NATIONAL DISABILITY POLICY:


A PROGRESS REPORT


December 2000—December 2001


National Council on Disability


July 26, 2002

National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

National Disability Policy: A Progress Report 

December 2000—December 2001 

This report is also available in alternative formats and on NCD’s award-winning Web site 

(www.ncd.gov). 

Publication date: July 26, 2002 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

The views contained in the report do not necessarily represent those of the Administration as this 

and all NCD documents are not subject to the A-19 Executive Branch review process. 
Letter of Transmittal


July 26, 2002


The President


The White House


Washington, DC 20500


Dear Mr. President:


On behalf of the National Council on Disability (NCD), I am pleased to submit NCD’s National


Disability Policy: A Progress Report, as required by Section 401 (b)(1) of the Rehabilitation Act


of 1973, as amended. 


This report covers the period from December 2000 through December 2001, the end of the first


session of the 107th Congress. It reviews federal policy activities by issue areas, noting progress


where it has occurred and making further recommendations where necessary to the executive and


legislative branches of the Federal Government.


Disability is not the experience of a minority of Americans. Rather, it is an experience that will


touch most Americans at some point during their lives. Today, more than 54 million Americans


have disabilities, a full 20 percent of the U.S. population. About half of these individuals have a


severe disability, affecting their ability to see, hear, walk, or perform other basic functions of life.


Significant barriers, however, still exist for individuals with disabilities who try to participate


fully in American society. People with disabilities want to be employed, educated, and active


citizens in the community. Unfortunately, on average, Americans with disabilities have a lower


level of educational attainment and are poorer and more likely to be unemployed than those


without disabilities. In today's global economy, America must be able to draw on the talents and


creativity of all its citizens.


In your New Freedom Initiative, you laid out a blueprint to increase investment in and access to


assistive technologies and a high-quality education and to help integrate Americans with


disabilities into the workforce and into community life. This initiative comes at a time when


many disability advocates are expressing concern about the future of disability policy. NCD will


work with your Administration and Congress to ensure that every individual with a disability has


access to the American dream.


With strong, representative, and experienced leadership and open, ongoing input from the


disability community, we can meet the challenge to make the most of the opportunities facing us

at the start of your new Administration. NCD has completed over the past several years civil 

rights policy evaluations directly related to the disability policy areas addressed in the New 

Freedom Initiative. NCD invites you and your Administration to draw on the research and 

studies conducted by our agency for information on how and where executive agencies can act to 

the maximum benefit of their consumers. 

NCD stands ready to work with you and stakeholders inside and outside the government to see 

that the public policy agenda set out in the attached report, in Achieving Independence, in a series 

of civil rights monitoring studies published as NCD reports, and in the New Freedom Initiative is 

implemented. 

Sincerely, 

Marca Bristo 

Chairperson 

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

Speaker of the U.S. House of Representatives.) 

ii 
National Council on Disability Members and Staff 

Members


Marca Bristo, Chairperson


Kate Pew Wolters, First Vice Chairperson


Hughey Walker, Second Vice Chairperson


Yerker Andersson, Ph.D.


Dave N. Brown


John D. Kemp


Audrey McCrimon


Gina McDonald


Bonnie O’Day, Ph.D.


Lilliam Rangel-Diaz


Debra Robinson


Ela Yazzie-King


Staff


Ethel D. Briggs, Executive Director


Jeffrey T. Rosen, General Counsel and Director of Policy


Mark S. Quigley, Director of Communications


Martin Gould, Ed.D., Director of Research


Gerrie Drake Hawkins, Ph.D., Program Specialist


Pamela O’Leary, Interpreter


Allan W. Holland, Chief Financial Officer


Brenda Bratton, Executive Assistant


Stacey S. Brown, Staff Assistant


Carla Nelson, Office Automation Clerk


Joan M. Durocher, Esq., Fellow


iii 

Acknowledgment 

The National Council on Disability wishes to express its appreciation to Steve Mendelsohn for 

assisting in the development of this report. 

v


Contents


Page 

PART I


Executive Summary ............................................................ 1


Introduction ................................................................. 15


Chapter 1: Disability Statistics and Research ....................................... 27


Chapter 2: Civil Rights ........................................................ 33


Chapter 3: Education .......................................................... 69


Chapter 4: Health Care ......................................................... 89


Chapter 5: Long-Term Services and Supports ...................................... 107


Chapter 6: Issues of Special Concern to Youth ..................................... 119


Chapter 7: Employment ....................................................... 131


Chapter 8: Welfare Reform .................................................... 145


Chapter 9: Housing .......................................................... 149


Chapter 10: Transportation .................................................... 163


Chapter 11: Assistive Technology and Telecommunications .......................... 173


Chapter 12: International ...................................................... 199


Chapter 13: Homeland Security ................................................. 203


Endnotes ................................................................... 205


PART II


Major Activities Summary–Fiscal Year 2001 ...................................... 213


Appendix


Mission of the National Council on Disability ............................... 227


vii 

PART I


Executive Summary 

Introduction. The National Council on Disability’s (NCD) 2001 annual progress report marks a 

turning point in public policy, with the advent of a new national Administration. Such moments 

in our history not only offer great hope for innovation and reform but also require a sense of 

continuity, necessitating perspective and awareness of what has come before and a recognition of 

the continuity and complexities underlying policy in all spheres. 

To help link the past and the future, NCD provides an overview of some of the major public 

policy initiatives in disability during the decade of the 1990s. These initiatives can be grouped in 

three areas: civil rights, service delivery programs, and technology. Although the various works 

differ in accordance with their goals and contexts, the body of work constituting the statutory 

record of the 1990s reflects an overarching and unifying conceptual framework that gives the 

laws much in common. 

Among the key features these diverse laws have in common are the recognition that issues of 

concern to Americans with disabilities, such as the design of our public buildings and 

communications infrastructure, can no longer be addressed in isolation from the general society; 

the fact that consumer participation is a key element in the effective operation of all programs 

and laws; the awareness that advocacy resources and technical assistance are critical to the 

success of all initiatives; and the belief, in areas ranging from employment to education to 

housing, that society benefits by the inclusion of Americans with disabilities in the mainstream 

institutions of society. 

The laws have also recognized that the allocation of the costs of nondiscrimination and inclusion 

are often as important as any assessment of the total amount of such costs. For that reason, the 

laws also have in common various mechanisms aimed at ensuring that the burden of access and 

equality will not unduly fall on a narrow range of institutions or entities. Equally, the costs of 

1

policy not only must be reckoned in the sense of what is required to achieve various goals but 

also must include a sophisticated awareness of both the costs of inaction and the indirect benefits 

of various measures and strategies. 

NCD has played an important, ongoing role in identifying issues and barriers, bringing key 

actors from within and without government together, and providing objective, unbiased data 

from which policy can be reliably derived or better understood. This role is discussed from a 

historical standpoint and as it relates to the demands of this new era. 

If continuity is important, it must alert us to our collective failures as well as remind us of our 

successes. A series of NCD reports has documented failures in enforcement across a broad 

spectrum of programs and laws. Without credible enforcement, even the best laws become 

ineffective. Just as we know that laws in other areas are not self-executing, so must we carry this 

awareness into the disability policy arena. With energetic enforcement, the sincere efforts of 

most can be honored, the dereliction of the few can be addressed, and the goals of public policy 

can be effectively and consistently advanced. 

Census 2000 and Disability Statistics. Problems continue to be associated with widely used 

disability employment and other data, including issues surrounding the collection and analysis of 

relevant and reliable statistical data on America’s population with disabilities. 

The findings of the 2000 Census, together with those of other compilations relating to the 

employment status of Americans with disabilities, have been severely questioned on 

methodological and validity grounds. The accuracy of these data are critically important in an era 

of evidence-based policy because misleading information can lead to misguided or premature 

public policy decisions. 

Federal agencies extensively use and underwrite the costs of disseminating a great variety of 

disability data. Whereas people should be entirely free to use whatever data and data sources they 

2

see fit, public money should not be used to support the dissemination of suspect findings and 

conclusions. 

Similarly, in other areas of disability research, new barriers have emerged to the collection and 

analysis of reliable data. These barriers range from the new definitions of disability crafted by the 

courts under various statutes to the problems associated with measuring function as it relates to 

employment, education, or independent living when assistive technology is taken into account. 

The report recommends that the Federal Government review and rationalize the range of 

statistical efforts and test proposed new measurement techniques and research practices to ensure 

their reliability before they are put into widespread use. 

Civil Rights. A perceived hostility toward disability on the part of the courts, congressional 

proposals that would treat disability civil rights laws differently and more harshly than any other 

laws, and other factors have combined to create a sense of great unease and fear among 

America’s population with disabilities. In light of persistent under enforcement of civil rights 

laws and lax monitoring of the requirements of service programs, the report examines each of the 

major areas where erosion in civil rights protections has occurred or is seriously foreseen. 

Major areas addressed and explained are court decisions dramatically restricting the applicability 

of the Americans with Disabilities Act (ADA); lack of coordination among agencies or of 

material progress in key enforcement areas identified over recent years as needing reform; failure 

to include persons with disabilities among those protected by hate crimes laws; failure to stem 

genetic discrimination by employers and insurers that disproportionately affects persons with 

hidden disabilities; the need for continued outreach to people with disabilities from diverse 

cultural groups who face cultural, linguistic, and other barriers to full participation in society and 

who interact with the issues posed by societal reactions to their disabilities; court decisions 

outside the ADA that adversely impact access to the courts by persons with disabilities and, in 

the aggregate, can be characterized as reflecting a closing of the courts to individual citizens; and 

3

the need for greater outreach to the disability community by the Department of Justice in 

formulating its interventions through amicus curiae briefs in Supreme Court and other major 

federal court cases involving the rights and interests of Americans with disabilities. 

Education. As the Individuals with Disabilities Education Act (IDEA) faces reauthorization, we 

must carefully assess the implications of our approach to education for students with disabilities 

and sensitively apply the policy initiatives central to the No Child Left Behind Act 

(NCLBA)—the reauthorization of the Elementary and Secondary Education Act. At the same 

time, the successes of special education should not be overlooked, and the widely documented 

need for more effective monitoring and enforcement should be borne in mind under any revised 

framework. 

In addition to the issues surrounding implementation of NCLBA and a review of NCD’s 

comprehensive IDEA assessment study, NCD specifically deals with the charge of the 

President’s Commission on Excellence in Special Education; the key issues and controversies 

involved in IDEA reauthorization, including student discipline; minority overrepresentation 

among students receiving special education services; parental involvement and due process; 

use of assistive technology; universal design and access to mainstream school technology, 

instructional materials, and media; disability harassment; full funding; and accountability of 

schools for the educational outcomes of special education students. 

Health Care. NCD has a long record of activity, research, and involvement in the area of health 

care and access to medical resources and services. Against this background of interest and 

expertise, the current congressional and national debate over the Patients’ Bill of Rights raises 

important questions for what inclusion means for people with disabilities in the health care 

realm. 

In connection with this proposed legislation, the report identifies issues and offers analysis and 

recommendations concerning coverage of all privately insured persons; access to specialized 

4

care; point-of-service options; continuity of care; standing referrals; timely and accurate 

information, including accessible information, regarding details of coverage and available 

options for treatment; access to clinical trials and availability of clinical trials for assistive 

technology or other nonpharmaceutical interventions and modalities; grievance procedures; 

medical necessity determinations; and mental health parity. 

Beyond this proposed patients’ rights legislation, the report deals with the status of efforts to 

identify and treat persons with mental health conditions in the criminal defendant and prison 

population; the problem of balancing pain-relief promotion with the avoidance of assisted 

suicide; the need for reforms in Medicare and the procedural vehicles available for carrying out 

the necessary review of current program rules; and the potential applicability of telemedicine to 

persons with disabilities, who are likely to be among its most frequent users. 

Long-Term Services and Supports. Taking the unprecedented interagency effort culminating in 

the Department of Health and Human Service’s December 2001 Olmstead implementation report 

as its point of departure, NCD reviews the Administration’s continuing support for the Supreme 

Court’s Olmstead decision and draws out implications; analyzes the major premises of the report 

as a basis for clarifying the issues and options it raises; discusses the economics of Olmstead as 

these relate to national policy favoring institutional versus community-based living and care for 

all Americans, including those who are elderly and those of a younger age with disabilities; 

discusses some of the other, specific programmatic initiatives addressed in the report and in other 

expressions of Administration policy; considers the implications of broad-based policy changes 

favoring community-based and in-home services and care for the private long-term care 

insurance and other non–Medicaid recipient populations; and addresses the role of Social 

Security Disability Insurance (SSDI) and other programs of particular concern to people with 

disabilities in the context of social security reform. 

Youth. Although such issues as housing, education, health care, and even employment are 

important for everyone, within each of these areas are some subjects of particular concern and 

5

importance for our youth with disabilities. One key example is school-to-work transition 

services, as required by both the federal Rehabilitation Act and IDEA. Widely recognized to be 

inadequate, despite notable successes in certain localities, these services are crucial for the ability 

of students with disabilities to enter adult services and employment after leaving school. 

NCD discusses chronic transitioning problems and suggests several remedial approaches, such as 

establishing system-to-system continuity in the availability of assistive technology; cost-shifting 

between rehabilitation and education agencies; and the implementation of joint accountability 

between the service systems for the success of transition services and programs. 

Employment. As it is for society as a whole, employment is a cherished goal for most Americans 

with disabilities, but one that continues to elude all too many. Implicating the education, 

vocational training, health care, and transportation systems as they do, the barriers to increased 

employment for people with disabilities are as complex and multifaceted as those faced in any 

area of policy, even as enhanced employment becomes the ever-more central objective of so 

much public policy in the disability area. 

For this reason, NCD’s discussion of this subject begins with an appraisal of the importance of 

interagency coordination, focusing particularly on the potential of the new Office of Disability 

Employment Policy to spearhead the necessary effort. Related to the discussion of statistics, 

NCD also examines the sources and role of statistics in the employment policy sector. 

Major new initiatives in employment policy are also dealt with, including issues surrounding the 

implementation of the Ticket to Work and Work Incentives Improvement Act; recent federal 

hiring initiatives to expand opportunities for persons with psychiatric disabilities; federal 

initiatives to ensure the availability of information about the provision of reasonable 

accommodations in governmental employment; and concerns regarding the accessibility and 

responsiveness to work-aspirants with disabilities of the resources and services of one-stop career 

centers. 

6

From the standpoint of the broadest possible perspective, two other issues are covered: the proper 

role of the Federal Government in ensuring that those operating under federal contracts, grants, 

or licenses adhere to principles of nondiscrimination and accessibility; and the role of 

employment tax incentives for both workers with disabilities and businesses in stimulating 

opportunities and heightening the prospects for success and job tenure. 

Welfare Reform. As Congress and the nation prepare to fashion this year the reauthorization of 

the 1996 welfare reform law, a number of questions about the intersection between welfare and 

disability, as well as about the use and coordination of resources, emerge as needing discussion 

and answers. To the degree that states are obliged to meet return-to-work and related targets 

under the welfare system currently in effect, NCD notes that effective identification of recipients 

with disabilities and coordination with other programs in meeting their needs can contribute to 

the ability of states to meet their employment goals. Such attention can also facilitate the 

effective entry into employment of persons with caretaker responsibilities for children or other 

family members with disabilities. 

NCD recommends that the new law include clear provisions, incentives, and mechanisms to 

assist state welfare reform systems in reaching out to vocational rehabilitation, developmental 

disabilities, and other programs to identify and marshal the resources and expertise that will 

contribute to the quality of work with persons with disabilities among those receiving or at risk 

of needing welfare supports. 

Housing. Housing plays a role in every aspect of people’s lives, from the amount of discretionary 

money available for meeting other needs to the time and distance involved in going to work to 

the quality and availability of a wide range of community resources. Affordable housing is in 

short supply for many Americans, but for people with disabilities, the scarcity is exacerbated by 

inaccessibility and all too often by discrimination. 

7

Based on the definitive findings of its November 2001 report Reconstructing Fair Housing, NCD 

reviews the status of fair housing and equal opportunity laws and practices, including the 

organization of the fair housing laws’ enforcement effort; complaint-handling and caseprocessing procedures; funding of fair housing resources; enforcement of fair housing laws; 

mediation alternatives to litigation; disposition of aged cases that have remained unresolved in 

the enforcement system for prolonged periods of time; and such related matters as the role of 

“visitability” in housing policy and the benefits to be expected from the Department of Housing 

and Urban Development’s (HUD) fair housing survey. 

The progress report then addresses related issues, such as means for increasing the supply of 

affordable and accessible housing; expanding the use of housing vouchers; and stimulating home 

ownership, including proposals to galvanize market forces on behalf of accessible design; and 

providing incentives for the availability of mortgage financing for persons with disabilities. 

Transportation. For many Americans with disabilities who cannot drive or who, if they could 

drive, do not have the resources for the adaptive driving controls, lifts, telescopic systems, or 

other assistive technology that may be necessary, accessible transportation represents one of the 

chief barriers to participation in economic and community life. 

Air travel presents its own set of vexing issues. Implementation of the Air Carrier Access Act has 

long involved a delicate balancing of nondiscrimination and security concerns. In the wake of the 

tragedy wrought by terrorism in September 2001, implementation of this law has become all the 

more difficult and, at the same time, more and more important. 

NCD describes the issues that have emerged and the problems reported around the country by air 

travelers with disabilities, many of whom have been inconvenienced and some endangered by 

misapprehensions and suspicions on the part of security screening personnel that appear to have 

little to do with the imperatives of security. NCD recounts these concerns, based on the reports 

reaching it, and makes proposals for additional measures on the part of the Department of 

8

Transportation (DOT) to ensure that the ability of Americans with disabilities to travel by air will 

not be unduly restricted. 

Although agreements and requirements have been set in place for establishing timetables and 

performance standards for the implementation of accessibility for travelers with disabilities on 

intercity buses, grounds exist for concern regarding the speed, adequacy, and universality of 

compliance. NCD discusses these concerns and makes recommendations for the follow-up and 

monitoring necessary to make certain that the legal and societal expectations in this area are met. 

NCD also makes recommendations for improved collaboration between the Department of 

Justice (DOJ) and the DOT in the implementation and enforcement of civil rights laws bearing 

on transportation. NCD’s major report on the ADA, Promises to Keep, disclosed significant 

shortcomings in the ability of the DOJ and DOT to work together in enforcement, including the 

DOT’s referral of cases to the DOJ when other methods for solving problems proved unavailing. 

As in other areas of the law, enhanced coordination plays a large role in enforcement, and 

methods for increasing this coordination are at hand. 

The President’s New Freedom Initiative discusses some of the transportation issues affecting 

people with disabilities and was followed up by budget recommendations for a variety of pilot 

demonstration and competitive programs aimed at improving transportation access and options 

for people with disabilities. Regrettably, some of these initiatives did not meet with initial 

approval by Congress. NCD recommends that Congress reconsider its decisions in this area and 

delineate a range of transportation strategies and modalities that these innovative programs 

ideally ought to include. 

Although we travel today much as we did 50 years ago, research and innovation in transportation 

are emerging as important elements of our future. Innovative personal transportation vehicles are 

being introduced and will come into greater use with time, but by no means is it certain that these 

innovations will prove as meaningful to people with disabilities as they could. To maximize their 

9

relevance to all Americans, NCD makes recommendation for the testing and evaluation of these 

new devices and designs by and with people with disabilities so the developers can be informed, 

at a time when modifications in the service of accessibility should still be possible, of the extent 

to which these devices currently and prospectively can meet the needs of persons with 

disabilities. 

Paratransit remains a concern for many of its users, according to anecdotal reports coming in 

from around the country. NCD recounts the most frequently heard of these complaints and 

problems and makes suggestions for how these services can be monitored and improved. 

Technology and Telecommunications. Giving birth to what we call the information society, the 

so-called technological revolution has changed our lives more dramatically and irrevocably than 

almost any other force or set of developments. Whereas the general assumption is that this is a 

democratic revolution with benefits and opportunities for all, for many people with disabilities 

some new technologies are as much or more a barrier to than a source of access and inclusion. 

The cellular telephone is a great boon to many, but for people who use hearing aids, problems of 

incompatibility have made cell phones largely inaccessible and unusable. The graphical user 

interface has vastly enhanced access to high-speed data and pictures, but if Web sites are not 

designed with persons who use speech access in mind, these ubiquitous technologies become 

impenetrable walls blocking access to the wealth of information and opportunity the Web 

conveys. 

Because the implementation of Section 508 of the Rehabilitation Act in mid-2001 was a 

watershed for assistive and accessible technology, NCD reviews the experience of operating 

under this statute thus far and discusses the issues that have emerged in the operation of the law 

to date. NCD makes proposals for oversight, technical assistance, and outreach and discusses the 

applicability of the law to telecommuting by federal employees. 

10

Distance learning has made the benefits of education and training available to many people who 

could not otherwise obtain them. But again, these benefits may prove illusory to computer users 

with disabilities unless accessibility is taken into account in the design of the software and course 

materials. Based on the work of a national commission, NCD discusses the issues involved and 

makes continuing recommendations designed to ensure that no one is excluded from the promise 

of this new modality. 

The so-called e-rate, providing grants and subsidies for Internet access to schools and libraries, is 

one of the most important innovations of the Telecommunications Act of 1996. But those entities 

receiving such subsidies or cash grants have not been required to make their resources accessible 

to students or library patrons with disabilities. NCD reviews the history of efforts to correct this 

and calls on the Federal Communications Commission (FCC) to propose reforms. 

Another key provision of the Telecommunications Act is Section 255, which requires 

telecommunications equipment and services to be accessible to individuals with disabilities 

where readily achievable. Based on research and experience under the law, NCD identifies a 

number of barriers to its effectiveness and recommends reforms in such areas as enforcement and 

the apparent distinction the law makes between voice communication, which is covered by the 

law, and the communication of data or pictures, which appears not to be covered by it and hence 

is subject to no accessibility requirements. NCD offers recommendations for studying and 

remedying this anomaly. 

A wide variety of activities are encompassed under the concept of e-government. NCD discusses 

the implications, achievements, and management of the variety of measures and strategies 

involved as they relate to access to governmental information and programs by persons with 

disabilities. 

Recent developments in copyright law may bring intellectual property and disability access 

rights into collision in cyberspace. NCD describes the sources and implications of this conflict 

11

and requests clarification of the law from the appropriate administrative agencies as a first step in 

determining whether further legislation is required. 

Among the many agencies and actions praised in the report, NCD takes note of the FCC’s 

opening of a proceeding aimed at reviewing the temporary statutory exemption of wireless 

phones from coverage under the Hearing Aid Compatibility Act of 1988. NCD expresses 

confidence that this will result in the exercise by the FCC of its statutory discretion in favor of 

requiring that such phones be brought under the coverage of the law. 

With the Assistive Technology Act of 1998 scheduled to sunset on September 30, 2002, NCD 

reviews the unique role played by the programs operating under this small but highly 

instrumental law, notes the needs that would go unmet if the program were to be abolished, and 

recommends reauthorization of the law. 

International. With full recognition of the many critical issues competing for the attention of 

American foreign policymakers and with full regard for the balancing that must underlie so many 

foreign policy decisions and initiatives, NCD reiterates recommendations for the incorporation of 

disability rights, alongside women’s rights and respect for diversity, in America’s foreign policy 

commitments. In particular, NCD offers recommendations to support inclusion of Section 504-

like antidiscrimination provisions. 

NCD also discusses and will participate in development of a United Nations (UN) convention on 

disability and recounts awards made at 2001's commemoration of the International Day of 

Disabled Persons, praising the awardees and expressing confidence that the new Administration 

will produce its own generation of honorees. 

Homeland Security. Sadly, no discussion of public issues can be complete today without a 

recognition of the imperatives of security. Based on reports and concerns expressed from around 

the country, NCD expresses a number of concerns regarding the ability of people with 

12

disabilities to obtain key security information or to participate fully in community responses to 

emergency situations. For the most part, these dangers can be avoided by simple planning, but 

addressing them should be part of the overall emergency preparedness planning process. 

13


Introduction 

The advent of a new national administration is an opportune time for looking forward, but new 

approaches and innovative policies are not created in a vacuum. For the sake of the lessons 

learned and to understand the historical and programmatic context in which to make new policy 

initiatives or corrective systemwide decisions, looking forward must include some looking back. 

Only with perspective on what has been accomplished as well as what has not been achieved can 

we begin the process of building consensus around what remains to be done. 

An enormous amount of activity, and an impressive legacy of achievement in enhancing equality 

and opportunity for Americans with disabilities, constitute the data from which we derive both 

perspective and prospects. The past decade has been a period of remarkable accomplishment and 

energy in the articulation and expansion of civil rights, employment and educational opportunity, 

technology access, and, perhaps most of all, attitudinal change around disability in our society. 

In concert and cooperation with other federal agencies and partners in the nonprofit and private 

sectors and with the commitment and participation of individuals and organizations in the 

disability community, the National Council on Disability (NCD) is proud to have played a role in 

the development and growth of a bipartisan consensus for opportunity and inclusion. In reports, 

recommendations, and performance reviews, NCD has helped to frame the debate, made detailed 

recommendations for change, and monitored the efficacy and enforcement of a variety of 

programs and laws. NCD has sought to serve as a catalyst to progress, a bridge builder among 

sectors and stakeholders, and a source of reliable information and tempered judgment in the 

identification of barriers and in defining the form necessary changes should take.1 

What has characterized the work of the 1990s? Foremost in the record of the past decade are 

major legislative achievements in several areas. Principal among these areas are civil rights, 

service delivery, and access to technology. Overarching and unifying this legislative record are 

two dominant and recurring themes: (1) people with disabilities deserve the same opportunities 

15

in society as everyone else, and (2) decisions society makes about broad issues of policy, ranging 

from health care, housing, and education to telecommunications and transportation, inevitably 

affect people with disabilities just as much as they do everyone else. People with disabilities 

must be involved in leadership roles in policymaking and implementation processes. 

CIVIL RIGHTS 

Symbolically, the decade began in 1990 with the enactment of the Americans with Disabilities 

Act (ADA),2

 which has often been referred to as the landmark civil rights statute for people with 

disabilities. Dealing with employment,

3

 access to state and local government services,4 and 

access to public accommodations,5 the ADA barred discrimination on the basis of disability and 

established the obligation of mainstream public and private institutions to reasonably 

accommodate persons with disabilities. 

While controversy surrounds some aspects of ADA implementation and enforcement, few would 

dispute that the law has had a profound effect, both in terms of creating opportunities to learn, 

work, and participate in society for many people with disabilities and as a spur to institutional 

and attitudinal changes in all sectors of our society. The wheelchair lift on city buses or the 

braille signage in the elevators of major buildings testify not merely to our creation of a more 

accessible environment but more broadly to the changes in attitudes and awareness that have 

marked this era. 

As our awareness of people with disabilities has grown, so has our understanding of the range of 

situations in which their interests, opportunities, and civil rights hang in the balance. Through the 

development of our awareness and because of advances in technology, the meaning of access has 

come to be redefined. This redefinition has been embodied in a number of important new laws, 

including Section 255 of the Telecommunications Act of 19966

 (requiring telephone equipment 

and services to be accessible to people with disabilities) and Section 508 of the Workforce 

Investment Act of 19987 (mandating that electronic and information technology bought and used 

16

by the Federal Government for use by federal employees or members of the public be accessible 

on terms of equality to all persons, irrespective of disability). 

These and other civil rights statutes of the decade have many features in common, but their chief 

unifying element lies in the recognition of the indispensability of what is best called accessible or 

universal design. This means that these statutes recognize the impossibility of fully integrating 

people with disabilities into mainstream society without the buildings, facilities, communications 

infrastructures, and institutional practices and policies of a variety of entities being designed and 

implemented with all potential participants and users in mind. Thus, although once it may have 

been appropriate and sufficient to create jobs in sheltered, segregated settings for people with 

disabilities, today we understand that only the mainstream economy can provide the resources 

and rewards necessary to create and sustain the needed range of opportunities and that the 

competitive economy is where all willing and able workers should be employed. Although 

formerly we created overly restrictive instructional settings for children with disabilities, now we 

know that mainstream, integrated settings are the educational venue of choice for a majority of 

our children. And although once we devised purpose-built, “dedicated” devices—ranging from 

braille typewriters to hearing aids—to accommodate the communication needs of persons with 

disabilities, now our laws have come to recognize that participation in the communications 

environment of today cannot be achieved or preserved by these approaches alone but requires 

that the entire information infrastructure be designed and deployed with accessibility and 

usability in mind. 

In many ways, the World Wide Web is a metaphor for the 1990s. As such, it illustrates the need 

for accessible design of mainstream environments if assistive technology (AT) is going to be 

effective in securing access to the Internet for people with disabilities. The guidelines 

implementing Section 508 therefore contain detailed information on the functional requirements 

governmental Web sites must meet in order to be deemed accessible. A number of prestigious 

private sector organizations have also provided accessibility guidelines8 and accessibility 

assessment tools.9

 The Web brings a world of information onto a computer and has enriched the 

17

lives of many with disabilities. Yet, technology creates challenges of its own. For example, the 

brilliant graphics that add life to many Web pages can make it difficult for a person with visual 

impairments to get the information he or she needs from a Web site. Now, through application of 

Section 508 accessibility standards, federal agencies must include descriptive text with Web page 

images. As another example, the captioned video Web casting that brings live events to a desktop 

computer can make it possible for a person who is deaf to follow the proceedings. 

Even in this time of unprecedented national crisis and peril, our commitment to the maintenance 

of moral as well as practical balance can be glimpsed in the issuance of a fact sheet by the 

Federal Aviation Administration (FAA)10 providing guidance on application of the Air Carrier 

Access Act (ACAA) (which provides for nondiscrimination against persons with disabilities in 

air travel and in airport services and practices) to our new airport security imperatives. The fact 

sheet reinforces the continued applicability of the ACAA, while making clear how its application 

is necessarily conditioned by the need for dramatically heightened air travel security under 

current world conditions. 

Yet another archetypal statute of the 1990s demonstrates the evolution in our notions of what 

equal access means and our parallel recognition of the role of technology in bringing this 

equality of access about. In 1990 Congress enacted the Television Decoder Circuitry Act,11 

which required virtually all TVS sold in America to be equipped with a closed-caption decoder 

chip. This chip ensures that all TV watchers can access closed captioning, whether they are deaf 

or not, and that they can do so without the necessity of spending several hundred dollars to buy 

and install a separate decoder box. The Decoder Act created a new market for captions, as 

anyone who has ever attempted to watch TV in a crowded sports bar or noisy airport well knows. 

It has probably also saved more than one relationship by allowing the partner who likes to watch 

TV late into the night do so without disturbing the sleep of the partner who hates noise. 

By itself, the Decoder Act could not create or guarantee the existence of captioned content. For 

that, the law had to go further, requiring (as the Federal Communications Commission [FCC] did 

18

under the Telecommunications Act of 1996)12 that major TV networks provide specified amounts 

of captioned programming. 

In our nation’s heightened commitment to technology as a tool for increasing employment and 

enhancing the productivity of our economy, the role of assistive technology as a means for 

increasing employment opportunities for persons with disabilities has not been overlooked. Most 

recently, this commitment has been taken up in President Bush’s New Freedom Initiative 

(NFI).13 Measures aimed at ensuring the accessibility of mainstream technology to people with 

disabilities and measures for ensuring the compatibility of mainstream with assistive technology 

will remain indispensable components of our strategy. 

Likewise, in areas where technology does not necessarily mediate access and participation, our 

approach to the articulation and enforcement of civil rights has partaken of the same values. For 

example, in housing, a slowly evolving thrust of policy has been in the direction of making our 

nation’s overall housing stock accessible to the maximum extent possible. So also in long-term 

services, our growing commitment to community living and deinstitutionalization for all has 

extended to older Americans and Americans with disabilities alike. 

Everywhere then, in sphere after sphere, the recognition has taken hold that Americans with 

disabilities have the right to equal access and full participation and that the design of programs, 

facilities, and systems must take the rights, needs, and legitimate aspirations of these Americans 

into account. 

SOCIAL LEGISLATION AND HUMAN SERVICE SYSTEMS 

Through federal-state partnerships, our nation operates a number of service systems designed to 

provide educational and vocational rehabilitation (VR) and other services to people with 

disabilities. Based on the recognition that people with disabilities need interventions and service 

inputs that people without disabilities do not need but that have not historically been provided 

19

within the general labor market and public educational program frameworks, these programs can 

perhaps best and most generally be described as intended to create a level playing field for 

Americans with disabilities. These programs have been influenced in fundamental ways also by 

the values of integration and equality that have come to the fore in the past decade. The 

Individuals with Disabilities Education Act (IDEA), as substantially revised in 1997,14 most 

graphically demonstrates this philosophy through its commitment to mainstream education in the 

least restrictive environment and in its procedural and substantive provisions regarding the role 

of parents in the identification of needs and in the delivery of key special education and related 

services. 

From their beginnings to the present day, major service programs—including developmental 

disabilities services,15 Medicaid,16 special education under IDEA, and VR17—have contained 

civil rights protections for those receiving services. These provisions have been strengthened and 

clarified throughout the 1990s. Specific provisions embodying our commitment to civil rights in 

these service programs have included appeal and other due process procedures for impartial 

review of agency or program decisions; requirements that individualized case services be 

provided pursuant to plans of service, in the nature of contracts jointly developed and agreed to 

by the service-provider agency and the individual or family receiving services; requirements that 

key program information be effectively communicated to the service recipient, including in 

alternative formats where necessary; and requirements for when and how the need for AT must 

be taken into account in the eligibility-determination, needs-assessment, and service-planning 

phases of involvement. 

CONSUMER PARTICIPATION 

As these due process, informed consent, and related procedural requirements indicate, consumer 

involvement, based on notions of empowerment and self-determination, has also been a key 

feature of statutes adopted or substantially amended during the 1990s. These principles are also 

evident in the overall structure and governance of these programs (e.g., the establishment of 

20

rehabilitation advisory committees, state independent living councils, state developmental 

disabilities planning councils, and similar entities) to guide state and local agencies in the 

administration of the programs. Additionally, on the program-planning and regulatorydevelopment levels, the commitment is evident in the methods adopted by such federal agencies 

as the Access Board and the FCC for developing guidelines to implement the requirements of 

Section 255 of the Telecommunications Act and Section 508 of the Workforce Investment Act. 

On both occasions, a government-industry-consumer committee was created (i.e., the 

Telecommunications Access Advisory Committee [TAAC] in the one case, the Electronic and 

Information Technology Access Advisory Committee [EITAAC] in the other). 

ADVOCACY AND SYSTEMS CHANGE 

Recognizing that the direct effects of many programs and expenditures can be magnified by 

long-term systems-change, many of the legislative enactments of the 1990s have included this 

concept among the goals and resources they provide. Illustrative of this feature of contemporary 

policy are the systems-change strategies and options contained in the Assistive Technology Act 

of 199818 (formerly the Technology-related Assistance for Individuals with Disabilities Act [the 

Tech Act]) Amendments of 1994.19 State-based projects funded under Title I of the Act have 

been given the task of obtaining a greater visibility for, and focus on, AT in the work of a variety 

of agencies and programs in their states. 

Systems-change, often expressed in terms of removal of barriers to employment, to education, to 

accessing other services, or to the acquisition of AT, is also a prominent feature of the Ticket to 

Work and Work Incentives Improvement Act of 1999 (TWWIIA),20 which endeavors to reduce 

key work disincentives in the Social Security Disability Insurance (SSDI) and the Supplemental 

Security Income (SSI) programs. TWWIIA is aimed at changing the health insurance system. 

Because recipients of benefits under these programs typically become ineligible for cash benefits 

after entering or returning to work, the linkage between cash benefits and Medicaid or Medicare 

health insurance coverage under these programs has often left those who return to work 

21

uninsured when, as is all too frequently the case, they cannot obtain adequate health coverage 

through their employers. To help remedy this serious disincentive, TWWIIA extends to a total of 

about eight years the time during which Medicare recipients can continue to be covered under 

this insurance program and broadens the options available to the states for changing their 

Medicaid systems by allowing TWWIIA work-returnees to retain health insurance benefits under 

this program as well. 

Most recently, the Bush Administration, although not embracing traditional systems-change 

terminology, has undertaken a multiagency study of a variety of barriers to access and 

participation in the programs operated by and in the laws governing more than a half dozen 

major federal agencies. This self-evaluation effort, undertaken as part of the Administration’s 

Olmstead initiative and conducted pursuant to an Executive Order issued in June 2001,21 resulted 

in the preparation of a preliminary report and findings by the Department of Health and Human 

Services (HHS) on December 26, 2001.22 

Closely related to systems-change is advocacy. Legislation of the past decade often has provided 

advocacy resources for use both on behalf of and by individuals and for use in bringing about 

broad-based legal or institutional reform. Thus, such statutes as IDEA include technical 

assistance resources for training parents in understanding the special education system and in 

fully benefiting from the rights and services the law offers. Technical assistance to people with 

disabilities, governmental entities, and business is also a key component of the ADA and 

represents a significant element of the Department of Justice’s (DOJ’s) implementation of that 

statute. 

Advocacy assistance has not been confined to education and training or to the provision of 

information about the law; it has also included creation of individualized legal advice and 

assistance resources, mainly through the protection and advocacy (P&A) system, to assist 

individuals not only in understanding but also in securing their rights. Such resources exist in the 

VR system, in the developmental disabilities program, and under the TWWIIA. 

22

RESEARCH 

Recognizing the technological, legal, economic, and social complexities associated with many of 

the issues faced by Americans with disabilities, Congresses and Administrations of both parties 

have placed a high priority on research. Conducted mainly through the National Institute on 

Disability and Rehabilitation Research (NIDRR)—also through a number of other agencies and 

programs under the auspices of agencies ranging from the Department of Commerce, the 

Department of Veterans Affairs, and the National Science Foundation—this research effort has 

featured the creation and support of a number of specialized rehabilitation engineering research 

centers (RERC) and rehabilitation research and training centers (RRTC). These include centers 

devoted to specific kinds of technology (e.g., telecommunications access, augmentative 

communications, or wheeled mobility) and centers concerned with specific issues or groups (e.g., 

older persons or children or technology transfer). 

THE NATIONAL COUNCIL ON DISABILITY 

NCD has been an active partner and catalyst for change in the public and private sectors over the 

past years, from its role in conceptualizing and building consensus and momentum around the 

passage of the ADA to its Tech Watch and other subject-specific watch committees that seek to 

identify access problems before they become acute and reach out to government and the private 

sector in an effort to foster timely dialog aimed at resolving problems to its recent work in 

developing consensus recommendations around education program monitoring23 and description 

and elimination of the discrimination faced by persons with mental illness.24 

As an oversight agency without legal power to direct the actions of others, NCD’s impact stems 

from the cogency of its arguments and the depth of its commitment. Most recently, NCD has 

published a series of five civil rights monitoring reports addressing in detail the implementation 

of the ADA, IDEA, the Air Carrier Access Act, the Fair Housing Amendments Act, and Section 

508 of the Rehabilitation Act.25 Growing out of findings and recommendations from its 1996 

23

disability summit,26 these reports have cataloged impressive achievements in the protection of 

civil rights, but, as will be discussed, they have also uncovered serious and recurrent problems. 

ENFORCEMENT 

Taken individually and as a whole, these reports show that enforcement of disability civil rights 

statutes and of civil rights provisions of the laws creating service programs has fallen far short of 

what is minimally necessary to make these laws effective. Whereas the specifics differ from 

statute to statute and from enforcement agency to enforcement agency, some of the chronic 

problems disclosed are lack of resources devoted to enforcement; failure of agency leadership to 

identify enforcement as a high priority; lack of clear enforcement goals or of accountability for 

failure to meet such goals as do exist; absence of pattern and practices reviews by oversight 

agencies; poor coordination between and among agencies with overlapping or dual jurisdiction; 

lengthy backlogs and delays in civil rights complaint processing; failure to give the disability 

community reason to believe that consistent and meaningful redress for real grievances is 

available under law; and inconsistent involvement by people with disabilities in articulating 

priorities and providing advice on implementation. 

NCD believes that without credible sanctions, achievement of progress in civil rights under law 

becomes all the more slow and difficult. As detailed later in this report, the stakes on effective 

federal enforcement have grown higher in the past year because a series of U.S. Supreme Court 

decisions has significantly narrowed the opportunities available for individuals with disabilities 

to pursue their rights by private lawsuits. These decisions include limiting the range of people 

who meet the definition of “qualified individual with a disability” for purposes of coverage under 

the employment discrimination provisions of the law; barring many suits by individuals against 

states for violation of most disability civil rights laws; and restricting the availability of fees to 

attorneys who represent individuals with disabilities in many civil rights settings. 

24

THE NEW FREEDOM INITIATIVE 

Another development in disability policy during the past year was the issuance in February of 

President Bush’s New Freedom Initiative (NFI), reflecting the president’s support for equality of 

opportunity and full participation in society for Americans with disabilities. The NFI includes 

several innovative approaches to the achievement of these goals. NCD believes that in the years 

ahead, through refinement and implementation, whether dealing with existing laws or with new 

legislative proposals, enforcement will remain key to achieving NFI’s objectives and outcomes. 

