care and the outcomes of various modalities and interventions is more vitally important than ever. In this light, the chapter opens with a discussion of statutorily-mandated health data collection efforts that have thus far failed to include people with disabilities among the subpopulations studied and compared. Significant differences exist in the access of people with disabilities to health care. These disparities arise partly from economic and insurance considerations, but also from the inaccessibility of some medical facilities and procedures. Outcomes are likely to differ, and are in need of being measured, as a result.

One of the most important sources of health coverage for many low-income Americans with disabilities is the Medicaid program. This program, because of its rapidly escalating costs, has been the subject of intense scrutiny, particularly with a view to limit the financial burdens it poses. Accordingly, the second section of the chapter reviews the key issues, proposal and activities surrounding Medicaid reform, with a view to assessing their impact on recipients with disabilities and identifying measures that could be taken, consistent with the cost-cutting, fairness and state-flexibility goals of the reform effort, to ensure that the health of Americans with disabilities will not be adversely effected by the changes.

One equity issue that has proved particularly troublesome and that results in different treatment for people with different disabilities is that of mental health parity. NCD has long and fervently advocated for changes to our health care system, experimental and voluntary at first so as to alleviate sincere but misguided cost or other fears, that would demonstrate the viability and lead to the implementation of policies and rules assuring equal access to treatment and benefits for those with mental or emotional as for physical conditions.

The third section of this chapter deals with mental health parity, noting urgent developments during 2005 that make progress toward its achievement all the more imperative. These new imperatives arise largely from our painful experience with and our hard-won new knowledge about trauma. We cannot hope to requite one dimension without paying equal heed to all dimensions of the effects of trauma on individuals.

Of all the new challenges facing the health care system, none has emerged with greater urgency than that of providing adequate care and support to our wounded veterans. Not only the numbers of these courageous citizens but also the nature of their injuries, the extent of the disabilities and the definition of the needs require new structures and new thinking. From better methods to ensure the timely sharing of relevant information among involved federal agencies, to new definitions of disability that recognize the variable and episodic nature of trauma-related conditions and consequences, NCD seeks to draw attention to the issues and needs that must be addressed if we are to honor our commitment to those who have given so much.

Chapter Five of the report focuses on long-term services and supports. Long-term services and supports is one of the least well-defined but yet one of the most important policy areas considered by the report. As our population ages, questions relating to how it is defined, how it is provided and to whom will steadily grow in importance.

In view of our nation’s need to systematically address the issues of income maintenance, community-based services and related matters encompassed in long-term services, NCD produced a major report on this subject in 2004. With that report as background, and with the conceptual framework deriving from the ADA and from the movement in favor of home- and community-based services instead of institutional services and care, the chapter addresses many of the issues that must be confronted, as they relate to individuals with disabilities. The first of these is to recognize their presence among the population in need of long-term services and supports. Although this population is commonly thought of as an aging one, that aging cohort includes many people with disabilities. The population at issue in connection with these services also includes younger persons under the age of 65, almost all of whom are people with disabilities. At the same time, the financial resources of people with disabilities in the LTSS system are likely to be less than those of other persons, both because their earnings may have been curtailed during the working years and because of savings and resource limitations in the income-maintenance and other service programs designed to help take up that slack.

NCD believes that insurance must represent the central component of a national strategy for defining the continuum of LTSS needs and for funding those costs. But the issues confronting the creation of effective and comprehensive LTSS insurance, insurance that goes beyond paying for institutional care, requires attention to the specific needs of people with disabilities, to the lack of any inherent connection between people’s incomes and their services needs, and the implications for public expenditure of emphasizing home- and community-based settings.

As the section goes on to make clear, LTSS insurance must also address other emerging needs and respond to key themes. It must accommodate the need for a high degree of consumer-control, and it must allow for and encourage asset development and accumulation among those who would be eager to take fuller responsibility for their lives if given access to financial or other tangible assets.

Chapter Six turns our attention specifically to children and youth. The chapter begins with renewal of concerns and recommendations that NCD has made before regarding the urgent need of ending the practice of using criminal or quasi-criminal juvenile detention facilities as a custodial strategy for children in need of other sorts of services or care.

The next section of the chapter addresses the intricate web of requirements, state- and private-assistance and incentive programs and tax provisions comprising the nation’s foster care and adoption systems. Serious gaps in the collection of required data are themselves worrisome and make evaluation of the system difficult. But these gaps, together with data that do exist, lead to concerns regarding the ability of the current systems to fully meet the needs of many children, including hard-to-place children with disabilities. A number of specific areas of concern are identified and recommendations are made for measures to determine the effectiveness of current measures and to take further remedial action if required.

The final section of the chapter deals with health care, as this subject uniquely relates to children and youth. Whatever may be one’s view regarding the solutions to the nation’s overall health care problems, NCD believes that comprehensive health care for children is critical to our future, from both an economic and a moral point of view. The issue is discussed in that light.

Chapter Seven is directed to the question of employment. Perhaps no issue has received more attention among people with disabilities, policymakers and scholars than those surrounding the attempt to determine the comparative labor market and employment status of people with disabilities, the effort to decide what works, and the attempt to design new strategies that will yield improved results and that will prove responsive to the demands of a rapidly and dramatically changing labor market. Few can doubt that if the employment rates and career patterns for persons with disabilities could be made more comparable to those of other workers, many of the problems facing this sector of our population could be greatly reduced.

Because of the centrality of statistics to any discussion of employment, the chapter begins with a review of the frustrating statistical vagaries that continue to bedevil formulation and evaluation of employment policy. Three continuing problems continue to impede the collection of satisfactory data. While efforts to fill the gaps continue, it is unlikely that we will have clear answers to many key questions in the near future. Nevertheless, available data do point to the feasibility and desirability of certain measures.

One of the unique features of federal employment policy for people with disabilities is the way services are organized. Two parallel systems exist, a specialized state-federal vocational rehabilitation system (VR) designed to serve the needs of job-seekers with disabilities, and the one-stop employment development system designed to provide integrated and comprehensive services to all job-seekers including persons with disabilities. For the system to work, each of these must function effectively and they must operate cohesively together.

In this light, the chapter proceeds to a discussion of recent findings regarding the need for upgrading of performance monitoring in the VR system. Of additional concern to NCD is the related problem of waiting lists and potentially lengthy delays in service to eligible persons arising from possible short-falls in funding for the VR system. Concern is warranted whether such delays may make the difference between people obtaining and not obtaining employment, and whether they may significantly limit the ability of the VR system to act as a partner to the one-stop system in the manner contemplated by the law. As in past reports, inquiry into these questions is recommended as a means of finding out and in order to remedy the situation if these fears are confirmed.

The third section of the chapter concerns itself with the one-stop centers, in terms of their ability to serve job seekers with disabilities. As outlined by NCD, this ability can be measured in terms of three factors: the accessibility to people with disabilities of one-stop facilities and programs; the capacity of the one-stop centers to assist their community partners in offering comparable levels of accessibility to persons with disabilities referred to them by the centers; and the ability of the one-stops, working through the experimental disability navigator program, to achieve the requisite degree of service and resource sharing and coordination with the VR system, the Ticket to Work program and other disability-specific labor market resources.

The chapter’s fourth section brings the role of the Social Security Administration (SSA) into play. Through its role in administering the SSI and SSDI programs, with their complex economic and medical eligibility rules, and through the linkage of these programs to health insurance coverage under the Medicare or Medicaid programs, SSA has been central to reducing the work- disincentives inherent in the benefits system.

SSA has engaged in a number of experimental and demonstration initiatives designed to minimize the work disincentives and simplify the use of the anti-disincentive provisions in the law. While generalizations are not yet warranted concerning what if anything works to penetrate the existing regulatory morass, NCD remains concerned that the anti-disincentives are so complex as to be unavailable as a practical matter to many people with disabilities who would utilize them if they could be confident that the risks are not too great. NCD is concerned that SSA’s current efforts, while well-intentioned and desirable, may in the end serve only to further complicate the regulatory framework within which individuals, benefits counselors and others must make decisions which, if wrong, are perceived as all too easily resulting in the loss of cash benefits and health insurance without acquisition of stable employment.