In charting new directions and seeking new ways to harness the energies and values of our 

society, the Administration and Congress can make all our laws meaningful by enforcing them 

with fairness and vigor, thereby bringing closer the day when not merely the laws but the values 

they enshrine become axiomatic in our daily lives and shared experience. 

CONCLUSION 

In the pages that follow, NCD continues its annual practice of reviewing policy developments 

from the preceding year and offering constructive, forward-looking recommendations in areas of 

greatest concern. NCD comes to its task this year with a sober awareness of the many new 

complexities, issues, demands, and preoccupations that lawmakers and members of the executive 

branch face. It does so also with the realization that the new policy initiatives and programmatic 

directions charted by the Administration and Congress will have profound and irreversible 

effects on the lives of all our citizens for many years to come. 

In pursuing these new directions, we know society can no longer afford to consider so-called 

“disability issues” in isolation from the broader dimensions of policy and practice. Whether 

involving education, employment, health, or technology, the decisions we make about these 

subjects for the mainstream will affect all of us and cannot be made without full awareness of our 

indissolubility and oneness as a nation. Nor can decisions about disability policy be made in a 

25

vacuum or on a clean slate. The context for these decisions and the options available to us are 

defined by what has gone before, and only through careful attention to the strengths and 

weaknesses of that record can we hope to build on our successes, avoid repetition of failures, and 

escape confusion and chaos. With attention to the past and confidence in the future, the potential 

of our values, our resources, our technology, and certainly our people is unlimited. 

26

Chapter 1 


Disability Statistics and Research


1. CENSUS 2000 

NCD’s 1999-2000 progress report expressed and documented grave concerns over the accuracy 

and reliability of widely disseminated information about employment rates among people with 

disabilities.27 Our concern was that data developed from the latest Current Population Survey 

(CPS) questionnaire could lead to ineffective or even dangerous public policy decisions. The 

concern was based on a federal consensus that certain CPS items are not adequately designed to 

elicit accurate and reliable information from people with disabilities. So, recognizing the 

problems associated with the use of CPS data to assess employment rates, the Presidential Task 

Force on Employment of Adults with Disabilities (PTFEAD) was tasked to develop more 

accurate and reliable methods for determining the employment status of people with disabilities. 

This work is expected to be completed by July 2002—PTFEAD’s sunset date—and is being 

conducted through the Bureau of Labor Statistics. 

But even as recognition of the deficits in our current data is confirmed by further research,28 

repetition and dissemination of these data continue, much of that dissemination carried out with 

federal support. The danger of the situation is not merely in the proliferation of questionable 

findings, but in the effect of those findings on policy. For example, based in part on the 

conclusion that employment rates among people with disabilities have decreased during the 

1990s, as the CPS data suggest, some researchers have inferred that the ADA, enacted into law in 

1990, must be irrelevant or even a hindrance to the employment of Americans with disabilities. 

As Congress and the courts grapple with key employment policy and civil rights issues, our 

deliberations must be guided by accurate and timely information. Whatever one believes about 

the wisdom of the ADA, the reliability of information is indispensable in evaluating its effects. 

27

The Federal Government should not encourage or support the dissemination of employment data 

until a methodology for assessing employment rates among people with disabilities that is 

acceptable to leading researchers and demographers in the field and credible to persons with 

disabilities can be developed. This methodology, including proposed questionnaires or other data 

collection instruments, should then be validated through field testing before being put into 

widespread use. 

Perhaps some researchers have embraced the CPS data and have been prepared to draw 

conclusions from it because it filled a vacuum. In the absence of other, more widely accepted, 

data and given the need for policy inputs, use of these data was convenient. But now, with the 

possibilities of a reliable methodology close at hand and with the Bureau of Labor Statistics 

findings expected soon, moving to the next stage of public policy development in this area 

should be possible and relying on questionable data simply because we have nothing better to fill 

the vacuum should no longer be necessary. 

The issue here is not federal censorship but sponsorship. Although people have every right to use 

whatever data sources they choose, the government has an obligation to ensure that the 

information dissemination it supports, and the policy inputs it thereby generates, are as reliable 

as possible. To that end, when the Bureau of Labor Statistics offers a new methodology for the 

collection of employment data, NIDRR should convene a panel of demographers, labor 

economists, other appropriate researchers and policymakers, along with persons with disabilities, 

to review the proposed methodology for accuracy and reliability. NIDRR should also work 

closely with the Census Bureau, the Department of Labor’s Office of Disability Employment 

Policy, and such other agencies as may be appropriate to carry out the field testing of all 

instruments suggested above. 

A moratorium on federal support for the dissemination or federally funded use of unreliable 

disability employment data may admittedly cause some problems, but with better data collection 

28

techniques imminent, such inconveniences are greatly outweighed by the harm that results from 

the continued infusion of erroneous information into the public policy pipeline. 

2. RESEARCH 

NCD continues to urge a broad review of all disability statistics and data collection strategies and 

of related disability research priorities and resources. Today, with evidence-based policymaking 

becoming progressively more central to governmental decisionmaking, reliable and accurate 

statistical information and research data are more important than ever in a wide range of policy 

contexts. 

As the need for accurate and timely data grows, the complexities associated with collecting and 

analyzing it are also mounting. Even the most basic information, such as how many Americans 

there are with disabilities, has become steadily more difficult to collect or interpret. Four reasons 

for this difficulty exist. First, various statutes define disability differently. Given the differing 

purposes of various statutes, their yielding divergent estimates of the number of Americans with 

disabilities is not surprising. 

The question whether disability is ultimately a functional, a social, or a legal concept is beyond 

the scope of this report, but from all these standpoints, the differing definitions and varying 

purposes underlying various statutes and programs enormously complicate the research, data 

collection, and policymaking processes. For example, the criteria by which a person meets the 

definition of disability under the ADA for purposes of protection from employment 

discrimination or the standards determining eligibility under the Social Security Act for SSDI or 

the test for whether someone can claim the impairment-related work expenses tax deduction are 

all quite different. Our notions of the size and the needs of the disability population will be 

greatly influenced by which of these definitions and by which functional measures we use. 

29

A second and related reason why valid and reliable disability statistics and research findings are 

more difficult to collect is that even given the same statutory definition of disability, different 

agencies collect data in very different ways. The CPS illustrates this point. Given the same 

informational objective, and with the same statutes borne in mind, the Census Bureau has 

modified its questions in the 2000 census, and different formulations of the questions will 

necessarily bring different results. Any forthcoming new definition of disability, work-ability, or 

similar concepts will of course initially contribute to this problem by creating yet another 

database, but, in the long run, introduction of viable definitions of such terms will offer the 

opportunity for creation of baseline data that, coupled with the use of standardized techniques of 

administration, will yield truly comparable findings over time. 

The third reason for difficulties arises from a very positive source, namely, the increasing role of 

assistive technology in the lives of Americans with disabilities. Because of technology, 

traditional definitions of when and whether a major life activity or function is “substantially 

limited” have become far more difficult to determine and far less universal. For example, 

impairments of mobility (often measured by the ability to move certain distances independently) 

or impairments of vision (conventionally assessed by ability to read standard print) are today, 

thanks to technology, not nearly so easy to assess as once they were. Today, the individual who 

cannot walk may still be able to get around with the assistance of a mobility device, and the 

individual who cannot see the newspaper may nevertheless be able to read it through the use of 

optical scanners. When asked if they are limited in the major life functions of reading or moving 

around, do the users of such technology answer in the affirmative? Likewise, if people whose use 

of technology allows them to work are asked whether they have a work disability, what will they 

say, and what should they say? Similarly, how many people who sincerely and reluctantly 

believe themselves unable to work by reason of a disability could in fact do so if they had access 

to appropriate technology or more accessible work environments? What answer should these 

people give, and what answer do they give? Does their legal status (that is, whether they meet the 

legal test for disability), their functional limitation, or their lack of access to appropriate 

technology and properly designed environments account for their lack of work? 

30

The fourth and final reason for difficulty in the collection of valid and reliable employment or 

other data about Americans with disabilities arises from a series of Supreme Court decisions over 

the past three years that raise the potential for dramatically narrowing the legal standards for who 

is a person with a disability. These decisions, discussed later in this report, essentially hold that 

in determining whether someone qualifies as an individual with a disability so as to be covered 

by Title I (employment) of the ADA, certain mitigating measures, including at least medications 

and eyeglasses, must be taken into account. Moreover, in both the employment and public 

accommodations contexts, the Court has made clear that this determination must be made on an 

individual, case-by-case basis. 

These decisions inordinately complicate any assessment of who the law considers to be a person 

with a disability and how Congress should define those whose lives legislation is designed to 

affect. But from the research standpoint, these decisions also play havoc with the questionnaires 

and other research techniques and the self-reporting data-collection strategies we use. 

For all these reasons, the time is right and the need urgent for a comprehensive reassessment of 

all disability statistics and all data-gathering techniques. Under the authority of Congress, the 

Interagency Committee on Statistical Policy, in conjunction with NIDRR and NCD, should 

undertake this coordinated, comprehensive, high-level review. 

31


Chapter 2 


Civil Rights


1. THE ADA 

a. CONTINUING ATTACKS 

In July 2001, celebrations around the country were held to mark the 11th anniversary of the 

ADA. These celebrations, which have become an annual occasion for assessing progress and 

identifying barriers, hailed the many gains for people with disabilities over the past decade. But 

although proudly and gratefully recalling the many gains that have been made under the ADA, 

these annual events also provide an occasion for facing sober realities and for confronting the 

existence of many remaining, and some new, barriers. 

This year, ominous new barriers were a topic of intense attention and grave concern. Efforts in 

Congress, such as the proposed ADA Notification Act,29 would require individuals with 

disabilities seeking to file suit against “public accommodations” or “commercial facilities” under 

Title III of the ADA to give 90 days advance notice of their intention to do so. This requirement 

is not imposed on any other litigants seeking to avail themselves of protections or rights under 

federal law. 

As discussed in last year’s NCD progress report,30 such proposals as the ADA Notification Act 

continue to sow fear among Americans with disabilities and to consume the time and energy of 

many advocates. To help allay deep-seated community concerns, NCD recommends that the 

Administration and Congress put on record its unequivocal opposition to any weakening 

amendments to the ADA, especially amendments that treat the ADA in particular or civil rights 

laws in general in isolation from the rest of civil legislation in our nation. 

33

b. OTHER THREATS 

Other new and disheartening threats to the ADA were also on the minds of this year’s celebrants. 

Arising largely from judicial interpretations of the law, these new barriers to enforcement 

severely restrict the ability of private citizens to vindicate their civil rights in the courts. 

By way of background to this year’s decisions, which, in toto, continue and accelerate the process 

of closing the courts to civil rights claims by citizens with disabilities, the line of relevant decisions 

must be followed back to 1999. Then the Supreme Court ruled in the so-called Sutton trilogy of 

cases31 that for purposes of the right to bring suit for employment discrimination under Title I of 

the ADA, the determination of whether a person is a “qualified individual with a disability” (in 

other words, whether an individual is covered by the law) needs to be made after various 

“mitigating” factors and measures have been taken into account. This ruling meant that many 

persons who previously would have considered themselves to have a disability and been commonly 

regarded as such were barred from bringing suit under the ADA because, with the application of 

such mitigating measures as the eyeglasses in Sutton or the blood pressure medication in Murphy, 

they no longer experienced “substantial limitation” of any pertinent major life activity, including 

the ability to work. 

Following on the heels of this restriction in who has the right to sue, additional limitations have 

now been placed on whom discrimination suits can be brought against. The Supreme Court ruled 

in February 2001, in the Garrett case,32 that ADA Title I employment suits claiming money 

damages cannot be brought against state governments, because the 11th Amendment to the 

Constitution bars suits against sovereign entities (which states are) without their consent. 

Traditionally, even where a state has not consented to be sued, the 14th Amendment has 

overridden their immunity from suit in the civil rights area. This may remain so in connection 

with racial or gender discrimination, but may not be the case with disability-based 

34

discrimination. According to the Court in Garrett, the conditions established by the Constitution 

for federal legislation overriding state sovereign immunity have not been met by the ADA. 

Whether Congress can revise the law to meet the standard by making more extensive findings of 

systematic and pervasive discrimination against people with disabilities by state governments 

remains uncertain. Given certain statements in the opinion suggesting that disability 

discrimination can in certain instances be “rational,” and given the extensive evidence of 

pervasive discrimination that Congress already collected and cited in the ADA findings section 

and in its legislative history, considerable fear exists that the Supreme Court could hold that 

Congress lacks constitutional authority for overturning the Garrett ruling. 

Other troubling uncertainties also surround the implications of these decisions. For instance, 

whether the Sutton decision and its companion Murphy decision will be extended to suits under 

Title II or Title III of the ADA remains uncertain. If they are, then the ability of individuals to 

contest alleged discrimination in the provision or denial of public services or public 

accommodations will likewise be substantially limited. 

Similarly, critical unanswered questions attach to the more recent Garrett decision. Here again, 

the key issues relate to whether the decision will be extended. If states are immune from suit for 

money damages for employment discrimination, will they also be immune from such suits in 

connection with alleged denial of public services or access to public programs under Title II? To 

be sure, such decisions as the Court’s 1999 ruling in Olmstead v. L. C.,

33 though predating the 

Garrett decision, have upheld the right of institutionalized people with disabilities to bring suit 

under Title II, and many suits under Title II, including Olmstead, seek outcomes that do not 

involve money damages. On the one hand, to hold that the 11th Amendment bars suits against 

states for injunctive relief or other nonmonetary relief, the Supreme Court would probably have 

to overrule its historic Ex Parte Young precedent, which has stood for nearly a century.34 On the 

other hand, without being overruled, Young has been significantly limited by a variety of lowercourt holdings in recent years, to the point where, for it to apply, suits must seek only prospective 

35

relief, must be brought not against the state but against named state officials, and must avoid a 

number of other highly technical pitfalls.35 

It does not appear that Garrett bars suits against local governments, as distinguished from states. 

Garrett also does not detract from the Federal Government’s ability to pursue Title I cases. 

c. MIXED RESULTS 

Last year’s report noted uneven results in the implementation of the ADA. For example, whereas 

it noted appreciatively that city streets in most places are more accessible than ever before, 

NCD’s progress report also observed that public transportation in many localities and regions 

remains inaccessible, unreliable, inconvenient, or untimely. While this pattern remains the case, 

NCD is encouraged by the transportation initiatives embodied in the president’s New Freedom 

Initiative and by the approach taken to demonstration projects in the transportation area. These 

efforts are discussed in chapter 10. 

Because of the accessibility of growing numbers of streets and sidewalks and because of the 

increasing incorporation of ramps and other environmental accessibility features into the design 

of public and commercial buildings, the number of people with mobility disabilities who now 

have entry to more buildings continues to grow. But as noted last year, more needs to be done. 

Some of these needs continue to exist in the realm of physical access. Others involve parallel 

access issues of concern to people with a variety of disabilities. 

While we have by no means achieved universal physical access, as the law contemplates, the 

pressing issues of access for people with sensory disabilities and people with cognitive 

disabilities must also be addressed with vigor and focus. For these citizens, the access issues are 

not about their literal ability to enter the building but about their ability to locate the goods, 

services, facilities, or information that they want. These matters too will be discussed in greater 

depth later in this report. 

36

Last year’s report indicated that although the ADA covers Americans with cognitive and mental 

disabilities just as it does those with physical or sensory ones, these citizens continue to fight for 

access to the programs offered by both public and private entities. Citizens with cognitive and 

mental disabilities face stereotypes and fears of a unique and persistent nature, the overcoming of 

which involves sustained and coordinated efforts in public education and law enforcement that 

include the efforts and resources of both the legal and public health sectors. 

But across the spectrum of agencies and laws, and in connection with all disabilities, enforcement 

presents troubling and pervasive issues. These enforcement problems have been extensively 

documented. In June 2000, NCD issued its report Promises to Keep: A Decade of Federal 

Enforcement of the Americans with Disabilities Act,

36 which analyzed ADA enforcement efforts of 

the Department of Justice (DOJ), the Department of Transportation (DOT), the Equal Employment 

Opportunity Commission (EEOC), and the Federal Communications Commission (FCC). 

Although recognizing the initiatives and positive actions of these agencies, NCD’s 1999-2000 

annual report also identified significant shortcomings in enforcement. These shortcomings 

included the lack of any coherent, unified, and comprehensive national enforcement strategy as a 

major weakness. The report found that enforcement efforts have been shaped largely by an 

approach based on case-by-case complaint handling rather than compliance monitoring and 

follow-up technical assistance. 

Our research revealed that agencies, to varying degrees, have been hesitant to exercise leadership 

in litigating difficult or controversial cases or even in referring cases to the DOJ for litigation. 

The efficiency of complaint handling has varied greatly across agencies and the complaint 

handling process has been slow even in the best-performing agencies, and fraught with 

unreasonably long delays in the worst. 

37

Despite several funding increases in the past decade, the report found that no federal agency had 

an enforcement budget commensurate with the scope of its ADA responsibilities. Another 

significant finding was that agencies have provided few opportunities for input from people with 

disabilities in setting overall priorities for policy development and enforcement activities. 

Accordingly, NCD recommended that the DOJ assert strong leadership in bringing together the 

cognizant federal enforcement and oversight agencies to develop a strategic vision and plan for 

ADA enforcement across the Federal Government, including a well-coordinated litigation 

strategy. We recommended that all the agencies must look at ways to focus their enforcement 

resources on means to increase the consumer-responsiveness of key operations, such as 

complaint handling. We argued that all these actions should be undertaken with appropriate input 

from and collaboration by people with disabilities. 

On balance, most of these recommendations remain to be acted on. With the advent of a new 

Administration, initially faced with the task of putting personnel, procedures, and policies in 

place and more recently faced with national security concerns of an unforeseeable nature, this 

inaction is certainly somewhat more understandable than might otherwise be the case. 

Nevertheless, we believe it important to emphasize that the DOJ has an uneven history of acting 

decisively to promote inclusion and accessibility for Americans with disabilities under the 

ADA.37 

As we did in 2000, NCD once again commends the DOJ for intervening to help protect the 

integrity of the ADA and to defend it from the onslaught of lawsuits attacking the very basis of 

the law. Among the most notable instances over the past two years, the DOJ intervened in a court 

case to establish insurance as a public accommodation under Title III and to blunt efforts aimed 

at securing a judicial determination that Title III did not apply to goods and services made 

available to the public over the Internet, filing important amicus briefs in cases heard by several 

U.S. Courts of Appeal.38 Additionally, the DOJ filed an amicus brief in the Nored case39 

38

challenging a Tennessee statute that prohibits people with “any apparent mental disorder,” even 

the most minor, from occupying positions as public safety dispatchers. 

Along with commending the DOJ for its efforts to establish constructive policy positions through 

the courts, NCD also urged the DOJ to make use of the variety of tools at its disposal (including 

regulations, subregulatory guidances, and technical assistance documents) to take a leadership 

role on policy issues in Title II and Title III enforcement and to help covered entities understand 

and comply with their obligations under the law in emerging areas, such as e-government and the 

Internet, that have not been highlighted in enforcement efforts or technical assistance releases to 

date. 

Needless to say, the types of arguments the DOJ can make in court and the kinds of enforcement 

and technical assistance activities it can undertake depend in large part on the issues involved. In 

this connection, one crucial difference between the Sutton trilogy and the Garrett cases must be 

noted: Whereas Sutton is based on statutory interpretation, the Garrett decision is predicated on 

the Constitution. Nevertheless, both decisions present major issues for the DOJ to resolve and 

opportunities for the DOJ to act. In addition, both decisions also present major issues for EEOC 

to act on. 

The first question to be asked about the DOJ’s responses to these decisions is whether the 

department believes these cases to have been correctly decided. Consistent with fidelity to and 

respect for the decisions of the high court, various well-established strategies for reversing or 

limiting these decisions exist, but the DOJ must believe that the decisions represent a 

misconstrual of statutory meaning or constitutional principles. The Sutton trilogy decisions, 

because they rely on interpretation of the ADA, can readily be overturned or modified by 

congressional amendment of the law. Numerous precedents, such as the Civil Rights Restoration 

Act of 1991, exist for such congressional response in the civil rights arena over the past 15 years. 

Leadership by the department would be invaluable in seeking to clarify, for example, that 

mitigating measures do not include submission to involuntary or potentially harmful medical 

39

treatment and that such measures do not include the use of AT. If the DOJ were not prepared to 

go so far as recommending overturning of the postmitigation assessment of major life-activity 

limitation, clarification of what will and will not constitute applicable mitigation under the law 

would allow the postmitigation standard to continue in effect, while ensuring that workers will 

not be forced to submit to coercive interventions in their health and private lives as a condition 

for pursuing their aspirations to work. 

With Garrett, the constitutional basis for the decision makes the task of modifying its effects far 

more daunting. In Garrett, the state of Alabama successfully argued that the ADA does not meet 

the criteria established by the 14th Amendment for enactment by Congress of civil rights laws 

that override states’ 11th Amendment sovereign immunity from suits. In reaching its decision in 

the case, the court found the following: (1) Congress lacked (or, in the findings section of the 

ADA, failed to articulate) sufficient evidence of systematic discrimination and denial of equal 

protection to people with disabilities by the states to justify the abrogation of 11th Amendment 

immunity; and (2) even if the evidence of systematic discrimination were sufficient to justify 

congressional action to set aside states’ sovereign immunity, the requirements of the ADA, 

including the provision of reasonable accommodations, go so far beyond what would constitute a 

mere ban on discrimination as to constitute a disproportionate and excessive response on 

Congress’s part to the problem the statute sought to address. 

It is interesting that the DOJ itself filed briefs supporting the constitutionality of the ADA and 

urging the Supreme Court to hold the ADA’s express abrogation of states’ 11th Amendment 

immunity to be a proper exercise of Congress’ power to enforce the equal protection clause of 

the 14th Amendment.

40 

In last year’s progress report, NCD forecast that “the court’s decision will have a crucial bearing 

on the future of disability rights.” If anything, that was an understatement. Pending further 

decisions, a number of key issues, bearing on all civil rights statutes and presumably even on 

access to services provided under federal-state partnerships, hang in the balance. In addition to 

40

those already noted in subsection b, the key issues now in play are whether the Court’s reasoning 

in Garrett applies to other federal disability rights statutes, such as Section 504 of the 

Rehabilitation Act,

41 and whether and how states can waive or be deemed to have waived their 

sovereign immunity from private lawsuits. 

These questions will be taken up later in this chapter when we discuss recent court decisions that 

do not directly involve the ADA but may have a profound and adverse effect upon it. For the 

moment, in light of the continuing uncertainties and in view of the fears of many persons with 

disabilities that their hard-won civil rights face dramatic and severe erosion, NCD recommends 

that the DOJ develop and assert clear and unambiguous views on these points, both for 

presentation to Congress and, subject to the inevitable factual variations in each case, for use in 

the courts as circumstances warrant. 

2. HATE CRIMES 

In last year’s report, NCD recommended that Congress hold hearings to extend federal hate 

crimes legislation to cover a variety of population groups, including persons with disabilities. 

NCD reiterates its recommendation that such legislation be adopted in 2002. 

Recent months have provided the most painful reminders of what hate and prejudice can do. As 

our nation struggles to accommodate its values of respect and equality to an era of personal fear 

for many and security concerns for all, decisively and expansively asserting, in law as in practice, 

the enduring values that we hold becomes more important than ever. At this time, too, ensuring 

that all Americans are recognized and made to feel welcome as full members of our society is 

vital. 

For Americans with disabilities, this means freedom from, and legal protection against, the 

extreme form of discrimination represented by bias crimes. Whether such crimes are predicated 

on malice, an opportunistic belief that people with disabilities are less likely to resist, resentment 

41

at the civil rights demands of these citizens, or other causes, society must make clear, through the 

unqualified pronouncement of federal law, that our disapproval of hate crimes is backed up by 

meaningful sanctions and deterrence. 

Accordingly, NCD strongly recommends that Congress enact appropriate federal hate crimes 

legislation during its 2002 session. 

In last year’s status report, NCD also recommended that Congress increase appropriations for 

preventing and responding to alleged violations involving certain federally protected activities. 

Where manifestations of hate arise from or are directed against people in response to their pursuit 

of or exercise of federally protected rights, society’s responsibility is all the greater. Because 

retaliation in any form places a heavy burden on the vindication of all rights and on the exercise 

of the responsibilities of citizenship, resources must be identified and strengthened for ensuring 

that the requisite vigilance, investigation, and follow-up are available and used. 

In its 1999-2000 annual report, NCD commended the proactive efforts of the DOJ’S Bureau of 

Justice Assistance (BJA) to raise awareness at all levels of government regarding hate- and biasrelated crimes. NCD recommends that these efforts, under the National Hate Crimes Training 

Initiative, continue. But NCD also recommends that the curriculum be reviewed to ensure that 

issues bearing specifically on hate crimes against persons with disabilities are fully incorporated 

and adequately addressed in all videos, manuals, in-person trainings, and other materials and 

efforts. Specifically, NCD recommends that BJA ensure that the role of bias in opportunistic 

crimes against persons with disabilities be fully appreciated by law enforcement personnel; that 

crimes committed by caregivers against persons with disabilities be recognized as bias crimes 

where warranted; that the difficulties faced by many people with disabilities in bringing their 

experiences of victimization to the attention of law enforcement be recognized; and that 

government agencies and officials at all levels make special efforts to ensure that people with 

disabilities who have been the victims of hate crimes are accorded every opportunity to 

participate effectively in the legal process to secure redress and protection. 

42

NCD also recommends that training materials and official practices identify and candidly 

address what may best be described as the secondary consequences of bias. If a police 

department or public prosecutor declines to pursue charges against a defendant out of a belief 

that a witness or victim with a disability may not be regarded as a credible witness (as is widely 

reported to happen in cases of persons who are blind and therefore cannot make visual 

identifications of suspects), or if a prosecutor declines to call a person with a mobility disability 

as a witness because the courthouse is inaccessible or a sign-language interpreter is unavailable, 

then the individual with a disability has been doubly victimized: once by the alleged hate crime, 

then by the inability of the justice system to demonstrate the necessary flexibility and 

responsiveness. 

Because they result in decisions being made that affect people’s lives on the basis of factors that 

deny the individuality and uniqueness of each person, stereotypes are as harmful as bias, even 

when motivated by manifestly protective instincts. Unless hate crimes are recognized for what 

they are and dealt with effectively through training and oversight, any attempt to deal with them 

that does not take the institutional response into account is unlikely to achieve the level of 

success desired. Accordingly, NCD recommends that BJA take all possible measures to identify 

these issues and to ensure their proper prioritization in all hate crime–related training efforts. 

3. GENETIC DISCRIMINATION 

A year ago, NCD recommended that legislation barring discrimination by health insurers or 

employers based on genetic information be introduced and acted on by the 107th Congress. NCD 

believes that recent developments have made the case for legislation barring genetic 

discrimination more pressing than ever.42 

As a backdrop to the discussion of the specific provisions that such legislation should contain, 

NCD recommends that the Office of Management and Budget (OMB) or the Office of Personnel 

Management (OPM) undertake an assessment of the impact of Executive Order 13145, issued by 

43

the previous Administration, which barred federal agencies from making use of genetic testing in 

hiring and promotion decisions and further required adherence to all applicable state and 

federal confidentiality provisions in those rare instances where a federal employer needed to 

obtain genetic information about a present or prospective employee. The assessment 

recommended here should seek to evaluate the extent of compliance among federal agency 

employers, the administrative viability of the order’s provisions in light of other legal and 

practical requirements bearing on the public sector employment relationship, and the impact, if 

any, of the order on documented short-term or actuarially anticipated long-term costs of 

providing health insurance to federal workers and their dependents. 

Based on the findings of this assessment, which should be completed within the life of the 107th 

Congress (but which should not serve as grounds for delaying reform legislation that may in the 

interim be considered by Congress), the Administration should propose legislation that builds on 

the lessons learned in the federal sector but that applies to all employers and all providers of 

health insurance coverage. 

As suggested, new urgency has been lent to the subject of genetic screening for employment by 

the rapid growth of interest in genetic testing and by scientific discoveries, associated with 

completion of the human genome mapping project, that purport to link specific diseases with the 

presence, absence, or mutation of particular genes. Although no authoritative data have been 

found, all indications point to the increasing use of genetic screening by employers. 

Leaving aside the likely sensationalistic nature of press coverage concerning these biomedical 

breakthroughs, many believe that creation or manipulation of genes in the laboratory or the test 

tube is a process that should be approached only with the gravest humility. Others believe that 

such technology represents a great opportunity for increasing longevity and enhancing the quality 

of life. For those who believe that genetic research holds the key to the conquering of disease and 

a better life for all, and alike for those who believe some or all contemporary genetic research to 

44

be an assault on the fundamental dignity of the human being, use of genetic information to 

condition the availability of employment or health insurance should be equally anathema. 

From the standpoint of any strong opinions about the wisdom or the direction of genetic 

research, the conditioning of key decisions about people’s lives on information concerning their 

genetic endowment should be a matter of the utmost concern. To those who regard biotech as 

scientifically promising and ethically sound, it must be apparent how the fear of genetic 

discrimination can lead people to forgo testing and diagnosis and, in due course, limit the pool of 

available persons for participation in clinical trials. Likewise, to those who regard genetic 

research and testing as scientifically misguided or morally objectionable, the intolerability of 

allowing employers or HMOs to make decisions about people’s lives based on such information 

must surely be equally apparent. 

Some may argue that denying employers or health insurers the right to use genetic information in 

determining who to hire or who to insure will result in driving up insurance costs for all, 

ultimately reducing the availability of coverage in our nation. We have been able to discover no 

data to support this hypothesis. On the contrary, although also not demonstrated by statistical 

research, the opposite appears more likely, and it seems fair to propose that by allowing the 

collection and use of genetic data for employment or insurance purposes, we may create so much 

fear of genetic information among the populace at large that people will avoid or delay seeking 

medical care for all manner of symptoms and conditions until their illnesses are far more 

advanced and far more costly and destructive. Thus, whatever the impact of a ban on genetic 

testing for health insurance costs, failure to institute the necessary protections may well raise the 

overall costs of health care for our economy. Thus, to allow genetic testing unchecked in 

insurance and employment may represent not a savings, but a shifting of costs in all too many 

cases to the public sector as payer of last resort. 

NCD endorses legislation imposing strict confidentiality requirements on the use of genetic 

information and authorizing monetary damages and other penalties for its misuse or unauthorized 

45

release. Yet, experience and legislative precedent may dictate recourse to a still higher standard 

in this area. Rather than simply impose restrictions on the use of information and penalties, 

however severe, on the misuse of information, we believe the better course is to prevent 

acquisition of the information in the first place, except in those cases where clear and compelling 

grounds exist for its provision. Accordingly, NCD recommends that in most cases, and except 

where specific exceptions apply, employers and insurers should be barred from seeking or 

collecting genetic information. To prevent circumvention of this ban, employers and insurers 

should also be barred from making the waiver of genetic privacy rights a condition of 

employment or coverage. 

If Congress is unable or unwilling to protect genetic privacy, it should at least clarify that 

discrimination in employment or insurance (including self-insured employer plans regulated 

under the Employee Retirement and Income Security Act of 1974 [ERISA]) based on genetic 

makeup or genetic predisposition is a form of disability discrimination, actionable under the 

ADA or other civil rights laws. The DOJ should take the lead in working with Congress to 

develop and support such legislation. 

Without broad-based protection of genetic privacy, the freedom and opportunity that mark our 

nation may become conditioned by the identity of one’s parents, in ways never imagined outside 

of science fiction until now, but ways that are all too imminent and real nonetheless. Truly, then, 

will the sins of the parents, and of their parents before them, be visited on the children. 

4. VOTING ACCESSIBILITY 

A year ago, NCD urged adoption of amendments to the Voting Accessibility for the Elderly and 

Handicapped Act.43 These recommended amendments provided that all polling methods used in 

federal elections, including voter registration, be accessible to voters with disabilities and voters 

who are elderly. 

46

The tense and uncertain weeks that followed last November’s presidential election will never be 

forgotten by anyone who lived through them. Whereas the peaceful methods our nation used to 

resolve its succession crisis are surely a model to the world, the election and its aftermath also 

exposed significant shortcomings in our electoral procedures and technology. As important, last 

year’s election served as the occasion for the United States Supreme Court to make clear in its 

Bush v. Gore decision that equal protection in the exercise of the franchise is a matter of central 

and national constitutional concern. 

As anecdotes and surveys have made clear, many Americans with disabilities face obstacles in 

voting far greater than confusing instructions or malfunctioning machines. Some are able to vote 

only with difficulties that would be intolerable to other citizens or by forfeiting the fundamental 

protection of the secret ballot, and some are unable to vote at all, solely by reason of the interplay 

between their disabilities and the arrangements for voting we have thus far made. When an 

individual’s local polling place, or any reasonably located polling place, is inaccessible to 

persons who use wheelchairs or who have other mobility disabilities, we place such citizens 

under access burdens that we would not allow if they were going out to buy a hamburger. It says 

little, or perhaps much, about our esteem for the right to vote that we have made better and more 

far-reaching arrangements for the accessibility of fast-food restaurants than we have for the 

places where Americans choose their leaders. Yet, throughout this country, the problem of 

inaccessible polling places remains vast. 

Nor is the physical accessibility of the polling place or of the voting booth the only barrier. For 

citizens with visual or other disabilities that prevent them from reading the print instructions on 

voting machines or from independently knowing which lever to pull, which touch zone to tap, or 

which box to mark, the right to vote does not include the privilege of a secret ballot, and this 

despite the fact that technology exists and has been successfully used in several jurisdictions that 

would allow the independent casting of votes through the use of speech output in addition to 

print on the voting machine. 

47

At the same time, the voting booth poses obstacles to persons with cognitive disabilities who 

need assistance in voting but whose access to available and sensitive assistance depends totally 

on chance. 

Additionally, for those persons who, because of age-associated frailty or because of disability, 

cannot get to the polls to cast their votes in person, absentee ballot laws too often provide 

inadequate protections. Absentee ballots, as governed by a multiplicity of state laws, may be 

legally unavailable to persons who are actually present in the jurisdiction on election or primary 

day or they may require a signature that an individual cannot render or an attestation or oath 

(from a person who needs physical assistance in marking the ballot) that no one else has filled it 

out. The absentee ballots may be provided only in print, requiring persons who are blind and who 

need to dictate their choices to someone else not only to again sacrifice their secret ballot but 

also, in cases in which one or another such oath is required, to potentially trade their right to vote 

for the dubious opportunity of committing perjury. 

The barriers to citizenship do not end here. Voter guides and other instructional materials are 

rarely provided in alternative or accessible formats, and when they are it is generally by the grace 

of local election officials rather than through any sense of legal obligation. 

Statistics assembled and presented to Congress by NCD in 2001 put the situation into dramatic 

profile.44 A full one-third of persons with disabilities of voting age are not registered to vote. 

Even outreach to these voters under the Motor Voter Act has fallen short, judging for example 

from the fact that some 42 percent of persons receiving vocational rehabilitation services were 

never offered the opportunity to register. Some 81 percent of persons with significant visual 

impairments must sacrifice their right to privacy (a right taken for granted by everyone else) in 

order to vote by reason of the fact that they cannot independently read or enter the necessary 

information. Most striking of all, if Americans with disabilities were able to vote in the same 

proportions as their nondisabled fellow citizens, some 3.5 million more votes would have been 

cast in the November 2000 national elections. 

48

Unless we are to adopt the notion that people with disabilities care less about the future of their 

country or about their civic duty than other citizens do, responsibility for this disparity must be 

laid squarely on the difficulties and barriers these disenfranchised citizens face in attempting to 

enter the civic mainstream. 

Recent and pending federal litigation holds out some hope of reform, but the broad-based reform 

legislation currently under consideration by Congress is the key to improving or perpetuating this 

unacceptable situation. In this connection, NCD made detailed recommendations to Congress 

concerning the Help America Vote Act of 2001,45 which the House adopted and referred to the 

Senate in December. 

A number of states have also enacted election reform legislation in the wake of last year’s 

experience, but few if any of these state laws appear to address the unequal protection of the laws 

encountered by so many citizens with disabilities in their efforts to exercise the simple 

democratic right of voting. Faced with this evidence of state inability, or indifference, only 

Congress can act to ensure equal protection of the laws, as the Supreme Court boldly undertook 

to do last year. 

As the 107th Congress returns to the consideration of federal election reform legislation in its 

second session, the Senate will initially be called on to adopt its version of voting reform and 

assistance legislation. Because the House has already adopted legislation, the subject cannot be 

considered de novo in that chamber. Nevertheless, through Senate action and the eventual work 

of the conference committee, NCD recommends the passage of legislation that meets the 

concerns raised in our submissions to Congress and in our reports and studies. It is essential that 

the eventual legislation provide direction, incentives, and flexibility to states in making federal 

elections accessible to people with disabilities, but the legislation must contain national standards 

that guarantee privacy, accessibility of voting facilities and election equipment, and accessibility 

of registration and voting procedures and of voter information to all persons with disabilities. 

49

The legislation should further provide for culturally sensitive and appropriate assistance to voters 

with disabilities at the polls and in outreach to voters with disabilities, among other 

disenfranchised groups, to educate and assist these citizens and to ensure that they are able to 

register and vote with dignity. Appropriate technical assistance and training should be made 

available to poll workers, local elections officials, and others who have contact with voters with 

disabilities or who bear any measure of responsibility for the electoral process. Additionally, the 

law should provide for the involvement of representatives of the disability community in its 

implementation and in the development of policies, oversight, and regulations under the law. 

Finally, the new law must provide for its enforcement and for the accountability of state and 

local officials for that enforcement. 

5. CONGRESSIONAL ACCOUNTABILITY ACT 

In its 1999-2000 annual report, NCD recommended that the Congressional Accountability Act 

(CAA) of 199546 be amended to make the provisions of Section 508 of the Rehabilitation Act 

applicable to all congressional “instrumentalities.” On December 31, 2000, the Office of 

Compliance (the agency established by the CAA to administer the law’s provisions and to report 

to Congress on changes that should be made in the law) issued its statutorily required biannual 

report. In that report, the office indicated that it was not yet in a position to recommend coverage 

of the congressional instrumentalities (namely, the General Accounting Office [GAO], the U.S. 

Government Printing Office [GPO], and the Library of Congress [LOC]) under Section 508. The 

office indicated that further experience and research were needed before such a coverage 

recommendation could be made. 

On November 13, 2001, the Office of Compliance issued an interim report recommending that 

the CAA be amended to make the provisions of Section 508 applicable to all congressional 

employing offices and specifically to the three congressional entities noted.47 For the same 

reasons stated by the Office of Compliance in its interim report, NCD joins in this 

recommendation and commends the Office for the soundness of its analysis and conclusions. 

50

The interim report indicates that a number of key factors have changed during the past year. Most 

notably, the report cites the fact that regulations governing the operation of Section 508 and 

detailing its requirements have been put into effect for the executive branch and that the 

executive branch has been operating under these regulations since they came fully into force on 

June 25, 2001. Significantly, the executive branch has suffered no serious dislocation as a result 

of the implementation of these important new access provisions. 

In addition, the office’s interim report notes that one of the congressional instrumentalities, GPO, 

has undertaken voluntarily to comply with the Section 508 guidelines in its management of some 

30 Web sites on behalf of executive branch agencies. Once again, the evidence from this 

voluntary compliance is favorable to Section 508. Application of the provisions of Section 508 to 

congressional employing offices and to the congressional instrumentalities is manifestly in the 

public interest and has been deemed feasible and cost-effective. Its application to the 

congressional instrumentalities would simplify the provision of access for all because it would 

create greater clarity and standardization regarding what is required and would facilitate the 

sharing by Congress of the many training and technical assistance resources that have been 

created under Section 508 in its implementation efforts. With these resources and the associated 

experience, and with the commitment given by the Office of Compliance to be of assistance in 

the implementation process, Congress should have no hesitation in adopting the recommended 

amendment to the CAA. 

Accordingly, NCD recommends that Congress enact the needed amendments to the CAA 

promptly and provide for the technical assistance and other resources necessary to ensure 

effective incorporation of the principles and provisions of Section 508 into the work of all 

congressional offices and entities without delay. 

51

6. OUTREACH TO DIVERSE CULTURAL GROUPS 

As NCD noted in last year’s report, a large segment of the population, particularly those from 

diverse racial, cultural, and ethnic communities, continue to be excluded from full participation 

in all aspects of American society. Years of model programs, technical assistance, and other 

federal initiatives have failed to adequately improve the status of people with disabilities from 

diverse cultures. 

Overall concerns include (1) unequal access to and benefits under the same federal laws that have 

seen at least some level of implementation for the larger disability community, and (2) the 

persistence of dual discrimination as a barrier to people with disabilities from diverse cultures. 