Taking a longer view, the next section of the chapter reviews the ways we have tried to strike a balance between employer education and traditional enforcement of the implementation of employment rights laws. NCD believes that a two-pronged commitment designed to maximize the potential of both strategies is necessary for either to be effective.

The final section of the chapter is concerned with innovation in the provision of government services. Specifically, NCD recommends enactment of legislation to protect the jobs of federal employees with disabilities when their positions are privatized. NCD also recommends legislation to enhance the leverage value of federal contracting in bringing about private sector employment of qualified workers with disabilities.

Chapter Eight of this report follows the progress of welfare reform. NCD applauds the steep declines in welfare rolls since passage of the 1996 reform legislation, but the Council is concerned that too narrow or formulaic an understanding of the reasons why some people remain in need of welfare benefits may hinder efforts to lower caseloads even further.

After reviewing the background of congressional efforts to reauthorize the 1996 law, NCD discusses the definitions of work and the requirements for work activity likely to be incorporated into the continuation statute. By adopting a sanctions-based approach to forcing people back to work, and to penalizing states for failure to enforce work requirements rigidly enough, Congress risks overlooking or even exacerbating the real causes of subsisting dependence.

NCD recommends that the law be revised in a way that, while maintaining the central and unswerving commitment to work, more fully recognizes that remaining welfare recipients, many shown by recent studies to be people with disabilities, need a variety of training resources and supportive services, ranging from assistive technology to accessible transportation, if they too are to be enabled to join and remain in the workforce.

Among other things, NCD recommends that the statutory definition of work, and the work requirements that will meet the federal requirements, reflect that intensive participation in necessary specialized training needs to be viewed as an acceptable work activity, at least for a period of time, if employment is to be achieved. NCD notes that the hard-core temporary assistance to needy families (TANF) recipients may well be composed of a high proportion of people with disabilities, hidden or evident, or of people with primary caregiver responsibilities for family members with disabilities. Until the unique needs of this population are addressed, utilizing a variety of existing resources and services in a coordinated fashion, it is not likely that the goal of productive work will be achieved, even if they are dropped from the welfare rolls.

Chapter Nine is housing. Safe and affordable housing, reasonably convenient from one’s place of work, is becoming an issue for more Americans, even as home ownership rates approach record high levels. For people with disabilities, housing presents issues of affordability, accessibility, discrimination and location that make it even more of a problem. Moreover, the interactions between housing, transportation, employment and community participation have become increasingly evident to advocates and policymakers in recent years. NCD has explored these interconnections in its previous reports.

This year’s status report begins its review of developments in housing with a discussion of major fair housing civil rights settlements during the year. Noting that almost all major enforcement occurred through settlements and that all major settlements arose from citizen complaints, NCD expresses concerns arising out of these circumstances. Principally, these concerns relate to the need for government to be more proactive, both in the identification of housing discrimination and in the monitoring of settlements to ensure compliance. Although complainants must be the primary monitors of compliance with the terms of settlements, responsibility for vindicating the public interest in such compliance should not rest on private parties alone. NCD finds that the Department of Justice and the Department of Housing and Urban Development need to do more to make sure that the terms of consent decrees and other settlements are carried out and sustained.

Based on several reports, NCD also expresses concerns over fair housing complaint intake and processing. Owing to a number of factors, grounds exist for concern that the case-handling process may not be able to maintain the full trust and confidence of the citizenry on whom the government is principally relying for information and for follow-up.

The next section of the chapter concerns itself with homelessness. Natural disaster has brought us both a new awareness of the ways homelessness can occur, and new opportunities for building accessible housing stocks and livable communities. In that light, NCD urges Congress and the administration to take a variety of measures aimed at ensuring first that temporary or emergency housing, such as trailers, provided to storm survivors will be accessible wherever possible. Beyond that, measures are urged to ensure that accessibility is a required and fundamental feature of new construction and community renewal in the hurricane-devastated areas, and in any other areas that may in the future fall victim to natural disasters.

The chapter also addresses problems of chronic homelessness, problems of a more familiar but perhaps also of a more intractable nature. In reviewing the variety of statistical data sources required to be collected on the subject, NCD is particularly concerned that existing data-gathering instruments and reporting requirements may be inadequate to give an early warning of any rise in the number of homeless veterans, particularly homeless veterans with disabilities, among the homeless population. If the country is to avoid repeating its failure to adequately meet the needs of injured and traumatized veterans of the Vietnam era, it is important that sentinel data of the kind that veterans’ homelessness would yield be quickly and accurately collected.

The next major issue addressed by the chapter relates to the rental assistance programs currently operated through HUD. In previous reports NCD has discussed the budgetary issues of these programs and other issues in their design and operation which bear upon their effectiveness for and their relevance to person with disabilities.

In this year’s report, in light of a commendable campaign to wipe out fraud and abuse in the rental programs, NCD raises additional issues. NCD is concerned that though not intended to do so, innocent rental-assistance recipients with disabilities may fall under suspicion. This is because of the complexity surrounding the calculation of “adjusted income.” Housing subsidies in these programs are generally calculated based on a percentage of adjusted income, but how income is to be adjusted (and how serious unintended consequences can be avoided in the interaction of complex housing program rules with equally complex but rarely cross-referenced medical-assistance, income-support, food-assistance and other program rules) remains far from certain. Accordingly, NCD urges interagency efforts aimed at identifying and clarifying all points of possible overlap or contradiction between and among the rules governing all these programs, as they operate in the lives of individual recipients.

Lastly the chapter deals with home ownership. Recognizing the universality and the symbolic power of home ownership in the fulfillment of the American dream, NCD praises the administration for its role in bringing about historic increases in the national home ownership rate. At the same time, the New Freedom initiative has yet to document comparable increases in levels of home ownership among Americans with disabilities. NCD therefore calls for measures aimed at understanding what the barriers are and at finding means for their eradication.

Chapter Ten deals with transportation. In June 2005 NCD issued a major report on the state of transportation for persons with disabilities in this country.

Transportation is unique among the topics covered in this report in that it is both a means and an end. We seek to have effective and accessible transportation options and resources for communities, because transportation is the primary means by which we avail ourselves of education, employment opportunities, health care, even housing. Without transportation, none of these other goals and services can be achieved for the great majority of people, disabled and nondisabled alike.

For persons with disabilities, transportation presents a number of issues not encountered by other citizens. From the need for accessible vehicles and nondiscriminatory services, to the role of paratransit, to the importance of adequate transportation in maintaining community living and avoiding unnecessary institutionalization, these complexities must inform discussion of all transportation-related policy issues.

The chapter begins with a discussion of ADA and related civil rights and access issues in surface transportation. In particular, NCD commends the Department of Transportation (DOT) for going beyond vehicle and station-design compliance issues and beginning to consider to carry out assessments of public transit services under the ADA. For example, it is not enough for vehicles or stations to be accessible if timetables and route information are not.

Nonetheless, NCD continues to commend the DOT for promulgation of new guidelines clarifying and updating accessibility requirements for physical design. However, promulgation this year of guidelines for new station platform design leads NCD to wonder how the pace of retrofitting existing stations for accessibility can be speeded up. Recognizing that public funds are not available to expedite this process to a pace that many advocates, and probably most transit agencies, would consider acceptable, NCD urges the Department of Transportation to convene experts and advocates to identify possible strategies involving private sector partners, the tax system and other resources for use in accelerating the accessibility of the existing facilities of public and private transit operators.

The chapter next turns to recreational sea travel, commending the Supreme Court for its Spector decision holding that the ADA covers cruise ships doing business in U.S. ports. Based on the legal clarity provided by Spector, NCD urges the DOT to take measures to ensure both the broadest possible accessibility of recreational shipping to persons with disabilities and the competitive equality of American carriers with foreign carriers who may operate under weaker or no accessibility requirements in their countries of registration.

Among specialized transportation services designed for people with disabilities and others prevented by age from using fixed-route public transit or from driving, paratransit is the largest and most well-known. NCD commends the DOT for issuance of guidelines clarifying the responsibility of paratransit to provide door-to-door service where required, not merely curb-to-curb as some have believed. But as important as these clarifications are, NCD also expresses concern that they may inadvertently worsen another underlying problem and put more stress on an already hard-pressed system.

At issue here is the fact that eligibility for paratransit services cannot be predicated on financial considerations. This means that financially strapped transit agencies may attempt to use other permissible eligibility criteria to cloak decisions that are being made simply on the basis of scarcity of resources to meet growing demand. Paratransit agencies are vested with sufficient discretion under criteria for trip-by-trip or overall eligibility decisions as to make such confusion readily possible and all too understandable. Out of this concern, NCD urges measures to determine the extent of such practices and to address them if they are found to be widespread.

A number of other innovative transportation projects, including programs aimed at enhancing the availability of transportation needed by people to get to and from jobs, and including programs operated under the auspices of the NFI, are identified and commended. A number of these are recommended for permanent inclusion in federal authorizing legislation and budgetary appropriations.

The final major section of the chapter deals with air travel. Although supportive of DOT initiatives such as the inclusion of disability-related concerns in customer-service performance reviews of commercial airlines, and although also supportive of the Department’s efforts, begun in a late 2004 NPRM, to overhaul and update its regulations implementing the Air Carrier Access Act (ACAA), NCD has grown concerned with the pace and scope of this overhaul.

A major problem identified by NCD in past reports is the accessibility of e-ticket machines, luggage-inspection and other automated, self-service equipment being increasingly deployed at airports. Many of these devices pose transportation barriers to people with one or another disability, and few if any of them appear to be field tested under real-time conditions by passengers with disabilities.

NCD had believed that the NPRM would provide an appropriate basis for developing procedures for testing and rules for defining and assuring the accessibility of such equipment. But no indication of DOT follow-through in this area has been discovered. Accordingly, NCD reiterates its recommendation with renewed urgency, for once such equipment is deployed, the opportunities for its retrofitting will, as a practical matter, be small.

In a similar vein, DOT has yet to take action to apply the ACAA to the range of web sites which increasingly represent the means for buying tickets, requesting seating assignments and services, or otherwise obtaining the opportunities and benefits of air travel. While web sites are constantly being revised and updated, making the introduction of accessibility less problematic than with the case of hardware devices, real people are experiencing exclusion and restricted opportunity with each that inaccessibility is allowed to continue. Therefore, NCD has again urged DOT to adopt the necessary regulations as part of its ACAA update process.

Chapter Eleven is assistive technology and telecommunications. It should come as no surprise that developments in technology and communications now play an increasingly important role in the lives of people with disabilities, defining options and mediating opportunities, just as they do for other Americans in this information age.

The chapter begins with a section on assistive technology (AT) research. Publication in 2005 of an AT compendium is discussed, and the uses of this documents, including its role as a basis for further key research, is discussed.

In reviewing a 21st century AT research agenda, NCD notes the importance of going beyond engineering and technological research itself in favor of a broader research agenda designed to maximize our understanding of the social and economic impact of AT. Without such data and without attention to the distribution system, technological advances will take far longer to be transmitted to the public and key cost benefit and resource allocation decisions cannot be made with accuracy or confidence. NCD recommends means for beginning to define and gather the necessary data.

The next section of this chapter deals with federal procurement. Section 508 of the Federal Rehabilitation Act provides for the purchase of accessible electronic and information technology E&IT by the Federal government in its purchase of such technology for its own use. As such, powerful positive leverage is brought to bear on behalf of encouraging design advances by private sector competitors for these contracts.

NCD has grown increasingly concerned because of the failure of the Department of Justice to issue periodic monitoring reports on implementation of section 508, as specified in the law. In light of recent research indicating possible deterioration in the accessibility of public-sector web sites, NCD regards resumption of regular monitoring reports as especially critical. NCD also believes that, consistent with the full scope of the law which covers web sites, hardware and software, subsequent monitoring reports should not be limited to the evaluation of Federal web sites, as was the almost exclusive focus of DOJ’s earlier reports.

The chapter next turns to a number of telecommunications issues falling under the jurisdiction of the Federal Communications Commission (FCC). The first and most broadly encompassing of these is broadband. Access to broadband is becoming increasingly basic to all web-based activities of commerce, employment, and social life.

Prior to getting to the specific legal and regulatory contexts in which pro-accessibility development of broadband can be encouraged, NCD has felt it necessary to put to rest a common myth. Although economic and geographical factors often determine the availability and cost of broadband service, these variables have nothing to do with the access issues confronting people with disabilities. This is easily seen in the fact that people with sufficient means living in fully “wired” communities are nevertheless unable to access broadband if it is not designed and delivered with accessibility in mind. Thus they are placed in the same position as people living in underserved areas.

Among the specific issues arising in any consideration of broadband, perhaps the most well-known relates to Section 255 of the Telecommunications Act. This provision requires that telecommunications equipment and services be accessible, where readily achievable. Despite this relative non-demanding standard, NCD has frequently expressed its disappointment over the failure of the FCC to make any serious effort to monitor compliance with the law or to achieve its enforcement. A 2005 Supreme Court decision vesting increased discretion in the FCC over the definition of “information services” leads to the conclusion that no remedy currently exists in law to compel the FCC to apply Section 255 more vigorously. With this reality in mind, NCD has called upon the FCC to make clear its views regarding where Section 255 fits on the spectrum of “telecommunications services” (which are covered by Section 255) versus “information services” (which are not). NCD has called upon the commission to indicate how it intends to secure the access rights of people with disabilities to new telecommunications technology, if the commission believes that such technology is not covered by Section 255.

Closed-captioning is an area of FCC responsibility perhaps as well-known as any other that affects people with disabilities. While commending the commission for its vigor in articulating and enforcing content requirements for captioning of TV programs, NCD is concerned about a number of potential threats to captioning. In addition to technical threats associated with reallocation of the spectrum and use of digital communications, NCD has expressed concerns, based on complaints filed by consumers and upon additional anecdotal reports, that the quality of captioning may be in danger of eroding. For this reason the Council supports legislation to train qualified captioners to meet growing real-time demand.

A final area of concern is the e-rate program under which funds are channeled to schools and libraries for the purchase of telecommunications technology and access. A GAO report presented in 2005 highlighted failures in the FCC’s governance of the e-rate program, including a failure ever to specify exactly which federal regulations or policies apply to the use of e-rate funds. If, as NCD believes warranted, FCC reaction includes formulation of clearer policies on the obligations of subsidy-recipients, NCD hopes that the FCC will include accessibility, as required by a number of laws, among the values that the e-rate program is intended to support.

Chapter Twelve brings us into the arena of international affairs. It begins with a discussion of America’s unique world leadership position in the area of opportunities and rights for, and inclusion of, its citizens with disabilities. This uniqueness consists in two things. First, it is a function of the vast experience America has amassed, and the constructive attention it has long paid, to these issues. But second, and in this day and age perhaps as important, America’s unique leadership role derives from its being a case of leadership by example. There is little economic or other power we can bring to bear on behalf of access and equality in this area, yet our leadership in these realms is widely accepted and respected, even by many who might challenge us on other grounds. Accordingly, the report begins with a discussion of the origins and implications of this remarkable status and role.

The next section of the chapter deals particularly with the nation’s foreign aid and international development work in health promotion. While praising the humane and far-sighted recognition of the importance of health promotion, NCD is also concerned to ensure that key distinctions between illness and disability not be overlooked in the conduct of this important work. NCD recommends that persons leading lives with chronic medical conditions or disabilities, especially persons saved from death by medical advances or treatments supported with U.S. funds, be recognized in terms of their need for rehabilitation and access. As part of the health promotion programs, the functional status and the opportunities of people with disabilities must be addressed in an integrated and coordinated fashion.

The third area addressed in this chapter is the UN Convention on the rights of people with disabilities. NCD has provided numerous and in-depth technical assistance papers and consultations, designed to assist the delegates to the AD Hoc Committee drafting the convention for submission to UN member nations. In part through this assistance, NCD believes that a treaty of high quality and enduring value, enshrining American values and validating much of our experience, will emerge.