America’s diverse population requires us to make a conscious effort to ensure that the needs of 

all people are addressed. In this regard, NCD acknowledges the commitment to inclusion 

reflected in President Bush’s New Freedom Initiative and the commitment of the Administration 

to educational reforms that reach all students, including those from minority and disadvantaged 

backgrounds and those with disabilities, and that promise the use of innovative strategies 

combining flexibility and accountability. Although expressed in different terms and, in many 

cases, with different implementation strategies, these new initiatives represent the continuation of 

a bipartisan commitment that has spanned administrations and congresses of all parties. 

a. THINK TANK 2000 ON DIVERSE CULTURES 

Congressional representatives, national civil and human rights leaders, people with disabilities, 

and people from diverse cultures participated in NCD’s May 2000 Think Tank project to define a 

more inclusive public policy agenda pertaining to the needs of people from diverse cultures. The 

participants reached consensus on three areas for strategic action: (1) promote leadership 

development and include emerging leaders in public policy decisionmaking; (2) disseminate 

52

user-friendly and culturally sensitive information on rights and responsibilities; and (3) work to 

build and strengthen alliances with civil and human rights groups in the broader community. 

NCD was asked to continue assisting with conversation around these issues and has continued to 

do so. A summary paper from the May 2000 workshop, Carrying on the Good Fight: Summary 

Paper from Think Tank 2000—Advancing the Civil and Human Rights of People with 

Disabilities from Diverse Cultures, can be accessed on the NCD Web site.48 

NCD recommends that these efforts continue and that the Administration and Congress 

undertake to participate in this process, to review the findings and recommendations of the Think 

Tank paper and follow-ups, and to work with emerging leaders of diverse cultural backgrounds 

from the disability community to continue refining its response to their needs and concerns 

within the framework of its overall outreach and reform efforts in education, housing, civil rights 

enforcement, and other contexts. To this end, NCD recommends that the Administration 

designate a liaison for this outreach. 

b. PRESIDENT’S INITIATIVE ON ASIAN AMERICANS AND PACIFIC ISLANDERS 

A 1999 Executive Order was aimed at increasing the participation of Asian Americans and 

Pacific Islanders in federal programs.49 Subsequently, members were named to the Advisory 

Commission on Asian Americans and Pacific Islanders. The commission studied ways to 

increase public and private sector and community involvement in improving the health and wellbeing of Asian Americans and Pacific Islanders, increase their participation in federal programs 

in which they may be underserved, and foster research and data collection, including information 

on public health. 

These outreach efforts elevated key issues of concern to these populations to a heightened level 

of visibility. NCD recommends that the Administration follow up on the work of this commission, 

with a view to identifying and implementing recommendations and findings where appropriate, 

53

with particular attention to those findings and recommendations that illuminate the intersection 

between these groups and disability. 

In connection with such follow-up, NCD commends the Administration for its creation, under 

the auspices of the NFI, of the National Technical Assistance Center for Asian Americans and 

Pacific Islanders. NCD hopes and expects that the new center will be successful in addressing a 

broad range of issues and in reaching out to a broad spectrum of Asian Americans and people 

from Pacific Islander cultures. 

c. NATURALIZATION AND RELATED IMMIGRATION ISSUES 

In last year’s annual report, NCD noted recent legislation allowing waiver of the usual oath of 

allegiance requirements for new citizens with disabilities who could not take or fully 

comprehend the oath. The report also discussed related field guidances issued by the Immigration 

and Naturalization Service (INS) to its field offices. The INS issued field guidance and policy 

modifications for naturalization processing and adjudication to its field adjudicators on April 7, 

2000. The guidance was unclear, however, on how to accommodate applicants with severe 

disabilities with respect to the legal requirement that they understand the oath of allegiance. 

Enactment of P.L. 106-488, amending the Immigration and Nationality Act, in November 2000 

substantially remedied this problem. The new law provided a waiver of the oath of renunciation 

and allegiance for naturalization of aliens having certain disabilities. 

NCD recommends that the INS ensure timely and effective processing of naturalization 

applications for applicants with disabilities. To that end, the Disability Rights Section of the 

Civil Rights Division of the DOJ, together with NCD and the INS, should undertake to conduct a 

comprehensive review to monitor the implementation of these recent statutory changes, with a 

view to assessing the success of INS’s efforts to address long-standing problems with its 

naturalization process regarding access for people with disabilities and with a view to 

54

anticipating and proactively addressing issues that have an impact on the citizenship 

applications of these aspiring Americans. 

In reiterating these recommendations, NCD is acutely aware of both the chronic resource 

limitations faced by the INS and the enormous new demands placed on that agency by our efforts 

to better track and regulate the entry and tenure of noncitizens in our nation. But precisely 

because we have come to understand as never before the value of American citizenship and the 

reasons so many people from all parts of the world aspire to it, the importance of ensuring that 

general reforms do not overlook the needs of people with disabilities is likewise greater than it 

has ever been. 

Current issues of concern to applicants with disabilities in the immigration and naturalization 

process, in normal times and in these, are not limited to those involving the oath. From access to 

immigration facilities, to access to written information, to assistance in the completion of forms, 

to the availability of sign-language interpreters (including for materials and interpreters in 

languages other than English), many subsisting and emerging concerns need to be addressed. As 

they relate to cultural diversity, and in their own right, these issues need to be addressed, and 

where problems are disclosed, they need to be dealt with by the Administration with the high 

priority that the values of citizenship confer on them. 

d. UNDERSERVED AND UNSERVED DIVERSE COMMUNITIES 

In October 2000, the Department of Education (ED) funded a competitive grant for the first 

national native American center, the American Indian Disability Technical Assistance Center 

(AIDTAC). Located in Montana, the center helps American Indians and Alaskan Natives with 

disabilities live integrated lives in their native communities. AIDTAC is committed to helping 

tribes build their capacity to develop and implement culturally appropriate laws and policies, 

crosscutting infrastructure, and direct program services. NCD recommends that the ED evaluate 

55

these efforts with a view to determining their potential applicability to other communities in 

other settings and with a view to their refinement and incorporation into the NFI. 

e. ELIMINATION OF LANGUAGE BARRIERS TO FEDERAL PROGRAMS 

On August 11, 2000, Executive Order 13166 was issued requiring that all federal programs using 

federal funds ensure that language barriers not prevent participation in or hinder benefit from 

these programs for non-English-speakers and people with limited English proficiency. The order 

was intended to ensure that people from diverse cultures with disabilities and their families could 

take full advantage of federal laws, programs, and services by receiving understandable, 

culturally appropriate information about their rights and responsibilities under various federal 

laws. 

NCD recommends that the Administration indicate its position with respect to the principles 

embodied in the Executive Order, and that if the Administration continues to subscribe to these 

principles and methods, it support the formation of an interagency team composed of 

representatives from the Departments of Education, Health and Human Services, Housing and 

Urban Development, Justice, and Labor, along with the EEOC, FCC, and Small Business 

Administration, to develop and implement appropriate outreach and training programs and to 

develop and provide the kinds of technical assistance necessary to make them effective. To 

facilitate such outreach and dissemination, NCD recommends that the interagency team recruit, 

train, and contract with a core group composed of people with disabilities from diverse cultural 

backgrounds and their family members to help (1) develop the written materials and programs 

that will be used for the trainings; (2) translate materials into many languages, including in 

accessible and alternative formats, with sensitivity to cultural appropriateness of terminology; 

and (3) sponsor or conduct the trainings once the appropriate materials are translated, fieldtested on sample groups, and produced for dissemination in communities. NCD also 

recommends in this connection that Congress provide funding support to the federal partners 

56

and sponsors of the trainings or other incentives to partners in order to eliminate potential 

financial barriers to participation by team members of limited means. 

f. CONTINUING RECOMMENDATIONS 

In its December 1999 report Lift Every Voice: Modernizing Disability Policies and Programs to 

Meet the Needs of a Diverse Nation,

50 NCD made comprehensive recommendations for 

eliminating gaps in access experienced by persons from diverse cultures or who speak languages 

other than English. Ranging from employment to child care to access to governmental services 

and information to diversification of human-services personnel and a host of other key areas, Lift 

Every Voice offers a blueprint for action and change that we believe remains viable and timely. 

Although likely to grow more slowly as immigration procedures are reviewed and tightened, all 

indications continue to point to a steady increase in foreign-born and first-generation Americans 

among our native-born, naturalized, and legal-immigrant population. Just as the Administration 

has recently undertaken a multiagency review of access barriers in federal policy and law to the 

implementation of the Olmstead decision, NCD also recommends that the Administration, with 

its Lift Every Voice report as a starting point, comprehensively address those barriers that are 

specific to people at the intersection of disability and cultural diversity. 

7. FURTHER CLOSING OF THE COURTHOUSE DOOR 

a. SOVEREIGN IMMUNITY 

Earlier, in section 1c of this chapter, we discussed the barriers to enforcement of civil rights for 

persons with disabilities posed by the Supreme Court’s February 2001 Garrett decision. 

Although Garrett dealt with application of the 11th Amendment sovereign immunity doctrine to 

suits brought under the ADA and with the extent to which the 14th Amendment bears on that 

immunity, statutes other than the ADA and civil rights constituencies other than people with 

57

disabilities are affected by recent Court jurisprudence in this area. Including the Kimmel 

decision,51 which barred private suits against states under the Age Discrimination in Employment 

Act (ADEA), the Supreme Court has applied the sovereign immunity doctrine to bar suits against 

states under a variety of federal laws. 

In the wake of these decisions, attention has increasingly turned to the question of whether and 

how states can lose their sovereign immunity, particularly how they can waive their sovereign 

immunity and consent to be sued under federal laws purporting to authorize the right to sue. 

While the case law is inconclusive, some believe that under the spending clause of the 

Constitution, states can be required to waive their immunity from suit as a condition for the 

receipt of federal funds. Under this theory, states would be required (or be deemed) to waive 

their immunity and consent to be sued under such statutes as the Rehabilitation Act, IDEA, or 

Medicaid, as a condition for receiving federal grants under these programs. Others take the view 

that such waivers would be compelled and therefore ineffective if not knowingly and voluntarily 

given. 

Whatever the uncertainties surrounding congressional power in this area, individual states have 

the right to waive their immunity from suit. State law will determine how this can be so 

done—whether a statute is required or a gubernatorial executive order or waiver by the attorney 

general will do—but especially in states that already have their own human rights laws covering 

disability discrimination, the implications of consenting to suit under the ADA or other disability 

rights statutes would appear fairly small. 

b. THE RIGHT TO COUNSEL 

In section 1c of this chapter, we discussed the heightened responsibility of the Federal 

Government for enforcement of civil rights laws that results from judicial decisions restricting 

the access of private citizens to the courts. But the impact of the decisions discussed thus far, and 

even of the Sandoval decision discussed in subsection d of this chapter, may be outweighed by 

58

still another 2001 Supreme Court holding. In the Buckhannon case,52 decided in March 2001, the 

Court significantly restricted the circumstances in which civil rights litigants can obtain lawyers’ 

fees. 

Previously, if a civil rights suit resulted in a significant change of policies or practices by the 

defendant, the plaintiff whose suit brought about these changes was entitled to an award of 

attorneys’ fees under the “catalyst theory.” The individual who was the catalyst for change was 

the “prevailing party” within the generally accepted meaning of the law, and prevailing parties 

are generally entitled to reasonable attorneys’ fees. In Buckhannon, however, the Court held that 

being the catalyst for change was not sufficient to make a plaintiff a “prevailing party” within the 

meaning of several laws. To be a prevailing party, one had to be awarded damages or some other 

specific relief from a court. Even a settlement between the parties that resulted in the payment of 

some money damages to the plaintiff will not do. 

The Buckhannon decision is likely to have a devastating effect on the ability of individuals with 

disabilities to find legal counsel among the private bar. The limited resources of the protection 

and advocacy (P&A) system and of the pro bono sector of the private bar are unlikely to expand 

materially or be able to take up the slack. But Buckhannon’s potential harm is not limited to this. 

Even from the standpoint of those who may believe that civil rights statutes have spawned 

excessive litigation, the decision bodes adverse consequences. Rather than seek to foster the 

ability of the judicial system to distinguish meritorious from unmeritorious cases, and rather than 

attempt to structure the rewards and punishments of litigation to reward cases of merit, the 

decision actually punishes those with serious and worthy claims because it denies attorneys’ fees 

in those instances where defendants settle out of court, making the changes requested, out of a 

recognition that the plaintiff’s position is legally sound. Even for those who believe that 

attorneys’ fees contribute to unnecessary litigation, the goal should certainly be the establishment 

of a system that somehow makes distinctions on the basis of quality and significance. 

59

Various theories have been advanced as to how Buckhannon will affect the legal strategies and 

professional ethics of both plaintiffs’ and defendants’ counsel. Although these remain largely 

speculative, one conclusion that seems beyond doubt is that the great difficulty individuals with 

disabilities already face in locating private counsel to pursue and defend their civil rights can 

only be multiplied exponentially. Even in highly meritorious cases, the odds of winning 

monetary damages or other relief from a court at the end of a long process are too remote and too 

delayed to make civil rights representation viable for most attorneys. 

Taken together with these cases, and with the West Side Mothers case discussed in the next 

subsection, this jurisprudence practically leaves the Federal Government as the only entity with 

the capabilities and resources to vindicate the civil rights of an increasing proportion of 

America’s citizens with disabilities. Unless the government is prepared to fill the vacuum created 

by these decisions, it should take measures aimed at restoring to citizens the ability to find the 

means of acquitting their rights for themselves. 

Because the Buckhannon ruling is based on statutory interpretation and is not a constitutional 

decision, NCD recommends that the Administration consider and pursue legislation that will 

modify this decision. These legislative changes (which should be applicable to all the civil rights 

statutes providing private rights of action) should provide that where an administrative complaint 

or court suit identifies practices, procedures, or policies the defendant is moved to change in the 

context of, during the pendency of, or as a result of the litigation, courts be authorized to award 

reasonable attorneys’ fees according to the same standards that were in effect prior to 

Buckhannon. Naturally, the earlier in the litigation process the reforms are voluntarily 

implemented by the defendant, the less these fees ordinarily would be, thus creating an incentive 

for defendants to settle meritorious cases quickly. 

No evidence has been adduced of lawsuit abuse by disability civil rights attorneys. Indeed, 

judging, for example, from empirical research showing that only a small fraction of ADA cases 

ever result in any relief to the plaintiff, and judging from the widely reported shortages of 

60

attorneys to handle such cases, there seems little risk that restoring the pre-Buckhannon status 

quo would have any conceivable adverse effect. 

At a time when the DOJ’s resources may be focused on compelling issues of national security, 

enforcement of civil rights laws is likely to become a rearranged priority. Under these 

circumstances, giving persons with disabilities strengthened means for protecting and enforcing 

their own rights through the courts, as the law allows them in theory to do, is imperative. 

Without access to counsel, these established rights will become illusory, except for those few 

with the wealth or other resources to pay for private counsel or who can obtain the small amount 

of pro bono legal service that is available. 

c. SECTION 1983 

Traditionally, Section 1983 (42 USC Sec.1983) has afforded legal recourse to individuals 

aggrieved by violations of their rights under federal law, including violations by state and local 

governments and agencies. Americans with disabilities have used Sec.1983 in Medicaid and 

other settings to protect their rights and to win relief from a variety of unlawful practices. 

In 2001, the U.S. District Court for the Eastern District of Michigan ruled in West Side Mothers 

v. Haveman53 that Sec. 1983 does not permit private lawsuits to enforce the federal Medicaid law 

against a state. Although two other district courts have rejected the West Side Mothers reasoning, 

the decision, if upheld by the Court of Appeals for the Sixth Circuit, where it is scheduled to be 

argued in late January 2002, will deny access to the courts to Medicaid recipients or applicants 

who believe that states have violated the federal statute in their implementation or interpretation 

of the law.54 If this occurs, only oversight on the part of the Centers for Medicare and Medicaid 

Services (CMS), the federal agency with responsibility for the Medicaid program, will hold any 

realistic hope of redress. 

61

Once again, because West Side Mothers is predicated on the interpretation of statutes, means are 

readily available for curtailing its potentially disastrous effects (should it be affirmed on appeal, 

or even without waiting for the appellate process to be concluded). In addition to aggressively 

participating in the appellate process (including at the Supreme Court level, if necessary), the 

DOJ should develop and submit to Congress on a high priority basis legislation to clarify and 

reinstate the long-held and broad-based understanding of the settled law that preceded the district 

court’s decision. 

d. INTENTIONAL DISCRIMINATION 

For the civil rights litigant who can find an attorney and who can avoid dismissal of his or her 

case under any of the decisions previously discussed, a significant challenge remains. Once 

actually in court, this litigant must prove that discrimination has occurred. Yet another 2001 

Supreme Court decision, Alexander v. Sandoval,

55 may make this materially more difficult to 

do.56 

The Sandoval case did not deal with a disability rights statute. It concerned Title VI of the Civil 

Rights Act of 1964, but because of the relationship between Title VI and Section 504 and Title II 

of the ADA, its logic could have a major impact on the availability of redress under those 

statutes. In essence, Sandoval decreed that Title VI of the Civil Rights Act requires a showing 

not only that discrimination occurred but also that it was “intentional.” Policies, practices, or 

actions that merely have a “disparate impact” will not therefore ordinarily qualify for coverage. 

This matters to litigants with disabilities because Section 504 of the Rehabilitation Act (barring 

discrimination on the basis of disability by federal agencies and by recipients of federal financial 

assistance, including state and local government agencies administering federally funded 

programs) and, to a lesser extent, Title II of the ADA are modeled on Title VI of the Civil Rights 

Act. Consequently, interpretations of Title VI emanating from the Supreme Court may well be 

applied to the interpretation and application of these other laws. 

62

Lower court decisions in the aftermath of Sandoval are inconclusive, but obviously, if any degree 

of intentionality must be pleaded and proved, many policies and actions that exclude or restrict 

the options of people with disabilities, but that do so out of indifference rather than animus, may 

fall outside the protections of the law. Will it be enough to prove that a defendant knew about the 

adverse and disparate impact of a particular policy or practice but took no action to remedy it? 

Will that suffice to demonstrate, if not animus, then at least knowledge amounting to intention? 

And if a defendant claims that its refusal to take requested action was based on its good faith 

belief that the accommodation would be an undue burden to it, or on the belief, admittedly 

mistaken but allegedly sincere, that the person making the request did not meet the legal standard 

for being a person with a disability, would such defenses serve to overcome the required element 

of intention? 

In the end, who intends to discriminate? Surely very few people do. Most people who 

discriminate believe they are acting in their best interests, believe they have good reasons for 

what they do, or believe that unreasonable demands are being made upon them. How is their 

intention to be assessed? 

Many rights currently taken for granted under Section 504 and Title II of the ADA can readily be 

seen to be vulnerable under an intentional discrimination standard. Application of the Sandoval 

rationale to disability rights cases may, moreover, have consequences far more severe than those 

attributable to its use with other civil rights constituencies. This is so because, while a defendant 

may not credibly be able to contend that he or she was unaware of the impact of his or her 

decisions and actions on minorities or women, the same claim may be all too truthful when 

impact on people with disabilities is involved. For example, if a government agency is unaware 

of the existence of assistive technology (AT) that would facilitate “effective communication” 

with an individual who has a disability, then any degree of intentionality, even of consciousness, 

may be difficult or impossible to sustain. Once a source of embarrassment, ignorance may 

become a legal virtue. 

63

NCD recommends that the DOJ and Congress immediately begin efforts to find means for 

limiting or rolling back the Sandoval decision, not only as it may relate to individuals with 

disabilities but also as it bears on the lives and rights of all civil rights constituencies. At the 

very least, Title VI and its progeny should be amended to impose a meaningful due diligence 

requirement on civil rights defendants, so they cannot claim ignorance of disparate impact as a 

defense to a discrimination charge. If, with due diligence, the discriminatory impact could have 

been foreseen or remedied, a strong presumption of the requisite intentionality should be deemed 

as a matter of law to exist. 

8. AMICUS CURIAE BRIEFS 

As access to Congress becomes more and more the province of powerful lobbyists and special 

interest groups and elections come to be increasingly dominated by large contributors, the courts 

have emerged as the only branch of government to which the individual citizen can be assured of 

meaningful access and a fair hearing. If the courts are to become less accessible to ordinary 

citizens, including people with disabilities, the role of the Federal Government in defending and 

defining these rights can only grow greater and more profound. 

The U.S. Solicitor General’s Office is responsible for representing the United States, as a party or 

as an amicus (friend of the court), before the Supreme Court. In either role, the Solicitor 

General’s Office plays an important role in setting the legal agenda, in bringing key facts and law 

before the justices, and in determining the shape and substance of the law in our nation. In the 

lower courts too, the DOJ plays a similar role, advancing arguments and interpretations and 

bringing key facts before the courts, particularly the courts of appeal, through its amicus or 

intervener role, as well as in the guise of a litigant. 

In the discharge of these responsibilities in the disability civil rights context, the stakes have now 

become higher than they have ever been before. NCD has had a number of opportunities to 

commend and to express its appreciation for the positions taken by the DOJ in key cases over the 

64

past few years. Most recently, DOJ’s brief in the Sandusky case57 (involving the impact of 

Sandoval) has earned our strong approbation and respect. To be sure, in a few instances the 

DOJ’s position has been adverse to the legal rights of individuals with disabilities,58 but we have 

taken note of these, too. 

NCD does believe that measures can and should be taken to improve the odds, so to speak, and to 

ensure that in reaching its determinations of whether and how to intervene, and of what 

arguments to advance, the DOJ could benefit significantly from systematic and structured input 

from the disability community. NCD has endeavored to provide such input whenever possible, 

but broader input may also be useful. 

Therefore, the DOJ should develop procedures for disability community input into amicus briefs 

filed on behalf of the United States in the Supreme Court on major civil rights cases that the 

Court has deemed sufficiently significant to review. If these experimental consultative 

procedures prove useful, they should be extended to the circuit courts of appeals. 

When a federal agency undertakes to promulgate regulations interpreting or applying statutes, it 

ordinarily seeks public comment before finalizing its proposed rules. Indeed, the law requires a 

public notice and comment process in most such instances. When the Federal Government files 

an amicus brief with the Supreme Court urging a particular interpretation of the law, it is in effect 

doing much the same thing. In fact, where it argues for a change in the law or for a 

reinterpretation of prior decisions, it is doing much more than could ordinarily be accomplished 

by regulatory action, because for the most part agencies cannot use the regulatory process to 

change the law. Yet, in the exercise of its amicus jurisdiction, the government is accountable to 

no one for the interpretation it urges and need never give any reason for choosing to endorse one 

interpretation of the law over the alternative being pressed before the court. 

65

No one can or should restrict the right of DOJ to develop and advocate the positions it deems 

best, but in areas where specialized knowledge and unique experience are so critical to the 

exercise of wisdom, links between the department and affected communities are vital. 

DOJ’s amicus jurisdiction has contributed to many excellent court decisions in civil rights cases, 

but it may have helped to bring about some adverse ones as well. Although the DOJ has full legal 

discretion to endorse any interpretation of the law it chooses and to seek to enter cases as an 

amicus whenever it deems appropriate (except of course when asked for an opinion by the court, 

in which case it must respond), the department would frequently benefit from consultation with 

the disability community. Such consultation could help the department identify which cases 

warrant attention through its limited appellate resources, to identify the issues of most concern in 

the civil rights arena, and to ensure that positions taken in particular cases are consistent with the 

overall framework of public policy in the area. 

In the case of Chevron v. Echazabal,

59 the Supreme Curt considered the availability to defendants 

of the affirmative defense of “dangerousness to oneself” under the employment provisions of the 

ADA.60 Specifically, the question posed before the court is whether the ADA allows an employer 

to refuse to hire an individual with a disability if the job would pose a hazard, not to others, but 

to the prospective employee’s health. DOJ officials, apparently after meeting with disability 

community representatives and indicating an intention not to, have filed an amicus brief 

endorsing the defendant’s position.61 In doing this, DOJ endorsed a position NCD believes to be 

inconsistent with established civil rights case law in the gender area, in which refusal to give 

pregnant women jobs that are deemed dangerous to their health has been held discriminatory. If 

DOJ chooses to argue that the gender precedent should not be extended to disability, it should 

not shrink from telling the affected community, preferably before filing its brief, either why it 

believes the distinction to be warranted or why it believes the gender decisions to have been 

incorrectly decided. 

66

A streamlined consultative process, conducted with full appreciation of the time constraints 

applicable to the judicial process, could help to clarify such issues and could ensure that the 

views of the disability community are heard by the Solicitor General and other appropriate 

officials before these officials determine what they want the law of the United States to be. 

Accordingly, DOJ, working in collaboration with NCD, should establish a consumer advisory 

committee or a judicial watch committee, modeled on NCD’s Tech Watch Advisory Committee, 

to identify emerging court cases and legal issues of particular concern to disability civil rights 

and to advise the attorney general and the solicitor general regarding the exercise of their 

amicus jurisdiction. 

Our courts properly place great reliance on the recommendations of the nation’s chief law 

enforcement agency regarding how difficult and complex issues of public policy and statutory 

interpretation should be resolved. Those officials owe it to the nation to ensure that their legal 

knowledge is adequately supplemented by knowledge of the lives and concerns of Americans 

with disabilities when they make recommendations and offer analyses that transcend 

implications for the destinies of these Americans. 

The advisory panel we here urge should be composed of lawyers and scholars with disabilities 

and other disability advocates with extensive experience and knowledge of the issues. It would 

consult with the department under terms of the strictest confidentiality and, consistent with the 

provisions of the Federal Advisory Committee Act and other relevant laws, would understand 

that its recommendations cannot be binding. All that it would ask or seek would be the 

opportunity to discuss fully with the department the issues involved in key cases before DOJ 

determines the posture to adopt before our courts. 

67


Chapter 3 

Education 

America stands at a crossroads in its approach to public education. In December 2001, the No 

Child Left Behind Act (NCLBA)62 was adopted by Congress. Representing a revision of the 

Elementary and Secondary Education Act of 1965 (ESEA), this legislation charts a new course in 

our nation’s educational policy, in the expectations placed on public schools, in the allocation of 

resources for education, and in the relationship between the Federal Government and the states in 

the achievement of quality education for all children. 

At the same time, we stand poised to address the many issues surrounding reauthorization of the 

Individuals with Disabilities Education Act (IDEA), which is due for reauthorization in 2002 and 

hence for review by the current Congress. Many of the basic principles and policies underlying 

the No Child Left Behind Act are likely to be advocated as guideposts for, and will find their 

way into, the reauthorized IDEA. 

Despite efforts from a number of sources to get specific disability- or IDEA-related provisions 

into the NCLBA legislation, the key issues and controversies surrounding IDEA have been 

largely left to the reauthorization debate this year. Provisions on student discipline (calling for 

the removal from class and the suspension of special education services for special education 

students who violate rules of behavior) and dealing with funding (calling for the full funding by 

the Federal Government of the special education program) were contained in both the House and 

Senate versions of the bill but were omitted from the final NCLBA bill by the conference 

committee. 

Nevertheless, through NCLBA’s emphasis on the needs of disadvantaged children, the new law, 

although more general in its coverage, does apply to students with disabilities in several 

important ways. As students facing educational disadvantages, children and youth with 

69

disabilities are implicitly within the scope of the NCLBA. In addition, a number of specific 

provisions in the new law do bear expressly on students with disabilities. 

1. IMPLEMENTATION OF NO CHILD LEFT BEHIND ACT 

If the NCLBA and the forthcoming reauthorized IDEA are to work harmoniously and seamlessly 

together, the implications of NCLBA for special education and students with disabilities must be 

thoroughly known and clearly understood. Therefore, as an aid to Congress in its deliberations on 

IDEA, and as an element of the government’s implementation of NCLBA, the Department of 

Education (ED) should undertake a comprehensive assessment of all the ways in which NCLBA 

bears on or modifies existing law and regulations concerning students with disabilities, the 

obligation of states and school districts toward these students, the requirements for state 

monitoring of special education services and programs, and related issues. 

The potential for confusion and inconsistency between the two laws, if this assessment is not 

made, is amply illustrated by the issues surrounding the applicability of new testing requirements 

and schoolwide and districtwide accountability standards to students receiving special education 

services. On August 24, 2000, the ED’s Office of Special Education Programs (OSEP) issued a 

guidance document, Questions and Answers About Provisions in the Individuals with Disabilities 

Education Act Amendments of 1997 Related to Students with Disabilities and State and Districtwide Assessment.

63 This document addressed such issues as (a) when does a state (or local 

education agency) need to conduct an alternate assessment; (b) what an alternate assessment is; 

and (c) whether individualized education program (IEP) teams may exempt children with 

disabilities from participating in the statewide or districtwide assessment program. 

NCD commended the department in last year’s annual report for this response to the previously 

unanswered questions posed by practitioners, administrators, and policymakers responsible for 

improving educational outcomes for children and youth with disabilities. Now, even without 

regard to IDEA, the changes made by NCLBA may well call into question the continuing vitality 

70

and relevance of this guidance. Some of the answers and possibilities can be gleaned from a 

reading of the NCLBA statute and review of its legislative history,64 but additional answers, not 

necessarily self-evident from the words of the new law, are required, both to give school 

administrators, students, and their families the answers they need now and to assist Congress as it 

grapples with the complex and daunting issues involved in the reauthorization of IDEA. 

Although the implementing regulations for NCLBA are unlikely to be completed or adopted 

prior to Congress’s completion of work on the reauthorization of IDEA, the ED should not need 

to resolve all the details of its implementation strategy in order to be able to specify the impact of 

the act on IDEA. 

The need for this reconciliation is further dramatized by features of the congressional debate over 

the NCLBA bill itself. In the course of its work on the bill, Congress heard a number of calls to 

include amendments to toughen the student disciplinary provisions of IDEA. Largely absent 

from this debate was a baseline recognition of exactly what the discipline provisions in IDEA 

already were. 

2. NCD’S ASSESSMENT STUDY OF IDEA 

By way of background to the discussion of IDEA reauthorization, NCD directs congressional and 

public attention to a document highlighted in our 1999-2000 annual report. In January 2000, as 

part of its civil rights enforcement series, NCD released a report that focused attention on public 

concerns about 25 years of monitoring and enforcement of IDEA. Overall, this report, Back to 

School on Civil Rights,

65 found that federal efforts to enforce the law under administrations of 

both parties have been inconsistent and ineffective. Enforcement is too often the burden of 

parents, who must invoke formal complaint procedures and request due process hearings to 

obtain the services and supports to which their children are entitled under the law. In addition, 

NCD consistently learned that parents of children with disabilities are enthusiastic supporters of 

the law. They think it’s a good law. They also told us there is room for improvement on the law’s 

implementation and enforcement. 

71

One of the things that made Back to School on Civil Rights particularly compelling was its 

inclusion of findings based on the ED’s own monitoring reports compiled over the years. These 

reports combined to show that 90 percent (n = 45) of states were out of compliance with required 

general supervision requirements designed to ensure that local educational agencies carry out 

their responsibilities under IDEA. In addition, 88 percent of states had not provided appropriate 

transition services to help students move from high school to post-school and adult living 

activities, and 80 percent of states had failed to provide a free appropriate public education 

(FAPE) to students with disabilities. 

Back to School also found that despite long-standing noncompliance with these and other IDEA 

provisions, the ED had made only limited use of enforcement through its sanction authority. 

Although the ED had begun to carry out a revised monitoring system (Continuous Monitoring 

Improvement Process), the department had failed to include clearly elements that addressed 

public concerns about the lack of consistent criteria for making noncompliance findings and for 

applying effective enforcement strategies, including triggers for the use of sanctions. 

Based on these findings, NCD recommended in last year’s report that Congress authorize and 

fund the DOJ to independently investigate and litigate IDEA cases as well as to administer a 

federal system for handling pattern and practice complaints filed by individuals. 

NCD also recommended that IDEA budget appropriations include a 10 percent set-aside 

provision for complaint processing, as described in the Back to School report. Supported by joint 

agreements governing audit procedures among the ED, the DOJ, the General Accounting Office 

(GAO), and the Office of the Inspector General, this approach to complaint resolution would 

greatly enhance efforts to reduce the disproportionate burden of enforcement parents of children 

with disabilities have endured in expensive due process hearings and court proceedings over the 

past 25 years. All these findings have clear and direct implications for IDEA reauthorization, as 

discussed later in this chapter. 

72

3. THE PRESIDENT’S COMMISSION ON EXCELLENCE IN SPECIAL EDUCATION 

On October 2, 2001, President Bush created by Executive Order 13227 the President’s 

Commission on Excellence in Special Education.66 The commission was scheduled originally to 

submit its final report by April 30, 2002, but this date has now been extended to July 2002. 

Because the findings and recommendations of any such commission necessarily must be 

informed by philosophical and value-based considerations, having the benefit of the broadest 

range of experience and opinion is vital for the commission. For the work of the commission to 

be meaningful, its report needs to reflect outreach to those with this broad range of perspectives. 

Because the commission convened its first organizational meeting only on January 15, 2002, 

NCD is concerned whether the commission will be able to hear, digest, and synthesize the 

necessary range of information and the relevant body of data in time to make a significant 

contribution to the congressional reauthorization debate. In a similar vein, NCD is concerned that 

timely IDEA reauthorization efforts across branches of government may be affected by delays in 

the completion and transmittal of the commission’s final report. 

As important as values and principles are and ought to be in the deliberations and conclusions of 

the commission, resolution of many of the most contentious issues surrounding reauthorization 

depends on a close reading of the factual record. Unfortunately, because different observers can 

draw sharply divergent conclusions from the same body of data, even a commitment to evidencebased policymaking cannot ensure the development of consensus around recommended reforms. 

For example, evidence of weak enforcement of the law can be seen as proving that the Federal 

Government has failed in its IDEA oversight responsibilities. By the same token, such data can 

be viewed as supporting the contention of IDEA critics that the statute is cumbersome and 

difficult to enforce. Likewise, evidence regarding the burdens and costs associated with efforts 

by parents to obtain necessary services for their children can be seen by some as indicating that 

IDEA has promoted an overly litigious environment, whereas others regard such data as 

73

demonstrating the steep uphill path families still have to climb to obtain the services to which 

they are entitled by law. 

In resolving these and a host of other philosophical and empirical questions, NCD recommends 

that Congress and the commission look at the evidence. For example, in view of the fact that the 

findings of widespread state noncompliance with monitoring and other responsibilities under the 

law emanate from the ED’s own data, the burden of proof must surely be borne by those who 

argue that federal oversight has been adequate, let alone excessive. Similarly, for those who 

contend that the due process provisions of IDEA are excessive or have intimidated school 

officials or fostered an unduly litigious atmosphere, the relative rarity of successful appeals 

against local authorities’ decisions and the unreimbursed out-of-pocket costs incurred by many 

parents in pursuing their children’s educational needs are facts that cannot be ignored. 

Accordingly, NCD recommends that the National Commission and Congress give these and 

other findings a full airing, confident as we are that if all evidence and points of view are fully 

incorporated into their deliberations, the best possible results will be obtained. In this 

connection, the commission’s charter gives grounds for concern. Taking as its point of departure 

the virtually indisputable premise that special education is not working well, or not working as 

well as it should, and embracing the search for research and ideas to make the system better, the 

commission’s charter contains no instruction to investigate the possible role of long-term 

noncompliance, lack of enforcement, and minimal monitoring and oversight as explanatory 

factors in the deficiencies of the current system. In light of Back to School on Civil Rights, this 

omission seems particularly unfortunate, because without attention to oversight and enforcement, 

new approaches are very likely to fall short of fulfilling their potential and goal, just as the old 

approaches have done. 

74

4. IDEA REAUTHORIZATION RECOMMENDATIONS 

As part of its contribution to the unfolding debate, NCD wishes to address a number of specific 

matters that are likely to be controversial in the reauthorization discussion. 

a. ENFORCEMENT 

As mentioned previously, NCD findings from Back to School indicate that for more than 25 

years and through several administrations, federal IDEA enforcement efforts have consistently 

lacked “teeth.” When a state is found out of compliance with IDEA, the Office of Special 

Education Programs works with the state on the development of a compliance plan and provides 

technical assistance on the implementation of that plan. This strategy has not solved the 

problems, especially when no clear, objective criteria for additional enforcement options exist. 

Currently, no clear and effective (positive or negative) standards and strategies exist for a state 

that continues substantial and persistent noncompliance. The result has been devastating for the 

students with disabilities and their families who are denied the protections of the law. Without 

standards that define the limits and provide appropriate sanctions, the incentives for corrections 

have not been compelling enough to stop the cycle of noncompliance. NCD believes that this 

issue has reached a crisis point and recommends bold steps to correct it: 

1. The Department of Education should not be the sole enforcement agency. The ED has 

long-standing and collaborative relationships with state education administrators. These 

important relationships are jeopardized when the ED threatens sanctions. Partial solutions 

were included in the last reauthorization when enforcement authority was also given to 

the DOJ, but only following referral of cases from the ED. This has not worked; there 

have been no referrals to the DOJ since that authority was added to IDEA. To address 

noncompliance problems, NCD recommends an expansive role for the DOJ. Congress 

should authorize and fund the DOJ to independently investigate and litigate IDEA cases, 

as well as administer a federal system for handling pattern and practice complaints filed 

by individuals. 

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2.	 The lack of national standards is at the root of the enforcement problems. NCD 

recommends that the Departments of Education and Justice be directed to develop 

national compliance standards, improvement measures, and enforcement sanctions that 

will be triggered by specific indicators and measures indicating a state’s failure to 

ensure. Stakeholders, including students with disabilities and parents, should be 

consulted by the departments for consistency and clarity as they develop and implement a 

range of enforcement requirements. 

3.	 Families members and students are very strong stakeholders in the enforcement of IDEA. 

In fact, as pointed out earlier, they have been the true enforcers of the law. Critical to their 

effectiveness, however, is the availability of free and low-cost legal advocacy through 

public and private legal service providers. Equally important are training and technical 

assistance programs for students to expand their self-advocacy skills. Finally, there are 

other important partners in this process; collaborative participation should be encouraged 

by special and regular education teachers and agents of relevant systems, such as INS, child 

welfare, and juvenile justice systems. NCD recommends that Congress authorize more 

funding for Department of Education-sponsored technical assistance programs to support 

the development of state-level technical assistance networks; self-advocacy and monitoring 

training for students, parents, and other partners; and free and low-cost legal services for 

families. NCD recommends that IDEA include a formula that triggers the funding of these 

activities at an amount equal to 10 percent of the total increase in Part B funding. 

b. DISCIPLINE 

Because of a few widely publicized cases, many people appear to believe that IDEA bars schools 

from taking disciplinary action, including removal from the classroom of dangerous or disruptive 

students, with students who are receiving special education services. That is not the case, but the 

existence and frequent public repetition of this erroneous belief complicates and adds emotion to 

the discussion of how the uniformly shared goals of classroom discipline and order can be 

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squared with the provision of appropriate special education and related services to all students, 

including students with behavioral problems arising from unaddressed physical, emotional, or 

cognitive causes. 

As noted, discipline amendments to IDEA were proposed but ultimately rejected in NCLBA. As 

these issues prepare to surface again in the IDEA reauthorization debate, NCD points out that if no 

child is to be left behind, that commitment applies to students with disabilities as well. No child 

should be denied needed educational services. Rather, the services must be designed and delivered 

in an environment and a manner that are appropriate to each child’s needs. We would not allow a 

parent to keep a child out of school on the basis of that parent’s belief that the child was 

uneducable, incorrigible, or dangerous. Were we to allow education officials to deny services to 

children who need them, and in the end to deny all education to such children, the practical results 

would be essentially the same. Accordingly, children should never be considered to have forfeited 

their right to services, because education, including special education services, is not something to 

which a child must earn entitlement or which a child, any more than a parent, can waive. 

As a further backdrop to the discussion of student discipline, NCD also notes, as we have 

previously done, that student behavioral problems cannot be understood or addressed in a 

vacuum. By recognizing that the school environment, the level and quality of services, and other 

elements of the school setting significantly influence student behavior, we do not condone or 

rationalize bad behavior. By acknowledging that behavioral problems are frequently not 

volitional, we do not obscure the distinctions between right and wrong. Accountability must 

apply to student behavior, but, as discussed below, accountability must apply no less to states 

and school districts. If students are “warehoused,” if they are denied the technology and services 

necessary for meaningful participation, or if they are not challenged to achieve their maximum 

potential with appropriate positive behavioral supports, the occurrence of some behavior 

problems can come as no surprise. And if appropriate diagnostic and assessment services, as well 

as needed remediation, are not available, the links between behavior and underlying emotional 

conditions, though often obvious, may never be elucidated or addressed. Notwithstanding the 

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perceived need to streamline a deliberately complex process, NCD recommends that the current 

protections on the discipline of students eligible for Part B IDEA remain unchanged. 

c. OVERREPRESENTATION FROM DIVERSE BACKGROUNDS 

One of the great concerns of many observers of IDEA is the statistical overrepresentation of 

children from African American and other diverse backgrounds among children and youth 

deemed eligible for special education services and designated as students with disabilities for 

purposes of IDEA.67 To some degree, this overrepresentation may reflect the interaction of 

disability with economic, social, or other forms of disadvantage, ranging from heightened 

exposure to lead toxicity in many inner-city areas to poor nutrition or the destabilizing effects of 

violence in all too many neighborhoods. At the same time, the suspicion is widespread that this 

overrepresentation of diverse students in the special education population is the result of 

“dumping” these students out of the academic mainstream by school systems that are for any of a 

number of reasons unable to achieve educational success with them. 