Mindful of understandable hesitancy about the convention, NCD urges the administration and Congress to sign and ratify the treaty, confident that if signed and submitted to the Senate, any serious defects that might exist would be quickly identified and disclosed.

The fourth and final section of the chapter deals with the role of accessibility and of the rights of people with disabilities in international commerce and travel. The section addresses a number of issues in the context of ensuring that America’s leadership in access and opportunity will be a benefit, not only to the citizens it serves, but to the businesses and other institutions that have made the effort to make their goods and services more inclusive. A variety of means are suggested for ensuring that inadvertent competitive disadvantage is avoided, and for strengthening requirements for a level playing field that will increase the likelihood that competitors from other nations will be held to the same high standards as American entities are committed.

Chapter Thirteen is homeland security. The past year has witnessed a profound change in our understanding of the homeland security challenges our nation faces, elevating natural disaster alongside human-made tragedies as a cause of possible devastation.

Amidst the key questions posed by NCD is that of whether people with disabilities suffered disproportionately to their fellow citizens, and if so why, and what can be done to prevent such disparities, as we strive to prevent and minimize all suffering, in our planning for future eventualities. Based in part on its eerily prophetic report Saving Lives: Including People with Disabilities in Emergency Planning [1] that preceded the disaster, and on data emerging in the storms’ aftermath, NCD believes there is ample basis for believing that suffering was proportionally greater for people with disabilities than it need have been.

Issues of infrastructure played a large role. To the extent that emergency communications, transportation, evacuation facilities and other resources are not accessible, it becomes progressively more difficult for people with disabilities to utilize or benefit from them.

As painful are the lessons of our preparations for and responses to the hurricanes, the real question must relate to how and what we do to prevent similar disasters and loss in the future. With this goal in mind, the chapter proceeds to a discussion of how people with disabilities and issues of concern to them can and must be incorporated in our broader disaster relief and planning efforts. NCD places great emphasis on the planning process itself, recognizing that, as with all groups who have specific concerns or face unique barriers, participation in the planning process represents the best means for ensuring that their concerns will be heard and taken into account.

MAJOR TRENDS

An addition to this annual status report over the past two years has been the inclusion of a major trends section. This section is designed to identify key themes in disability policy and to relate the year’s major disability issues to broad themes in public policy and program administration. In each of these previous sections, NCD has sought to emphasize the key choices and decisions that our nation faces with and for its citizens with disabilities, as these decisions relate to ways we are defining or going about solving other problems. But rarely in modern history have we stood at more important or fateful crossroads than we do today.

(a) Applying the ADA to the 21st Century

Presentation of this report on the 16th anniversary of the signing of the ADA offers an occasion for analyzing the role of this historic civil rights law in contemporary policy discussions. As reflected in almost every chapter of this report, there are two ADA’s: the ADA as a law to be enforced, and the ADA as a source of technical assistance and guidance. As such, the complexity and scope of this law give ample scope for it to be seen as a tool for requiring appropriate behavior and as a platform for fostering broad awareness and change.

But for the law to be effective in either of these contexts, key issues of its application to the modern world need to be addressed. As commerce shifts more and more from a location- to an internet-based format; as contractual, temporary and multi-career employment patterns replace traditional career paths; as the interagency dimensions of most problems become clear; and as private sector partners are given broader discretion to experiment and innovate in the implementation of traditional public programs, questions about how, whether and by whom the ADA should be applied become both more vexing and more critical.

Because many people still fear or misunderstand the law, or resent its perceived potential for government intrusion, supporters of the law have been understandably reluctant to risk its narrowing by opening it to major updating. A stalemate appears to exist in which supporters and opponents alike agree to leave the status quo alone. Meanwhile, technical updates, including most notably the recent revision of the ADA Standards (the ADAAG) [2] point the way to the kinds of consensus building efforts that are necessary to keep the law relevant and vital.

Based on NCD’s recommendations as embodied in the ADA Restoration Act, [3] the Council believes that effective policymaking can accommodate a broad range of concerns and interests. As such, NCD believes that modernizing the ADA may well represent a case study for broader efforts that are clearly needed in other areas if governmental expenditure and efforts are to be rationalized, coordinated, evaluated and made fully cost effective.

(b) A Time of Scarcity

In the area of domestic programs, austerity will increasingly be the watchword for the foreseeable future. Resources for new initiatives, even resources for maintenance of current efforts, may be difficult to command. People with disabilities understand and fully accept, as all citizens do, this unpleasant fact. But rather than seeing it solely as a cause for disappointment and sadness, NCD believes that budgetary constraint can provide the impetus, all too sadly lacking in the past, for bringing coherence and coordination to the mass of often conflicting, over 200 disability-oriented programs spread over approximately two dozen federal agencies, and involving the expenditure of several hundred billion dollars per year.

As reflected throughout this report, expenditure control coupled with heightened attention to accountability has become central features of government policy. These twin priorities have already affected a number of disability-related programs, as well as the role of mainstream programs in the lives of people with disabilities. But application of these new imperatives is not simple or straightforward.

Until program stakeholders and program operators can achieve clarity in defining the goals of each program and as to the proper criteria for evaluating programs, the results are likely to be haphazard and in the end likely only to add to disruption and uncertainty.

(c) Accountability in Disability Programs

Consistent with all other programs, those designed to specifically impact the lives of people with disabilities need to be rigorously and regularly evaluated. No waiver of accountability is possible or desirable. But this does not mean that mechanical tests such as number of people served per dollar spent can be applied reflexively. Nor does it follow that devising accountability standards to meet the program or situation at issue constitutes the introduction of undue subjectivity or inconsistency into the process.

Based on its knowledge of many disability-related programs, NCD believes that the worthiness of their goals and the soundness of their methods will reward any evaluative scrutiny that is undertaken with knowledge of the issues and history involved. Many other program, even if well-run and effective in achieving the goals, no longer embody objectives that command a priority in the allocation of scarce public resources, and such programs will likewise be revealed through the application of well-designed evaluation procedures.

(d) Specific Evalutation Issues

Within the widespread discussion of what criteria should be used to evaluate domestic spending priorities, there is often a lack of recognition of some of the unique factors that underlie implementation of full and meaningful accountability in disability-oriented programs. One issue is the question of cost-benefit. For the achievement of any given benefit, whether it be education or employment, transportation or housing, the per capita costs of success or accessibility are likely to be somewhat larger in application to people with disabilities than other persons. Partly this is a simple matter of economy of scale. There are more people without disabilities in almost any comparative setting. Partly it is because of the need for accommodations (such as lift-equipped buses), specialized services (such as special education), or assistive technology (such as computer access software). But without some sound baseline for anticipating what the relative costs of such services and technology should be, how is the cost effectiveness of programs that provide them to be assessed? Moreover, how are longer-term or indirect savings to be measured and factored into the equation?

The accountability and cost-cutting effort, as it relates to all programs, has thus far developed along limited lines. Currently, costs are all too often assessed in a static framework or even a vacuum, meaning that appropriated funds are considered in a program by program way, with the result that no reliable methodology yet exists for measuring the long-term impact on other costs of proposed expenditures or expenditure cuts. Similarly, costs are reckoned from the standpoint of institutions and entities that have the means to identify and publicize their costs, but rarely if ever from the standpoint of unaffiliated individuals for whom aggregate costs or benefits might be quite considerable. This problem has been widely publicized in the area of environmental regulation over recent years, where efforts have been made to weigh the costs of proposed measures against the health savings or increased longevity that arguably would result from them. But in the area of disability policy, little progress toward developing credible methodologies has taken place.

Throughout this report examples are cited of attempts to balance the concerns of government and private entities for cost versus the potential economic or other benefits to people with disabilities or to the taxpayers of various measures or programs. But too often these balancing efforts remain speculative only, and they are resolved by power or by public attitudes rather than by data gathered in the service of clear criteria.