The Bush Administration has demonstrated concern over this pattern of overrepresentation, 

particularly as it manifests itself in disproportionate numbers of diverse students being diagnosed 

with emotional disabilities or with developmental disabilities. As Secretary of Education 

Roderick Paige stated at an October 2001 hearing: “African-American students are labeled as 

mentally retarded and emotionally disturbed far out of proportion to their share of the student 

population. Department of Education national data show that 2.2 percent of all black students, 

but only 0.8 percent of all white students, are identified as mentally retarded. Similarly, 1.3 

percent of all black students, and only 0.7 percent of all whites are identified as emotionally 

disturbed.... For minority students, misclassification or inappropriate placement in special 

education programs can have significant adverse consequences, particularly when these students 

are being removed from regular education settings and denied access to the core curriculum. Of 

particular concern is that, often, the more separate a program is from the general education 

setting, the more limited the curriculum and the greater the consequences to the student, 

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particularly in terms of access to postsecondary education and employment opportunities. The 

stigma of being misclassified as mentally retarded or seriously emotionally disturbed, or as 

having a behavioral disorder, may also have serious consequences in terms of the student’s selfperception and the perception of others, including family, peers, teachers, and future 

employers.”68 

Thus, as all agree, a response to the problem of overrepresentation is urgently needed, but that 

response must be appropriate and effective. Some will argue that eligibility for special education 

services, particularly in the area of learning disabilities and attention deficit and hyperactivity 

disorder (ADHD), represents the best solution to the problem. If special education amounted in 

practice to nothing but warehousing, or if evidence showed that students were classified as 

special education students only so that school districts could receive per capita federal funds 

while providing little or no service, then indeed many students might be better off without it. But 

if special education services are responsive to the learning issues faced by many students, and if 

the program is monitored to ensure that “least restrictive environment” (LRE) requirements 

aimed at keeping students with disabilities in the appropriate placements are enforced, then 

restriction of eligibility for services constitutes the proverbial throwing out of the baby with the 

bathwater. 

The diagnosis and remediation of ADHD and related conditions is fraught with methodological 

issues and is often more subjective than it should be. Too often, the suspicion seems warranted 

that ADHD is a diagnosis made for the administrative convenience of the school or even for the 

financial gain of pharmaceutical companies. But the solution is to marshal the resources of 

science to develop objective diagnostic tools and to test and validate intervention strategies, 

going beyond amphetamine-type or other drugs, that have shown promise and demonstrated 

effectiveness in these settings. 

Prior to taking any action to restrict eligibility for special education services, especially by 

limiting the diagnoses that qualify for the program, Congress should commission an exhaustive 

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study of the issue by leading medical, educational, behavioral, and other scientific and legal 

experts. Such a study does not appear to be within the charge of the President’s Commission and 

probably could not be completed in time to illuminate this year’s reauthorization debate. 

d. DUE PROCESS 

Various critics of IDEA believe that the due process and appeal rights it affords parents 

constitute an invitation to excessive litigation, unduly enrich lawyers, and interfere with the 

ability of educators to implement appropriate plans and decisions for students with disabilities. 

Regardless of the cogency of these views, they reflect a radical shift in philosophy regarding the 

proper role of parents in the educational process. 

During the quarter century since its enactment as the Education for All Handicapped Children 

Act of 1975 (P.L. 94-142), IDEA has embodied a commitment to parental participation in the 

formulation of educational interventions for their children. Under current law, parents have the 

right to participate in and to agree to the provisions of their child’s individualized education 

program (IEP). The right to appeal when they are excluded from this decisionmaking process or 

when the results of the IEP process do not conform to their sense, borne of the most intimate 

familiarity, of their children’s needs is surely a central feature of the overall statutory 

commitment to family involvement in the education of children. 

In many other ways, IDEA favors measures to encourage and promote parental participation in 

the education of their children. To the degree that parental involvement is deemed to include 

some measure of consent to the measures adopted for their children, and to the degree that the 

IEP remains an individualized plan that must be tailored to the needs of each student, asking the 

proponents of due process curtailment how they would protect the parental rights that the law 

now enshrines is fair. Litigation is not the preferred strategy for enforcing parental rights. Out of 

just such an agreement, the IDEA Amendments of 1997 included a number of provisions 

designed to reduce the instances in which litigation would be necessary, including provisions for 

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a negotiating process before any due process appeal proceedings could be instituted. At the very 

least, before agreeing to any further curtailment of family rights under IDEA, Congress should 

examine the impact of these recent amendments, especially as they relate to the availability of 

attorneys’ fees under the law. 

In this connection, Congress is likely to face calls for further narrowing or even for elimination 

of the entitlement to attorneys’ fees for “prevailing parties” in IDEA appeals. Before yielding to 

such calls, and before imposing any other procedural limitations on the ability of parents to assert 

and defend their children’s rights and needs, Congress should consider what avenues would be 

available to parents of moderate or limited means for pursuing in good faith their children’s 

IDEA rights if legal recourse were further foreclosed to them. One result of further curtailment of 

attorneys’ fees would surely be that only wealthy parents would be in a position to enforce their 

children’s educational rights when school systems failed to do so. 

Indeed, Congress should do more than simply avoid adding further constrictions in this area. 

Because the Buckhannon redefinition of “prevailing party” may be applied to IDEA by the 

courts, thus resulting in attorneys’ fees rarely if ever being awardable under the statute and in due 

process appeals becoming largely unavailable to those without the financial means to hire 

counsel or the bureaucratic skills to advocate on terms of equality with the lawyers and educators 

representing the school system, Congress should make clear in the reauthorized language that for 

purposes of IDEA, the definition of “prevailing party” remains as it has been. 

If Congress remains concerned that either attorney fee availability or parental involvement or 

other family due process rights are interfering with the educational process, it should commission 

a study, employing empirical and evidence-based tests and data-gathering instruments, to 

determine the real impact of due process provisions on the prevalence and outcomes of IEP 

litigation and, indeed, on the impact of parental involvement and due process rights on the 

quality of special education and on the character of all education throughout this country. If 

Congress does this, it is likely to reach one of two conclusions. Either it will find that successful 

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appeals from IEP decisions are numerous (in which case the school systems in question have 

arguably failed to properly interpret or apply the law) or that successful appeals are scarce (in 

which case, because no legal fees are available for nonprevailing parties, the availability of legal 

fees from “deep-pockets” school districts could hardly explain the filing of the majority of 

cases). 

For all of these reasons, Congress should resist any attempts to diminish parental 

participation/consent, appeal rights, or attorneys’ fees and other due process rights in the 

reauthorization of IDEA. 

e. ASSISTIVE TECHNOLOGY 

In 1997, Congress strengthened the requirements of IDEA pertaining to assistive technology 

(AT) by requiring that the need for technology be considered as an element of the IEP 

assessment process. But in practice, all this means is that a box on a form needs to be checked. In 

fact, while some states include this item on mandatory or advisory IEP documentation or 

checklists used by school districts, other states do not, meaning that in some places there may not 

even be a box to check. 

Given the growing importance of technology in the educational process and the rapidly 

expanding capability of AT to mitigate a range of functional limitations, checking a box is no 

longer enough. NCD believes that when a school district denies AT, information should be 

provided regarding what was tried and rejected, including a clear rationale. 

Inclusion of such a provision should not place administrative burdens on school districts, because 

if AT has in fact been considered, as the law already requires it to be, then the personnel who 

designed and approved the IEP will surely know what technology they considered and why it 

was accepted or rejected. Nor need this new provision be the source of additional disputes 

between parents and school districts. To ensure that it will not be, NCD recommends that the 

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data explaining AT decisions be collected solely for monitoring and oversight purposes and that 

it be used by states and by the ED only in its aggregate, nonindividually identifiable form to 

evaluate overall trends in assessment and service delivery, as well as for anticipating personnel 

preparation and specialization needs. 

f. ACCESS TO SCHOOL TECHNOLOGY, INSTRUCTIONAL MATERIALS, AND MEDIA 

Today, current laws require that newly constructed schools need to be physically accessible to 

students, staff, and parents with mobility disabilities. Yet, the closely related premise that school 

computers, textbooks, and other instructional materials and media must be accessible to all 

students remains far from self-evident in the minds of many policymakers and educational 

practitioners. One cause for this delayed recognition may be the belief on the part of some that 

accessibility of the school information infrastructure and of the curriculum is a responsibility that 

must be met out of special education funds. We would not accept this view with regard to ramps 

and other architectural features. How can such a view be sustained with regard to the ramps to 

the information superhighway provided in and by schools? 

The notion that accessibility is a special education function appears to derive from the mistaken 

belief that accessibility is implemented on behalf of individual students. But if one waits for an 

individual student to request such access, it will almost certainly be too late. In reality, if one 

builds the infrastructure without reference to accessibility, retrofitting to accommodate the needs 

of an individual student is more difficult and costly than otherwise need be the case. Only if the 

law makes clear that information and curriculum access is no different than physical access—to 

the parking lot or the bathrooms or the classroom itself—can the necessary planning and funding 

be brought into play. Accordingly, consistent with existing legal requirements under Section 504 

of the Rehabilitation Act (and possibly, depending on the outcome of the ED deliberations on the 

point, under Section 508), IDEA reauthorization should make clear that accessibility of 

information technology and curricular materials is a responsibility of school systems, irrespective 

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of the needs assessment of any particular child with visual, hearing, or other communication 

disabilities. 

In this connection, NCD commends the National Institute on Disability and Rehabilitation 

Research (NIDRR) for its funding of the ADA Disability and Business Technical Assistance 

Centers (DBTACs) to provide technical assistance to the nation’s schools in the achievement of 

access to education and information technology. NCD particularly recognizes the creation of the 

National Center for Accessible Education-based Information Technology, which has been funded 

to provide technical assistance to the ten regional DBTACs in carrying out their important new 

responsibilities in the educational technology sector. 

Congress should ensure in the IDEA reauthorization that adequate authority and resources are 

made available for the provision of technical assistance to state education departments and local 

educational agencies (LEAs) throughout the country regarding the legal requirements of the law 

concerning accessible school computers, audio-visual materials, and textbooks. Such technical 

assistance, along with the statute itself, should make unmistakably clear that information and 

technology accessibility are not special education concerns, because they are responsibilities that 

are not triggered by the needs of any particular student. And most important, such technical 

assistance should include substantial guidance on what information accessibility means and on 

the techniques, technologies, and design strategies that will help bring it about. 

g. DISABILITY HARASSMENT 

As noted with approval in NCD’s 1999-2000 annual report, on July 25, 2000, the ED’s Office of 

Civil Rights (OCR) and its Office of Special Education and Rehabilitative Services (OSERS) 

jointly issued a document pertaining to disability harassment.69 The document addressed (1) why 

disability harassment is such an important issue; (2) what laws apply; (3) how to prevent 

occurrences and how to respond; and (4) where technical assistance is available to the public. 

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The document provided examples of harassment that could cause a hostile environment, resulting 

in adverse effects on a student’s ability to participate in and benefit from the educational 

program. In addition, the document contained examples of harassment prevention and 

elimination measures that may be effective. 

In recent years, our nation has made substantial progress in addressing sexual harassment in 

schools, and indeed in responding to all forms of bullying and intimidation. Disability 

harassment must be addressed with the same vigor and purpose. Consequently, NCD 

recommends that Congress in the IDEA reauthorization should adhere to the principles and to 

the important statement of the law as set forth in the ED document by including strong antiharassment measures in the law. 

Technical assistance in preventing, identifying, and halting disability-based harassment should 

be the primary tool of federal involvement, but consistent with the themes of accountability that 

are likely to be prominent in the law, schools should not be allowed to escape responsibility if 

their efforts fall short of reasonable expectations or if they fail to implement measures to protect 

victims and to control offenders. If student discipline is to be an issue in the reauthorization, then 

student victimization cannot be omitted from the equation either. 

h. FULL FUNDING 

Several components of IDEA, including Parts C and D dealing with special education and related 

or supplementary services and dealing with early intervention services, are mandated and must 

be reauthorized. But within the framework of this mandatory status, considerable room of course 

exists for the modification of specific Part B provisions. Discipline, as discussed earlier, is an 

example. Another example, and a long-standing concern among special education advocates, is 

what is known as “full funding” of IDEA. 

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Full funding here does not mean that federal funds should defray all the costs incurred by states 

and local school districts in providing special education services. Rather, the term refers to the 

fulfillment of the historic commitment, going back to the creation of the special education 

program 25 years ago, that Congress would appropriate funds to meet 40 percent of program 

costs. Estimates are that today federal funds meet between 10 and 15 percent of the costs of 

special education. 

At a time when state and local governments find themselves facing acute financial pressures, and 

when, moreover, they are likely to incur increased expenses in the implementation of NCLBA, 

the argument for full funding takes on a practicality and an urgency that it may not have had in 

recent years of surpluses and economic growth. The arguments for full funding go well beyond 

the strictly economic, however. At times of economic stress, worthy programs and purposes are 

inevitably thrown into competition as painful choices are made over the allocation of scarce 

resources. Special education, even in periods of relative fiscal well-being, is all too easily 

scapegoated in ways that run the risk of pitting students with disabilities against their 

nondisabled peers in the competition for attention and resources. What is easier for a beleaguered 

school official who fears to ask the taxpayers for more funds than to say, perhaps even to believe, 

that without federally imposed special education costs, cuts in popular program areas could be 

reduced or avoided? 

If schools are to face cutbacks because of local funding shortages, the dangers of such 

scapegoating and of the development of destructive and hostile public and community attitudes 

toward special education poses a serious risk to the viability and the integrity of the entire effort. 

NCD recognizes that the Federal Government faces its own fiscal constraints, but there may be 

few cases in which the investment of additional funds has as much leverage value or an increased 

federal commitment can do as much to protect and preserve public support for a program that has 

been and remains a centerpiece of national education policy over the course of nearly a 

generation. 

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Congress should take IDEA reauthorization as the occasion for implementing full funding, 

perhaps over a period of several years, but with proportionally increasing expenditures over each 

year until the target 40 percent level is reached. To fail to act would be among the most pennywise and pound-foolish decisions our nation could make. 

i. ACCOUNTABILITY 

As reflected in the NCLBA, we have entered a new era of federal-state cooperation in the 

universally shared goal of preparing America’s children for the 21st century. Special education 

must be prepared to change as general education has and will continue to do. The watchwords of 

the new educational era are “flexibility, accountability, and choice.” By applying these 

watchwords no less to the ways schools provide special education than to the ways they provide 

general education, we can assure equality of opportunity, which is the goal of all. 

Among disability statistics, perhaps the most shocking is that diploma graduation rates for 

students receiving special education and related IDEA services hover at around 27 percent.70 

Contrast this with an estimated 75 percent for students without disabilities. While room exists for 

disagreement (and certainly for further research) into the causes of this shocking disparity, no 

room or time exists for allowing schools to avoid accountability for these results. Particularly 

now, when NCLBA has made accountability a focal point of national educational policy, we 

must expect and can tolerate no less for students with disabilities than we have for students 

without disabilities. 

Congress should incorporate clear, meaningful, and enforceable accountability provisions in the 

IDEA reauthorization, making states and local school districts responsible for the outcomes 

achieved by all their students and providing technical assistance for those that fall short, as well 

as rewards and penalties as appropriate. At a minimum, Congress should require that where state 

graduation rates for students receiving special education services fall significantly below those 

rates for all students, mandatory and comprehensive technical assistance be required. And where 

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improvement and movement toward parity are not forthcoming after two years, students with 

disabilities should be assisted to pursue other educational options, just as students without 

disabilities in underperforming schools and school districts will now be permitted to do under 

NCLBA. 

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Chapter 4 

Health Care 

As Congress continues to grapple with a number of interrelated issues concerning the costs and 

availability of health insurance and health care, remembering that Americans with disabilities 

face a number of distinct barriers in obtaining, maintaining, and using health insurance and in 

accessing and using health care services is important. At the same time, Americans with 

disabilities also confront the barriers, problems, and frustrations with which most Americans 

routinely struggle in the insurance and health care systems. 

In a series of reports going back to 1993,71 culminating most recently in our March 2001 paper 

on proposed patients’ bill of rights legislation,72 NCD described and tracked both kinds of 

barriers and made carefully thought-out, balanced recommendations for reform. Against this 

backdrop of experience and interest, we first address the issues raised by the ongoing debate over 

a national patients’ bill of rights. 

1. PATIENTS’ BILL OF RIGHTS 

The intense interest with which many in the disability community have followed the progress of 

patients’ rights legislation is not difficult to understand. Despite the difficulties they face in 

obtaining and fully benefiting from health insurance, the majority of Americans with disabilities 

who are insured receive their coverage through private sector sources. As early as 1993, NCD’S 

report Perspectives on Access to Health Insurance and Health-related Services found that private 

health insurance, from ERISA-regulated self-insured employer plans and from state-regulated 

individual and group plans, is the major source of coverage for people with disabilities, whether 

as primary insureds or as covered spouses and dependents.73 As our nation grapples with health 

insurance reform on the federal and state levels, remembering that the decisions we make will 

affect everyone, including children and adults with disabilities who are among the most 

vulnerable members of the health insurance population, is critical. 

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Owing to disagreements on several controversial issues, most notably but not exclusively the 

issue of health plan liability (the patient’s right to sue), Congress adjourned in December 2001 

without passing patients’ bill of rights legislation. This issue is anticipated to be a continuing 

focus of reform efforts in the second session of the 107th Congress, and it does not seem 

unreasonable to expect that compromise legislation will be adopted during 2002. 

NCD believes the following key issues must be addressed in this important legislation: 

a. COVERAGE 

Precisely because so many Americans with disabilities rely on private insurance for their health 

coverage, applying the legislation to all privately insured persons and to all health care plans is 

vital. Refusal of coverage to otherwise eligible persons on the basis of disability should be 

impermissible. 

We do not suggest that federal law can or should control the kinds of coverage or types of plans 

that insurers offer or that insurance purchasers choose to buy. Elimination of exclusionary 

practices based on disability would not interfere with the ability of insurers to compete on price 

or benefits and would not prevent employers from offering more or less comprehensive coverage 

as they see fit. 

Some would argue that universal coverage in the sense here contemplated would drive up costs, 

thereby adversely influencing both the content and the availability of coverage for all. This issue 

is far more complex than it may appear at first glance. Many factors, including the size and 

composition of coverage or purchaser groups, the use of annual or lifetime expenditure caps to 

limit plan exposure on behalf of high-cost users, the availability of preventive and health 

promotion services, competitive pressures in the insurance marketplace, and many other 

considerations go into this determination. Moreover, we must remember that in the end 

somebody pays. 

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Much of the debate over health insurance coverage is less about who or what should be covered 

than about cost-shifting. If people with disabilities are denied insurance coverage for which they 

would otherwise be eligible, then the costs of their disability-related and non-ability-related care 

alike all too often fall on the public sector. In the absence of any evidence that disability and high 

use are synonymous, and in the absence of any actuarial data showing that cost differences 

among large-group plans can be attributed to the numbers of people with disabilities covered by 

those plans, the denial of coverage on the basis of disability cannot be justified or allowed. 

b. ACCESS TO SPECIALTY CARE 

For many people with disabilities who are covered by health insurance, a major barrier to 

adequate care is the inability to obtain specialized kinds of medical treatment and related health 

care services to improve or to maintain their level of functioning. The issues for this population 

typically relate not to acute care, nor to post-episodic rehabilitation, but to ongoing services (e.g., 

seating and positioning for wheelchair users) that prevent the occurrence of functional problems 

(such as pressure sores) that can in turn lead to medical problems. Physicians and other 

practitioners and institutions capable of providing the range of necessary specialized services are 

typically fewer in number than those capable of more routine kinds of general care. For that and 

other reasons, the fact that many health care plans do not include the needed sources or service 

categories within their provider networks is not surprising. 

In such cases, health plans should be expected to make provision for out-of-network or out-ofpanel referrals, and these should be available at the same cost to consumers as in-network 

services are. Health plans always have the option of including specialized practitioners in their 

networks and specialized services among the interventions and modalities they cover, but they 

should not be permitted to effectively deny needed services to beneficiaries with disabilities by 

limiting care options to only routine services and generalist practitioners. 

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c. POINT-OF-SERVICE OPTION 

Among the general public, point-of-service (POS) options, particularly the right to consult a 

specialist of one’s own choosing, is surely one of the chief concerns that people express with all 

forms of managed care. For many people with disabilities, this is a pressing issue, in some cases 

an issue of life and death. If an individual has identified or long been under the care of a 

practitioner who is uniquely skilled and who is familiar with her particular condition and history, 

the potential for finding a suitable replacement may be very small, and this is even more likely to 

be the case in rural or inner-city areas, where medical resources of all types may be thinly spread. 

POS options need not be unlimited either as to the range or number of practitioners allowed. 

Managed care plans have already developed a number of POS options, and it should not be 

difficult to adapt these to the needs of insured persons with disabilities. Nor need health plans 

face excessive costs, because they can require POS providers to accept the same reimbursement 

available to in-network providers and to abide by all other terms of plan participation. 

d. CONTINUITY OF CARE 

When a practitioner or facility leaves a provider network, or when an employer changes provider 

networks, major care disruptions can occur. For people with disabilities, who may have complex 

and specialized care needs and who may have difficulty locating alternative providers, this 

situation can present pressing problems and real dangers. 

As a general matter, network-based health insurers should be required to provide a transition 

period of at least 90 days, during which members’ established providers will be treated as de 

facto members of the new network. For persons with chronic health conditions or specialized 

care needs who despite their and the plan’s best efforts cannot find a suitable replacement, the 

law should include provision for extending the transitional period or even, where no willing and 

available provider exists, for indefinite extension of this option. 

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Who is an acceptable substitute is a question of fact, but one as to which the judgment of the 

patient and patient’s family should be accorded considerable deference. Because the health plan 

is not purporting to deny the service and is not paying more than it would have paid to a 

practitioner of its choosing, this should not have material cost implications for insurers. 

e. STANDING REFERRALS 

Owing to the gatekeeper principle under which many managed care plans operate, referrals to 

specialists are often issued on a one-time or otherwise limited basis, with further referrals 

requiring an additional, reviewable authorization by the individual’s primary care physician. 

Vexing as this process is to many, it is again often a particular problem for people with 

disabilities, for many of whom their real primary care physician may be a specialist. Because the 

plan may allow referrals or certain service requests to be made only by designated gatekeepers 

(primary care physicians/general practitioners), this may mean frequent visits to a physician who 

has no role in the care of and little ongoing relationship with the patient. 

Even if this is not the case, for the individual with a disability who needs regular, ongoing care, 

the system may necessitate innumerable re-referrals or prior authorizations, with the attendant 

delays, paper shuffling, and uncertainties associated with such procedures. The law should 

provide for plans to make open referrals for the regular and predictable specialty care that 

individuals with disabilities may need. With the duration, number of visits, types of services 

covered, and other relevant variables tailored to the individual case, these flexible referral 

practices may actually yield administrative cost savings to insurers and emotional cost savings to 

insured persons in many cases. 

f. TIMELY AND ACCURATE INFORMATION 

Given the numerous documents, the complex provisions, and the unfamiliar technical language 

involved in the administration of health plans, few people are likely to fully understand their 

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coverage. For this reason, a number of state and federal laws impose disclosure and notice 

requirements on insurers. Whatever the efficacy of these requirements for the general public, 

they are of little value for many people with disabilities, such as people who cannot read print 

evidence-of-coverage booklets or explanation-of-benefits statements because of visual 

disabilities or people who cannot participate in informational briefings or readily consult with 

time-pressed practitioners because of hearing disabilities. 

Patients’ bill of rights legislation should contain requirements for effective communication with 

purchasers, beneficiaries, and practitioners, including on-request provision of written materials in 

accessible formats and provision of sign language interpreters and assistive listening technology. 

In urgent situations where prior authorization for services is required or time limits apply to 

filing a form, these accommodations can literally make the difference between the availability 

and unavailability of needed treatment and, perhaps in some instances, between life and death. 

The measures suggested here are identical to those required under Title III of the ADA’s 

auxiliary aids and services and effective communications provisions. Whereas most people 

believe that insurers meet the definition of public accommodations for purposes of coverage 

under the ADA, replicating these provisions in the patients’ bill of rights would nevertheless be 

useful. That way, any concern insurers may feel regarding their underwriting and other business 

practices being subjected to ADA scrutiny could be allayed. The insurance industry and 

Congress should likewise understand that if the information-accessibility provisions here 

proposed are not included in the patients’ bill of rights, efforts by people with disabilities to 

achieve this access through the ADA or other civil rights laws are certain to intensify. 

Other kinds of information are also vital in this connection. Expecting health plans to make 

informed consent forms, package inserts, usage instructions for drugs included in their 

formularies, or other similar materials accessible is not unreasonable. Health plans and their 

subscribers should be accorded flexibility in how this is done, subject to the requirement that 

effective communication be achieved. 

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g. ACCESS TO CLINICAL TRIALS 

Access through insurance to clinical trials has some intriguing implications for people with 

disabilities, which may be distinct from its implications for the population as a whole. If the 

patients’ bill of rights includes any provisions regarding such access, these implications should 

not be overlooked. 

When we think of clinical trials, we normally think of controlled experiments designed to 

evaluate the safety and efficacy of new drugs. But in principle, although surgery and other 

medical procedures are not subject and often not amenable to evaluation in this way, no inherent 

reason exists why the research model that underlies the use of clinical trials needs be limited to 

the testing of pharmaceuticals. Are clinical trials limited only to drugs, or is this methodology 

available for testing other interventions as well? Put another way, if insurers are being asked to 

underwrite some of the costs of drug development by paying for patients’ participation in clinical 

trials, would it be unreasonable or infeasible to likewise ask that this resource be available to test 

the efficacy of assistive devices, community interventions, or services and interventions that, if 

found beneficial and cost-effective, might well qualify for coverage under health insurance? 

Accordingly, if access to clinical trials is included in a patients’ bill of rights, Congress should 

make clear that their use is not limited to pharmaceuticals. The FDA, NIH, or NIDRR should be 

instructed to develop procedures for registering nonpharmaceutical trials and for ensuring the 

same quality control that is required in the medication arena. 

h. MEDICAL NECESSITY 

More than any other criterion for giving or withholding services, the concept of medical 

necessity lies at the heart of the health insurance system. Advocates of health care reform have 

sometimes suspected that insurers who use lack of medical necessity to rationalize denials of 

service have other motives. But even if that is true, the complexity of the assessment, coupled 

95

with the broad discretion traditionally granted to insurers in applying the medical necessity 

concept, has resisted the articulation of any objective standard that could be consistently or 

convincingly used to review these decisions. 

These characteristics make the medical necessity determination problematic for many people, but 

for people with disabilities, the medical necessity question has several added dimensions. First, 

as health plans seek to control costs, definitions of covered services and of what is deemed 

medically necessary are tending to narrow. Allied health care providers, ranging from speechlanguage pathologists to occupational therapists and psychotherapists to rehabilitation engineers, 

report sharp declines in the willingness of health plans to use their services. Yet, services such as 

these are often the very ones that people with disabilities most need. 

Second, insurance decisionmakers, including reviewing physicians in many instances, are 

unfamiliar with AT, rehabilitation engineering, orthotics, speech-language services, vision and 

hearing services, or other modalities and inputs that people with disabilities may need. Related to 

this, many AT devices do not come from traditional or recognized medical sources and thus have 

a heavy burden of skepticism to overcome. 

Finally, many AT devices, personal assistant services, and other interventions that people with 

disabilities need may improve function or quality of life, but because they do so without resulting 

in medical improvement as that concept is conventionally measured, they are regarded as 

functional, rehabilitative, quality-of-life, social, or otherwise nonmedical in nature. For a person 

with carpal tunnel syndrome, a voice-activated computer input system may make an enormous 

difference. It may represent the difference between being able and unable to work. It may 

immensely enhance the quality of life in a variety of other ways. By minimizing stress on the 

affected wrists, it may in the long run prevent further damage, but because the joint is not 

necessarily less inflamed or more mobile, the voice-activated system is not considered medical or 

medically necessary, no matter the good it does. 

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We live at a time when technology and medicine are converging and when that combination is 

capable of bringing benefits and achieving results that were unthinkable only a few short years 

ago. Yet, we also live at a time when the health care system finds itself under increasing 

economic pressure and when short-term cost competition often assumes transcendent importance 

in the establishment of coverage policy and in the making of individual case services decisions. 

In this collision of opposing trends, people with severe disabilities may ironically face yet a 

further problem. It may be blithely assumed by some that government will provide the 

technology or other “nonmedical” services and supports they need. As most people with 

disabilities know, this is anything but routinely the case. 

Any definition of medical necessity that is suitable for our day must include a recognition that 

maintenance and improvement of function is often as or even more important than isolated 

parameters of medical improvement that may have little to do with quality of life. Our health 

care system justly prides itself on the increases in life expectancy that have been brought about in 

large part through its collective efforts. Having extended life, the health care system surely bears 

some obligation to acknowledge some responsibility for the quality of life. Only by incorporating 

a more pragmatic, functional standard of improvement or benefit into the equation can the 

concept of medical necessity be expanded to take fuller account of the needs and opportunities 

facing Americans with disabilities, and all Americans as our society ages, today. 

As it relates to the proposed patients’ bill of rights, the key question is whether this pragmatic 

standard can be incorporated into the definition of medical necessity without undermining the 

traditional and necessary discretion of health insurers to make these determinations on a case-bycase basis. Put another way, how can insurers be helped and encouraged to use a broader 

standard of medical necessity without risking loss of discretion or potentially large increases in 

costs? 

NCD believes that two approaches commend themselves for consideration as a way forward 

from this dilemma. First, because insurer fears over costs will prevent the broadening of the 

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definition of medical necessity to include AT, NCD recommends that as part of the patients’ bill 

of rights, Congress should appropriate an amount of seed money, to be administered by NIDRR, 

for the conduct of a five-year demonstration project aimed at assessing the costs and benefits 

associated with the judicious provision of AT devices and services within the framework of a 

major, national health insurance plan. The program would be carried out by an entity selected 

by NIDRR for its knowledge and experience in AT and would recruit a major insurer or selfinsured plan to participate on terms that limited the participating insurer’s financial risk and gave 

it the freedom to discontinue the project at any time if it deemed it inappropriate or unwise to 

continue. 

Under the demonstration project, skilled AT evaluators and service providers would review all 

cases, subject to patient confidentiality and informed consent, to determine the appropriateness of 

AT inputs for the function, independence, and overall capabilities of the individual. On a 

determination that AT is appropriate, and on joint selection of the technology to be used by the 

evaluator and prospective user, the necessary devices and services would be provided and their 

impact on function, future health care costs, and future health status would be carefully tracked. 

At the end of the study period, a broad range of outcome and other data accrued by project 

participants would be compared with expected outcomes and costs. NCD believes that the add-on 

costs would be far less than many fear and that the benefits, in terms of other cost savings to 

insurers, including to disability insurers and public sector income replacement insurance 

programs such as Social Security Disability Insurance (SSDI), would substantially offset such 

additional costs as are accrued. 

In the meantime, while this prospective research is being conducted, a parallel research effort 

designed to gather new insight into how medical necessity decisions are actually made should 

simultaneously go forward. Functional considerations may in fact play a decisive role in medical 

necessity determinations far more often than many would suspect. For example, if surgery is 

available to restore the ability of an individual to walk, it is the ability to walk and the capacity 

for independent movement, not an increased range of motion of the legs, that is the real 

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justification for the surgery. Similarly, if a pharmaceutical therapy can restore hearing or vision 

to a given degree, it is not for the sake of performance on hearing or vision tests, but because of 

the increased function the treatment affords, that we provide it. 

If properly designed research into the motives and reasoning of medical necessity 

decisionmakers reveals these conclusions to be warranted, then the entire frame of reference for 

the discussion of medical necessity shifts. In relation to AT, for instance, the issue then becomes 

not whether the insurance system does or should disregard function, but rather why or whether 

that system prefers one means for improving function over others that may be equally effective, 

potentially even at lesser cost. If AT or other nontraditional inputs provide a level of function 

that is comparable to what an insurer would pay if that level could be attained by established 

surgical or pharmacological means, what is the rationale for the distinctions that are made 

between modalities that yield comparable results, paying for some and rejecting others? What is 

the principled difference between a drug that allows a person to hear well enough to go out to the 

theater or restaurants again, on the one hand, and sophisticated electronic aids that accomplish 

essentially the same results, on the other hand? 

Subject to further refinement of what outcomes are truly comparable, we believe that this 

research, coupled with the previously proposed study, could assist and induce the insurance 

industry to fundamentally rethink its approach to medical necessity as that concept bears on a 

variety of goods and services that people with disabilities now need and that more and more 

people will want and need as time goes on. 

j. MENTAL HEALTH PARITY 

While insurers and others have concerns about the potential costs of requiring mental health 

benefits and services to be available on terms of equality with benefits for physical diagnoses, 

other factors also may play a role in the resistance to mental health parity. Many factors suggest 

the persistence of deep-seated prejudice against people with mental illness, and psychiatric 

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survivors continue to be greeted with fear and suspicion in many quarters. NCD has documented 

many of these experiences and concerns in a series of reports.74 

From the standpoint of the available evidence, the burden of proof on the question of the costs of 

mental health parity should properly lie with those who claim that the costs of parity are 

prohibitive. Moreover, with the increasing recognition of the interconnection between mental, 

emotional, and underlying biochemical, hormonal, and other somatic factors, the distinction 

between mental and physical illness is itself being called increasingly into question. That 

distinction is further eroded by the growing use of drugs that act to influence behavior or affect 

in exclusively biochemical ways, through inhibiting or stimulating various enzymes, 

neurotransmitters, peptides, amino acids, and other chemical messengers and pathways. 

Similarly, the role of organic factors in phenomena ranging from personality change resulting 

from trauma, to lethargy resulting from stress-mediated adrenal exhaustion, to dementia 

associated with hardening of the arteries have become widely recognized and understood. 

All indications are that the dichotomy between mind and body will continue to disappear with 

new discoveries and treatments. In light of such findings and prospects, what is the relevance of 

disease names when the mode of treatment for many of those denominated as mental and those 

denominated as physical is becoming more and more alike and when the role of psychological 

factors in ostensibly physical disease and the role of physical factors in supposedly mental 

conditions are becoming increasingly clear and significant? 

NCD believes the time has come to establish mental health parity in the patients’ bill of rights or 

in separate legislation. 

2. AMERICA’S LAW ENFORCEMENT AND MENTAL HEALTH PROJECT 

As discussed in last year’s report, America’s Law Enforcement and Mental Health Project was 

enacted in 2000.75 Among other things, the law authorized the attorney general to make grants to 

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state and local governments to establish demonstration judicial diversion programs, also known 

as pretrial diversion, that involve (1) continuing judicial supervision, including periodic review, 

of preliminarily qualified offenders with mental illness, mental retardation, or co-occurring 

mental illness and substance abuse disorders who are charged with misdemeanors or other 

nonviolent offenses; and (2) the coordinated delivery of services to these individuals and to the 

justice system, including specialized training of law enforcement and judicial personnel to 

identify and address the unique needs of a mentally ill or mentally retarded offender; voluntary 

outpatient or inpatient mental health treatment in the least restrictive manner appropriate, as 

determined by the court, that carries with it the possibility of dismissal of charges or reduced 

sentencing on successful completion of treatment; centralized case management, involving the 

consolidation of all of a mentally ill or mentally retarded defendant’s cases (including violations 

of probation) and the coordination of all mental health treatment plans and social services; 

continuing supervision of treatment plan compliance for a term not to exceed the maximum 

allowable sentence or probation period for the charged or relevant offense; and continuity of 

psychiatric care at the end of the supervision period. 

In its 1999-2000 annual report, NCD recounted hearing from a number of individuals with 

psychiatric disabilities who belong to leadership organizations representing millions of 

psychiatric survivors. These individuals and groups expressed profound concern and fear that 

once an offender with psychiatric disability enters a diversion program, he or she would be 

judicially required to abide by the mental health treatment program ordered by a case manager, 

probation officer, or even a prosecutor under threat of being judged in violation of the terms of 

the program, even if the mandated treatment is harmful or debilitating (as, for example, 

electroconvulsive therapy) and even if the treatment later proves to be inappropriate. 

Such coercive outcomes would be inconsistent with the findings and recommendations of NCD’s 

1999 report From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for 

Themselves, which underscored the inappropriateness and harmfulness of forced mental health 

treatments. Because of these concerns and other issues regarding the “voluntariness” of 

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participation by individuals with cognitive or psychiatric disabilities in the mental health court 

system, NCD recommended that the DOJ establish mechanisms for consulting with people who 

are psychiatric survivors in the implementation of the law. 

At this time, NCD recommends that the DOJ issue an overview and update on the 

implementation and early results of this important new law, with particular attention to the 

concerns reiterated above, but also with a view to fostering the emerging dialogue over the 

proper interplay between the criminal justice and mental health systems. 

3. PAIN RELIEF PROMOTION VERSUS ASSISTED SUICIDE 

In last year’s report, NCD discussed the proposed Pain Relief Promotion Act of 2000,76 which 

was intended to permit the use of controlled substances to relieve pain or discomfort. The bill 

was not adopted into law. Recent action by the attorney general aimed at preventing 

implementation of Oregon’s Death with Dignity Act has brought the subject of “assisted suicide” 

back to the forefront of public consciousness. 

NCD believes that responsible and compassionate pain relief should be a right of all people, but 

provisions to guarantee this right must be implemented in a manner that protects people with 

disabilities, who may be more vulnerable than other people to the risks and dangers of assisted 

suicide (or even undetected homicide) in the name of unregulated pain management. NCD has 

articulated its position in this regard in its report Assisted Suicide: A Disability Perspective.

77 

NCD again cautions the Administration and Congress to recognize the potential dangers of 

crafting a federal law that promotes pain management without protecting the human rights of 

people with disabilities. But NCD also believes that appropriately regulated access to pain 

management, not only through medication—whether with controlled or noncontrolled 

substances—but through a variety of other modalities ranging from biofeedback and acupuncture 

to support groups and visualization, constitutes a humane and essential component of medical 

care and societal responsibility. 

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Accordingly, NCD recommends that the Bush Administration and Congress create a national 

commission, composed of leading experts from the fields of law, medicine, and bioethics and 

including representatives of the disability community, to develop a framework for legislation that 

will adequately address the ultimately inseparable rights to life and to life with dignity. In this 

connection, NCD reminds the Administration and Congress that the despair undoubtedly 

experienced by some people with disabilities and the willingness to end their lives that some may 

feel are often the results of discrimination, prejudice, and barriers that many people with 

disabilities continue to encounter. Too often, the restrictions and lack of options that this society 

has imposed, rather than people’s disabilities or their physical pain, cause some lives to be 

unsatisfactory to the point where ending them becomes a conceivable option. From the 

standpoint of preserving life, attention devoted to these basic truths may do more to prevent 

unnecessary and untimely forfeiture of precious life than any measures to control the activities of 

doctors or to restrict the availability of dangerous drugs could ever hope to accomplish. 

4. MEDICARE 

NCD commends the Centers for Medicare and Medicaid Services (CMS), formerly the Health 

Care Financing Administration (HCFA), for its decision early this year to remove the restriction 

against coverage under the program of augmentative communication (AAC) devices.78 The 

manner in which this reform came about contains valuable lessons for other steps CMS could 

take, both in its administration of the Medicare program and in its oversight and monitoring of 

state administration of the Medicaid program. 

The now-rescinded coverage exclusion on use of Medicare funds to pay for AAC devices 

stemmed not from the law but from a national coverage decision adopted many years ago by the 

administrative agency in accordance with its broad statutory authority to interpret and apply the 

law. In other words, the ban was wholly an artifact of regulations. The Medicare statute in no 

way purported to deny AAC devices where they were appropriate or necessary, but the statute 

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also vested the implementing agency, as the complexity of the law makes necessary, with vast 

discretion over every aspect of the program. 

Like the former AAC national coverage decision, the Medicare program includes in the accretion 

of rules and regulations that have marked its growth over more than a generation a potentially 

enormous number of other barriers to function by people with disabilities, barriers that may once 

have been justified but no longer comport with our available technology or growing 

understanding and barriers whose origins and initial rationale may even be lost to time and 

memory. Although some of these barriers (including those posed by local as well as by national 

coverage decisions) may on re-examination prove defensible, many others will not. 

NCD recommends that CMS convene a panel of experts, health care practitioners, and 

beneficiaries, including persons receiving Medicare by reason of their status as SSDI recipients, 

to broadly review the entire range of existing limitations on coverage and to make 

recommendations concerning changes that would advance the purposes of the program and that 

would eliminate undue and often arbitrary distinctions between what is and what is not 

compensable. This review should include national and regional coverage decisions, regulations, 

manuals, and all other sources of administrative input into the content of the law. 

5. TELEMEDICINE 

Broadly speaking, telemedicine involves diagnosis, treatment, or monitoring done remotely 

through the use of a variety of devices linked through the telecommunications system. But as 

with any new organizing principle or technology, telemedicine is creating its share of new 

problems, even as it bids to solve old ones. 