As resources become scarcer across the spectrum of domestic programs, we cannot rely on a conflict model for the resolution of the increasingly painful allocation decisions that lie before us. While the political process is designed to help resolve disputes over values and priorities, the issues before us can no longer be resolved by struggle and conflict. In a complex interdependent society there can be no absolute winners or absolute losers. The scientific knowledge and goodwill that we possess must be turned to the task of making the most intelligent and transparent decisions among the host of alternatives and difficult choices that confront us.

(e) Innovation

One of the chief themes in domestic programs today is that of experiment and innovation, involving new methods and new partnerships. In the area of disability this is powerfully illustrated by President Bush’s New Freedom Initiative (NFI). In furtherance of deeply felt and broadly shared goals for full participation and access to opportunity for Americans with disabilities, the NFI has encouraged innovation and experimentation in many areas, from self-directed services under Medicaid, to the United We Ride experiments in transportation, to the fostering of evidence-based practices in many areas.

Many of these initiatives have been implemented through discretionary funding initiatives, and the granting of waivers to facilitate flexibility in the rules ordinarily governing program operations or expenditures.

The accountability and outcome-measurement standards applied to these demonstration projects, experiments and initiatives are of great importance. So too is their transparency, and the dissemination of results. The administration, through a number of web portals, [4] has made tremendous progress in bringing information about a wide range of programs and services to the attention of people with disabilities, their families and other interested persons. But information about the ever-changing range of experiments, about the criteria used to create them, and about the standards used to evaluate them is yet to be fully developed.

With resources scarce, it is important that advocates and policymakers know what the Social Security Administration (SSA) believes to be the results and the cumulative lessons and findings of the various demonstrations it has conducted. The public and policymakers need to know when and how the Center for Medicare and Medicaid Services (CMS) will seek to institutionalize or standardize methods for increasing consumer control of Medicaid or other decision-making.

The value of innovation is potentially unlimited, but unless the nature of current or prospective experiments and demonstrations is widely discussed, and unless their results and implications are widely known, much of this potential may go unrealized and opportunity for smoothly incorporating findings into broader policy may be overlooked.

(f) Timing

One area where innovation remains urgently needed relates to the timeframes over which cost-benefit assessments and accountability determinations are made. As reflected in the 2005 interim report of the President’s National Medicaid Commission, opportunities for cost and savings were permissible for consideration only if they had been “scored” by the Congressional Budget Office (CBO). Scoring, whether by CBO or by the Office of Management and Budget (OMB) within the executive branch, is vital to the kind of integrity and transparency discussed above. But scoring is limited by factors going well beyond the accuracy or the relevance of the information.

Among other things, scoring is limited in how many years into the future projections can ordinarily be made, even when the projections are based on generally-accepted auditing principles.

For many disability programs, no less than for education and workforce development programs generally, the real benefits to society, in terms of heightened incomes, reduced dependency, lessened social problems, even improved health, are undisputed but are measurable only over the course of many years, even over the course of a lifetime. We know that high school graduates earn far more over the course of their working lives than those who drop out, and it is partly on that basis that we fund public education. We do not make each student prove their individual likelihood of repeating that pattern as an eligibility condition for access to education. Yet such exceptions to the technicalities of and to the limitations imposed by scoring are far less common in disability programs.

(g) Conflicting Trends

Two major trends thus find themselves in collision: the long-term trend of assuring the accessibility and availability of basic opportunities and resources for all people, versus the increasing need to target program resources to those who most need them. All too often, people with disabilities find themselves sandwiched between these powerful colliding imperatives.

This is perhaps best exemplified by the one-stop career centers discussed in Chapter Seven. One-stop centers are designed to serve all job seekers, but the costs of facility, communications and program accessibility, along with the lack of knowledge concerning the issues confronting many job-seekers with disabilities, have resulted in some short-fall in the ability of one-stops to be as inclusive as intended. Thus individuals with disabilities are in many cases remitted to specialized programs such as vocational rehabilitation (VR) in which they must meet various eligibility, need, and potential-benefit requirements in order to receive services. Moreover, if the o-stops are evaluated based on the proportion of service-users who obtain employment or their per capita costs of service, economic and administrative disincentives to serving potentially harder-to-place individuals with disabilities may exist.

(h) Partnership and Collaboration

One thing is demonstrated by the attempt to create seamlessness among the several specialized employment systems for people with disabilities (including VR, Ticket to Work, Social Security waiver, supported employment and a few others) and the mainstream employment development system. It is a very difficult process.

One experimental strategy being tried is the Disability Program navigator, a liaison position created within one-stops to make certain that their staffs are best able to serve people with disabilities. Whether adding a new layer of personnel and a new set of functions will solve the problem remains to be determined. Likewise, whether the growing complexity of rules governing various programs can be made comprehensible or can be offset by our investments in advisory and technical assistance resources (such as the various protection and advocacy (P&A) programs remains to be determined.

The trend in question is to make laws and programs more complex but to invest correspondingly more effort and resources in informational resources designed to make the programs understandable and viable. But whether this strategy is working is itself a question worthy of fundamental evaluative research.

In the end, as we have seen in other areas of our national life, integrated planning and shared responsibility, between and among agencies and levels of government, represents the only way of assuring that programs will not work at cross-purposes or push people in conflicting directions.

No one should underestimate the enormous difficulty involved in developing and implementing integrated planning tools and sophisticated evaluation methodologies that take account of these realities. Yet once again, even we do not, only further arbitrariness and irrationality are likely to emerge.

OMB procedures designed to foster intergovernmental review [5] do not appear to have had much impact in resolving this problem. To use an example cited in Chapter Nine on housing, it is unlikely that current intergovernmental review processes would identify rules governing the award of housing subsidies that operate to offset savings opportunities conferred by the SSA under the SSI program.

It is likely that procedures aimed at increasing intergovernmental review and joint efforts between and among government agencies, through formal agreements or otherwise, will continue and expand. One way of giving more substance and weight to such reviews might be to require coordinate agencies not merely to give their approval or sign a memorandum of understanding (MOU) but to identify and comment upon all known points of probable interaction or impact between the program being reviewed and those that the reviewing agency operates.

In connection with private sector partners too, much can be done. The involvement of the banking and financial sectors with assistive technology loan funds, [6] of technology companies with accessibility research, and of many industries in a variety of matching funds efforts touching upon almost every policy area—all of these are examples of how a growing trend is being applied in areas of particular concern to people with disabilities.

Consumer financial education and financial literacy are key elements in any effort to empower individuals with disabilities. Involvement of such diverse partners as the Federal Deposit Insurance Corporation [7] to the Money Smart curriculum and the credit union movement [8] reflect extension of partnership concepts in ways that must continue to develop and expand. Accessibility of such information and of the places where it is provided, as well as customization of training materials to reflect the complexities associated with participation in needs-based programs are all necessary if these partnerships are to be effective in the disability community.

Similarly, the partnership with community and grass-roots organizations, through the Volunteer Income Tax Assistance (VITA) program, in bringing tax preparation assistance to people with disabilities is an important step in helping to bring more people with disabilities into the financial mainstream. As we continue to look for new partners and new partnerships to advance national goals, we must be alert to the nuances that will determine whether these efforts are as inclusive as we would wish them to be.

(i) Asset Development

Over the past decade, an increasing focus in attempts to break the cycle of poverty has involved the piloting of strategies for facilitating asset development among low-income Americans. With the emergence of the values of the ownership society, these efforts are likely to continue. But when it comes to the application of asset development strategies on behalf of low-income Americans with disabilities, a number of additional complexities are encountered which have yet to be systematically addressed.

Although precise statistical data are not available, there is likely to be a considerable overlap between low-income persons with disabilities who could benefit from asset development, on the one hand, and people who are currently or periodically receiving benefits under various cash and in-kind service programs, on the other. Central to the design of all these major benefit programs—from Medicaid to food stamps to SSI to Section 811 housing vouchers—is strict means-testing designed to ensure that only those most in need of the assistance and most closely fitting the profile of those intended to be served will in fact receive the aid. Thus far, efforts to reconcile these needs-based restrictions with asset-development goals appear to have proved relatively ineffective. Accumulation limits generally bear no relationship to the sanctioned goals for which the individual development accounts (IDA’s) or other matched fund accounts are authorized. It is in the huge gulf between what one is allowed to save toward purchase of a home and what home down payments actually cost, in the shadows between what one is able to earn without forfeiting Medicaid or Medicare and what one needs to earn before being able to afford private sector insurance, and in the contradictions between programs that encourage asset accumulation and programs that punish it, that the future of asset development for people with disabilities will be decided.