For many people with disabilities who do not travel with the ease or regularity they might wish, 

telemedicine constitutes a particularly appealing resource. But few if any reimbursement systems 

or funding streams have undertaken a comprehensive assessment of what changes in their 

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payment criteria or fee schedules are needed in order to make telemedicine work, while 

preventing its becoming a dehumanizing and impersonal force. To illustrate, there may be 

instances in which energetic deployment of telemedicine technology could pay for all or part of 

itself through concomitant reductions in the cost of medical transportation or personal assistant 

services. The effective use of such modalities, however, requires attention to infrastructure costs 

(including, for example, the installation of appropriate broadband telephone service) that have 

never before been on the medical system’s reimbursement radar screen. 

For people with disabilities, successful implementation of telemedicine’s potential also requires 

attention to some very distinctive issues that may not be apparent to anyone who does not have a 

disability. Consider what is involved in maintaining many monitoring devices. If an individual 

lacks the physical dexterity to perform the required tasks, if the person lacks the visual acuity to 

see a light go on or to monitor a digital readout, or if a person lacks the hearing to discern an 

audio alarm, the potential of telemedicine may be compromised. NCD finds little indication that 

the technology of telemedicine is being developed with the needs of or usage by people with 

disabilities in mind. As with so much medical technology, whereas the interests of clinicians and 

manufacturers may receive considerable attention, no systematic means for obtaining consumer 

and end-user input may exist, and in a market dominated by third-party payers, to the extent 

payment is forthcoming at all, consideration of the desires of end-users is likely to receive little 

attention or weight. 

As telemedicine proceeds, its development must proceed with attention to the human assistance 

and accessibility needs of those it is intended to benefit, as well as to its accessibility and 

usability by health care workers with disabilities. Because telemedicine does not yet have a large 

installed base, time is still available to remedy these omissions and to ensure that the evolving 

system is designed with all these users and concerns in mind. To wait longer may be to leave the 

matter for too long. Congress should hold hearings on the changes to the insurance system, 

particularly to Medicare and Medicaid, which are governed by federal law, that would be 

required to make telemedicine work, as well as on the accessible design requirements that would 

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be needed to ensure that the technology of telemedicine can be effectively used by those for 

whom it could make the greatest difference and whose care costs it could most dramatically 

reduce. 

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Chapter 5 


Long-Terms Services and Supports


As our population ages, the costs and alternatives for community living, long-term care, and 

support services have become a subject of growing attention and concern. For many people with 

disabilities, including persons living in institutions because of the lack of community-based or 

in-home alternatives and those at risk of entering institutional care settings against their will, the 

issues take on pressing personal significance. 

With the Supreme Court’s historic 1999 decision in Olmstead v. L. C,79 the context and 

imperatives for public policy in the long-term care arena have been irrevocably changed. 

Olmstead gave new weight and meaning to the provisions of Title II of the ADA, which requires 

public services, including Medicaid-funded long-term care, to be provided in the most integrated 

settings possible. Now, unnecessary institutionalization of people with disabilities is illegal. 

The Bush Administration has recognized that effective community-based services involve the 

coordinated efforts of a number of federal agencies, as well as of state government, and the 

Administration has moved forward on measures to bring such coordination about and to facilitate 

the development and implementation of plans to make the principles of Olmstead a reality. 

1. THE ADMINISTRATION RESPONSE 

In June 2001, following intense advocacy efforts by and on behalf of the disability community, 

President Bush issued Executive Order 13217. Among other things, the order required designated 

federal agencies with responsibility and jurisdiction in the long-term services area to conduct 

self-evaluations designed to identify barriers to community living in their regulations, practices, 

and areas of concern. The major agencies involved were the Department of Education (ED), the 

Department of Health and Human Services (HHS), the Department of Housing and Urban 

Development (HUD), the Department of Justice (DOJ), the Department of Labor (DOL), and the 

Social Security Administration (SSA). Several offices and administrations within these agencies 
were also expressly involved, and several other departments, including the Department of 

Veterans Affairs (VA) and the Department of Agriculture (USDA), also figured in the findings 

and recommendations set forth in the preliminary report on the self-evaluation effort. This 

preliminary report, Delivering on the Promise,

80 was released by HHS on December 21, 2001. It 

sets forth a variety of policy initiatives, action proposals, and goals that will be pursued in the 

coming year and beyond. 

NCD submitted comments to the Office of Management and Budget (OMB), which will be 

reiterated as applicable here. 

Two structural features of the self-evaluation process appear key to the success of any such 

endeavor: first, the appointment of a lead agency (in this case HHS) to receive and synthesize all 

agency reports and to compile and publish them in a preliminary report reflecting the entire 

effort; second, the establishment of the Inter-agency Committee on Community Living (ICCL). 

NCD recommends that as the federal Olmstead initiative moves from research to implementation 

of key recommendations and findings, these two structural components be fully institutionalized. 

Only through use of a lead agency can accountability for the overall effort be established and 

ensured. 

It may be that the Bush Administration will choose to use the ICCL as the lead agency for 

Olmstead implementation. If so, this committee must be given the resources, visibility, and 

authority to effectively perform this role. Likewise, if a line agency such as HHS is designated, it 

too must be given the personnel, management, technical, coordination, and fiscal resources 

necessary to do the job. Given the pressing and often conflicting demands on the resources of the 

involved agencies, and given looming federal budgetary strictures, continued White House 

attention will be required if the promise referenced in the title of the Administration’s report is to 

be kept. 

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As critical as are the continued commitment and coordination of all the involved federal agencies 

and the existence and support of administrative mechanisms to ensure the necessary 

coordination, accountability, and sustained follow-up, one key resource cannot come from within 

the Federal Government. That resource is the knowledge and experience of other stakeholders, 

including service providers and, above all, persons with disabilities themselves, in gathering 

resources, monitoring progress, and identifying priorities for the effort. Accordingly, the 

administrative structure developed for continuing the Olmstead momentum must include means 

for obtaining and incorporating the regular input of those who know the issues best and whose 

lives will be most affected by the results. 

Apart from effective interagency coordination and the fullest possible participation by pertinent 

nongovernmental individuals and organizations, other conditions must also be met if the 

Olmstead initiative is to succeed. Although we recognize that the report is preliminary, its 

omission of any discussion of time lines is a matter of concern. In the absence of time lines for 

the completion of tasks and the carrying out of activities, accountability becomes difficult if not 

impossible to assign. NCD trusts that in its next Olmstead planning document, the 

Administration will address the question of how much time is required to accomplish the myriad 

tasks requisite to success and specify measurable and accountable time frames consistent with 

these assessments. 

Establishment of time frames serves another valuable purpose as well. Because coordinated 

action is required on the part of many agencies, time frames and schedules can provide the basis 

for ensuring that things that need to be done in tandem and things that need to be done in 

sequence can be scheduled or sequenced to achieve the maximum results anticipated for them. 

For example, the HHS report includes a number of initiatives on HUD’s part that will prove 

critical to the community living effort. If the timing of measures to make sufficient, affordable, 

and accessible housing available is not adequately synchronized with the timing of measures that 

remove people from institutions or prevent their entering them, serious incongruities and 

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discontinuities will be created. Only realistic scheduling, sufficient allocation of resources, and 

disciplined adherence can ensure that this does not happen. 

In this connection, NCD also recommends that in subsequent planning and progress reports, the 

Administration emphasize the interconnectedness of each agency’s measures. The HHS report 

does an excellent job of laying out a variety of measures that each involved agency can take, but 

some measures involve joint action or require the development of complementary or reciprocal 

regulatory changes. 

2. MAJOR PREMISES OF THE REPORT 

To evaluate what the Administration has found and what it proposes to do, some discussion is 

needed of what appear to be the major premises underlying the approach reflected in the HHS 

report. Some of these premises are likely to meet with almost universal approval from the 

disability community and other stakeholders. Others may give rise to some debate and 

discussion. 

Two facts underlie the philosophical and policy premises of the government’s Olmstead 

initiative. First, as stated in the HHS’s report, some 73 percent of Medicaid long-term care 

resources currently go to institutional care and some 64 percent of home care is provided by 

unpaid family caregivers, friends, or neighbors. The report recognizes the economic and 

emotional toll this takes on the caregivers and includes a number of recommendations—ranging 

from increasing the pool and professionalism of paid home and community service workers to 

providing respite and other support services for these unpaid caregivers—for easing these 

burdens. 

The second key fact, as the very existence of the Olmstead initiative demonstrates and as the 

report makes clear, is that the Administration believes in the principles of community living and 

maximum possible integration that underscore the ADA and that lie at the heart of 

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deinstitutionalization efforts for successive populations over the past two decades. In its 

operationalization of this belief, the Administration recognizes the existence of several types of 

living arrangements within the framework of a community-based setting. While we naturally 

think of a person’s home as the preferred place for an individual to live, other options—including 

intermediate care facilities for persons with mental retardation (ICFMRs), assisted living 

facilities, and board and care homes—are also acknowledged as worthy of support (such as by 

the VA) in certain instances. 

NCD shares the recognition that the ideal of enabling everyone to remain in his or her own home 

is a major challenge. But NCD believes that the Administration must remain mindful of the 

existence of a hierarchy of community-based options, with the home first and other facilities and 

settings following when the home is not feasible or the individual opts for one of these other 

settings. NCD hopes that all programs developed under the Olmstead initiative will keep this 

hierarchy in mind and will use procedures and criteria that give maximum effect to the wishes 

and preferences of the individuals being served. 

The initiatives gathered in the report reflect substantial dependence on states to make the 

Olmstead initiative a success. Given the structure of the Medicaid program, with the principal 

role played by states in its implementation, this dependence is to be expected. A variety of 

measures are proposed for empowering the states in this area, ranging from further easing of 

Medicaid waiver requirements to additional Olmstead planning grants to technical assistance to 

the states. But beyond specific grants and certain changes in the rules governing Medicaid 

coverage, including the heightened availability of home and community-based waivers (HCBW), 

the report recommends no fundamental restructuring of the Medicaid reimbursement system, 

including changes of the sort that would reward states for success in meeting qualitative or 

numerical Olmstead goals. Nor does it appear that any relaxation of state matching fund 

requirements under the Medicaid program is yet contemplated. 

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Whereas NCD believes that effective federal-state partnerships are essential to the success of this 

effort, and whereas we welcome the opportunities for variety and experimentation that the active 

participation of the states portends, we are concerned that states will be expected to make new 

financial commitments at a time when, no matter their support for the principles of Olmstead, 

they may find it difficult to do so. NCD would not regard exempting states from financial 

participation in implementing the Olmstead agenda as either prudent or feasible. 

In this regard too, it must be borne in mind that the nursing home industry and other institutionbased human service providers are reputed to be politically powerful in a number of states. In 

such states, the objections to any significant moves in the direction of community-based services 

and care, and the industry’s fearfulness of the diversion of any substantial proportion of longterm care funds from institutional to community care, could further complicate the efforts of 

states to wholeheartedly embrace the Olmstead agenda. The Administration is urged to be alert to 

this possibility as well and, if necessary, to look for means for offsetting these counterbalancing 

effects. 

3. THE ECONOMICS OF OLMSTEAD 

Broadly speaking, two ways exist to fund any major new initiative: Funding streams can be 

diverted from other uses or new funds can be brought to bear. The HHS proposal appears to 

propose some of each, but whether the freed-up or added aggregate sums will be sufficient 

depends on the numbers of current or potential nursing home residents intended to be moved into 

community-based settings and on the costs of such relocation. The report offers no estimate of 

the amount of money that would be generated or diverted by the steps it proposes. As significant, 

although we recognize the prematurity of hard and fast budgetary projections, the absence from 

the report of any estimates regarding the costs and savings of implementing Olmstead (or of the 

net costs after resultant savings are taken into account), as well as the absence of any discussion 

of a methodology for comprehensively tracking these benefits and costs, cannot but be cause for 

concern. 

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Although the long-term fiscal implications of the Olmstead initiative will, we believe, prove far 

less onerous than they may at first appear, up-front costs will without question need to be 

anticipated and met. With a federal budgetary environment radically different from that which 

prevailed at the time Olmstead was decided only three short years ago, the question of how these 

costs will be met poses serious issues. It therefore seems reasonable to suppose that only with 

massive redirection of funds from current expenditure patterns can the nation and its citizens 

with disabilities hold out any reasonable hope of the promise of Olmstead being kept in the 

foreseeable future. 

With 64 percent of current long-term care funds and 75 percent of Medicaid funds going into 

institutional care, a potential source for such funding is not difficult to identify, but the 

difficulties of massive redirection of funds and reformation of policy are complex by any 

standard. Not only leadership but great courage and wisdom will be required for the 

Administration and Congress to bring this about. NCD and the disability community stand ready 

to be of all possible assistance in this effort. 

Lest policymakers be prone to follow the path of least resistance and to seek to avoid uprooting 

powerful entrenched interests or long-established habits and patterns, the public debate 

surrounding the Laguna Hospital case in San Francisco should be viewed as a harbinger of 

developments likely to occur elsewhere in the country.81 Following the announcement of a plan 

to expend nearly a half billion dollars on a massive institutional rebuilding project, people with 

disabilities and advocates joined together to demand the redirection of these funds to community 

living and related services. On December 18, 2001, the U.S. District Court for the Northern 

District of California, relying on the Olmstead precedent, for the second time denied motions by 

the state and city defendants for the dismissal of the class action lawsuit filed to block the 

Laguna Honda building project. It is interesting that plaintiffs’ legal counsel in the case included 

not only disability advocates but representatives of senior citizens as well. 

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As prophetic as community opposition to this major bricks-and-mortar project may be, and as 

portentous as is the emergence of an alliance between people with disabilities and senior citizens 

around the goal of community living, the apparent intransigence of the state and municipal 

authorities in the matter may be of even greater significance. Such intransigence may illustrate, 

as vividly as anything can, that only with strong and continuous federal oversight, support, and 

suasion can the words of Olmstead be turned into the reality of daily life for so many. 

4. OTHER PROGRAMMATIC ISSUES 

Whatever numerical values are ultimately applied to the process, success of the Olmstead 

initiative depends on the following: returning to the community the largest number possible of 

currently institutionalized persons who wish to live in community-based settings; ensuring that 

these persons are returned to their homes where possible or to the least restrictive, most 

integrated group settings where not possible; preventing the institutionalization of as large a 

number of at-risk persons as possible; identifying and providing the resources, program supports, 

and infrastructural elements necessary to maximize the likelihood of success in working with or 

on behalf of each individual; and developing the most active and effective range of 

intergovernmental, federal-state, for-profit, and nonprofit private-public partnerships in the 

service of the effort. This agenda is large and can only be operationalized and addressed over 

time. But a number of structural features of the Medicaid program, though not addressed in the 

HHS preliminary report, are likely to create barriers at an early stage and thus are worthy of 

anticipation and discussion here. 

Although means-tested and directed at people of limited economic means, the Medicaid program 

has become a support of surprising importance to many middle-class Americans. The “spenddown” provisions of the law are one of the main reasons this is so. Through the use of spenddowns and related provisions, people whose means are initially too great to qualify for Medicaid, 

but too small to sustain the costs of long-term institutional nursing home care, have been allowed 

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or forced to use their own resources to the point where those resources (subject to certain 

statutory exceptions) are exhausted, and then to qualify for Medicaid. 

For persons avoiding or delaying nursing home care through participation in the Olmstead 

program, the costs of adequate community-based care or home services will still exceed and 

deplete the resources of many initially middle-class people in many instances. Spend-down 

provisions will need to be expanded and modified to allow at-risk individuals to benefit from the 

Olmstead initiative, in much the same way, save for place of residence, as those provisions now 

facilitate the support of institutionalized persons. The HHS report appears to recognize this fact, 

but a number of the key issues remain to be addressed. 

In a related vein, to the degree that additional public and private funding streams will need to be 

joined with Medicaid to amass the resources needed to keep the Olmstead promise, attention will 

need to be paid to coordination of benefits and to potential inconsistencies and contradictions 

between the rules applicable to these other programs and to the rules governing Medicaid. 

Bearing in mind the pressing demands that already exist on their resources, funding streams that 

should be considered and integrated where appropriate include the following: Older Americans 

Act funds, community development block grant (CDBG) funds, independent living funds, and, 

where they exist and are still funded, state in-home services programs. In addition, NCD 

recommends that the Administration support and Congress enact two statutes that have been 

proposed in recent sessions: the Family Opportunity Act and the Medicaid Attendant Services 

and Support Act (MiCASSA). 

5. IMPLICATIONS FOR THE NON-MEDICAID POPULATION 

In the long run, the availability of long-term services and supports to enable people with 

disabilities to remain in their homes and to enable older people to age in place is an issue for our 

entire population. The issue is not limited to those who receive or even who could conceivably 

become eligible to receive Medicaid. For us to truly reverse the pro-institutional bias inherent to 

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greater or less degree in most of our funding and service systems, modifying the costs and 

benefits applicable to a variety of stakeholders will be necessary. One element of this involves 

our nation’s need to dramatically increase the availability and affordability of private sector longterm care insurance. As important, we need to modify the current balance of incentives and 

disincentives under which insurers operate, so that home care will become the preferred option to 

institutionalization for insured and insurer alike. 

Currently, when affordable long-term care coverage is available, it frequently tips the scales in 

favor of nursing home admission and residence by providing substantially higher rates of 

reimbursement for institutional care, by offering only inadequate amounts for in-home services 

and supports, by imposing conditions on payment for in-home care (such as number of activities 

of daily living compromised or level of medically determinable illness) that further limit the 

availability of reimbursement, and by a number of other restrictive provisions and practices. This 

annual status report is not the place for presenting detailed recommendations about how these 

patterns could be changed or about what kinds of public-private partnerships might be effective 

in making long-term care insurance readily available. It is enough to observe that the need is too 

great for government to possibly meet alone, but if the need is not met, our nation faces risks of 

intergenerational conflict too disquieting to willingly contemplate or ever permit. NCD will 

continue to lend its experience, its access to people with disabilities, and its good offices to this 

unfolding public discussion in the months and years to come. 

6. SOCIAL SECURITY REFORM 

For a number of years, the solvency of the Social Security retirement system has been a subject 

of discussion and growing public apprehension, particularly among younger workers who fear 

that the system will not be there for them when their turn to retire comes. With the appointment 

and recent report of the Presidential Commission on Social Security Reform, the questions 

surrounding the future of Social Security, including the possibility of its partial “privatization,” 

have come even more to the fore. 

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What is striking, though, is the absence from the commission’s charter of any attention to the 

disability insurance (SSDI) program or to the possible impact on the SSDI program of any 

proposed reforms. Some people have expressed concern that some of the measures under 

consideration by the commission could adversely effect the SSDI program. 

Our purpose here is not to evaluate these risks or to propose reforms in the funding or 

administration of SSDI. Nor do we hope to opine on the various official assessments of the 

health and solvency of the SSDI trust fund. But NCD does feel obliged to remind the 

Administration, Congress, and the public that Social Security (under the Old-Age and Survivors 

component of the program for retirees with disabilities and for younger persons receiving 

benefits under the SSDI program) is a matter of great concern and importance to many 

Americans with disabilities. It may be that different trust funds and different demographic 

projections are involved; however, we believe it is dangerous and short-sighted to consider any 

major changes in any part of the Social Security system without taking their potential impact on 

all recipients carefully into account. Nor is it possible, because Social Security in one form or 

another is among the major funding streams for many people with disabilities and many older 

Americans, to analyze and unravel the complexities of Olmstead implementation without taking 

the availability and role of these funds into account as well. 

Accordingly, NCD recommends that the charge to the present and to any future commissions be 

expanded to include consideration of the SSDI program, and that all major proposals for 

restructuring any part of the Social Security system be prepared with the interests, testimony, 

and statistics of recipients/beneficiaries with disabilities in mind. Otherwise, the fragmentation, 

inconsistency, and even contradictory patterns of past policy are not likely to be remedied any 

time soon. 

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Chapter 6


Issues of Special Concern to Youth


Most of the sections of this report apply to everyone, youth along with adults. Issues of health 

care, housing, and long-term services bear on the lives of children and young adults with 

disabilities as much or in some cases with more weight than they affect the lives of older persons. 

Beyond the issues that affect everyone, a number of issues are of specific concern to youth and 

young adults with disabilities and therefore warrant inclusion in a separate chapter dealing with 

this segment of the population. 

1. SCHOOL TO WORK TRANSITION SERVICES 

As documented by NCD’s research82 and as recently acknowledged in the HHS Olmstead federal 

agency self-evaluation report discussed in chapter 5, the secondary school outcomes for youth 

and young adults with disabilities remain dramatically inferior to those achieved by their peers. 

Perhaps the most troubling statistic in this saga is the academic graduation rate, which for 

students who have received special education services hovers at around 27 percent, compared to 

75 percent for students without disabilities. Thus slowed at the starting line, continuing 

disparities in postschool life would not be at all surprising. 

Facing an economy in which entry-level jobs are likely to be harder to come by and where youth 

unemployment is likely to rise, the consequences of what does or does not happen in school are 

likely to be more influential more quickly than they may have been in recent years, when 

demand for workers of all kinds, including entry-level workers and recent graduates, stood at the 

highest levels since World War II. Ironically, even certain long overdue reforms in the policies of 

the vocational rehabilitation (VR) system may have made the transition of some students with 

disabilities from school to adult settings that much more difficult. In 2001, the Rehabilitation 

Services Administration (RSA) issued regulations implementing the Rehabilitation Act 

Amendments of 1998. 
For these reasons and others, effective transitional services are more crucial today than they have 

perhaps ever been before. In this light, the issues surrounding transition and the barriers to its 

success, though among the most chronic source of frustration facing successive administrations 

and the disability community, warrants further discussion and innovative approaches. The 

forthcoming reauthorization of IDEA is the logical time and place for doing this. 

Last year’s NCD status report reviewed a number of initiatives undertaken during 2000 to begin 

remedying the transition situation. As last year’s report stated, these efforts laid a foundation that 

requires further building in the form of effective systems at federal, state, and local levels. One of 

the most far-reaching of these initiatives was the release by the Social Security Administration 

(SSA) and NCD of a joint report calling attention to persistent issues and problems documented 

in national postschool studies.83 While postsecondary education participation showed slight 

improvement, more youth with disabilities found themselves unable to enter employment on 

leaving school and ended up consigned to Social Security benefit rolls. The data in this report 

made clear that, shocking and unacceptable as low academic graduation rates are, these 

disparities do not by themselves explain the employment and related life outcomes disclosed by 

the study. That possession of a regular high school diploma highly correlates with lifetime 

earnings potential is well-known. But other factors go into the equation as well. 

One of these might be the availability or unavailability of early work opportunities. In this 

connection, the report indicated that youth with disabilities who had participated in vocational or 

other on-the-job training opportunities were less likely to cease work and return to the SSDI rolls 

than were older disability insurance beneficiaries. 

In their efforts to enter the employment mainstream, young people from diverse cultural groups, 

the report found, faced additional barriers, such as lack of attention to their limited Englishlanguage proficiency, use by service providers of culturally inappropriate strategies or 

information, and insensitive service providers. Finally, the report identified strategies that have 

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worked and that should work, in light of existing legislation, unmet needs, and unserved 

populations, and it presented recommendations for national, state, and local community action. 

One of the best strategies identified for improving the quality of post-school outcomes is 

effective and coordinated transitional services. Under IDEA, the responsibility of schools to 

students receiving special education services is not limited to what happens to them while they 

are in school. Likewise, under the federal Rehabilitation Act, the obligation of the VR system for 

individuals with disabilities does not begin the day the schoolhouse door closes behind them for 

the last time. Through the vehicle of transition services, both service systems are responsible for 

coordinated planning and programming during the final years of school to ensure that students 

with disabilities have the skills, experience, and technology they will need to successfully enter 

the postschool world and to facilitate as smooth and seamless a transition as possible from 

educational to adult services. 

Whereas many local examples of effective and cooperative transition planning can be found, the 

institutional barriers, jurisdictional lines, cost-shifting agendas, and lack of accountability that 

broadly characterize the transition process have combined to create one of the most long-standing 

and intractable obstacles to successful entry into employment or other postsecondary educational 

activities for many young people with disabilities. Accordingly, NCD has strongly recommended 

and continues to urge that the Administration and Congress develop an overarching focus on the 

kinds of communication, collaboration, and accountability that exist across all federal agencies 

and programs that need to be involved in preparing our nation’s young people with disabilities 

for full participation in society. 

These efforts need to begin with dialogue among the affected parties, especially including youth 

with disabilities themselves. Collaboration must extend not only to such specialized service 

systems as VR and special education, but also to the broader workforce development systems 

such as one-stop centers and workforce investment boards operated under the Workforce 

Investment Act of 1998 (WIA), Job Corps, apprenticeship training programs, Americorps, 

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general equivalency diploma (GED) degree programs, vocational education programs, 

community college systems, and others. 

With both IDEA and the Rehabilitation Act coming due for reauthorization, and because they are 

the logical programs with which any new effort to improve transition services should begin, the 

time is right for serious new efforts to ensure that transition services will be provided effectively. 

As currently written, neither of these laws is lacking in provisions, indeed in mandates, for 

transition planning and services, but what does appear to be lacking are adequate provisions that 

link the operation of the two statutes and that provide for joint accountability on the part of the 

special education and VR systems. 

a. ASSISTIVE TECHNOLOGY 

One problem that frequently hinders effective services is the need for transitioning students to 

obtain assistive technology (AT) for use in postsecondary settings. Apparently, students are 

caught between the schools’ desire to retain ownership of AT they have purchased, on the one 

hand, and the VR system’s reluctance to buy new, often duplicate, AT, on the other hand, 

particularly its unwillingness to buy duplicate or additional equipment while the student is still in 

school. 

A solution to this problem could be at hand that would not require VR agencies to purchase 

duplicate technology to what the student has been using in school. The Federal Government 

should provide guidance and technical assistance to ensure that both educational and 

rehabilitation agencies are aware of means for transferring ownership of such technology from 

the one system to the other. Specifically, the IDEA reauthorization and the forthcoming VR act 

amendments should both include clear and unambiguous language requiring states to eliminate 

from their laws any provisions that would prevent or unreasonably complicate entry by 

educational and rehabilitation agencies into repurchase or other transfer agreements that would 

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allow appropriate AT to follow the student where the school system has no present need for it 

and where the user does have a continuing need. 

Similarly, IDEA and the Rehabilitation Act should contain identical language clarifying the 

appropriateness of such transfers under federal law, indicating the value of such transfers as a 

means for expediting transition and minimizing costs, and setting forth a number of models (from 

among those that already exist around the country) for how the residual value of equipment can 

be determined, for how repurchase or transfer agreements can be structured, and for how 

auditing and monitoring procedures should work. Using standard accounting procedures that 

take equipment’s age and expected useful life into account, valuation and pricing of equipment to 

be transferred should not be difficult to determine. 

b. COST-SHIFTING 

Undoubtedly, one of the chief structural barriers to the delivery of effective transition services is 

the belief on the part of each service system that the other should pay. NCD recommends that 

Congress articulate and legislate a clearer answer than currently exists, and incorporate that 

answer in both statutes. Convincing arguments can be made on both sides of the case, but the 

current uncertainty, leading as it does to innumerable low-level disputes and redounding to the 

disadvantage of postsecondary students with disabilities who cannot be expected to mediate or 

resolve these disputes, cannot be justified or allowed to continue. Standards must be developed 

that clarify the financial responsibility of each service system in the transition process. Existing 

provisions governing the potential role of Medicaid (for students who are eligible for it) should 

also be clarified. The end result should be a set of arrangements, an allocation of financial 

responsibility, and an order of precedence that, although not increasing the costs of transition, 

will eliminate the inefficiencies and costs associated with the current belief of each involved 

service system that it is the payer of last resort. 

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Lest cooperation between these entrenched systems be deemed impractical, it should be 

remembered that both special education and vocational rehabilitation are administered and 

supervised by a single cabinet department, the Department of Education. Given this 

commonality, the reauthorizations could instruct the secretary of education to establish 

administrative review procedures for quickly and definitively resolving disputes between the two 

service systems regarding the proper allocation of costs or other aspects of their roles and 

relationship under the law. It is surely not unreasonable to expect that programs administered by 

a single federal agency be able, or be made, to work effectively together, or that the oversight 

agency be expected to resolve disputes between recipients of federal funds under the programs it 

administers and monitors. 

As it too often plays out now, students and other youth suffer as service systems battle to shift 

costs, and this situation is not necessarily limited to special education and VR or college 

administrators and VR. With the complexities of the law, it is hardly reasonable to expect 

students or young labor market entrants to be able to determine, let alone enforce, answers to 

these questions. 

One approach to the cost-shifting problem involves implementation of a right-of-recovery 

approach. Under such a pay-first-fight-it-out-later approach, if either of the agency partners failed 

or refused to fulfill its responsibilities under the law, the other would provide the necessary 

services, pay the required sums, and seek recovery later. Whereas this approach could act as a 

deterrent to cost-shifting if the noncompliant service provider were financially penalized for its 

failure to perform, there is no guarantee that an agency that thought it could escape punishment 

would still not consider the potential punishment worth risking. In light of historical experience, 

the chances of state agencies being financially penalized by the Federal Government for failure 

to meet the requirements of either the special education or vocational rehabilitation laws must be 

regarded as small. Moreover, such a system would still require the student or youth with a 

disability to act as more of his or her own case manager than is reasonable to expect. Under these 

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circumstances, only an approach that imposes joint financial responsibility for success or failure, 

and that is not discretionary, will suffice to enforce the necessary coordination. 

c. JOINT ACCOUNTABILITY PILOT PROJECT 

Too often, joint- or multiple-agency responsibility in law amounts to no responsibility in fact. If 

two entities are responsible for some action or outcome, how are their relative roles in success or 

failure to be evaluated, especially if they disagree on the key facts? This is the problem that 

further complicates and frustrates efforts to monitor transitional services. No one has the 

authority to lay blame and, as significant, no penalties or other costs have attached to any of the 

involved service systems for failure. But when both service systems succeed in avoiding the 

responsibility to pay or to bring about the desired outcome, this hardly means there are no costs. 

Those costs all too frequently become the responsibility of the Social Security system or of other 

income-maintenance programs. 

In the end, blame may be of little more use than mandates. Instead, a bold and innovative 

approach is necessary that offers incentives for cross-agency transitional efforts and that rewards 

or sanctions the agencies in tandem, depending on the outcome. To accomplish this, Congress 

should establish a pilot program using competitive grants to VR agency-school district consortia. 

The amount of funding ultimately forthcoming should depend on the achievement of measurable, 

objective, and predetermined outcomes relating to evidence of success in the delivery of 

transition services and relating to the involvement and satisfaction of youth with disabilities. 

Models for such funding approaches exist under a number of laws, including the Ticket to Work 

and Work Incentives Improvement Act of 1999 (TWWIIA), which compensates Employment 

Networks on the basis of their achievement of various milestones in their work with Social 

Security recipients. 

Appropriate milestones for use of such an approach in the transitional services sphere might 

include participation of both agencies in planning meetings; establishment of joint transition 

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plans on behalf of specified numbers of students; provision of services and completion of steps 

called for under these joint plans; and achievement within expected time periods of the 

postsecondary school placements, employment, or other outcomes contemplated as plan goals. 

Success would result in full funding. Failure would result in a pro rata, across-the-board 

reduction in funding, with both (or all) involved service systems forfeiting the same percentage 

of expected funds and, as important, with no room for finger pointing or blame-shifting. The 

service systems would succeed or fail, swim or sink, together. 

For this approach at adding incentives to transition services to be successful, two things must 

happen. First, the parties to each pilot project must be able to develop, ideally with input from 

youth with disabilities and their families, predetermined, objective, and measurable outcomes 

whose achievement can be verified with a minimum of subjectivity. Second, in those cases in 

which these predetermined outcome goals are not achieved, the system must prove sufficiently 

robust to follow through on imposition of the specified financial penalties. If these criteria can be 

satisfied, consideration should be given to extending the approach to all participants in the 

transitional services process around the country. 

d. CURRENT PROSPECTS 

At the federal level, prospects for effective cross-agency, multiservice system cooperation seem 

better than they have been in some time. The spirit of the Olmstead implementation process 

embodies a recognition that our most pressing and intractable problems transcend agency lines or 

jurisdictional boundaries. NCD hopes that this spirit will extend to the provision of transitional 

services, not merely in the deinstitutionalization context of Olmstead but in the area of school-towork transition as well, where interagency cooperation is badly needed and long overdue. 

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2. YOUTH LEADERSHIP NETWORK FOR YOUTH WITH DISABILITIES 

As discussed in last year’s report, the National Youth Leadership Network (YLN) was a fiveyear project involving the Departments of Education, Labor, and Health and Human Services, 

along with the SSA and NCD The project is research-oriented and designed to include annual 

leadership training for youth ages 16 through 24 with disabilities. 

YLN conferences provide leadership training through discussions of ways young people can help 

the federal agencies to determine and update the impact of barriers to successful adult life; 

identify what works and what are promising practices; and highlight actions that should be 

implemented at the national, state, and local levels to incorporate and reflect the perspectives of 

youth with disabilities. 

In last year’s status report, NCD commended the line agencies for their foresight and sponsorship 

of this initiative. NCD also encouraged the Administration to support such recommendations for 

improvement that result from the evaluation component of this youth leadership project. 

Amid the new initiatives coming out of the Administration, NCD believes it would be valuable 

for the Administration to review and comment on the status and results of the YLN initiative and 

its viability and, more broadly, to comment on its relevance to the New Freedom Initiative. In 

this context, we hope the Administration can further address the issues surrounding transition for 

youth with disabilities, including methods for identifying and targeting necessary specialized 

services, means for fully integrating youth with disabilities into the nation’s employment training 

and placement systems, and ways for ensuring that economic trends and labor-demand forecasts 

will be appropriately used in the development of training programs, employment development, 

and job placement strategies. 

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3. EXPANDING EMPLOYMENT OPPORTUNITIES FOR YOUNG PEOPLE WITH 

DISABILITIES 

At the outset, NCD recommends that the Administration, through the Office of Disability 

Employment Policy (ODEP) or such other entities as may be deemed suitable, systematically 

review the technical assistance resources available to and needed by the various employmentrelated agencies and programs in order for them to adequately respond to the needs and 

aspirations of young people with disabilities. Here we note that historically, increases in 

unemployment, such as our nation is now experiencing compared with the levels of the late 

1990s, have their greatest impact on younger workers. If our nation undertakes measures to 

mitigate the disproportionate impact of reduced economic growth on youthful, often low-skilled 

entrants to the labor market, such measures must proceed with a recognition that among the 

futures at issue are those of many young people with disabilities. Therefore, any such national 

policy initiatives should take account of the barriers of discrimination, the need for AT, and other 

service and reasonable accommodation needs faced by these new workers. 

Any such initiatives must also ensure that outreach and recruitment efforts encompass young 

workers and would-be workers with disabilities, and should ensure that materials, processes, and 

facilities are made accessible and culturally sensitive. 

On October 25, 2000, former President Clinton signed an Executive Order84 providing for 

improved access to employment and training for youth with disabilities. This Executive Order 

sought to improve employment outcomes for persons with disabilities by addressing, among 

other things, the education, transition, employment, health, rehabilitation, and independent living 

issues affecting young people with disabilities. Executive departments and agencies were tasked 

to coordinate and cooperate with the Presidential Task Force on Employment of Adults with 

Disabilities to strengthen interagency research, demonstration, and training activities relating to 

young people with disabilities; create a public awareness campaign focused on access to equal 

opportunity for young people with disabilities; promote the views of young people with 

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disabilities through collaboration with the youth councils authorized under the Workforce 

Investment Act; increase access to and use of health insurance and health care for young people 

with disabilities through the formalization of the federal Healthy and Ready to Work interagency 

council; increase participation by young people with disabilities in postsecondary education and 

training programs; and create a nationally representative youth advisory council, to be funded 

and chaired by the Department of Labor, to advise the Presidential Task Force in conducting 

these and other activities. 

NCD recommends that the Administration indicate its views regarding the efficacy of these 

measures and indicate the appropriate structural arrangements for bringing these goals about. 

In this connection, the DOL recently awarded more than $11 million in grants to promote the 

New Freedom Initiative’s commitment to integration of persons with disabilities into the 

employment mainstream of our nation.85 NCD welcomes these initiatives and particularly 

commends the department for expressly including youth with disabilities in the scope of these 

efforts. 

Along related lines, the Workforce Investment Act of 1998 (WIA), as just noted, created local 

workforce investment boards to guide the development of programs, to foster necessary 

connections and relationships, and to set priorities for program development and use of funds. 

Recognizing the special problems faced by youth in the competitive labor market, even in the 

good economic times that marked passage of the Act, the WIA created youth councils. NCD 

recommends that the Administration, through ODEP or other appropriate entities, report on the 

status and function of these councils and indicate its views concerning their roles in future youth 

employment development efforts. 

Overall, NCD recommends that the approach adopted by the Administration in orchestrating 

implementation of Olmstead could prove valuable in comprehensively identifying the barriers to 

training and employment faced by young persons and in developing interagency strategies for 

removing these barriers. 

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Chapter 7 

Employment 

1. INTERAGENCY COORDINATION 

The Office of Disability Employment Policy (ODEP), formerly the President’s Committee on 

Employment of People with Disabilities, is now established within the Department of Labor 

(DOL), under the leadership of an assistant secretary. The office has a unique opportunity to 

bring coherence and accountability to the disability employment programs operated or funded 

under the auspices of the department, as well as to increase the awareness and responsiveness of 

mainstream employment development programs to the need for, and the issues involved in, 

making these programs accessible to all Americans seeking the dignity of work. 

But commensurate with its opportunities, ODEP also faces major challenges if it is to succeed in 

its mission and avoid becoming just another set of initials on an organizational chart. Some of the 

specific program issues ODEP faces will be enumerated in this chapter. At the moment, it is 

enough to say that to be successful, the office will have to coordinate its work effectively, not 

only with other DOL units but also with other federal agencies and with the programs they 

administer. Some of the key coordinate agencies in other departments with which ODEP will 

need to work effectively are the vocational rehabilitation (VR) program administered by the 

Rehabilitation Services Administration (RSA) in the Department of Education (ED); the 

Employment Networks operating through the Social Security Administration (SSA) under the 

authority of the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA); the 

Office of Personnel Management (OPM); the Equal Employment Opportunity Commission 

(EEOC); and the Department of Justice (DOJ). 

The issues are crosscutting. For example, efforts to substantially reduce levels of unemployment 

among persons with disabilities will require significant attention to basic skills training and to 

specific job and skills training opportunities that are keyed to the areas of labor shortage or 

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expected growth in labor market demand in our economy. Much of the responsibility and 

funding for this training rests with the state VR agencies operated under the federal-state VR 

program. Oversight responsibility for the state VR program rests with the RSA. As coequal 

agencies, a unit of the DOL has no authority to tell a unit of the ED what to do, but with 

coordination through the interagency committee and with other collaborative measures and 

relationships, it should prove possible for such entities as these two to identify and pursue 

common goals, to act jointly where appropriate, and to speak in unison to support any 

ameliorative legislation that might be necessary. Admittedly, such coordination between and 

among federal agencies, even among units of the same agency, has not been a hallmark of federal 

program administration over the years, but the creation and responsibilities of ODEP offer the 

opportunity for a new start. 

The atmosphere of coordination and cooperation among cabinet-level departments that currently 

surrounds the Olmstead implementation efforts may contribute to the ability of diverse agencies 

and units, with different agendas, different cultures, and separate budgets, to work together in the 

identification and pursuit of common goals. NCD sincerely hopes that the momentum for 

cooperative and innovative responses to problems that are larger than any one agency or any 

single jurisdiction will continue to prevail and will mark and distinguish federal activities in the 

disability policy realm in the months and years to come. 

2. BASELINE STATISTICS 

As discussed in chapter 1, the absence of reliable statistical data on disability employment levels 

and employment trends represents a significant impediment to the forging of sound public 

policy. In last year’s status report, NCD recommended that ODEP initiate and support the 

development and implementation of a measurement system that tracks and reports on the 

employment status of Americans with disabilities on at least an annual basis. Collaboration with 

the Bureau of the Census in its efforts to improve disability-related information collection in the 

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Current Population Survey (CPS) represents one way of bringing this important initiative to 

fruition and represents one useful approach to improving current data collection instruments. 

More immediately, the HHS Olmstead preliminary implementation report Keeping The 

Promise86 reports on parallel efforts to refine employment data collection undertaken by ODEP’s 

coordinate DOL agency, the Bureau of Labor Statistics (BLS). The ability to bring these entities 

and other interested parties within the government together represents another excellent test case 

for cooperation and coordination in the pursuit of shared objectives and in the effort to meet 

common needs. 

In connection with the problems posed by questionable employment statistics, NCD recommends 

that ODEP work to ensure that all DOL units review their current research-funded grants and 

contracts to make certain that federal funding is not provided to support the production of 

research reports regarding employment of people with disabilities that rely exclusively on the 

Survey of Income and Program Participation (SIPP) or the CPS or other federal statistical 

sources containing major shortcomings. 

3. TICKET TO WORK AND WORK INCENTIVES IMPROVEMENT ACT 

a. WORK INCENTIVES 

TWWIIA87 was produced through the combined efforts of the Clinton Administration, Congress, 

and the disability community. On December 17, 1999, it became the last major piece of federal 

legislation signed into law in the twentieth century. 

TWWIIA consists of two distinctive but closely intertwined parts. First, by creating new entities 

for providing job-training and job-seeking assistance to individuals with disabilities who receive 

Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits, and 

by creating financial incentives for success on the part of the Employment Networks 

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administering the “Ticket,” the law created new methods and new resources for job training, job 

seeking, and job placement. Through its use of tickets (in effect, vouchers) issued to eligible 

individuals with disabilities for use by them in obtaining employment services from eligible 

Employment Networks of their choice, the law gave job seekers and employment service 

recipients unprecedented autonomy in selecting their own services and service providers. 

The second major thrust of TWWIIA, beyond strengthening and energizing employment-related 

resources, is that the work incentives portion of the law attempts to reduce one of the major 

barriers to employment for persons with disabilities: the potential loss of health insurance once 

employment is obtained. By reason of their status as SSI or SSDI recipients, TWWIIA 

participants are eligible for (and most do receive) health insurance coverage under the Medicaid 

or Medicare programs. Owing to the links between eligibility for cash benefits under these 

programs and entitlement to this health insurance coverage, many people with disabilities who 

lose cash benefits as a result of returning to work also soon find themselves deprived of their 

health insurance as a result. Even when work-returnees can obtain insurance in the private sector, 

through their employers or through inclusion on a spouse’s policy, the extent of such coverage is 

often insufficient to meet their ongoing or specialized medical needs. 

To deal with the work disincentives created by the employment–health insurance link, TWWIIA 

created a number of means by which individuals with disabilities could retain their federally 

funded health insurance for substantial periods of time after ceasing to qualify for cash benefits 

because of income from work. For persons entering employment from the SSDI program, 

Medicare benefits can now be retained for nearly nine years. For those entering employment after 

receiving SSI payments, the situation can be more complex, with continued eligibility for 

Medicaid benefits depending on states’ exercise of the discretion TWWIIA grants them to raise 

the Medicaid income eligibility thresholds. 

At a time when many states are financially hard-pressed, their willingness to broaden Medicaid 

coverage in this way, as well as their ability to provide the applicable state matching funds, may 

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be open to question. Even states that have implemented the Medicaid buy-in program pursuant to 

the use of Medicaid infrastructure grants under TWWIIA88 may find it increasingly difficult to 

maintain the improvements they have adopted or are contemplating. Accordingly, NCD 

recommends that the Administration develop and Congress enact legislation to increase the 

federal share of Medicaid funds for those states that implement TWWIIA-based reforms in their 

Medicaid programs and that achieve predetermined levels of return to work and job retention 

among their SSDI- and SSI-recipient citizens taking part in the program. 

b. EMPLOYMENT NETWORKS 

The Employment Networks created under TWWIIA receive payment for their services in a 

unique way. Instead of receiving per capita, fee-for-service, fixed-periodic-fee, formula-funding, 

or other traditional types of funding, TWWIIA Employment Networks are reimbursed under a 

“milestones” system, with maximum payment being available if program participants obtain 

employment within, and retain employment for, specified periods of time. 

If TWWIIA is successful, the service-provider funding mechanism it uses may well become a 

model for other government-supported employment services, within and beyond the disability 

sector. Milestone-based and other performance- and outcome-based funding strategies are likely 

to become increasingly popular in a number of service sectors outside of employment. Use of 

such a mechanism under TWWIIA reflects the determination by Congress that such traditional 

funding mechanisms as flat per capita reimbursement or all-or-nothing reimbursement based on 

“successful outcomes” are inadequate to meet the needs of a hard-to-place job-seeking 

population or are inadequate to sufficiently motivate the employment services providers who 

work with the SSI/SSDI population. 

As intriguing as this new funding model is, it also poses real risks. What economic incentive do 

Employment Networks have to work with persons who have the most significant disabilities and 

with people who need costly AT if the networks’ potential reimbursement cannot be increased 

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sufficiently to defray their added costs and to yield an acceptable rate of return? The Work 

Incentives Advisory Panel, authorized by TWWIIA and operated by the SSA, is monitoring a 

variety of issues bearing on the efficacy of the TWWIIA program model. Its Design Evaluation 

Subcommittee is scheduled to issue a report on adequacy of incentives early in 2002. If this 

report gives any indication of “creaming” on the part of Employment Networks (that is, of their 

targeting their recruiting efforts or selection criteria to people with relatively less significant 

disabilities or with small or nonexistent specialized service needs), the SSA and the 

Administration should be prepared to move quickly to implement or to recommend to Congress 

such reforms as are necessary to remedy this situation. 

c. TECHNICAL ASSISTANCE AND ADVOCACY 

In addition to the state Medicaid infrastructure grants noted above, TWWIIA contains 

authorization and funding for a number of technical assistance, planning, and related initiatives. 

One of the potentially most important of these is the benefits planning, assistance, and outreach 

program (BPAO). The BPAO offers grants for legal assistance, sometimes including state-based 

protection and advocacy (P&A) systems, to provide benefits counseling, information, and other 

related forms of assistance (excluding litigation) to TWWIIA participants. Because of the 

inordinate complexity of the work anti-incentive provisions in the law, BPAO should prove a 

valuable resource for individuals seeking services and a significant asset to program management 

and oversight. 

TWWIIA is hardly unique, even among employment programs, in presenting legal and 

procedural complexities to individuals with disabilities seeking to access and benefit from its 

services. In many employment services, people with disabilities continue to face major barriers: 

disproportionate investment of program resources in eligibility determinations; evaluations that 

use inadequate criteria, procedures, or technology; inaccessibility; and reasonable 

accommodations and exclusionary employer screening practices, just to name a few of the most 

pervasive. The kinds of information, advice, support, and focused expertise about employment136

related issues that the P&As and other technical assistance providers are likely to develop and 

disseminate under the TWWIIA program could prove valuable in other settings as well. 

Accordingly, NCD recommends that in the reauthorization of the Rehabilitation Act, the 

Administration and Congress give consideration to broadening the scope of resources in the 

employment support area. Congress should establish a pilot program offering a limited number 

of competitive grants to P&As or other nonprofit organizations to operate BPAO-type programs 

that deal with the broad range of employment issues, resources, and rights, with the resources 

and services of these programs being available to all jobseekers or jobholders with disabilities 

and applicable to all employment programs. 

d. OTHER OVERSIGHT PRIORITIES 

For TWWIIA to be fully effective in returning SSDI and SSI recipients to the workforce, a 

significant number of institutions and entities, some old and some newly created by the statute, 

will have to work effectively and cooperatively. NCD is confident that the SSA, aided by the 

advisory panel noted above, will monitor and evaluate all the component parts of the system, 

ranging from the ability of its own staff to provide clear and adequate information about the new 

rules to the role of state VR agencies in working with, or in some cases in serving as, 

Employment Networks. Where any serious problems are found, NCD is hopeful that the SSA 

will move promptly to correct them or even to seek congressional action to correct them without 

waiting for the completion of the full five-year reporting period specified in the law. 

One area of concern that should be addressed on an ongoing basis relates to the focus of the 

TWWIIA effort. The new program is organized around the creation of resources at the 

jobseeking and employment-reentry points. But as the SSA’s own statistics indicate, among 

those few SSDI or SSI recipients who do return to work, job tenure remains a problem, with a 

sizable number returning to the benefit rolls within a few years. The program does not yet appear 

to address the ongoing need for follow-up, job retention, and career advancement services 

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(including in the area of new technology) that many workers with disabilities need. Ultimately, 

these issues will need to be addressed, and, ironically, the more successful TWWIIA is in 

returning people to the workforce, the greater and the larger will that need be. 

4. FEDERAL HIRING INITIATIVES 

a. PERSONS WITH PSYCHIATRIC DISABILITIES 

In its 1999-2000 annual report, NCD reported on two Federal Government initiatives designed to 

broaden employment opportunities available to people with psychiatric disabilities. On June 4, 

1999, an Executive Order was issued requiring that individuals with psychiatric disabilities be 

given the same federal hiring opportunities as people with significant physical disabilities or 

people with mental retardation. Subsequently, on March 17, 2000, the OPM issued proposed 

regulations to create a new governmentwide excepted appointing authority for individuals with 

psychiatric disabilities. This authority broadened the category of people who can 

noncompetitively acquire otherwise competitive civil service status after two years of successful 

service, thus providing individuals with psychiatric disabilities the same hiring opportunities 

already offered to individuals with mental retardation or significant physical disabilities. 

Most recently, as discussed in the December 2001 HHS Olmstead report, the OPM announced 

measures designed to further increase employment opportunities in the Federal Government for 

people with disabilities and to create more uniformity in the provisions applicable to persons 

with psychiatric and physical disabilities. 

NCD commends the OPM for its efforts and believes it would be useful for the OPM to report to 

Congress and the public on the results of its efforts to date, on the recruitment or other outreach 

measures it has adopted, and on the tenure and upward mobility of persons who have entered 

federal employment as a result of these programs. NCD particularly recommends that OPM 

indicate the applicability of these competitive-appointment exceptions and exemptions to the 

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promotion and advancement opportunities available to persons with disabilities in each of the 

three categories—significant physical disability, mental retardation, and psychiatric 

disability—covered by these programs. 

b. REASONABLE ACCOMMODATIONS 

NCD also commends the OPM for its announcement on December 11, 2001, of rules requiring 

all federal agency job vacancy notices to include language apprising applicants of the availability 

of reasonable accommodations.89 In light of these notice requirements, NCD believes that a full 

assessment of the reasonable accommodations procedures and practices used by the Federal 

Government to implement hiring and promotion policy could prove quite valuable. Accordingly, 

we urge OPM, acting in concert with OMB or such other entities as may be appropriate, to study 

and report on the level of awareness among federal personnel officers regarding the meaning and 

availability of reasonable accommodations; the budgetary strategies available for providing 

reasonable accommodations; the time frames and authorization processes associated with the 

selection and implementation of reasonable accommodations; and the methods used by agencies 

to obtain and evaluate employee input into the choice of accommodations. 

5. DEMONSTRATION PROJECTS 

In last year’s report, NCD reported on a number of interagency and public-private initiatives and 

demonstration projects designed to increase employment opportunities for people with 

disabilities and to break down barriers to the employment of people with disabilities. Several of 

these initiatives also were intended to increase the ability of state-based and other mainstream 

employment services to incorporate people with disabilities into their activities and programs. 

Agencies included in these demonstrations were the SSA, the HHS, the DOL, and the ED. The 

programs included award by the ED of six systems-change grants to establish models of 

improved cooperation and coordination among state vocational rehabilitation programs, public 

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employment training programs, and other related programs. In addition, the SSA was working 

under cooperative agreements with 12 states to develop innovative projects to help adults with 

disabilities reenter the workforce. Moreover, prior to its absorption into the new ODEP, the 

President's Committee on Employment of People with Disabilities worked to 

coordinate a commitment by the U.S. Chamber of Commerce, the Society for Human Resource 

Management, and dozens of private sector companies to support several initiatives to advance the 

employment of people with disabilities. 

Based on the New Freedom Initiative, as reflected in the Olmstead report, Administration and the 

nation clearly stand on the threshold of an exciting array of potentially innovative and productive 

employment initiatives involving federal agencies and a significant number of public and private 

sector partners. In the interests of knowing what works and because of the importance of 

continuity, NCD recommends that all the agencies spearheading last year’s initiatives provide 

updates on whether these programs continue in operation and on what results or methodologies 

they have yielded. 

6. ONE-STOP CAREER CENTERS 

In 1998, Congress adopted the Workforce Investment Act (WIA),90 which, among other things, 

sought to simplify the bewildering web of federal labor market and employment programs. From 

the standpoint of increased efficiency and greater customer satisfaction, one of the WIA’s key 

ways of doing this was the establishment of one-stop centers where jobseekers could access and 

obtain all relevant public services and information, could handle all key documentation and 

access all necessary databases, and could make all necessary contacts from one central location 

in their area. 

Although the parallel VR system for individuals with disabilities was not abolished or merged 

into the one-stops (in fact, the Rehabilitation Act Amendments of 1998 constitute Title IV of the 

Workforce Investment Act), the one-stops were expected to be available and accessible to all 

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persons, including persons with disabilities, and they and the state VR systems would establish 

cooperative working relationships to pool their strengths and resources on behalf of jobseekers 

with disabilities. Serious unanswered questions persist about whether and to what extent such 

pooling of resources or combining of strengths has in fact taken place 

For example, informal reports from people around the country paint a troubling picture of onestop center inaccessibility. Among other problems, electronic and information technology 

(E&IT) used for job searches and other activities is frequently not accessible to persons with 

disabilities. As discouraging, one-stop center officials are reported in several instances to have 

asserted that the funds for making their E&IT accessible should not have to come from their 

regular funding but from extra funds, specifically appropriated or allocated for accessibility 

purposes. 

No major litigation regarding the accessibility of one-stop centers, invoking either Section 504 or 

Section 508 of the Rehabilitation Act, is yet known to have commenced. But rather than await 

such litigation, NCD recommends that the DOL move swiftly and decisively to clarify the 

applicability of federal civil rights laws, including Sections 504 and 508, to the facilities and 

technology of the one-stop centers and to ensure that accessibility requirements are implemented 

with as much energy as any other of the legal standards that bear on the operation of these 

centers. In this connection, the DOL should also review the technical assistance currently 

available to one-stops for purposes of ensuring that the centers understand their responsibilities 

under the law and making certain that the centers will not inadvertently overestimate the costs or 

difficulty of accessibility because of lack of adequate information regarding its principles. 

7. LICENSING AND FUNDING 

Elsewhere in this report, we argue for vigorous enforcement of federal civil rights laws through 

the funding and regulatory roles played by the Federal Government. Where public funds help to 

defray the cost of an activity, the recipients of such funds (whether or not the funds are 

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denominated as “federal financial assistance”) properly should be expected to abide by civil 

rights laws, just as they are expected to adhere to a host of other important laws. Similarly, NCD 

believes that in certain cases in which the federal role involves the regulation or licensing of 

activities, it is likewise reasonable to expect compliance with all laws by those so regulated and 

protected by the government, by its licensing and regulatory authority, against competition. 

A number of legal complexities surround the broad-based application of these principles. Recent 

court decisions have, for example, drawn sharp distinctions between the authority of the FCC to 

enforce civil rights and its jurisdiction to mandate any form of “affirmative action.”91 Whereas a 

fine line may in some instances exist between protecting civil rights and requiring entities to 

engage in affirmative activities that go beyond the traditional notions of the meaning of 

nondiscrimination, NCD strongly believes that accessibility of E&IT paid for with federal funds, 

no less than accessibility of buildings and facilities constructed with federal support, falls clearly 

on the civil rights side of that line. 

NCD also recognizes that the authority of the government, even when paying the freight, may be 

far less in its dealings with private sector partners than with units of government. Elsewhere in 

this report, NCD recommends that the DOJ comprehensively study the question of whether the 

Federal Government is making optimal or consistent use of its funding relationships to maximize 

its leverage on behalf of accessibility. At least in those circumstances in which the nature of the 

relationship meets the standards for federal financial assistance established under Section 504 or 

the purpose of the relationship includes information dissemination activities that bring the E&IT 

used by the private entity within the scope of Section 508, suggesting that adherence to 

principles of accessibility can fairly be demanded and expected is surely not unreasonable. 

But even apart from such a DOJ study, the implications of accessibility for employment and for 

access to employment opportunities are especially pressing and immediate. Thus, pending the 

DOJ’S action on this recommendation, NCD recommends that each federal agency involved in 

job-creation efforts or in the funding of programs that create or support jobs involving E&IT 

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independently evaluate the extent of its responsibility and the scope of its authority for ensuring 

the accessibility of these programs, jobs, and information resources to all the taxpayers who help 

fund them. 

8. TAX INCENTIVES 

The past year has demonstrated the Administration’s strong belief in the role of tax policy as an 

engine for stimulating economic growth and for encouraging employment. Indeed, recognizing 

the enormous power of tax policy, the Administration’s Fall 2001 economic stimulus proposals 

for reviving the economy placed heavy emphasis on tax relief as the lever for unleashing and 

renewing the job-creation capabilities of American industry and commerce. In light of this 

precedent, it is appropriate to ask what tax incentives could hold value for enhancing the 

employment of persons with disabilities. 

Although the Administration and Congress have on balance favored tax rate reductions as the 

approach of choice to tax policy, all of the modifications to the Internal Revenue Code adopted 

over the past several years have included targeted provisions aimed at addressing matters that are 

not responsive to changes in tax rates alone. The timeliness of tax reforms aimed at incentivizing 

the employment of persons with disabilities is heightened by the fact that, pursuant to Section 

303 of TWWIIA, the Government Accounting Office (GAO) is currently launching a study of 

existing disability-employment incentives currently in the law. NCD recommends that the GAO 

analyze these provisions—including the disabled access credit,92 the architectural and 

transportation barriers removal deduction,93 and the disability-related portions of the work 

opportunity credit94—with a view to measuring their economic and social impact along with 

their cost to the Treasury and with a view to eliminating historically explicable but no longer 

relevant limitations on their availability. Examples of such outmoded provisions include 

limitation of the work opportunity credit to those persons with disabilities who have received SSI 

(not SSDI) in the past two months or who have completed a program of vocational rehabilitation 

and been certified by the state VR agency (not by a TWWIIA Employment Network or by a one143

stop center). Another example is the applicability of the barrier-removal deduction only to a 

restricted category of physical barriers but not to communications or information-access barriers. 

In maintaining such limitations on the scope of these provisions and on their use by business, the 

law does not reflect any policy. Rather, such restrictions as these simply reflect the fact that these 

provisions were enacted at a time when the concept of E&IT accessibility or communication 

barriers to access had not yet entered our lexicon or our consciousness. 

Whereas the legislation authorizing the study does not explicitly mandate their inclusion, NCD 

hopes that the GAO will find it possible and within the scope of its assignment to include 

employee- as well as employer-based incentives in its study, particularly at a time when bottomline pressures may force employers to cut back on fringe benefits and may lead some employers 

to be more resistant to the provision of even tax-deductible reasonable accommodations than 

might formerly have been the case. Tax incentives aimed directly at employees (rather than at 

their employers), such as the impairment-related work expenses deduction,95 may make the 

difference between ability and inability to work in an increasing number of cases. 

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Chapter 8 

Welfare Reform 

In 1996, “welfare as we know it,” to use former President Clinton’s famous campaign phrase, did 

indeed come to an end with the passage of the Personal Responsibility and Work Opportunity 

Reconciliation Act (PRWORA).96 Now, as PRWORA faces reauthorization in the second 

session of the 107th Congress, welfare as we have come to know it is once again under the 

microscope of congressional and public scrutiny. 

As the law comes up for review and reauthorization, with many people having exhausted their 

five years of eligibility for welfare assistance, Congress and the Administration come to their 

task in a changing economic climate and with many new issues and questions to be confronted. 

Some of those questions, many of which have not been featured in discussions of welfare reform 

up to now, involve the interplay between welfare and disability. Specifically, these questions 

relate to the connection between so-called welfare and specialized disability-oriented income 

maintenance programs and to the ability of, and the mechanism for, state welfare reform systems 

to provide the technical assistance and support services that recipients with disabilities may need 

to enter and thereafter retain and advance in employment. 

One of the most intriguing features of PRWORA is the flexibility it accords to states in the ways 

they implement welfare reform and in the system of reimbursement established to encourage and 

reward success. Typical of this approach are provisions allowing states to retain unspent funds if 

they achieve specified welfare caseload, work, and other goals and provisions linking the 

availability of recipient time-limit extensions and the waiver of other provisions to states’ 

success in meeting a number of program targets and outcome goals. 

Within this framework, one key question to ask relates to the different ways states may have 

attempted to link their welfare reform systems and their various disability programs. In its 

reauthorization deliberations, Congress should seek information on the extent to which job 

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training, counseling, transportation services, day care, and other components of welfare reform 

programs have included or used screening for disabilities that might complicate program 

participation or jeopardize success; the degree to which states have helped or have required 

subcontractors to provide reasonable accommodations (ranging from accessible vehicles to 

specialized child care) to facilitate the participation of welfare recipients with disabilities or 

welfare recipients who are caregivers for persons with disabilities in return-to-work programs; 

and the efforts that have been made to enlist the services and resources of the VR system on 

behalf of welfare recipients who by reason of disability may also be eligible for these services. 

NCD hopes that in its consideration of reauthorization, Congress will seek and obtain testimony 

and information on these issues. Only in that way can the impact of welfare reform on recipients 

with disabilities (particularly recipients with hidden disabilities) or on families having members 

with significant disabilities be fully assessed, and only with the elucidation of such information 

can consensus be reached over the priorities for any new legislation in this area. 

The involvement of the VR system or other disability-oriented service systems in the welfare 

reform effort might create new coordination and allocation-of-responsibility issues; however, it 

seems likely that, properly brought to bear, the resources and expertise of these service systems 

could contribute to the assessment of disabilities, including hidden disabilities, in a number of 

instances and could increase the likelihood of success in the return-to-work efforts of individuals 

with disabilities. Pending elaboration of what has been tried and accomplished in this area, we do 

not offer any specific recommendations at this time but do expect to be able to do so as the 

public discussion proceeds. 

Attention to the effects of welfare reform has thus far tended to concentrate on the reductions in 

caseloads and in the welfare rolls that have occurred since passage of the law. But with the 

passage of time, information on other outcomes, including the job tenure of former recipients, 

will become increasingly necessary. For former recipients with disabilities, such information 

may be particularly important, bearing as it does on the follow-on and support services, from 

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wherever they ultimately come, that these former welfare recipients will need in order to become 

long-term productive members of the economic mainstream. 

In connection with the flexibility PRWORA accords to the states, one of the most interesting 

features of the law’s structure is its approach to waivers. In a number of settings, the extent to 

which extensions are available for the five-year lifetime limits on receipt of Temporary 

Assistance to Needy Families (TANF) or the availability of waivers of other requirements under 

the law hinge on a state’s success in meeting or exceeding a variety of program targets. Congress 

may wish to consider adding provisions that reward states, either with administrative flexibility 

or with extra funds, based on the extent of their efforts and success in developing appropriate and 

reciprocal links between their welfare reform and disability services systems. Such links cannot 

but prove beneficial to all parties by increasing the resources available for persons with 

disabilities or persons with major caregiving responsibilities to enter, reenter, and remain in the 

workforce and by increasing the likelihood that work with such persons will have positive, longterm results. When it comes to working with recipients with disabilities, state welfare reform 

systems should not have to reinvent the wheel. Measures should be taken to ensure that the 

resources and expertise of the state VR and other disability services programs are available to 

contribute to the successful outcomes that all seek. 

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Chapter 9 

Housing 

Shortages of affordable housing are widely recognized to represent one of the major problems 

facing persons of moderate and low incomes in our country today. For persons with disabilities, 

this problem may be even more acute, because affordability for them is conditioned by 

inaccessibility, availability, and discrimination. Put another way, the supply of otherwise 

affordable housing that many Americans with disabilities can purchase, rent, or even visit is 

limited by the fact that much of our housing stock is not accessible and, even if it is accessible, 

discrimination may stand in the way of its availability and occupancy. 

Housing plays a profound role in all aspects of people’s lives. The time and distance involved in 

getting to and from work (which are both reported to have increased during the 1990s); the 

amount of discretionary income remaining for education, health care, or even food and clothing 

after housing costs have been met; the level of physical safety and personal security people feel 

in their environments as a result of the kinds of neighborhoods and communities in which they 

live; the proximity to toxics or other environmental hazards; and the quality of education readily 

available to one’s children all, along with other elements of life, are directly and powerfully 

related to the options that people have in housing. 

Any systematic effort to increase the stock of accessible, affordable, and available housing for 

persons with disabilities must take account of the overall housing situation faced by the United 

States. That is a situation that contains some remarkable and some disheartening components. 

For Americans as a whole, home ownership stands at or near historic highs. An October 2000 

Department of Housing and Urban Development (HUD) press release indicated that more than 

two-thirds of Americans lived in homes that they or their families owned. Levels of home 

ownership, traditionally considered a bellwether of social progress and stability and the hallmark 

of the American dream, have also risen impressively among minority groups. But among the 

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minority group of Americans with disabilities, rates remain shockingly low, languishing in the 

single digits, according to another recent study.97 

The significance of affordable, available, and accessible housing has received some recognition 

from the Administration. Pursuant to Executive Order 12892, the President’s Fair Housing 

Council has been created, and its establishment served as the occasion for statements of 

commitment to fair housing enforcement on the part of leading officials, including the secretary 

of HUD and the attorney general of the United States. More recently, the importance of housing 

issues has again been acknowledged by the Administration in its preliminary Olmstead 

implementation report issued in December 2001.98 HUD was a participant in the agency selfevaluation process leading to that report. HUD’S involvement and the considerable attention the 

report paid to plans and recommendations for upgraded enforcement and other program 

enhancements in the housing and fair housing areas reflect the awareness that our ability to meet 

the aspirations of people with disabilities and older persons for deinstitutionalization or to remain 

in their own homes depends on the availability of adequate housing for them. Unless 

communities across the country can meet this need for housing, the aspiration for and the 

momentum toward community living surely will be blunted to a considerable degree. 

NCD has long maintained a profound concern over housing issues and has addressed its attention 

to the matter in a number of reports and studies. In the report of its 1996 disability summit, 

Achieving Independence, NCD made a number of recommendations regarding housing and the 

Federal Government’s enforcement role. Our 1999-2000 annual report reviewed a number of 

policy activities undertaken by the Federal Government in 2000 relating and responding to many 

of NCD’S recommendations from the Achieving Independence report. Most recently, NCD 

released its major report Reconstructing Fair Housing99 on November 6, 2001. This report 

catalogued serious, pervasive, and persistent weaknesses and failures in the Federal 

Government’s enforcement of nondiscrimination laws in the area of fair housing. These findings 

and recommendations will be summarized in this chapter. 

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Before proceeding to a discussion of the specific issues raised by the Reconstructing Fair 

Housing report, it is important to note that the report covers the period ending September 30, 

2000. The patterns and practices the report finds are long-standing and implicate successive 

administrations of all parties and persuasions. The existing and deep-seated problems 

Reconstructing Fair Housing discloses will require sustained, concerted, and high-level attention 

if this tragic legacy of missed opportunities is truly to be overcome. 

1. FAIR HOUSING AND EQUAL OPPORTUNITY 

NCD commends HUD for its receptivity to our report and for its willingness to disseminate the 

report to its regional offices and enforcement staff. Considering the highly critical nature of 

many of the report’s findings, this openness is particularly welcome. The task now is to bring 

about the improvement for which the report calls. 

a. ORGANIZATION OF THE ENFORCEMENT EFFORT 

HUD is responsible for enforcing three major civil rights laws: the Fair Housing Act of 1968100 

(which applies to the sale and rental of all public and most private housing), the Fair Housing 

Amendments Act of 1988101 (which adds “handicap” and familial status—the presence of 

children in the household—to the list of those protected against housing discrimination), and 

Section 504 of the Rehabilitation Act (which bars discrimination, including discrimination in 

housing, by recipients of federal financial assistance). Additionally, HUD has a role through 

Title II (public housing and certification of state building codes) and Title III (private sector) in 

enforcing the ADA. 

Primary responsibility for enforcement is vested in HUD’s Office of Fair Housing and Equal 

Opportunity (FHEO), but various cycles of reorganization, decentralization, and recentralization 

have occurred over the years. HUD also has an Office of Disability Policy, but its role in the 

enforcement process and its relationship to other units of the department are not entirely clear. 

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Enforcement resources budgeted for and committed to FHEO have declined steadily since 1989 

and stand at approximately half the levels of that year. 

b. COMPLAINT HANDLING AND CASE PROCESSING 

Because the Fair Housing Amendments Act (FHAA) and Section 504 differ in the procedures, 

jurisdictions, statutory time frames, and other variables applicable to their enforcement, some 

variation in complaint handling and case processing must be anticipated between the two laws. 

Recognizing this threshold problem, HUD has undertaken to prepare new informational materials 

for the public and for those involved in the housing industry aimed at clarifying the department’s 

jurisdiction and enforcement role. Although such information will be of value, any resultant 

increase in the number and quality of complaints filed may lead only to further frustration, 

alienation, and public distrust of the fair housing enforcement system unless accompanied by 

thoroughgoing reforms in the ways HUD processes, tracks, resolves, and, where appropriate, 

refers complaints. 

The levels of this lack of confidence that Reconstructing Fair Housing revealed are not difficult 

to understand in light of the underlying data. The average age-of-case at disposition had 

mushroomed to 497 days, nearly five times the 100-day benchmark period fixed by Congress. 

Even when cases were concluded by HUD, few ended in findings of “cause” and fewer still in 

any adjudication or enforcement action being taken. 

By 1999, after having become the fastest growing complaint category, disability discrimination 

complaints, representing 42 percent of all complaints received, came to constitute the most 

frequent type of complaint filed with the department. Yet, HUD lacked the most basic 

mechanisms for disseminating legal or other guidance to its enforcement personnel, had no 

system for informing staff of best practices in case investigation, and had even failed to apply 

some of the investigative and management tools developed in the FHAA area to its work under 

Section 504. Finally, state and local fair housing enforcement agencies, supported under HUD’s 

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Fair Housing Assistance Program (FHAP), actually resolved and disposed of cases more quickly 

than the department did. 

c. FUNDING 

In connection with efforts to upgrade HUD’s fair housing enforcement, the department requested 

an increase in funding for fair housing and equal opportunity enforcement in its FY 2002 budget 

request. Congress did not include these additional funds in the HUD budget appropriation. 

Observers report that, pending improvements in other long-standing management deficiencies 

within the department, Congress is disinclined to grant such increases. 

Whereas NCD understands that the means available for Congress to express its disapproval of 

any executive branch agency are relatively few, with budgets being among the chief means for 

enforcing its wishes, we regret that people with disabilities and other groups who look to fair 

housing enforcement as a tool for protecting their rights should be held hostage to problems that 

they did not create and certainly cannot solve. Especially in light of the data collected in 

Reconstructing Fair Housing concerning declines in funding for enforcement during the 1990s, 

NCD hopes that the Administration will continue to seek funding for meaningful increases in fair 

housing enforcement, either through a supplemental budget request or through the achievement 

of savings in other HUD programs that could free up funds for reallocation to the department’s 

equal opportunity work. 

Another area in which funding shortages may have played a critical role in program 

underperformance is that of technical assistance. HUD’s fair housing initiatives program (FHIP), 

for example, is designed to assist state, local, and private fair housing agencies as well as 

advocates. But Reconstructing Fair Housing finds that this program suffers from many 

problems, including underfunding, lack of monitoring, and poor performance. Although the 

potential value of this program for the expansion of fair housing resources in the community or 

for the education of the public and the building industry about fair housing and accessibility 

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cannot be known with certainty, our growing recognition of the limits on the power and the role 

of the Federal Government require that such efforts as FHIP be given every chance to succeed. 

Accordingly, NCD recommends that any review of the levels and allocation of HUD funding take 

the needs and importance of such programs as FHIP and the related FHAP (Fair Housing 

Assistance Program) fully into account. 

d. ENFORCEMENT 

Whether as a response to NCD’S Reconstructing Fair Housing report or independently of it, the 

Olmstead implementation report devotes considerable attention to plans by HUD and the 

Department of Justice (DOJ) to step up enforcement efforts, including coordination in the referral 

of cases by HUD to the DOJ for prosecution and litigation where appropriate. To that end, the 

DOJ indicates its intent to meet with HUD on a quarterly basis, and the two agencies express an 

intent to monitor and use guidelines for selecting cases that are appropriate for such referrals. 

But whereas structuring of the referral relationship in this fashion (however it may be that DOJ 

postulates no comparably specific schedule of contacts for fostering its referral relationships with 

other agencies) clearly represents an important step forward in fair housing enforcement, NCD 

notes a number of anomalies in the Department of Health and Human Services (HHS) Olmstead 

report’s description of these proposed new efforts. Most notable in this regard is the specification 

of entities to be targeted for enforcement. In several iterations of its plans in this regard, HUD 

clearly places a focus on those who design, fund, and build housing, speaking of architects, 

engineers, and similar categories as its objects of proposed enforcement. These groups fall 

mostly on what we may call the production end of housing. When it comes to what we may call 

the retail end of the process, HUD is not specific or expansive about the targets of its 

enforcement. With the exception of public housing authorities, the HUD plans described in the 

Olmstead report appear to make no reference to the variety of individuals and institutions 

involved in the sale, rental, or management of private housing. To be sure, HUD does indicate its 

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intentions to revive its fair housing testing program, which could address these sectors of the 

housing industry. 

By contrast, the DOJ, for its part, does make reference to people who manage rental properties as 

an appropriate enforcement category, but even the DOJ, insofar as the Olmstead report 

summarizes its intentions, appears to make no reference to real estate brokers, mortgage lenders, 

or others involved in the buying and selling of homes. If, as we hope, this omission is merely a 

function of editing for space, it is of no significance. But if it reflects the enforcement priorities 

of the DOJ in this area, then it is especially regrettable given the concerns about low home 

ownership levels among people with disabilities noted above. 

e. AGED CASES 

Because of chronic delays in case processing noted above, HUD has a large backlog of aging fair 

housing cases. How to deal with that backlog is a question of great importance. In a recent letter 

to the HUD secretary, NCD cautioned against solving the problem by simply dismissing or 

otherwise purging the oldest cases.

102 NCD points out that whereas justice delayed is justice 

denied, dismissal of cases solely on the basis of their age is arbitrary and only adds further 

injustice to that which is inherent in delay. 

f. ACCESSIBILITY SURVEY 

The rules governing the construction and renovation of housing are part of the fabric of fair 

housing. Yet, because of differences in the requirements among civil rights statutes, and perhaps 

owing in part to the erratic nature of HUD’s enforcement from time to time and region to region, 

HUD has undertaken to help remedy this problem through the development and dissemination of 

informational resources, as noted above. In addition, to give the real estate building and 

management communities the clearest possible guidance on what the law expects of them when 

they build or renovate housing and to give people with disabilities or other interested persons a 

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chance to comment on the current codes implementing the ADA and related accessibility laws, 

HUD has commissioned a survey on accessibility needs.103 In the conduct of this survey, as in all 

its other deliberations concerning the definition of compliance with the ADA in housing, 

concerning the standards by which compliance with Section 504 will be measured, concerning 

any further attempts at model code creation in which the department may become involved, and 

concerning the certifiability of state building codes as compliant with ADA standards, HUD 

should remember that we confront new accessibility issues today that did not exist when the 

ADA and its implementing regulations were written. 

One of the most striking examples of such emerging issues involves the building or renovation of 

homes with central heating and air-conditioning or with built-in kitchen appliances that are 

inaccessible to persons who are blind or have other disabilities of reading or even for people who 

lack the motor function to align the various pointers and dials or to respond quickly enough to 

moving digital displays. The time was when people who could not see the dials and settings on 

their thermostats or kitchen appliances could affix braille or large-print labels to the controls. 

Many public utilities and some appliance manufacturers offer templates for these purposes. But 

the digital displays and touch-panel controls that are used in modern design do not lend 

themselves to being made accessible by any of these means. 

If the thermostat or other furnace controls in a new home were located so high on a wall as to be 

unreachable by a person using a wheelchair, we would have no problem in deeming those 

controls, and therefore that home, inaccessible. Apart from any questions of comfort or 

convenience, such a design would pose real risk to health and safety, including even the risk of 

asphyxia or, in some climates, of harm through cold or heat. Yet, when, because of the failure to 

implement readily achievable design features, people who are blind are subjected to the same 

risks, the law thus far appears to take no notice and to manifest little concern. 

Inexpensive technology exists for providing audio or tactile output for thermostats, timers, and 

oven and refrigerator controls, but it is not technology that can be retrofitted. It must be 

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incorporated into the original design. No survey of accessibility concerns, and certainly no 

revision or updating of ADA design requirements, can be regarded as adequate or complete if it 

does not take account of this growing accessibility barrier. 

HUD should immediately begin inquiries necessary to issue regulations that will incorporate 

accessibility of air control, environmental control, and built-in appliances into the cannon of 

legally required measures. HUD should evaluate its legal authority to do this under all the civil 

rights statutes it administers. If it determines itself to lack authority to require this form of 

accessibility under any of the applicable laws, the Administration should consult with the 

disability community and the Access Board to develop a legislative strategy to allow such 

protections to be added. If HUD finds it has the authority to act under the ADA, it should 

promptly undertake the inquiries and information-gathering necessary to do so, without waiting 

for legislation to give it parallel authority under the other fair housing statutes it enforces. 

Given the small cost and little difficulty of the measures that developers, architects, and builders 

need to take in order to prevent these forms of inaccessibility from occurring, no justification 

should exist for failing to take these simple measures that would enhance the health, safety, and 

comfort of our citizens with visual impairments, including many elderly persons whose prospects 

for age-associated vision loss and mobility impairment are high. 

g. VISITABILITY 

In 2000, HUD proposed to increase the number of new-construction housing units available to 

persons with disabilities by awarding bonus points for developers who build structures that 

include “visitability” by people with disabilities. Visitability involves the incorporation of a 

number of accessibility features that make it possible for people with disabilities to enter, 

function reasonably within, and remain in dwelling units, whether or not those units have been 

specifically designed or designated for occupancy by people with disabilities. 

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During 2001, Vermont became the first state to add visitability to its state building code. 

Relating to such matters as the availability of at least one step-free entrance, the width of 

doorways, the design of a bathroom, and some other matters, visitability is important not only for 

the possibilities of social and professional interaction it creates but also for the elimination of 

artificial and destructive distinctions between housing built for people with disabilities and 

housing built for everybody else. NCD strongly supports state and federal visitability initiatives 

and recommends that HUD take the steps necessary to make visitability an element of federal 

policy with respect to all new and renovated housing in our nation. 

2. HOUSING SUPPLY 

Although vigorous enforcement of antidiscrimination laws in the short run and comparably 

vigorous implementation of accessible design requirements in the long run can contribute 

significantly to the supply of available and affordable housing, these laws cannot by themselves 

create the supply of housing that we need. Other measures designed to expand the accessible 

housing stock and aimed at making such housing affordable are necessary as well. In this regard, 

several measures commend themselves to the attention of HUD, Congress, and the general 

public. 

a. VOUCHERS 

Changes in law that increased investment in “elderly only” buildings ironically resulted in a 

decline of available housing for people with disabilities. To help rebalance the situation, funding 

for Section 8 rental housing vouchers was increased in 2001, but increases in rental housing 

prices caused by the overall supply-and-demand equation in our nation have combined with a 

shortage of vouchers to pose growing difficulties for those who need this sort of assistance. 

Realizing that vouchers represent at best only a partial and temporary solution to the problem, 

NCD nevertheless recommends that their use and availability be maximized and rationalized 

during the time required for other, longer-term measures to begin taking effect. 

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b. INTERIM STRATEGIES 

Whereas increases in the number and the value of Section 8 vouchers, together with some 

changes in the rules to which landlords who participate in the Section 8 program must subscribe, 

would help to ease the shortage, the most meaningful long-term answers continue to lie in 

increasing the accessible housing stock of our nation and of course the resources of people with 

disabilities through work and other measures of integration into the mainstream economy. The 

tax code offers several strategies for increasing the supply (and hence the affordability) of 

accessible housing. Three measures can be recommended for further study here. The first is the 

enactment of an accessible housing credit, modeled on the low-income housing credit. The 

second is to expand the architectural barrier removal deduction so that it is available not only to 

businesses but also to the owners of single- or multiple-dwelling residential properties for the 

removal of architectural barriers, meaning the addition or incorporation of accessibility into 

existing buildings. The third tax strategy, which would need to be implemented prospectively, 

ideally going into effect three to five years after enactment, is restriction of the tax advantages, 

including the deductibility of home mortgage interest and real estate taxes, in connection with 

newly built or substantially renovated residential property that does not meet accessibility 

standards prescribed by law. 

Beyond such tax law refinements as these, several other strategies also recommend themselves, 

two of which are noted here. The first begins with the assumption that more people would 

request or insist on accessibility in their purchase of homes if they knew about the issue and 

knew what accessibility meant. Both these goals could be hastened by revising the contents of 

federally required disclosure statements so they would be required to include information on the 

home’s degree of accessibility, according to the applicable legal standards. State home-sales 

disclosure requirements should likewise be revised to the same effect. Nothing in the disclosure 

process would require that the home be accessible, but buyers have a right to know whether and 

to what extent it is, and representations concerning accessibility, once made, should be regarded 

as material to the transaction for all subsequent legal purposes. 

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The second strategy in this connection is the Community Reinvestment Act (CRA). The CRA 

should be revived and amended to clarify that investments in community-based accessible 

housing represent the type of activity the law is intended to encourage. 

3. HOME OWNERSHIP 

Owning a home of one’s own is part of the American dream, no less so for people with 

disabilities than for anyone else. Yet, despite the gains made by Americans with disabilities over 

the past generation in many areas of life, home ownership continues to be massively out of reach. 