A classic example will show how widely-favored asset development strategies are unavailable to, and even dangerous for, many people with disabilities. The earned income tax credit (EITC) [9] is an important source of funds for low-income working families, primarily those with children. EIC refunds are excluded from consideration as income under SSI. This means that an SSI recipient who receives an EIC payment will not risk any loss of cash benefits or Medicaid health insurance coverage by reason of the income involved. But nine months after the refund is received, it is subject to consideration as resources, meaning that if it pushes the recipient over the limit for countable resources, typically $2,000 for a single individual, it could result in benefit or coverage curtailment. Of course, there are ways, exceedingly complex for the most part, involving combining the EIC with an IDA or with a plan for achieving self-support (PASS) or with any of several other vehicles for sheltering savings, but anecdotal information reaching NCD suggest that few if any recipients are eager to risk the uncertainties and face the complexities of trying to combine so many laws and systems. For them, it may be far better to spend the money or to conceal it.

If self-sufficiency for people with disabilities is truly our goal, we must therefore implement current trends in two specific ways. First, consistent with our commitment to employment as a principal engine of economic growth and as the key pathway to self-sufficiency, we must ensure that the resources are in place that will maximize the ability and opportunity of people with disabilities to work. Second, as an adjunct to employment, and for those who cannot work, we must find ways to leverage public benefits, savings and other resources and potential asset sources in order to bring about the aggregation of meaningful assets over the course of time. Given our commitment to these goals for the population at large, we can hardly expect less for citizens with disabilities and their families.

(j) Conclusion

The dramatic policy choices that our nation is now making are a source of great anxiety to many. Depending on what we do, they can be the occasion for widening of the gaps, economic and social, between people with disabilities and others. But grasped for the necessity they reflect and the opportunities they create, these decisions and the trends underlying and amplifying them can lead to bold and energetic measures that will reshape the way Americans with disabilities live in the most positive and inclusive ways. The choices are ours.

Chapter One—Statistics

Introduction

Statistics are more and more recognized as the foundations of policy. From evidence-based medicine (which seeks to subject treatments to a rigorous standard of proof), to the Office of Management and Budget’s (OMB) Program Assessment and Rating Tool (PART) system for evaluating the effectiveness of federal programs, to the annual projections by the Social Security trustees as to the solvency of the trust fund, statistics are at the heart of what we do and statistics provide the framework for our debates and choices.

In few areas have statistics been more important or more elusive than that of disability. As demographic changes lead to a growing association of disability with advancing age, and as environmental catastrophes and armed conflict produce new people with disabilities, the importance and complexity of accurate data can only increase.

When it comes to disability statistics, great energy and attention have been lavished on the quality of data our government collects. Issues surrounding the quality of statistical and demographic data have been regularly addressed in NCD’s prior reports. Issues relating to the accuracy of data on unemployment, data on health status and outcomes, data on educational participation and attainments, and data on the total incidents of disability are among the areas that have received the greatest attention and that have the greatest significance in the formulation of policy. Readers interested in further background on these issues are urged to review NCD’s annual progress reports for the past three years. [10]

As NCD’s analyses have made clear, much of the debate over data accuracy and completeness reflects conceptual and organizational problems in the formulation and utilization of the right questions.

The formulation of questions is critical for obvious reasons. One of these is that the questions we ask serve to indicate our notions of what is important.

The questions and answers through which statistics are created are implicated in every chapter that follows in this report. With that in mind, this chapter examines some basic statistics and some key issues relating to their collection, validation and use. The chapter begins by discussing disability statistics that are legally required to be collected. The chapter next considers recent developments with the Census. Following that it examines labor market data. Next, the chapter discusses the statistical dimensions of efforts to track quality of life indicators. Finally, the chapter considers issues inherent to all data collection as they relate specifically to people with disabilities, and recommends fundamental research designed to clarify and rationalize our current and future practices.

(a) Legally-Mandated Statistics

Chapter Four of this status report will address health disparities data that the law requires to be collected and presented to Congress on an annual basis. That chapter reports on the fact that the disability-related portion of this data has not yet been collected. Likewise, last year’s report [11] discussed the failure to gather child-abuse data, as also required by law.

NCD is pleased to note significant progress during 2005 in the collection of the child-abuse state data. In connection with health disparities data meanwhile, a working group, spearheaded by the Agency for Healthcare Research and Quality (AHRQ) is also expected to make progress on resolving the health disparities data issue.

But as important as these successes are, they raise the question of what other statutorily-required and critically necessary data are going unreported. For the sake of gathering all key data and enforcing the law, and for the sake of identifying and removing data collection requirements that may be unwieldy, duplicative or irrelevant, NCD recommends that OMB undertake a comprehensive statutory review, aimed at identifying all disability-related data-collection requirements in current federal law, and followed-up with an assessment of the current status, usefulness and viability of each.

(b) The Census

As with other population and demographic data, one of the chief instruments for collecting information about who we are is the Census. The Census is best known through the major counting process that takes place each ten years, as specified by the Constitution. [12] But Census Bureau activities include a number of other ongoing surveys and other data collection efforts. These track population movement, shifts and other changes and patterns over time. They also provide a forum for asking new questions that have become important to us. Over the past twenty years, the role of the Census Bureau in tracking disability data, especially data bearing on employment, has been increasingly recognized. Efforts to improve the relevance and quality of that data, as discussed in NCD’s prior reports, have been a focus of advocacy, experimentation and methodological discussion.

According to current plans, the nation’s every-ten-year census will be changing dramatically in 2010. Among other changes, it is expected that the long-form census questionnaire, distributed in recent decennial census surveys to selected households, will be replaced by an ongoing inquiry, the American Community Survey (ACS). [13] The ACS is not new, but these plans reflect its expanded role and growing importance.

The ACS has contained and will continue to contain a disability question. [14] The significance of this question and the importance of making it meaningful and informative are heightened by the growing role played by the ACS as a whole.

NCD is pleased to have had the opportunity to participate in the effort to formulate the new ACS. It is currently being field tested. [15] NCD recommends that the results of this field testing be shared with the disability community, and that opportunity for input and further refinement based on the results of this field testing be made available.

One of the key issues in the development of the ACS is the extent to which it captures reliable employment data. Through use of various self-reported questions that ask respondents to say whether they experience disabling conditions that prevent them from working, the Census Bureau has collected data over the years which, though valuable, are regarded as too subjective or uncertain to be useful in the formulation of public policy. The concerns about this data have been spelled out in earlier NCD reports. Suffice it to say, self-reported data of the kind the Decennial Census and the ACS have collected are questionable for three fundamental reasons. First, such data rely on the assumption that people will use the same standards in deciding whether they have a disability. Second, they assume some objective or predictable connection exists between people’s assessment of their physical or mental conditions and their ability to work. And third, such data assume that people possess sufficient information to know the range of jobs available or the kinds of assistive technology or support services available to enable them to work.

But what may be even more important about these data is the light they shed on our deeply-held policy assumptions regarding the connection between disability and work. Questions focusing on assessments, subjective or otherwise, of the connection between impairment and work reflect this assumption. Would it not be just as reasonable to ask people with a self-reported physical or mental limitation whether they have encountered employer attitudes or practices that either enhance or interfere with their ability to work?

(c) Labor Market Data

Another important source of disability-related labor-market data is the Current Population Survey (CPS). In this connection, the Bureau of Labor Statistics (BLS) has an important role to play in developing disability-related questions. A new set of questions has been expected from the BLS. NCD continues to offer its assistance to the bureau in developing, field-testing and finalizing these questions. NCD recommends that the BLS meet with advocates and knowledgeable professionals in the area of disability statistics and labor market analysis to help finalize the development and validation of disability-related questions for the CPS.

(d) Quality of Life

Much of the attention to disability data has focused on the absolute number of people with disabilities in the country; the comparative employment, income, educational and health status of people with disabilities; the family composition, life expectancy, racial, ethnic and gender distribution of people with disabilities; and related demographic matters. But other, often more subtle issues cry-out for qualitative and statistical analysis.

Among these, one of the most important is quality of life. The nature and proper measurement of quality of life indicators, ranging from subjective measures of well-being to indicators of community participation, have intrigued us for many years. Hardly can one pick up a popular magazine without reading some group’s latest rankings of the ten best communities in which to live. The criteria used usually reflect upper-middleclass values, focusing on home prices, schools, recreation, transportation and health services. The criteria that people with disabilities would use are in many respects identical to those that would appeal to other people, but for many people with disabilities additional factors must also be considered.

As a follow-up to NCD’s Livable Communities report, [16] and in order to better understand the broad range of quality of life indicators that can be used by and on behalf of people with disabilities to assess progress in this most important of realms, NCD plans to initiate a study of quality of life indicators. Accordingly, NCD will issue early in 2006 an RFP entitled National Disability Performance Indicators and Data. [17] This research will attempt to objectify and operationalize the criteria and measurement techniques that are relevant to assessing quality of life and to measuring improvements in the quality of life over time.

(e) Data and Database Coordination

Whenever data on a given subject is collected from multiple sources or through the use of more than one data collection instrument, different results are likely. For example, in calculating national employment data, payroll employment and self-reported employment typically differ.

In a similar vein, much controversy has been generated by variations in disability statistics achieved by different researchers, using varied data collection instruments, differing data sources and different data mining techniques. Under these circumstances, questions about discrepancies and divergences become ever-more difficult to answer. Are dramatically different conclusions a function of poor research, or are they simply the result of these legitimate differences in methods?

As the importance of statistics grows, so too do the stakes involved in these arguments. Whether rates of unemployment among people with disabilities have or have not declined since enactment of the ADA is a matter of great significance. The law itself has further contributed to the complexity and difficulty of basic statistics-gathering. For instance, in its series of decisions (summarized in NCD’s Righting the ADA papers) [18] the U.S. Supreme Court has interpreted the ADA definition of disability in a way that makes statistical analysis more difficult. In dealing with the main part of the ADA’s disability definition—that someone is a person with a disability if they have a mental or physical impairment that “substantially limits one or more major life activities”—the Court has de-emphasized condition and emphasized context. From the standpoint of advocates who have long argued for a social- rather than a diagnosis-based standard for identifying disability, this is a positive development. It means that a person with a given impairment might be a person with a disability in one situation, in relation to one major life activity, but might not be in another. But precisely because of this variability, this approach makes it impossible to count the number of people who meet any legal standard of having a disability.

Earlier in this chapter we recommended a comprehensive review of all legally-required disability data collection efforts. NCD further recommends that OMB conduct a broader study, taking all contemporary data collection practices and experience into account, into the strengths and weaknesses of, and the conceptual and practical issues surrounding, the gathering of data on all aspects of the lives of people with disabilities. This study should include an assessment of what sorts of data are needed, what are the most legally and economically feasible methods of compiling and validating them, and how different data sources can best be synthesized to form the most complete picture. The research should also extend to categories of data that are needed but do not yet exist, including such matters as how to measure the impact upon employment of the provision or withholding of various supports and services such as assistive technology or public support for reasonable accommodations. Finally, the study should address methods for gathering and verifying data on the relationship between various program rules (such as those bearing upon asset and resource limitations in needs-based programs) and comparative family status (such as the number of couples who divorce or refrain from marriage as a result of the financially adverse consequences resulting from the rules).

Recommendations

Recommendations 1.1: NCD recommends that the Office of Management and Budget (OMB) undertake a comprehensive statutory review, aimed at identifying all disability-related data-collection requirements in current federal law, and that OMB follow-up with an assessment of the current status, usefulness and viability of each and with appropriate recommendations.

Recommendation 1.2: NCD recommends that the results of field testing of the new ACS disability question be shared with the disability community, and that opportunity for input and further refinement be made available.

Recommendation 1.3: NCD recommends that the Bureau of Labor Statistics meet with advocates and knowledgeable professionals in the area of disability statistics and labor market analysis to help finalize the development and validation of disability-related questions for the CPS.

Coupled with other ongoing NCD research, the development of these indicators will provide policymakers with new tools for use in the design and evaluation of a variety of programs.

Recommendation 1.4: NCD recommends that OMB conduct a broad study into the strengths and weaknesses of, and the conceptual and practical issues surrounding, the gathering of data on all aspects of the lives of people with disabilities.

Chapter Two--Civil Rights

Introduction

The chapter begins with a discussion of the ADA, including reflections on the fifteenth anniversary of the law, and discussion of issues that have arisen during 2005. The issues discussed relate to the technical assistance provided under the Act and to the approach taken by the Federal government to mediation of ADA complaints. The ADA section concludes with discussion of important pending court cases on the applicability of the ADA to state prisons.

Returning to a major theme of last year’s status report and of the Council’s work in 2004, the ADA section closes with a renewed call for passage of the ADA Restoration Act.

The chapter then goes on to discuss the civil rights forum which NCD helped organize during the year. Following this, two long-standing issues are revisited in the light of recent developments, assisted suicide and genetic discrimination.

Next the chapter turns to voting, with a discussion of new technical guidelines for voting machine access that will prove relevant in future elections.

Finally, based on a major NCD study completed in 2005, the chapter addresses the Civil Rights for Institutionalized Persons Act, which turned 25 years of age in 2005.

(a) The ADA

1. A Time for Taking Stock

In observance of 2005’s fifteenth anniversary of the enactment of the Americans with Disabilities Act (ADA), NCD issued its report, NCD and the ADA: 15 Years of Progress. [19] Summarizing the state of affairs for Americans with disabilities, the report finds: “It has been 15 years since the enactment of the ADA, and while it is clear that the legislation has assisted countless people, there are still major obstacles that prevent equal access for people with disabilities.”

Reflecting this mixture of accomplishment and persisting needs, the report goes on to cite preliminary findings of NCD’s ADA Impact study. These findings include progress in accessible transportation and in the availability of accessible public facilities; greater utilization of telephone relay services; increases in 2004 in the percentage of Americans with disabilities voting; and narrowing of the education gap between people with and people without disabilities. But NCD’s ADA Impact Study also indicates that a number of barriers remain, such as the lack of affordable housing for people with disabilities, “which have slowed the realization of the ADA’s objectives.” [20]

It thus emerges clearly that there is much to be proud of and thankful for, but also that tremendous opportunity still lies ahead. A number of developments occurred in 2005 which highlight our accomplishments to date and point the way to the risks and opportunities of the future.

To more fully understand these, NCD commissioned the ADA Impact Study noted above, and a subsequent ADA Implementation Study. [21] Through focus groups and other forms of research, these projects will combine to produce a wealth of data concerning the impact of the ADA on the lives of people with disabilities and on the practices of employers. They should also produce rich data concerning what various key constituencies regard as major barriers to the effectiveness of the law in achieving the ADA’s four key goals of equality of opportunity, full participation, independent living, and economic self-sufficiency.

One of the major issues to be addressed by the ADA Implementation Study relates to the question of information dissemination. It is widely believed that lack of knowledge concerning the ADA, and lack of understanding concerning its provisions, have combined to create unnecessary fear of the law and to delay some of the progress that it could bring about. NCD believes that in an age of abundant information, available from printed and electronic media, important messages must increasingly compete for attention among the public. For this reason, NCD recommends that Congress undertake a comprehensive study into the public-awareness and information-dissemination methods currently used by federal agencies in connection with all major disability rights statutes. This study should be conducted with a view to determining whether different methods, venues or messages would result in a higher level of awareness concerning the requirements, benefits and opportunities existing under the ADA and other disability civil rights laws.