As mentioned, statistics released by HUD in October 2000 indicated historically high home 

ownership rates among all categories of Americans. Even families with incomes below the 

median registered considerable gains in this area. For members of minority groups, the home 

ownership rate stood at just higher than 48 percent. Considering this level still to be too low, 

HUD indicated that bringing the home ownership for Americans of minority backgrounds above 

50 percent was one of its goals. 

So Americans from all groups were attaining this embodiment of the American dream in rising 

and record numbers, except, that is, Americans with disabilities. For people with disabilities, the 

rate of home ownership was dismally low. HUD has not, so far as is known, expressed either 

outrage over this figure or any intention to prioritize the effort to do something about it. 

Some may say that because of the strong association between disability and low income, low 

rates of home ownership among people with disabilities are in no way surprising. They would 

ask, in effect, “What do you expect?” The problem is not that simple, as evidenced by the 

reported increases in home ownership among persons of low and moderate income generally, and 

among the often economically disadvantaged group comprising households headed by women. 

In addition to the inherent barrier created by low income, restrictive Supplemental Security 

Income (SSI) regulations and provisions governing other programs prohibit recipients of benefits 

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under these programs from accumulating enough savings to afford the down payment, closing 

costs, or reasonable maintenance, taxes, and repairs associated with home purchase and 

ownership. Medicaid ordinarily allows people to keep their homes, which is particularly valuable 

for elderly persons, but its income and resource eligibility rules also work to prevent people from 

buying homes in the first place. 

Precedents for how to overcome this barrier can be found in SSI’s income and resources 

disregards for funds used in Social Security plans to achieve self-support and in such 

experimental vehicles as medical savings accounts (MSAs). NCD proposes a pilot demonstration 

to be conducted under the authority of the Social Security Administration (SSA) whereby SSI or 

Medicaid recipients would be allowed to establish home ownership accounts that could be used 

to accumulate funds for down payments, closings, and reasonable maintenance and that would 

not be subject to “countability” for purposes of the income and resource limitations applicable to 

these and other means-tested programs. 

Government loan guarantee programs, including Fair Housing Amendment (FHA)-guaranteed 

and Department of Veterans Affairs (VA) loans, are one way of reducing these barriers. Existing 

outreach programs should be examined and new targeting efforts undertaken to provide loan 

guarantees for minimal down payments to persons with disabilities. Efforts should also be 

undertaken to ensure that the FHA and VA approval processes are fully accessible to individuals 

with disabilities. Accordingly, NCD recommends that the panoply of federal housing loan 

guarantees be reviewed for accessibility, for barriers, and for models that could allow 

information and assistance to be targeted more effectively to persons with disabilities. 

During the first session of the 107th Congress, a number of bills were introduced to facilitate 

home ownership by public safety officers and teachers by reducing down payment requirements, 

by increasing the availability of federal loan guarantees, and by other means.104 Congress should 

direct attention, initially on a pilot/experimental basis, to whether a similar approach on behalf of 

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gainfully employed individuals with disabilities could increase levels of home ownership among 

this population. 

Another area of possible government action, and one that HUD has indicated it does have under 

consideration, involves the modification of the rules governing Section 811 Tenant Assistance to 

allow these resources to be used for home ownership as well as for rental. NCD recommends that 

HUD pursue these efforts vigorously, including proposing necessary legislation to Congress if 

that is required to make program expansion along these lines possible. But one crucial caveat 

must be emphasized here. Owing to the extremely limited availability of rental housing voucher 

and other subsidy funds under current law and budgetary conditions, any such use of Section 811 

funds should be undertaken only in the context of assurances that it will not place further burdens 

on, or create greater competition for, the limited rental housing resources now available. New 

funds only should be used to support this home ownership initiative. 

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Chapter 10 


Transportation


1. AIR TRAVEL 

Nothing has changed more dramatically and irrevocably in the past year than the way we travel 

by air and the way we experience and think about that travel. Inconveniences and delays that 

might once have provoked a storm of protest are now tolerated, even welcomed, by passengers, 

who recognize the imperatives of safety and security. But within the framework of concerns 

shared by all, many transportation issues unrelated to security continue to exist, including issues 

relating to the ways air carriers and airport operators treat, accommodate, and provide services to 

passengers with disabilities. 

In March 2000, Congress enacted the Wendell H. Ford Aviation Investment and Reform Act for 

the 21st Century (AIR-21),105 which contains important changes to the Federal Aviation Act and 

to the Air Carrier Access Act (ACAA) of 1986. These amendments strengthened in both laws the 

mandates of nondiscrimination against air travelers with disabilities. 

One provision of the amendments recommended by NCD was for foreign air carriers operating 

within the U.S. air transportation system to follow the same rules of nondiscrimination as 

domestic carriers. To implement this provision, AIR-21 called on the secretary of transportation 

to work with appropriate international organizations to establish higher international air 

transportation standards for accommodating air travelers with disabilities. 

In last year’s report, NCD urged the secretary of transportation to exercise leadership in bringing 

together representatives of key international aviation organizations to reach agreement on 

international standards of accommodation. During the intervening year, the importance of 

international cooperation among air carriers and governments has been demonstrated more 

clearly than ever before. Although NCD recognizes that unprecedented demands on the resources 

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of the Department of Transportation (DOT) over the past few months and into the foreseeable 

future must inevitably limit the attention the DOT can devote to any matters other than security, 

NCD is mindful of, and highly commends the department for, recent steps (that will be 

discussed) that show it has not lost sight of, or abandoned concern for, the issues affecting 

passengers with disabilities. 

NCD asks the department to indicate what progress has been made toward implementing the 

international agreements set forth in AIR-21 and, if the requisite bilateral or multinational 

agreements have not been negotiated or implemented, to indicate its best sense of what the 

prospects are for doing so in the next year and what, if any, further resources or legislative 

support would be of assistance to it in pursuing and completing these policy objectives. 

The AIR-21 amendments required the secretary of transportation to investigate each complaint of 

an ACAA violation and increased the penalty for violation from $1,100 to a maximum of 

$10,000 for each offense. AIR-21 also required the secretary of transportation to publish 

disability-related complaint data in a manner comparable to other consumer complaint data 

compiled by the department, to regularly review all complaints received by air carriers alleging 

discrimination on the basis of disability, and to report annually to Congress on the results of such 

review. To support greater compliance, the secretary was instructed by the statute to work with 

the DOJ, the Architectural and Transportation Barriers Compliance Board (Access Board), and 

NCD to develop a technical assistance plan and make materials available to individuals and 

entities with rights and responsibilities under the law. 

NCD commends the DOT for the steps it has taken over the past year to fulfill the letter and the 

spirit of these amendments. In particular, we note the outreach efforts undertaken by the DOT to 

gather information from travelers with disabilities concerning problems they face. Additionally, 

inclusion of air travelers with disabilities in the Air Traveler Customer Survey was withdrawn 

pursuant to an Office of Management and Budget (OMB) directive. 

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Bearing in mind that the Air Traveler Customer Survey was undertaken as an alternative to 

further regulation, NCD recognizes that compliance with the recommendations contained in the 

DOT inspector general’s report has been voluntary on the part of the airlines. NCD therefore asks 

the DOT to what extent domestic (and, if applicable, foreign) carriers have complied with these 

recommendations, particularly those dealing with the need for timely and appropriate assistance. 

If compliance (as judged by the ACAA complaints received or through other data sources) is 

deemed high, the industry is likewise to be complimented. But if the recommendations in such 

areas as passenger assistance and advisory committees have not been implemented, NCD 

recommends that the department consider regulatory measures as an adjunct to these voluntary 

efforts. 

NCD also appreciates the DOT’s issuance of a number of ACAA fact sheets, including the recent 

fact sheet reiterating and reinforcing the continued commitment to ACAA and the DOT’s 

recognition that ACAA and heightened security are entirely compatible and can and should 

coexist.106 

In spite of DOT’s timely fact sheet, anecdotal reports from air travelers with disabilities indicate 

that additional issuances, embodying more specific examples of how security and civil rights 

intersect, may be necessary if the air transportation system is to effectively unite ACAA with 

heightened security principles. Specific problems reported over the past few months include 

airport personnel regarding suspiciously or even threatening to remove or confiscate assistive 

devices, such as canes, even though they had been fully inspected and found to harbor no 

concealed contents; airport personnel refusing to assist passengers with visual or mobility 

impairments in recovering their belongings once they have come off the conveyor belt after 

going through screening, and refusing to tell such passengers, when their bags could not be found 

among those that had come off the belt, that the bag had been taken aside for hand inspection; 

officials being unaware that escort or assistance personnel are permitted to accompany 

passengers with disabilities to and from their gates, and airports failing to make clear what the 

procedures for obtaining such permission are; officials refusing to believe that service animals 

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are entitled to carriage in the passenger cabin with the passenger; officials refusing to offer 

various kinds of needed assistance except on arbitrary and humiliating terms (such as refusing to 

drop off passengers with disabilities at restaurants but insisting that if their gates are not yet open 

they be taken to offices of one kind or another); and even screeners refusing to believe that 

electronic devices without monitors, such as braille or synthetic speech computers used by 

persons who are blind, really are computers. 

NCD believes that a further fact sheet or other authoritative guidance by the department dealing 

with these and other specific issues (including issues that may be highlighted by consumer 

complaints) and using examples drawn from reported experiences would go a long way toward 

making the principles of nondiscrimination clearer and more concrete and could accomplish a 

great deal toward achieving the goals of the earlier fact sheet. 

Depending on what further consumer feedback a review of consumer complaints reveals, 

additional steps to raise the visibility and strengthen the enforcement of ACAA are needed. The 

Federal Aviation Administration (FAA) should consider adding a module on ACAA to the 

training that airport security personnel will be receiving under the new airport security 

legislation. 

NCD also requests the DOT to report on the status of the other oversight and coordination 

initiatives mentioned above, again with a view to assessing their current status and immediate 

prospects, and to identify any additional resources, legislative support, or budgetary support that 

may be needed to carry them forward to successful completion 

NCD is pleased to have worked closely with the DOT in connection with its ACAA 

implementation and enforcement efforts, including in the development of the fact sheet noted 

above. NCD and the DOT are currently involved in a number of additional initiatives that are 

expected to bear fruit in 2002. These initiatives include efforts to develop policies through 

industry/government/disability community consensus on standards for accommodating 

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passengers using service animals and on the availability of onboard medical oxygen for 

passengers who need this resource. 

The mechanisms by which these initiatives have been advanced are in themselves important and 

worthy of broader use across the Federal Government. Several stakeholder forums and advisory 

groups have been created to bring representatives of the relevant constituencies, including people 

with disabilities, together and to develop consensus standards and statements on issues of 

concern. This approach should prove useful in a wide range of other regulatory, policymaking, 

and enforcement settings as a means of obtaining the best information and input and for ensuring 

the cooperation of all parties in the actions that result. 

One additional ACAA-related issue remains to be addressed. During 2002, airport security 

screening practices and personnel will be brought under the direct control of the Federal 

Government. A new Transportation Security Administration (TSA) within the DOT has been 

established to manage airport security. To the degree that the enabling legislation and regulations 

for this program create consumer complaint mechanisms, questions of the interface between 

these protections and those arising under ACAA once again emerge. The DOT should move 

quickly to clarify the responsibility of the TSA in relation to ACAA and should take steps to 

resolve any uncertainties that may arise through the overlap between, or through differences 

between, the parallel complaint mechanisms now in existence. 

2. ACCESSIBILITY OF INTERCITY BUSES 

Pursuant to the Transportation Equity for the 21st Century Act (TEA-21),107 the DOT has 

committed substantial multiyear resources to over-the-road bus (OTRB) accessibility. Last year, 

NCD enumerated these major commitments and commended the DOT for these initiatives. NCD 

recommends that the DOT report on the status of these initiatives and on whether its and 

Congress’s expectations for the accessibility of city-to-city fixed-route, rural, commuter, charter, 

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and tour bus services are likely to be met within the applicable time frames, given the current 

pace of progress. 

To the degree that bus operators receive capital and other federal assistance under these programs 

to meet accessibility requirements for their fleets and to satisfy related service requirements, 

NCD also recommends that the department report on the compliance by participating bus 

operators, transit companies, and public transit authorities with all applicable legal 

requirements bearing on vehicle accessibility and on the provision of reasonable accommodation 

to customers with disabilities. In particular, the department should report on the extent to which 

participating entities have put published procedures in place that describe their provision of 

necessary assistance and services to passengers with disabilities; the extent to which participating 

entities make these procedures known to customers; and the extent to which consumer feedback 

offers insight into the degree of compliance with these procedures in day-to-day operations. 

If such data are unavailable, the DOT should undertake to collect and publish such information, 

including through use of techniques for obtaining consumer feedback of the kind that have been 

so effectively used in the air transportation area. 

Even if the overall level of industry compliance with the goals and time frames of TEA-21 are 

regarded by the DOT as satisfactory, NCD strongly recommends that the department authorize 

and enter into no further voluntary compliance agreements (VCAs) with any carriers. The law is 

clear and by now well known. If carriers cannot comply, the law should be applied, and if 

carriers can comply, no justification exists for characterizing as voluntary what the law and 

regulations mandate, that is, enforcement action. 

3. DOT-DOJ COLLABORATION 

In its 1999-2000 status report, NCD commended the litigation efforts of the Department of 

Justice (DOJ) and urged it to initiate more intensive collaboration with the DOT to identify cases 

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of persistent noncompliance with transportation accessibility requirements warranting legal 

action against private bus operators, public transit authorities, and contract providers of service to 

public transit agencies. Based on the outcomes of such cases as James in Raleigh, NC, and 

Richardson108 in Steamboat Springs, CO, NCD recommends that the DOT and the DOJ report on 

the current status of the law with regard to the authority of the government to pursue remedies 

against bus operators who arguably discriminate against passengers with disabilities. 

Because settlements, consent decrees, or even court orders in transportation vehicle accessibility 

cases usually involve remedies that will be implemented over a number of years, NCD 

recommends that the DOJ and the DOT jointly develop a system for ongoing monitoring of 

respondent performance, so that departures from agreed-on or court-ordered terms and 

timetables can be promptly identified and rectified. 

4. NEW FREEDOM INITIATIVE TRANSPORTATION PROPOSALS 

As the DOT forges ahead with the implementation of TEA-21, the transportation-related 

requirements of Title II of the ADA, and other laws, it does so under changed circumstances 

resulting from the transportation initiatives contained in President Bush’s New Freedom Initiative 

(NFI). The DOT should be alert and responsive to the issues of coordination, complementarity, and 

continuity involved in continuing to implement existing policy while embracing the innovations, 

demonstration projects, funding priorities, and other features of the NFI. 

NFI includes major recognition of the role that barriers to accessible transportation play in the 

integration of persons with disabilities into society. Consistent with this awareness, the 

Administration’s FY 2002 budget proposal included $45 million for pilot transportation 

accessibility projects and $100 million for transportation improvement matching grants. These 

funds were not included in the budget adopted by Congress.109 NCD recommends that Congress 

reconsider these funding requests and give the DOT such authority and resources as it may need 

to implement these two new programs on an innovative and inclusive basis. 

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With respect to these and any other NFI proposals, NCD recommends that the DOT encourage 

both pilot and competitive matching grant program applications from the broadest range of 

eligible entities. It should be noted that programs are not a substitute for complying with ADA 

requirements. Beyond outreach to the broadest range of possible applicants, the DOT must 

endeavor to encourage the use of the widest possible variety of transportation modalities as well. 

To accomplish this, NCD also recommends that the DOT does not implement these programs in 

ways that limit them to automobile transportation initiatives, but seek and respond to initiatives 

that include the use of other transportation modes. Bearing in mind that different regions of the 

country and many communities make use of commuter rail, light rail, inland watercraft, and even 

subways as elements of their transportation strategy, the DOT should be receptive to proposals 

that attempt to bring innovation and improvement to all these modes of transit and, in so doing, 

should be maximally responsive to the needs and preferences of distinctive communities and 

local customs throughout our nation. 

In evaluating proposals under the NFI programs, the DOT should further be mindful that whereas 

physical inaccessibility of transportation vehicles has historically been the major barrier to 

transportation equity for persons with disabilities, it is by no means the only transportation barrier 

these citizens face. Virtually every disability subpopulation has and continues to face obstacles to 

safe and reliable transportation, ranging from the inaccessibility of print-only maps, timetables, 

and signage to persons with visual impairments to the inaccessibility of announced-only delay or 

detour information to people with hearing disabilities to the continuing inaccessibility of many 

fare and ticket machines to persons with visual, cognitive, or motor impairments. 

5. RESEARCH AND TECHNOLOGICAL INNOVATION 

In many ways, transportation has changed less over the past fifty years than most other aspects of 

our lives. Nothing equivalent to the Internet for how we move information has emerged to 

revolutionize the way we move people. Nevertheless, recent advances in transportation 

technology—ranging from the global positioning systems and other remote guidance and 

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tracking systems to new designs in energy-efficient, high-speed scooters—have created exciting 

possibilities for increasing accessibility and independence for a host of travelers with disabilities. 

New personal transportation vehicles, such as the Ginger, unveiled in December 2001, promise 

the long-delayed revolution in transportation, but by no means is it self-evident or automatic that 

these benefits and opportunities will be extended to Americans with disabilities. In order for such 

innovations to be responsive to the needs and concerns of people with disabilities, testing and 

evaluation efforts must be organized with a conscious intention to include people with 

disabilities in focus or experimental groups. 

For that reason, the DOT should undertake efforts in conjunction with the National Institute on 

Disability and Rehabilitation Research (NIDRR) or other suitable entities to facilitate the 

innovative use of all such personal transportation vehicles and devices by persons with various 

disabilities and to ensure that the results of such experimental use are made known to the 

manufacturers of all such technology in a timely fashion so these findings can be incorporated 

into the results of beta or other prototype field testing. On the basis of input from users with 

disabilities, it may prove possible to implement at early stages design enhancements that would 

be difficult or impossible to retrofit once large-scale distribution and use occur. 

6. PARATRANSIT 

Anecdotal reports continue to abound about problems in the design and delivery of paratransit 

services throughout the country. Such problems include disproportionate investment of program 

resources in cumbersome and lengthy eligibility determinations at the expense of service 

delivery; arbitrary limitations on service based on time, location, purpose of trip, or other 

variables; denial of service to persons who, although physically capable of boarding and 

disembarking from fixed-route transportation vehicles, cannot safely or reasonably get from their 

homes to and from the stopping places for such vehicles; refusal to carry personal assistants or 

other companions; refusal to carry service animals; insistence on certain kinds of wheelchairs or 

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other mobility aids; imposition of service priorities based on the purpose of the trip; poor training 

and high turnover of personnel; failure to keep scheduled appointments or imposition of 

unreasonable advance notice requirements for scheduling trips; and other matters. 

A particularly recurrent problem that calls for definitive guidance relates to the right of persons 

with visual disabilities to use paratransit services. Accounts from around the country indicate that 

while most systems recognize the eligibility of persons who are blind or have significant visual 

impairments, a large number of other transit systems take the view (apparently because the 

applicants in question can walk without difficulty) that this group of persons with disabilities is 

not eligible for paratransit services. 

The DOT should ensure effective oversight of paratransit services and meaningful opportunities 

for the resolution of problems and for the redress of grievances. This is particularly so because 

many of the problems reported appear to involve disregard for or ignorance of existing 

regulations. 

Similar to other components of the transportation system, paratransit services lend themselves to 

the kind of innovation contemplated by the NFI and other long-standing unfunded initiatives. In 

view of the widespread frustrations with paratransit services noted, the DOT must continue to 

monitor the system with vigilance, but the department must at the same time maintain the 

necessary flexibility to accommodate experimental projects, nontraditional providers, and new 

methods and technologies. If that is done, the best of existing paratransit practices and the 

promise of new approaches may be effectively merged and applied. 

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Chapter 11


Assistive Technology and Telecommunications


1. THE NEW FREEDOM INITIATIVE AND ASSISTIVE TECHNOLOGY 

The president’s New Freedom Initiative (NFI) places great emphasis on the development and 

deployment of assistive technology (AT). That emphasis includes major commitments to 

research through the National Institute on Disability and Rehabilitation Research (NIDRR), 

expansion of resources available for AT loans to individuals with disabilities under the 

Alternative Financing Program (AFP) of Title III of the Assistive Technology Act, and 

commitments to a number of innovative programs (such as use of technology to develop homebased entrepreneurship and employment opportunities), along with use of technology as a key 

element in the achievement of other policy goals (e.g., implementation of the Olmstead 

decision). NCD welcomes these initiatives and recommends that the Administration continue 

taking the steps needed to ensure their fulfillment, including coordination of efforts among 

agencies with overlapping jurisdiction, ongoing provision of technical assistance to states and 

other partners, and clarification of applicable income tax rules and of Social Security income 

and resources limitations in order to avoid possible work disincentives that could interfere with 

the success of employment-oriented activities. 

a. COORDINATION 

By coordination, we mean that the pro-AT efforts and activities of one program or agency should 

not be inadvertently undermined or negated by the policies or activities of another, especially 

when these barriers arise only as an incidental by-product of policies that were not developed 

with AT in mind. For example, the NFI proposes to increase home-based work opportunities for 

people with disabilities by, among other things, making the costs of computer equipment and 

telecommunications services provided to such persons tax deductible to the employers or other 

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third parties who furnish them. This is a promising proposal, but unless accompanied by changes 

in the rules governing a number of benefit programs, as well as changes in the tax law, it could 

actually result in a net reduction in the services available to persons with some of the most 

significant disabilities. 

Unless the rules for Supplemental Security Income (SSI) and Social Security Disability 

Insurance (SSDI) are simultaneously modified, small increases in income could result in more 

than offsetting curtailment of payments under these programs. Still worse, the services linked to 

these programs (including in-home Medicaid home health care or other services, even services 

necessary to permit the individual with a significant disability to perform gainful work at home) 

could also be jeopardized. 

The unintended consequences of any policy initiative cannot readily be anticipated, but attention 

to coordination issues is required in the planning stage if such unforeseen barriers are to be fully 

avoided. NCD is pleased at early indications that the Administration understands this point. The 

recently released preliminary report outlining progress under President Bush’s June 2001 

Olmstead Executive Order contains a section on AT and demonstrates a recognition that 

meaningful progress in removing barriers to its use requires the coordinated and concerted efforts 

of a number of agencies and programs. 

NCD believes that either the Interagency Committee on Disability Research (ICDR), which the 

Administration has proposed to reinvigorate with increased funding, or the newer Interagency 

Committee for Community Living (ICCL), which has not yet been made permanent, could serve 

as the forum for identifying and addressing these and the myriad other coordination issues that 

will arise in implementing the Administration’s creative AT programs and strategies. 

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b. ALTERNATIVE FINANCING PROGRAM 

The Assistive Technology Alternative Financing Program (AFP) has been widely hailed as a 

means by which people with disabilities can take greater control of their own lives. The FY 2002 

federal budget contemplates large increases for this program, which operates under Title III of 

the Assistive Technology Act and, though authorized as early as 1994, was not funded until two 

years ago. Certain provisions of the current law threaten the growth and success of the AFP 

program, however. 

AFP requires the provision of state matching funds as a condition for receipt of federal program 

funds. As states face steep fall-offs in their tax revenues and deteriorating budgetary situations, 

the feasibility of providing matching funds at expanded levels may be called into question. 

Whereas the current match requirement of $1 in state money to every $3 in federal money is not 

out of line with other federal-state programs, the growth of the program is nevertheless likely to 

be somewhat hindered because new money is required and in-kind contributions, including from 

private sector partners, may not qualify for treatment as a match under the current rules.110 

Accordingly, NCD recommends that, at least until state tax revenues begin to climb again, the 

matching fund requirements of Title III be suspended or be modified to broaden the kinds of 

participation that will be acceptable to meet the match. 

c. RESEARCH 

The NFI includes a significant commitment to AT research. In implementing this commitment, 

the Administration should make certain that the distinctness of, and the relationship between, AT 

and universal design are recognized and honored. Over the years, NIDRR has demonstrated a 

farsighted grasp of the importance of universal design through its sponsorship of conferences on 

the subject and by its support, pursuant to competitive grant award processes, of a number of 

rehabilitation engineering and research centers (RERCs) having universal or accessible design 

work as their primary objective. 

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Research priorities should therefore include not only the development of new devices but also 

such matters as the ability and flexibility of the AT service system to accommodate universally 

or accessibly designed products that are not expressly or uniquely designed for people with 

disabilities but that have features allowing them to be used by everyone, including people with 

disabilities (e.g., cell phones that allow hands-free operation); research into the implications for 

the economy of accessible design (in terms of the costs and benefits of up-front investment in 

accessible design of products and in terms of the proper allocation of such costs and benefits); 

research, based on the findings of the current Government Accounting Office (GAO) study,111 to 

be conducted in conjunction with the Treasury into the viability of tax credits or other incentive 

measures to stimulate the design, production, and marketing of accessibly and universally 

designed products and services; and research into the implications for learning and for 

assimilation of information when it is enriched by presentation in accessible audio and video 

formats. 

d. CARRYOVER INITIATIVES 

During 2000, the Clinton Administration launched a number of AT-related initiatives. Although 

several of these have been effectively merged into, or superseded by, NFI initiatives, at least one 

is worthy of further exploration. The previous Administration directed the secretary of the 

Department of Health and Human Services (HHS) to convene an interagency task force on health 

care coverage of AT.112 This task force was charged to study the role that Medicare and Medicaid 

currently play and should play in the coverage of AT devices. The work of the task force was 

intended to provide a framework for future Medicare and Medicaid coverage decisions that 

complement overall efforts to promote employment opportunities for people with disabilities. In 

the executive memorandum setting it up, the task force was directed to conduct a study on the 

role of Medicare and Medicaid in covering AT devices that encourage employment of 

individuals with disabilities. With these two health insurance programs receiving attention and 

recognized to be in need of modernization and reform, consideration of the role they should play 

in AT is all the more timely. 

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The recent Olmstead report issued by HHS includes some promising views and intentions 

regarding AT and identifies a number of barriers to AT provision and use in current law. The 

report does not indicate, however, any Administration plans to systematically evaluate the 

current and projected role of these two major health insurance programs as sources of funding for 

AT. Accordingly, NCD recommends that the Administration add to its agenda a comprehensive 

study of what role the health care system should play in the provision, funding, and development 

of AT. 

2. IMPLEMENTATION OF SECTION 508 

Section 508 of the Rehabilitation Act of 1998 (technically, Section 508 of the Workforce 

Investment Act [WIA] of 1998, because the Rehabilitation Act amendments were adopted as part 

of WIA) has been praised as the most far-reaching universal design statute ever enacted. This law 

provides that in their purchase and use of electronic and information technology (E&IT), federal 

agencies must adhere to the principles of “accessibility” to persons with disabilities. The law’s 

purpose is to ensure that access to such technology—including computers, photocopiers, audiovisual training materials, and Web sites, to name some of the major types—is equal for federal 

employees and members of the public with and without disabilities. In those cases in which 

achievement of accessibility constitutes an undue burden, the agencies are not required to obtain 

accessible technology, but they are still required to develop alternative means for making 

information available to government employees or members of the public with disabilities. 

As important as these provisions are in their own right, the greatest significance of Section 508 

may lie in its across-the-board impact on the design practices of industry. If one of the largest 

customers for E&IT demands accessible products, efficiency will dictate that all such products 

are designed with accessibility principles in mind. Achievement of this long-term goal of 

reorienting mainstream design practices toward accessibility depends on the success of the 

Federal Government in implementing the new requirements. If Section 508 is not enforced, or 

proves unworkable or too costly, its leverage value will be lost. If the law proves effective and is 

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followed, the communications and information landscape can become an even greater force for 

democracy and participation than it already is. 

a. IMPLEMENTATION 

During the past year, important steps in the transformation of Section 508 from a statute to a part 

of daily life in the federal sector have taken place. On December 20, 2000, the Access Board 

issued final guidelines defining the key terms and requirements of the statute and 

operationalizing its requirements.

113 Subsequently, as required by the section, the Federal 

Acquisition Regulation Council (FARC) added regulations to the Federal Acquisitions 

Regulation (FAR) specifying how federal procurement officials in all covered executive branch 

agencies should apply the law.114 

Section 508 has been fully in effect—both its civil rights and remedies provisions, which allow 

those alleging its violation to bring complaints, or even to file suit, against the offending federal 

agency, and its procedural provisions, which are those embodied in the FAR—since late June 

2001. The law appears to have proceeded largely without incident. But whereas the earthquake 

that so many predicted—some hopefully and some with trepidation—has not occurred, several 

serious problems in the administration of the law have already come to light. Although no critical 

mass of experience or wealth of data under the statute yet exists, informally reported experience 

suggests a pattern that needs to be addressed if the law is to yield the full benefit its supporters 

expect. 

The principal questions that have emerged thus far relate to the lack of adequate compliance 

monitoring. The DOJ is vested with responsibility under the law to make biannual reports to the 

president and Congress on the implementation of Section 508. To that end, the DOJ has on the 

one hand undertaken biannually to measure the performance of federal agencies in relation to the 

accessibility of their public and employee Web sites. On the other hand, no monitoring 

procedures are in place to determine the frequency with which agencies invoke the “undue 

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burden” defense or any of the several other exceptions to compliance authorized in the FAR. 

Nor are there any auditing procedures in place for evaluating the soundness of such undue burden 

claims by agencies. 

Federal agencies are required to document the reasons for claiming undue burden with respect to 

any procurement or component of a procurement for which the claim is made, but no one is 

charged by the law to collect, review, or evaluate these claims. Anticipating this problem, NCD 

recommended in its June 2001 report The Accessible Future115 that the General Services 

Administration (GSA) take measures to fill this potentially critical information vacuum. 

Accordingly, NCD now reiterates its recommendation that the Administration institute 

procedures for collecting and tracking these undue burden claims. 

Additionally, because experience will reveal other unforeseen problems in the implementation of 

this law, the Administration needs to take measures to ensure its timely awareness of all 

emerging issues. To that end, the Administration should issue a Request for Information (RFI) to 

agency chief information officers (CIOs) and other interested parties, seeking comprehensive 

information on all problems, unforeseen vagaries, or subsisting uncertainties that have arisen thus 

far in the implementation of Section 508. 

Because the RFI can present only a snapshot of 508 implementation at a particular moment in time, 

other means must be found to maintain the necessary level of oversight and feedback. The required 

DOJ biannual reports, if expanded in scope, may represent one source for keeping implementation 

information current. Accordingly, NCD recommends that information on implementation and 

compliance issues be included in the DOJ’s reports to the president and Congress. 

b. TECHNICAL ASSISTANCE AND OUTREACH 

The GSA launched the Federal Information Technology Accessibility Initiative (FITAI) to help 

federal agencies provide access to E&IT and to meet the requirements of Section 508. This 

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program—involving, among other things, a major Web site (http://www.section508.gov) serving 

as a portal to a variety of 508-related information and resources—supports, through outreach and 

information sharing, the Federal Government’s efforts to comply with the law. The government’s 

508 Web site also serves as a rich source of information for vendors wishing to sell to the 

government, for members of the public, and for other interested groups. One potential benefit of 

this ROI is the opportunity it would afford to learn from government information technology 

professionals, from vendors, and from consumers about how effective the www.section508.gov 

Web site has been in meeting their needs. 

In last year’s annual status report, NCD also recommended that the GSA ensure that tools for 

measuring relative accessibility and for evaluating vendor accessibility claims be created, 

validated, adopted, or adapted for all covered forms of E&IT. A number of excellent, Web-based 

tools exist to help webmasters, CIOs, and consumers evaluate the accessibility of Web sites and 

offer guidance in Web site repair when shortcomings are disclosed.116 As such, it seems fair to 

say that today, though there will always be new situations and though some subjectivity 

necessarily goes into the determination of how to make particular Web-based information 

accessible, we know how to make Web sites accessible. 

In the long run though, Web site accessibility should better be seen as a starting point than as an 

endpoint. As one recent study shows, accessibility does not necessarily denote a high degree of 

usability, and people with disabilities often require more time to complete Web-based tasks than 

other users do.117 Evaluation tools, therefore, should be developed that concern themselves not 

only with the technical fulfillment of accessibility standards, as important as these are, but also 

with usability, defined in terms of the relative difficulty, accuracy, and time required for the 

accessing of Web-based information or the performance by persons with and without disabilities 

of interactive tasks on the Web. 

When it comes to the variety of equipment and devices, hardware, and operating systems and 

applications software subsumed under Section 508, the problems associated with validating 

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vendor claims, with comparing the relative accessibility of competing products that approach 

accessibility in different ways, with “scoring” products in the competitive bidding process in 

which each meets some accessibility requirements but fails to satisfy others, and with testing 

equipment under realistic and challenging conditions before its acceptance—all these present 

difficult and as yet unresolved questions. A number of efforts are under way to develop and 

validate protocols and templates for equipment testing and for developing objective and 

replicable scoring techniques to be used by procurement officials. Pending the widespread 

availability of suitable instruments, NCD recommends that, at the very least, rigorous testing by 

federal agencies of devices under realistic and real-time conditions is an indispensable element 

of the 508 process. Though holding out no guarantees, federal agencies should require such 

testing before the acceptance of proffered E&IT. 

If prototypes are tested under the conditions of their intended use, in the performance of the tasks 

for which they were procured, and in the networks and configurations in which they will need to 

operate, significant light can be shed on their accessibility and usability. Wherever possible, 

agencies should use the services of employees or consultants with disabilities who have 

knowledge of the equipment to help conduct these tests. 

c. A TECHNOLOGY-BASED CIVIL RIGHT 

Unlike Section 255 of the Federal Communications Act (discussed later), which does not include 

any private right for an individual to sue for its violation, Section 508 confers a right for federal 

employees or members of the public to file a civil rights complaint or to bring suit for its 

violation. The implications of this important new civil rights protection are discussed in detail in 

NCD’s Accessible Future report. Here we mean only to suggest that the DOJ, in its biannual 

report, should track such complaints or suits. Likely, the number and types of any such suits will 

provide important insight into how well Section 508 is working in the field and will alert the 

Administration and Congress to any reforms or updates that may be needed. 

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In this connection, a fascinating conundrum must be noted. Owing to its role in collecting data 

about Section 508 compliance for its reports to the president and Congress, the DOJ is likely to 

have far more current information and firsthand knowledge about agencies’ implementation of 

Section 508 than it typically possesses about their implementation of most laws. In some cases, 

as a result of information supplied to it by the agencies or through its own independent 

monitoring of a random sample of Web sites, the DOJ may have actual knowledge that a 

particular procurement or agency is substantially out of compliance with the law. At the same 

time, if a court action is brought against a federal agency for the violation of Section 508, the 

DOJ’s responsibility is to defend that agency in court. 

Under these circumstances, it would be useful for the DOJ to indicate to the federal agencies and 

to the public, both of which it ultimately represents, how it intends to handle these situations 

should they arise. Does the DOJ believe its possession of such knowledge would give rise to a 

conflict of interest in its defense of federal agencies? Does the department believe itself to have 

an affirmative obligation to disclose such information on noncompliance, or does it regard this 

obligation as triggered only when it is specifically questioned or asked to produce relevant 

documents? Does the DOJ believe that, by reason of its institutional status, knowledge held by 

one unit cannot be imputed to other separate, walled-off units? 

d. TELECOMMUTING 

In its NFI, the Bush Administration favors the use of telecommuting for federal employees where 

possible, and this includes employees with disabilities. As it relates to Section 508 (and to the 

related requirements of Section 501 dealing with discrimination and equal opportunity in federal 

employment), implementation of telecommuting options for government workers with 

disabilities may present a number of issues. 

For telecommuting to work, in some cases it may prove necessary to install accessibility features 

at the employee’s home. Section 508 does not on its face contemplate the furnishing of access 

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peripherals or specialized software to individuals for private use away from federal facilities, but 

where the employee’s home becomes his or her place of work, logic and equality dictate that the 

necessary accommodations be provided. 

3. DISTANCE LEARNING 

Web-based education and distance learning have grown exponentially. Universities that would 

have looked disdainfully at the practice only a few years ago are now embracing it eagerly as a 

technique for attracting a broad range of busy students. During 2000, through a series of public 

hearings, the National Web-based Education Commission conducted an investigation of the key 

issues that surround the increasing use of the Internet for learning, including the necessity for 

ensuring that all learners have full and equal access to the capabilities of the Web. In December 

2000, the Commission issued a report of its findings from two years worth of hearings and 

e-testimony.118 

In last year’s annual report, NCD acknowledged the work of the commission, especially its focus 

on the policy issues of “access and equity.” NCD strongly encouraged Congress to use the 

commission’s report for the next few years as a roadmap to guide congressional activity in key 

areas, such as distance learning, technology development and transfer, Internet and Web-oriented 

research, and e-commerce, to name just a few. NCD now recommends that the Administration 

review the report, formally indicate its views concerning its findings and recommendations, and 

act to incorporate those recommendations in policy to the extent appropriate. 

4. THE E-RATE 

The Federal Communications Commission (FCC) administers the “e-rate” program, as it is 

known, which is a program designed to make Internet access and telecommunications services 

more affordable for schools and libraries. The e-rate does this by subsidizing the rate these 

institutions pay for such services, partly through rate concessions that are available to a broad 

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range of eligible institutions and partly through competitive grants. Although available to help 

schools and libraries generally, the e-rate program is structured so that the highest level of 

subsidy goes to institutions in urban or rural areas with high levels of poverty, as evidenced by 

such indicators as the number of children qualifying for the free school lunch program.119 

The e-rate program is perhaps the leading recent example of our nation’s commitment to 

universal service in the telecommunications sector. This commitment (originally to universal 

telephone service) goes back to the Federal Communications Act of 1934 and over the years 

resulted in the establishment of lifeline and other programs to ensure basic phone access to 

economically disadvantaged individuals as well as in policies that facilitated the expansion of 

telephone service throughout our country and helped equalize the disproportionate costs of 

bringing such service to remote rural areas. But the principle of universal service faces new and 

complex challenges in our time. By enacting the e-rate as part of the Telecommunications Act of 

1996, Congress and our nation expressed the view that this concept of universal service still has 

meaning in the age of the Internet. 

Given the intent of the program to target the greatest benefits to the poorest areas and 

individuals, and given the historical backdrop of universal access against which the program is 

set, there can be no question that the e-rate program was intended to benefit students and library 

patrons with disabilities, just as much as anyone else. Whereas the question has not yet been 

decided by any court, this history and interpretations by the DOJ and the FARC of other 

provisions of the section lead almost inescapably to the conclusion that the e-rate program is 

covered by Section 508. 

Nevertheless, application of this or other civil rights requirements on e-rate beneficiaries and 

grantees has thus far proved surprisingly difficult. For the first three years of the program’s 

operation, e-rate discounts valued at about $6 billion were awarded to schools and libraries 

without any explicit requirements or requiring any assurances from them that accessibility would 

be provided to the telecommunications services funded with e-rate monies for people (students 

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and library patrons) with disabilities. Eventually, meetings between NCD and the FCC in 2000 

resulted in the inclusion of a generic accessibility notice in e-rate applications. 

NCD expected that this was the first step in a process that would rapidly lead to revision of the 

FCC’s e-rate application form and Web site to incorporate specific requirements for assurances 

from schools and libraries that they will adhere to federal accessibility mandates. To the dismay 

of many, the additional regulatory notices and procedural steps necessary to make accessibility 

requirements explicitly applicable to e-rate subsidy recipients have not yet occurred. No 

measures designed to make accessibility a specific legal compliance issue or even to require 

assurances from recipient institutions regarding their awareness and intentions concerning 

accessibility have yet been taken. 

If, on the one hand, the FCC believes for any reason that it lacks legal authority to apply the 

requirements of Section 508 (or those of Section 504) to e-rate recipients, it should say so. Then 

it could join with advocates in seeking congressional action to endow it with the necessary 

jurisdiction. On the other hand, if the commission regards itself as possessing the requisite 

authority to promulgate such regulations, it should proceed to do so without further delay. There 

is no excuse in the year 2002 for those who receive public subsidies, through surcharges paid on 

telephone use by all, for the benefit of all, to make the benefits of universal access available only 

to some. As long as people with disabilities pay the surcharges that fund the e-rate, it is 

unthinkable that they or their children should be denied its benefits. 

5. SECTION 255 

Section 255 of the Federal Communications Act, as added to the law by the Telecommunications 

Act of 1996, requires that providers of telecommunications services (such as local and longdistance phone companies) and manufacturers of telecommunications equipment and customer 

premises equipment (CPE) must make their products and services “accessible to” and “usable 

by” individuals with disabilities where it is “readily achievable” to do so. Guidelines defining 

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and applying the concepts and provisions of the law were jointly developed by the Access Board 

and the FCC, and were adopted by the FCC as regulations.120 

Although we have only had about three years of experience implementing Section 255 and 

operating under the FCC’s 255 regulations, that experience, coupled with the emergence of new 

technologies, has revealed two key problems in the administration of the current law. Both 

problems are believed to be within the FCC’s power to correct, or at least to substantially 

influence, and both require urgent action if the goals of accessibility are to be attained. 

a. ENFORCEMENT 

The FCC has sole jurisdiction over enforcement of Section 255. No appeals from its decisions or 

lawsuits are permitted. The enforcement of the law lies solely within the commission’s control. 