Another major development of 2005—and one that underscores the need for effective outreach just discussed—is the adoption of revisions to the major federal regulations governing implementation of the ADA, the ADA Accessibility Guidelines (ADAAG). [22] If the ADA is to remain a living vibrant document, periodic updating of these implementing regulations is crucial to the continued viability and relevance of the Act. NCD trusts and expects that the Access Board (which developed the guidelines) and the Department of Justice (which adopts and will ultimately enforce them) will monitor both the impact of the guidelines and the changing conditions surrounding them to ensure that the goals of the law can continue to be achieved and so that barriers can be identified and addressed. To that end, this report will discuss issues in Chapter Four on Health and in Chapter Eleven on Technology that implicate the ADA in issues that were beyond the imagination of anyone when the law was drafted.

2. Technical Assistance and Coordination

The ADA touches on many areas of life, as evidenced by the range of issues covered by court decisions and DOJ settlements during 2005. As discussed in subsequent chapters of this report, 2005 witnessed ADA cases involving the operation of state Medicaid programs, [23] cases involving the operation of state welfare agencies, [24] and cases involving private business’s emergency evacuation plans, [25] to name just a few. Many of the interactions and potential overlaps are familiar, such as the role of the ADA in housing, but many others are new and complex.

To add to the challenges facing those charged with interpreting the ADA and those who disseminate information about its meaning, court decisions and legal interpretations by various executive branch agencies often result in inconsistency between agencies or between courts concerning either the meaning of the ADA or its interaction with other laws. While such inconsistencies are to some degree inevitable, NCD believes that the Department of Justice (DOJ) can take a stronger leadership role in clarifying matters and resolving inconsistencies that lead to uncertainty and confusion for both people with disabilities and covered entities.

Through its Disability Rights Online News, and through the publication of many technical assistance and informational resources, including the major CD-ROM it issued in 2005, [26] the DOJ has taken the leading role in communicating the meaning of the ADA to the public. In addition, DOJ has a lead role under statute in coordinating the government’s ADA implementation activities, through its rulemaking, complaint handling, and interagency cooperative agreements and initiatives.

At a time when federal civil rights enforcement efforts have increasingly focused on non-confrontational strategies such as technical assistance and information dissemination, the need to ensure the effectiveness of these strategies is clear. At a time when the cost effectiveness of all expenditures and programs must be subjected to intense scrutiny, NCD believes DOJ could do more than it currently does to make the law clear to those affected and governed by it, and for those who look to it for protection and definition of their important civil rights.

Three specifics may serve to illustrate the use of readily achievable steps NCD believes should be taken. First, DOJ should expand the focus of its publications. This would include broadening the focus of its regular online ADA update reports. Currently, these reports focus largely on cases or initiatives in which the DOJ itself has been directly involved. Inclusion of information about all significant ADA-related developments, including court decisions in cases to which the U.S. government may not have been a party, and including actions of other federal agencies in which DOJ was not directly involved, would go a long way toward providing the public with an authoritative, timely and comprehensive window into the evolving meaning of the law.

In this connection, all informational publications should be regularly reviewed to ensure their timeliness and comprehensiveness. For example, one of the important publications updated and issued by DOJ in 2005 was on requirements and methods for effective communications by hospitals with persons who have hearing impairments. [27] During 2005, several court settlements combined to suggest that the requirements applicable to hospitals under the ADA extend to ensuring that medical equipment is also accessible to and usable by persons with disabilities. While not an effective communications issue as such, the prospects and requirements of the law in this area are surely of significance to hospital administrators and patients alike. Important as a publication on effective communication is, NCD believes that it would rove even more helpful to the public to have a publication covering all existing and imminent requirements bearing on hospitals.

The second significant step the DOJ should take in fulfilling the responsibilities it has both taken upon itself and been assigned by law is to update applicable regulations whenever definitive change in the law occurs. While we commend DOJ for its role in the periodic ADA Accessibility Guidelines revision process, discussed above, what we have in mind here is the need for interim regulations to implement Supreme Court decisions and indeed to reflect DOJ’s own determinations and rulings.

For instance, as long ago as 1996 the DOJ formally expressed the view that covered entities which disseminated information to the public, including by computer, were obliged under the law to make that information available to persons with disabilities. [28] As of yet, a decade later, no clarification on what constitutes such parity, or when and how it is required, has been By the same token, the Department has never withdrawn or renounced its statement.

Some may argue that in an era of rapidly changing communications technologies, any attempt to specify means or other details would be anachronistic and harmful to commerce and to creativity in the development of the Internet. But others would counter that failure to clarify the types of access required by the law is irresponsible and an abdication of responsibility. Without guidance, individuals with disabilities, designers of web sites, and internet service providers, telephone companies and others are left uncertain, vulnerable to misunderstanding, and subject to avoidable controversy including needless litigation, all of which could be minimized, with consequent benefit to the productivity of our economy, by thoughtful analysis and rulemaking on DOJ’s part.

In this connection, NCD fears that hostility to the ADA resulting from vexatious litigation could be greatly reduced if DOJ would take a leadership role in clarifying its views as to the meaning of the law in certain controversial areas, especially where DOJ’s own opinion letters, settlement agreements or other policy pronouncements have legitimately given rise to expectations that may or may not be warranted.

The third area where significant measures could be taken in this regard involves the relationships among federal agencies with coordinate jurisdiction for implementing and enforcing the ADA. The ADA is unusual in that so many agencies have fragmented or overlapping responsibility for its interpretation and enforcement in their areas of jurisdiction. To the degree that the ADA applies to private sector and to state and local governments entities whether in health care, transportation, emergency preparedness or education, all of the federal agencies that administer programs in these areas are involved in implementing the ADA as well. It is impossible in such a setting to avoid differing interpretations or inconsistent applications of the law. When complexities arising from the intersection between the ADA and other laws are taken into account, the likelihood for inconsistent, even conflicting interpretations, becomes all the greater, and with it the risk that unresolved differences between and among executive branch agencies will exacerbate the inherent complexity of the law.

Once again in this area, DOJ has a historical and statutory role to play. By law DOJ has and exercises coordinate jurisdiction with other agencies, including the Access Board and the Department of Transportation, in the development and promulgation of ADA regulations. The department counsels and represents other federal agencies in ADA-related litigation, and maintains cooperative agreements to assure case referral and continuity in processing with other agencies such as the Department of Housing and Urban Development. Finally, the DOJ has jointly published informational and technical assistance materials in conjunction with other agencies over the years.

In light of these long-standing precedents, established relationships and clear responsibilities, DOJ should develop a proactive strategy for working cooperatively with other federal agencies to ensure uniform interpretation and application of the law, and to develop clear and common positions on issues involving the interplay of the ADA and other laws. To do less may be to inadvertently contribute to an increased risk of litigation. We should do everything possible to avoid the risk of individuals being forced to seek recourse in the courts for the resolution of disputes which are really between, and hence are best settled by, executive branch agencies. The goals of clarity and efficiency are best served by agencies working together to understand and apply the laws under which they all work and under which we all live.

An illustration of the problems faced by citizens may suffice to make this point clear. Several court cases brought under the Medicaid Act in the wake of the Olmstead decision have raised profound questions about the relationship of Medicaid and ADA provisions. One important lower court decision in 2005 held that the ADA required states to fill all available home and community-based waiver (HCBW) slots. [29] But where is a citizen seeking to enforce her Olmstead rights, or a state official seeking to apply the law in good faith now to look for an authoritative answer to the question of how and when slots are deemed to exist, and when or whether they must be eliminated. How are advocates to best work with their states in maximizing the potential of Olmstead? Only the DOJ and the Department of Health and Human Services, working in close collaboration, can provide the necessary clarity and guidance.

No one suggests that the Department of Justice has final authority to decide these questions. Ultimately, they are likely to be decided by the weight of a number of authorities including DOJ, the Centers for Medicare and Medicaid Services, and the courts. But the executive branch, spearheaded by DOJ working in collaboration with CMS, has an urgent responsibility and an unequaled opportunity to offer citizens and officials alike as much clarity and certainty as the executive branch is capable of offering on this and other important issues.