For that reason, the commission’s enforcement practices and their results must be the subject of 

special scrutiny. 

As a basis for enforcement, the Access Board and the FCC undertook production of a periodic 

market monitoring report (MMR). This survey of telecommunications services and CPE 

accessibility was designed to identify areas of progress and areas of difficulty and to help the 

commission and industry focus resources in those product and service areas where progress 

toward accessibility was limited or slow. After being published once, the MMR has not been 

issued again. Because the MMR was widely believed to be a useful tool and because the FCC has 

not expressed any public dissatisfaction with the process of preparing it or with the results of its 

publication, the failure to update and maintain this resource is regrettable. 

NCD recommends that the FCC indicate whether it no longer believes the MMR to be a valuable 

information resource in its enforcement of Section 255 and, if it does believe the MMR to be 

inappropriate, to indicate how it proposes to gather broad-based compliance information. If the 

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commission regards the MMR as a viable tool, it should revive the regular publication of this 

report, in cooperation with the Access Board. 

A related issue concerns pattern-and-practice oversight. NCD is not aware of the exercise of any 

such oversight jurisdiction on the commission’s part. Rather, it appears that the commission 

relies almost entirely on consumer complaints as a basis for its enforcement of the law. This is an 

inadequate basis for exercising its statutory and exclusive responsibility. 

No studies are known to exist measuring the extent of consumer awareness of Section 255. 

Without evidence that the law is widely known or understood, complaints are likely to be 

relatively few in number. Moreover, such complaints are not necessarily representative either of 

the nature or the scope of accessibility and usability problems encountered by 

telecommunications users and customers with disabilities. 

As significant, the commission’s approach to complaint handling may further discourage 

recourse to the Section 255 complaint process by consumers with disabilities. On balance, the 

commission appears to favor complaint resolution by negotiation between the parties over 

adjudication or investigation by its own staff. The commission leaves it to the complainant, after 

contact with the respondent service provider or manufacturer, to indicate whether he or she is 

satisfied or dissatisfied with the resolution, and if the complainant is satisfied, the commission 

takes no further action. The commission is not known to have entered a finding against any 

respondent in a 255 case, and it has never made clear exactly what sanctions it would impose. 

Although reliance on the parties to settle complaints themselves is appropriate in many 

situations, it may not be the best strategy when the parties come to the table with such vastly 

unequal resources. Ordinary customers do not have the means for evaluating manufacturer claims 

that one or another access feature is “not readily achievable,” nor does the customer have the 

technical information or capacity to know whether, when a manufacturer or service provider 

claims that a requested accessibility feature is not readily achievable, this contention is accurate 

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or is based on full knowledge of the state of current technology and research. Finally, as is more 

and more the case, where accessibility and usability barriers result from the complex interaction 

between equipment and network components, isolated consumers have no authority to bring 

manufacturers and service providers together to determine how the responsibility for resolving 

problems can be most effectively allocated between them. 

Faced with these disparities of knowledge and power, and lacking active investigation or 

representation by the FCC, consumers are left in a position in which, as a practical matter, they 

must either accept whatever respondents offer or confront the likelihood of gaining no redress at 

all. How voluntary and how informed can complainant acquiescence really be under these 

circumstances? In many cases, such expression of satisfaction may result from just this 

perception or may at best mean nothing more than that a manufacturer or service provider was 

attentive and courteous. 

Although application of Section 255 to the facts of any complaint is a highly individualized 

matter, certain provisions of Section 255 can be enforced without reference to consumer 

satisfaction or complaints. For example, the law requires manufacturers and suppliers to make 

certain product information, manuals, and other relevant materials available in accessible formats 

on request. Provision must also be made—on the box or otherwise—to inform consumers of the 

availability of these accessible formats. The FCC could conduct random spot checks of products 

in stores to ascertain whether this is being done. 

Similarly, the law requires that companies covered by Section 255 designate points of contact for 

255-related issues. For this purpose, the commission has developed a list of covered companies 

and their designated 255 contacts. Once again, spot checks should likewise be conducted, 

through calls to technical support and customer services lines and through e-mails to the 

designated 255 company contact officials, to determine whether these assignments have been 

maintained, whether the names and contact numbers are accurate, and whether help desk 

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personnel who deal with the public are aware of 255 and know how to channel 255-related 

questions or calls to the named individual. 

Generally speaking, the FCC’s approach to enforcement of Section 255 can only be described as 

passive. If the customers the law was intended to enfranchise and the companies it was intended 

to guide could play on a level playing field, such an approach might be acceptable. Where the 

role of technical information and legal acumen create enormous disparities in their levels of 

knowledge about key legal and factual matters or in their ability to have any overview of industry 

practices, such an approach is tantamount to nonenforcement. If unchanged, this approach will 

amount to agency nullification of a major civil rights law. 

b. TELECOMMUNICATIONS VERSUS INFORMATION SERVICES 

It may come as a surprise to some, but under the law, the term “telecommunications services”


does not mean all the services provided to the public by phone companies or other


telecommunications services providers. Strictly speaking, the term applies only to those


traditionally regulated services that facilitate and carry voice communication from one point to


another. Similarly, the requirement of Section 255 that CPE be accessible and usable refers only


to those components of such equipment as are involved in the voice communication process.


Other services, ranging from e-mail to high-speed data transmission, are labeled “information


services” and are generally exempt from regulation.


Because of this distinction between categories of service and between the equipment items or


components used to facilitate and carry each of them, Section 255 is in danger of becoming


applicable to a progressively smaller and less relevant portion of the e-commerce, education, and


employment-related activity conducted over, or supported by, the communications networks of


our country. Section 255 is in jeopardy of becoming trivial and anachronistic,


unless something is done to make it applicable to the equipment and services that people more


and more depend on and use.121


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Recognizing the devastating potential of this situation, the FCC, in its regulations implementing 

Section 255, asserted the right to broaden the definition of covered telecommunications services 

to include a more realistic range of activities and functions. Through creation and use of an 

“adjunct-to-basic services” category,122 the FCC undertook to apply Section 255 to all the 

features and functions necessary to make and complete calls, including those that could be used 

for e-mail, fax, data ,and graphics transmission, as well as for the placing, transmission, and 

receiving of traditional voice calls. 

Subsequent to the implementation of these Section 255 regulations, the FCC has sought input 

from industry and the public regarding the need for further broadening the scope of Section 255 

in the information services arena.123 What the commission will do with the information received 

remains uncertain. 

NCD recommends that the FCC act quickly to apply Section 255 to those information services 

that have become critical and staple parts of America’s information society. To do less would be 

the equivalent of condemning Americans with disabilities to travel by horse and buggy while the 

rest of the population speeds past in modern cars. 

In the event the FCC determines that it lacks legal authority to extend the coverage of Section 

255 to the services that most impact education, economic activity, and quality of life today, the 

commission should immediately make this view known and join with advocates to request that 

Congress grant it the necessary authority or otherwise amend the law to ensure that the term 

“telecommunications services” is given a viable meaning. Finally, NCD recommends that 

Congress, in its consideration of telecommunications deregulation legislation,124 ensure that 

existing civil rights protections under Section 255 (as well as those that may accrue from other 

laws) are not inadvertently jeopardized, confused with economic regulations, and held hostage 

to conflicts among the telecommunications and media industries. 

190

6. E-GOVERNMENT 

Broadly speaking, the term “e-government” refers to the variety of services, activities, 

information resources, and citizen-government interactions that the government provides, 

conducts, or supports in whole or in part through the use of E&IT. Like e-commerce, 

e-government has grown rapidly at the federal and state levels, and has become either the 

modality of choice or, in many cases, the sole available modality for carrying out a growing 

array of governmental functions. In areas from telecommuting and agency Web sites to online 

tax return filing, e-government affects our lives and defines and structures our options more 

and more with each passing day. 

Whereas some people, having real choice in the matter, undoubtedly actively opt to minimize 

their participation in e-government, even they are affected by it. But at least for them, less access 

to federal information and services is a consequence they choose to accept. For all too many 

others, including millions of Americans with disabilities, denial or restriction of access to the 

technologies and resources of e-government is not a matter of choice but a matter of exclusion 

and deprivation. For these Americans, the digital divide is an increasingly sinister and crushing 

barrier to education, economic self-sufficiency, and full participation in community and civic 

life.125 

Away from the Internet, the issues are no less pressing. We would not think of opening a post 

office or a new federal building today that did not provide physical access for wheelchairs, yet 

we continue to encounter new examples of e-government, including at the state and local levels, 

that are more or less inaccessible to persons with disabilities. And even short of sophisticated egovernment applications, even inaccessible “low-tech” continues to abound. For example, if 

directories and directional signage are available only in print, if one’s turn to talk to an official is 

made known only by a name or number being called out by a digitized voice, if no assistance is 

offered in the completion of informational forms, or if questions are required to be answered 

verbally, all of which are common, people with disabilities inevitably suffer serious disadvantage 

191

and exclusion. Technology, much of it now simple and routine, coupled with flexibility and 

creativity in the rules governing its use, can correct many of these situations, but if new 

technology continues to be deployed without due and timely consideration of all these users, only 

growing inequality and estrangement from government will result. 

Another key fault line for e-government relates to the expectations the government holds for 

those who use E&IT on its behalf and with public funds. When the government partners with 

state, nonprofit, or for-profit private sector entities, it imposes a number of expectations on these 

partners. These expectations, of course, vary with the law under which the relationship exists and 

with the objectives of the partnership, but all contractors, grantees, joint venturers, and operating 

agents are generally expected to comply with civil rights laws. No one would tolerate 

discrimination by these partners on the basis of race, religion, or gender. Yet, when inaccessible 

E&IT is deployed, resulting in lesser opportunities for people with disabilities than for others, 

discrimination is certainly what occurs. 

Where once it may have been plausible to say that unequal access, because unintentional or 

unavoidable, was not discriminatory, progress in access technology and widespread information 

on its availability and importance no longer allow regret to suffice. Whether or not it is 

actionable or culpable, the failure to at least evaluate accessibility options and costs can no 

longer be regarded as accidental. 

Some may argue that imposition of accessibility requirements in all federal partnership 

relationships goes beyond the authority of the Federal Government. But what law exempts 

e-applications and e-activities and services from the coverage of civil rights laws? 

Because of a number of technical issues—including variations among enabling and authorizing 

statutes creating the myriad relationships in question—the process of implementing e-civil rights, 

as mentioned earlier in this report, must begin with a DOJ assessment of the current scope of 

federal authority and responsibility in this area. To the degree that the DOJ finds imposition of 

192

accessibility requirements on e-government partners to be legally permissible, agencies should be 

instructed and assisted to move forward on including appropriate notices and requirements in 

their regulations, bid solicitations, contracts, grants, and other instruments. To whatever extent 

various laws are found to permit the establishment of such requirements, the DOJ should work 

with NCD and other appropriate bodies to develop suitable guidelines for use by line agencies in 

exercising this important option. 

7. THE INTELLECTUAL PROPERTY AND CIVIL RIGHTS CONFLICT IN CYBERSPACE 

As early as 1931, provision was made in our law for the transcription of books into braille by the 

Library of Congress for distribution through a national library system to persons who are blind 

and, subsequently, also to people who have other reading disabilities. Most recently, the 

Copyright Act was amended in 1996 to allow for the reproduction of all published books in 

“specialized formats” by a variety of nonprofit organizations other than the Library of Congress 

National Library Service for the Blind and Physically Handicapped for use by persons with 

reading disabilities.126 Various safeguards are included in the law to prevent its being used as a 

subterfuge for damaging the economic rights of copyright holders, including bans on the 

distribution of the material for money. 

Notwithstanding the willingness of the publishing industry to accept this legislation, recent 

developments suggest that the relationship between the access rights of persons with disabilities 

and the intellectual property rights of copyright holders may no longer be so benign. 

Developments occurring in the past year suggest that the intersection between technology and 

law has created new issues. 

Pursuant to the Digital Millennium Copyright Act of 1998 (DMCA),127 the DOJ appears to have 

taken the position that copyright protection extends to software created for copying electronic 

documents into formats other than those prescribed by the producer. In one widely publicized 

case, Russian computer programmer Dmitry Sklyarov was prosecuted in this country for writing 

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and selling a program that allowed Adobe e-books to be copied into other formats not approved 

by the manufacturer. Without going too far into the complexities of the case, it is enough to note 

that by interpreting the DMCA as it did, the DOJ took the view that not only the informational 

content but also the format in which information is presented comes under the umbrella of 

intellectual property. Ominously, the term widely used for what the programmer did was 

interfering with the “access controls” that the producer had a legal right to establish and enforce. 

In fact, development and dissemination of this program that allowed Adobe e-books to be copied 

into other formats was alleged to constitute a criminal violation of the Copyright Act, as well as 

conspiracy under the federal criminal code. 

Although the defendant in this case does not appear to have been primarily motivated by 

accessibility concerns, the program he developed was said to represent the most effective means 

for blind persons who use screen-readers to gain access to these e-books. By the same token, no 

indication exists that the DOJ would have considered Sklyarov’s program legal, even if it had 

been intended to facilitate access and had been distributed without charge only to persons eligible 

for the Library of Congress program. 

Under these circumstances, concern is warranted over whether the DMCA will be interpreted to 

allow a variety of activities done for the sake of access but potentially deemed violative of the 

new law. If the DMCA does not authorize the disregard of “access controls” for the sake of 

accessibility, especially where the alleged infringement represents the only means for rendering 

the text in a format that computer users with disabilities can access, what options does the law 

provide for customers with disabilities to access the e-books published in a proprietary format, 

such as Adobe’s? It is one thing for the law to contain no requirements that e-books be made 

accessible. It is quite another when the refusal of an e-publisher to provide them in an accessible 

format is backed by the weight and sanction of the criminal law. It is comforting to assume that 

no one would ever be prosecuted under these circumstances, but, although comforting, is it 

necessarily true? 

194

NCD recommends that the Library of Congress make a determination regarding the means, if 

any, by which electronic publications provided in inaccessible formats can legally be made 

accessible to individuals with disabilities. It may be that the “fair use” doctrine adequately covers 

such cases, but in the face of the expansive definition accorded to intellectual property rights in 

the electronic realm by industry and by federal criminal law enforcers, this important question 

cannot be left to guesswork. 

8. WIRELESS ACCESS FOR USERS OF HEARING AIDS 

NCD congratulates the FCC for its issuance in October 2001 of a notice of proposed rulemaking 

(NPRM),128 under the authority of the Hearing Aid Compatibility Act of 1988 (HACA), which 

will signal the beginning of a full inquiry into the current potential for requiring that mobile 

phones be made compatible with hearing aids. The 1988 legislation had exempted mobile phones 

from the hearing aid compatibility requirements applicable to other phones but had instructed the 

FCC to periodically review this exemption in the light of changing technology. This NPRM will 

facilitate the development of a complete record of the technological, economic, and other 

dimensions of the subject. 

NCD hopes and believes that it will thus prove possible for the FCC to determine that the 

exemption is no longer warranted and therefore take action to establish a meaningful timetable 

for bringing cellular phones into full compliance with the accessibility provisions that apply 

generally throughout the telephone system. 

9. ASSISTIVE TECHNOLOGY ACT REAUTHORIZATION 

Earlier in this chapter we discussed the program for AT loans that is prominently endorsed by the 

NFI. As noted, the AFP operates under Title III of the Assistive Technology Act of 1998, but 

equipment loans are not the only important activity supported by this legislation. 

195

The AT Act—which had its origins in the Technology-related Assistance for Individuals with 

Disabilities Act of 1998, or the Tech Act as it is commonly called—also provides for the 

operation of state-based assistive technology programs that carry out a variety of advocacy, 

systems-change, technical assistance, information dissemination, public awareness, and other 

activities on behalf of AT at the state level. From their vantage point, these projects are uniquely 

positioned to participate effectively in policy debates at the crucial state level, and it is widely 

believed that they have played an instrumental role in bringing about the consideration or 

incorporation of AT into a wide variety of settings and decisions. 

The AT Act had been scheduled to sunset at the end of FY 2001, but action late in the first 

session of the 107th Congress forestalled this by extending the program through September 30, 

2002. With this reprieve, we must consider whether it should be reauthorized and what form any 

long-term reauthorization should take. 

Congress is expected to hold hearings on the AT Act early in the 2002 session. NCD believes 

that the AT Act should be reauthorized. Without this statute, it is unclear who could perform the 

many valuable functions currently carried out by the state-based AT projects. It is also unclear 

what could replace the voice for AT and accessibility in the councils of state government that the 

AT Act projects represent. 

The state AT projects have also been responsible for operating the loan funds favored by the 

Administration. Were these state AT programs not to continue, other alternatives for the 

operation and accountability of the loan programs would need to be identified. 

In many areas, the experience and knowledge of the AT Act programs are unique and 

irreplaceable. Before we abolish these small but tremendously instrumental programs, we must 

be able to answer the question of who or what will take their place. NCD believes that in the 

absence of any entity or institution readily available to fulfill the roles played by these small 

programs at state level, the AT Act should be reauthorized. 

196

Another part of the AT Act has involved the provision of funds to the state-based protection and 

advocacy (P&A) programs for AT work. These funds, though again small in amount, have 

facilitated the development of nationwide expertise on a variety of legal issues surrounding AT 

and have contributed to the development of important public policy and legal initiatives. 

While the P&As derive their funds from a number of program sources, the AT Act is the only 

source that focuses on AT. Again, in the absence of any alternative resources willing and capable 

of taking their place in this work, Congress should preserve this valuable resource, which we 

believe yields far more than its minimal cost. Accordingly, NCD recommends that P&A funding 

be continued as an element of the AT Act program. 

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Chapter 12 

International 

1. INTERNATIONAL CIVIL RIGHTS 

Early in 2001, NCD wrote to the secretary of state requesting that American foreign policy 

initiatives ensure protection of the civil rights of persons with disabilities.129 Although respectful 

of other cultures, including those with values differing from our own, we believe that many 

legitimate opportunities exist within the framework of the variety of international aid and 

development programs, cultural exchanges, and bilateral and multilateral relationships we 

maintain to encourage the fullest possible inclusion of people with disabilities in all activities and 

benefits. 

NCD appreciates that the State Department has been totally absorbed in other concerns of the 

most fateful sort during the final months of 2001. 

In the experience of these recent months are strong indications of the wisdom of incorporating a 

strong civil and human rights commitment into the fabric of our nation’s relations with, and 

outreach to, other lands. For reasons that need no repetition here, the treatment and the rights of 

women have become a centerpiece of our foreign policy to a degree as never before. We have 

come to understand that in the oppression of women and in the denial of their human rights, 

many unpleasant truths about other societies can be glimpsed, and we have learned that by 

pressing for recognition of the dignity of women, other benefits can result. 

As it may relate to Afghanistan, NCD believes that many of the same truths, the painful and the 

hopeful alike, underscore the aspiration for equal rights and opportunity for people with 

disabilities. As that nation struggles to lift itself from the crushing burdens of the past twenty 

years of foreign occupation, civil war, and despotism, we hope that the values of such laws as 

Section 504 or Title II of the ADA can find their way into its new laws and practices. 

199

Tragically, one enduring legacy of the past two decades is likely to be the presence of a 

significant number of people with disabilities in Afghani society. Any measures that facilitate the 

fullest participation of these individuals in society cannot help but be advantageous to 

reconstruction and to the future. 

NCD believes that in due time, circumstances will be presented for NCD to resume its work with 

the State Department on behalf of the application of disability rights in a broad range of settings 

and under a number of programs. NCD also believes that it is necessary for the Council to render 

its assistance to the State Department to continue to craft a foreign policy that respects and 

advances all human rights. 

2. UNITED NATIONS CONVENTION 

On November 30, 2001, the United Nations General Assembly approved by consensus the 

Mexican resolution calling for the establishment of an ad hoc committee, open to participation 

of all member states and accredited observers, to consider proposals for a comprehensive 

international convention to protect and promote the rights and dignity of persons with 

disabilities.130 In cooperation with the United States International Council on Disability 

(USICD), NCD co-sponsored a meeting in June 2002 that brought together disability and 

international human rights advocates to discuss the rationale for the convention and to explore 

the application of the future convention to the human rights of people with disabilities. NCD is 

proud to participate in this effort and looks forward to the development and eventual ratification 

of the proposed convention. 

3. INTERNATIONAL DAY OF DISABLED PERSONS 

The annual International Day of Disabled Persons ceremonies were held on December 7, 2001. 

President Vicente Fox of Mexico, the lead sponsor of the UN resolution described above, was 

honored. Also honored for their human and disability rights work were seven eminent American 

200

women who served in the previous Administration and who continue to serve the cause of human 

and civil rights in a variety of capacities today. We know that members of the current 

Administration will in due course be honored for their share of accomplishments on behalf of 

these great causes. 

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Chapter 13 

Homeland Security 

From a term that would have evoked various interpretations and a great deal of puzzlement 

among the general public as recently as last summer, “homeland security” has emerged as a 

central concern of government and citizens and as a major component of national, state, and local 

budgets. In too many instances, NCD has learned of the emergence of assumptions and 

stereotypes of people with disabilities—for example, restricting the access of people with 

disabilities to lower levels of workplaces, places of public accommodations, and housing. In 

planning for how our nation will respond to contingencies that all hope will never occur, the 

presence among us of more than 50 million Americans with disabilities must not be overlooked 

or forgotten. 

Experience in the grim and terrifying hours of September 11 illustrates many of the issues facing 

this segment of our population. People who were deaf often could not follow news reports on 

TV, because of the lack of captions. If life-and-death instructions were conveyed by the 

emergency warning broadcast system today, would their accessibility to people who cannot hear 

be ensured? 

Evacuation plans for major buildings and facilities did not always include provisions to ensure 

that people with disabilities could have an equal chance of making it out. If a major facility had 

to be evacuated today, would occupants who are blind have the means of knowing the location of 

emergency exits? Would persons using wheelchairs know where to go or what to do if elevators 

were turned off? Would persons who cannot hear be alerted by visual alarms to the need for swift 

action? Would people with vocal communication disabilities be heard when rescuers searched for 

those in need of help? 

Throughout this report we have discussed many issues bearing on equality of opportunity and 

equality of treatment. As the imperatives of domestic security and national preparedness make 

203

more vividly clear than ever, these concerns are far from abstract. To put the matter in yet starker 

terms, if a nuclear facility were to be the target of terrorism and public health officials were to 

distribute potassium iodide to protect the populace against the effects of radiation, would people 

with disabilities know where to get it, have physical access to the distribution centers, be able to 

open the packages or seals, or be able to read the usage instructions? It is easy to say that 

someone would help them, would do it for them, but is that comforting expectation enough? 

Let us learn from our tragedy and let us use our solidarity and shared sense of national purpose to 

ensure accessibility and equality, not only in our reaction to danger but as well in the pursuit of 

our hopes. The values we embrace and offer to others are not values for some. They are nothing 

if not values for all. 

204

Endnotes 

1. Major NCD reports, recommendations, and policy analyses include Toward Independence: An Assessment of 

Federal Laws and P rograms Affecting Persons w ith Disabilities (1986); Meeting the Unique Needs of Minorities 

with Disabilities: Report to the President and the Cong ress (1993); Progress in A dvancing the Status of Peop le with 

Disabilities Around the World: The Work of the United States Delegation to the 33rd Session of the Commission for 

Social Development of the United Nations (1993); Sharing the R isk and Ensu ring Indepen dence: A Disability 

Perspective on Access to Health Insurance and Health-related Services (1993); Study on the Financing of Assistive 

Technology Devices and Services for Individuals with Disabilities (1993); Inclusionary E ducation for Stud ents with 

Disabilities: Keeping the Promise (1994); Making Hea lth Care Reform W ork for Americans with D isabilities: 

Summary Inform ation on Five Town M eetings on Health Care R eform (1994); Disability Perspectives and 

Recommendations on Proposals to Reform the Medicaid and Medicare Programs (1995); Access to the Information 

Superhighway and E merging Information Tec hnologies by People with D isabilities (1996); Foreign Policy and 

Disability (1996); Guidance from the Graphical User Interface (GUI) Experience: What GUI Teaches about 

Technology Acc ess (1996); Outreach to Minorities with Disabilities and People with Disabilities in Rural 

Communities (1997); Equality of Opportunity: The Making of the Americans with Disabilities Act (1997); Impact of 

the Welfare Reform Legislation on Legal Immigrants with Disabilities (1997); Assisted Suicide : A Disability 

Perspective Position Paper (1997); Grassroots Experiences with Government Programs and Disability Policy 

(1998); Reorienting Disability Research (1998); Access to Multimed ia Technology by Peo ple with Sensory 

Disabilities (1998); Implementation of the National Voter Registration Act by State Vocational Rehabilitation 

Agencies (1999); Implementation Plan for Executive Order 13166: Improving Access to Services for Persons with 

Limited English Proficiency. 

2. P.L. 101-336, codified at 42 USC Sec. 12101 et seq. 

3. Title I, 42 USC Sec. 12111. 

4. Title II, 42 USC Sec. 12131. 

5. Title III, 42 USC Sec. 12181. 

6. 47 USC. Sec. 255 (currently available at http://www.fcc.gov/cgb/dro/telecom_language.html). Implementing 

regulations at 36 CFR. Pa rt 1193 (curre ntly available at http ://frWebga te.access.gpo .gov/cgi-bin/getcfr.cgi?TITLE=36&P ART=1193& SECTION =1&YE AR=2001&T YPE=TE XT). 

7. P.L. 105-220, Sec. 408(b), codified at 29 U SC Sec. 794d (curre ntly available at, among other W eb sites, 

http:///www.access-board.gov/sec508/guide/act.htm). Guidelines and interpretive regulations are at 36 CFR Part 

1194, and 48 CFR Parts 2, 7, 10-12, and 39 (currently available at http://www.section508.gov/docs/final9967A.doc). 

8. See, e.g., http://www.w3.org. 

9. The Bobby program was developed by the Center for Applied Special Technology (CAST) (the latest version of 

this tool can be reached through http://www.cast.org). 

10. Fact She et: Steps Taken to Ensure N ew Security Requirem ents Preserv e and Resp ect the Civil R ights of People 

with Disabilities (Office of the Assistant General Counsel for Aviation Enforcement Proceedings, and Aviation 

Consum er Protection D ivision, U.S. D epartme nt of Transp ortation Octo ber 29, 2001) (currently ava ilable at 

http://www.dot.gov/airconsumer/01-index.htm). 

11. P.L. 101-431. 

205

12. 47 USC Sec. 613 (b). Under the authority of the same section, the FCC has adopted rules requiring the provision 

of a specified number of hours of video description on network and major cable TV broadcasts. Video description 

(sometimes also called audio description or descriptive video) is the inclusion in breaks in the dialogue of spoken 

narration described the visual elements of the program. These rules are scheduled to take effect April 1, 2002. (FCC 

Docket M M 99-33 9.) 

13. President Bush’s statement announcing the New Freedom Initiative (NFI) (February 2001) (currently available at 

http://www .whitehouse .gov/news/f reedom initiative/text/freedo minitiative.htm l). Compa re, Investing in 

Independence: Tran sition Recomme ndations for President George W . Bush (NCD , January 200 1) (currently 

available at http://www.ncd.gov/newsroom/publications/bush.html). 

14. P.L. 105-17, codified at 20 USC Sec. 1400 et seq. 

15. The Developmental Disabilities and Bill of Rights Act, as amended, P.L. 106-402, codified at 42 USC Sec. 6000 

et seq. 

16. Social Security Act Title XIX, codified at 42 USC Sec. 1896 et seq. 

17. The federal Rehabilitation Act of 1973, as most recently amended by Title IV of the Workforce Investment Act of 

1998, P.L. 105-220, codified at 29 USC. Sec. 701 et seq. 

18. The Assistive Technology Act of 1998, P.L. 105-394, codified at 29 USC Sec. 3011. 

19. P.L. 103-218. 

20. The Ticket to Work and Work Incentives Improvement Act of 1999, P.L. 106-170 (1999). 

21. Executive Order 13217 (June 18, 2001). 

22. Delivering o n the Prom ise: Prelimin ary Repor t of Federal A gencies’ A ctions to Elimin ate Barriers an d Promo te 

Community Integration (HHS 12stbastja) (available at http://www.hhs.gov/newfreedom/presidentrpt.html). 

23. Sum mary R eport of Priority A reas and Ind icators for ID EA Fo cused M onitoring (Oc tober 2001) (c urrently 

available at http://spannj.org/priorityareas-indicators.htm). Also, Panel Discussion on Focused Monitoring: A Video 

Web Cast of the U.S. Department of Education’s Office of Special Education and Rehabilitative Services (OSERS), 

October 9, 2001 (currently available at http://www.connectlive.com/events/osers). 

24. From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (NCD 2001) 

(currently available at http://www.ncd.gov/newsroom/publications/privliges.html). Also, News Release, (NCD 01-

318, January 3, 2001) National Council on Disability Acknowledges Surgeon General’s Report on Children’s 

Mental Health. Compare, Surgeon General’s Conference on Children’s Mental Health: A National Action Agenda 

(currently available at http://www.surgegeneral.gov/cmh/childreport.htm). 

25. List of the five civil rights reports: Promise s to Keep: A Decade of Federal E nforceme nt of the Am ericans with 

Disabilities Act (2000) (ava ilable at http://ww w.ncd.gov /newsroom /publications/prom ises_1.html); Back to School 

on Civil Righ ts (2000) (currently available at http://www.ncd.gov/newsroom/publications/backtoschool-1.html); 

Enforcing the Civil Rights of Air Travelers with Disabilities: Recommendations for the Department of Transportation 

and Congress (1999) (curr ently available a t http://www .ncd.gov/new sroom/pu blications/acaa .html); The Acc essible 

Future (2001)(currently available at http://www.ncd.gov/newsroom/publications/accessiblefuture.html); 

Reconstructing Fair Housing (2001) (currently available at 

http://www.ncd.gov/newsroom/publications/fairhousing.html). 

206

26. Achieving Independe nce: The Challenge for the 21st C entury (1996) (currently available at


http://www.ncd.gov/newsroom/publications/achieving.html).


27. National Disability Policy: A Progre ss Report, November 1999–Novem ber 2000 


(NCD 2001, available at http://www.ncd.gov/newsroom/publications/progressreport2000.html).


28. See, e.g., the H ale article, availab le at http://www .bls.gov/opub/m lr/2001/06/ressu m1.htm . 


Compare, the three reports issued by the Presidential Task Force on Employment of Adults with Disabilities


(PTFE AD): Recharting the Course, 1998 Report to the President (currently available at


http://www .dol.gov/_sec/pr ograms/p tfead/recha rt.htm); Recharting the Course: I f Not Now, W hen? 1999 R eport to


the Presiden t (currently available at http://www.dol.gov/_sec/programs/ptfead/ifnotnow.htm); and Recharting the


Course: Turning Points, Third Report to the President, 1999 (currently available at


http://www.dol.gov/_sec/programs/ptfead/2000rpt/index.htm).


29. See, e.g., T he AD A Notifica tion Act of 200 0, HR 359 0 (106th Con g. Second S ession); S. 782 a nd HR 91 4 (107th


Cong. First Session).


30. Progress Report, Note 27 supra.


31. Sutton v. United Air Lines, 527 US 47 1 (1999); Murphy v. United Parcel Service, 527 US 51 6 (1999); Albertsons 

Inc. v. Kirkingburg, 527 US 555 (1999). 

32. Board of Tru stees of the Un iversity of Alaba ma v. Ga rrett, 531 US 356 (2001). 

33. Olmstea d v. L. C. 527 US 581 (1999). 

34. Ex Parte Young, 209 US 123 (1908). 

35. The Supreme Court in Garrett (531 US at 374) recognizes the distinctions arising from jurisprudence under 

Young, but the key question is what will happen when a suit, though nominally for prospective, nonmonetary relief, 

comes along, if that relief requires the state to spend money. 

36. Promises to Keep, Note 25 supra. 

37. The Department of Justice’s quarterly reports on enforcing the ADA are available through the department’s ADA 

home page at http://www.usdoj.gov/crt/ada/adahom1.htm. 

38. The DOJ’S amicus briefs in Pallozzi v. All State Life Insurance, 198 F. 3d 28 (2d Cir. 1999), amended and 

rehearing de nied en banc (204 F. 3d 392 2000); Leonard F. v. Israel Discount B ank of New York , 199 F. 3d 99 (2d 

Cir. 1999); and Hooks (Docket No. 9950891, 5th Cir. 2000, unpublished opinion) (amicus brief currently available at 

http://www.usdoj.gov/crt/briefs/hooks.htm). N CD has also filed am icus briefs in the Supreme C ourt in major cases, 

including Toyota Motor Mfg., Kentucky v. Williams, decided in favor of the employer in January 2002, which 

addresses the criteria for determining who is entitled to request reasonable accommodations from an employer under 

Title I of ADA (brief available at http://www.ncd.gov/newsroom/publications/toyota_amicus.html). 

39. Apart from judicial advocacy, the state of Minnesota has waived its 11th Amendment immunity by statute. 

(Minn. Laws of 2001, can. 159). 

40. Compare, NCD am icus brief in the Supreme Court in Garrett (currently available at 

http://www.ncd.gov/newsroom/publications/amicus_99-1240.html). 

207

41. 29 USC Sec. 794. 

42. See NCD ’s Position Paper on Genetic Discrimination Legislation and Principles for Genetic Discrimination 

Legislation (March 4, 2002) (curre ntly available at http://www.ncd.gov/new sroom/publications/ 

geneticdiscrimination_positionpaper.h tml). 

43. The Voting Rights for the Elderly and Handicapped Act, P.L. 98-435 (1984). 

44. Currently available at http://w ww.nc d.gov/new sroom/pu blications/election reform.h tml. Com pare, Voters with 

Disabilities: Access to Polling Places and Alternative Voting Methods, (U.S. Ge neral Acc ounting Off ice, 10staestja; 

GAO-02-107) (currently available at http://www.gao.gov/new.items/d02107.txt). 

45. HR 32 95 (107th Co ng. First Session) . Compa re, Inclusive Fe deral Electio n Reform (NCD Web site) (c urrently 

available at http://www.ncd.gov/newsroom/publications/electionreform.html). 

46. 2 USC Sec. 1302 (b). 

47. Interim S ection 102 (b) R eport: Electronic Information Systems Review and Report on the Applicability to the 

Legislative Branch of Section 508 of the Rehabilitation Act of 1973 as Amended (U.S. Cong., Office of Compliance 

11stacstja) (currently located at http://www.compliance.gov/images/section508.pdf). 

48. Carrying On the Good Fight: Summary Paper from Think Tank 2000— Advancing the Civil and Human Rights of 

People with Disabilities from Diverse Cultures (2000) (currently available at 

http://www.ncd.gov/newsroom/publications/think2000.html). 

49. RSA’s award of a $2.5 million grant for the establishment of the National Technical Assistance Center for Asian 

Americans and Pacific Islanders, at the University of Hawaii Manoa, was announced De cember 14, 2001, in a 

release from disabilitydirect—announcement at ww w.disabilitydirect.gov. The name and citation given to the 1999 

Asian Americans and Pacific Islanders Executive Order. 

50. Lift Every Voice: Modernizing Disability Policies and Programs to Serve a Diverse Nation (1999) (curre ntly 

available at http://www.ncd.gov/newsroom/publications/lift_report.html). 

51. Kimel v. F lorida Board of Regents , 528 US 62 (2000). 

52. Buckhannon Board and Care Home Inc. v. West Virginia Department of Health and Human Resources, 532 US 

598 (2001). 

53. West Side Mothers v. Haveman , 133 F. Supp. 2d 549 ED Mich. 2001) (appeal pending in the Seventh Circuit). 

54. After this report was drafted but prior to its publication, the Sixth Circuit ruled in May 2002 in favor of 

West Side Mothers in rejecting the argument that sovereign immunity shields state officials accused of depriving 

citizens of a fed eral right. 

55. Alexander v. Sandoval, 531 US 1049 (2001). 

56. See The Sandoval Ruling (August 17 , 2001) (curre ntly available at http://www.ncd.gov/newsroom/ 

publications/sandoval.html), an analysis developed by Professor Robert L. Burgdorf Jr. for NCD on the U.S. 

Supreme Court decision in Alexander v. Sandoval and its implications for key disability rights laws. 

208

57. NCD letter of November 8, 2001, to the assistant attorney general for civil rights (currently available at


http://www.ncd.gov/newsroom/correspondence/boyd_11-08-01.html#main).


58. DOJ Supreme Court am icus brief in Chevron Inc. v. Echazabal (currently available at


http://www.usdoj.gov/osg/briefs/2001/3mer/1ami/2000-1406.mer.ami.html).


59. After this Report was drafted but prior to its publication the Supreme Court decided in favor of Chevron. NCD’s


next progress report will report on this and other Supreme Court decisions involving the ADA.


60. Letter from NCD to the U.S. solicitor general, August 29, 2001 (currently available at


http://www.ncd.gov/newsroom/correspondence/olson_8-29-01.html#main).


61. It may be that the DOJ’S role in this case, supporting a rule promulgated by the EEOC, reflects an administrative


consideration or an interagency responsibility that supersedes the department’s view on the merits of the case.


62. HR 1 (107th Cong. First Session), enacted as P.L. 107-110.


63. Progress R eport, Note 2 7 supra..


64. H. Rep. 107-334 (107th Cong. First Session, December 2001).


65. Back to Sc hool on Civil R ights, Note 27 sup ra. Also, N CD’s ID EA rea uthorization w hite paper (cu rrently


available at http://www.ncd.gov/newsroom/reauthorizations/idea/idea.html). See also http://spannj.org/priorityaeas­


indicators.htm. Also, Summary Report of Priority Areas, Note 23 supra.


66. Released October 3, 2001 (currently available at http://www.whitehouse.gov/news/releases/2001/10/20011003­


1.htm).


67. Testimony of Secretary Rod Paige before the House Committee on Education and the Workforce regarding the


Overidentification of Minority Students Under the Individuals with Disabilities Education Act, October 4, 2001


(currently available at http://www.ed.gov/speeches/10-2001/011044.html).


68. Note 63 supra.


69. Progress Report, Note 27 supra.


70. Id.


71. NCD	 letter to the chair of th e Senate F inance Co mmitte e, April 18, 200 1 (currently av ailable at 


http://www.ncd.gov/newsroom/correspondence/grassley-4-18-01.html`#dmain).


72. Position Pap er on Patients’ B ill of Rights (M arch 30, 2001 ) (currently av ailable at 


http://www .ncd.gov/new sroom/pu blications/patientsb illofrights.html). A lso, Testimo ny of Ma rca Bristo, Society’s


Great Challenge: The Affordability of Long-Term Care, submitted to the Senate Committee on Finance (April 18,


2001) (curre ntly available at http://www.ncd.gov/newsroom/testimony/bristo_4-18-01.html).


73. See also NCD ’s Position Paper on Patients’ Bill of Rights Legislation (March 30, 2001) (cur rently available at 


http://www.ncd.gov/newsroom/publications/patientsbillofrights.html).


74. From P rivileges to Righ ts, Note 24 supra.


209

75. P.L. 106-515. 

76. HR 2260/S. 1272 (106th Cong. Second Session 2000). 

77. Note 1, supra. 

78. CIM 60.9. same citation to the CMS decision rescinding the AAC national coverage decision. 

79. Olmstead v. L. C., 527 US 581 (1999). 

80. Delivering on the Prom ise, Note 22 supra. 

81. Disability Rights Education and Defense Fund (DREDF ) press release of August 27, 2001, announcing denial by 

federal district judge of motion by defendant’s to dismiss suit by independent living advocates against rebuilding of 

hospital (available at http://www.dredf.org/press_releases/laguna.html). 

82. Transition and Post-School Outcomes report, Note 1 supra. 

83. Progress Report, Note 25 supra. 

84. Executive Order 13078 (March 13, 1998), Section 2 (h) as amended October 25, 2000. 

85. U.S. Department of Labor, Office of Disability Employment Policy, press release, October 1, 2001. Lists of grant 

categories and grantees are included (available through http://www.dol.gov/dol/odep/public/media/press/). 

86. Keeping the Prom ise, Note 25 supra. 

87. TWIIA, Note 20 supra. (Information on the status of the TWIIA program is available at 

http://www.ssa.gov/work/ticket/ticket.html). 

88. Further info rmation on the Med icaid infrastructu re grants is availa ble at 

http://www.hcfa.gov/medicaid/twwiia/infrastr.htm`#;d. 

89. The OPM reasonable accom modation suggested language interim rule is currently available through 

www.opm.gov/fedregis/index.htm. 

90. P.L. 105-220. 

91. For an illustration of one well-intentioned effort by a federal agen cy, in this case the FCC, to grapple with these 

legal complexities, consider the FCC Report and Order on Docket Nos. 98-204 and 96-16 (currently located at 

http://www.fcc.gov/Bureaus/Mass-Media/Orders/2000/fcc00020/pdf). 

92. Internal Revenue Code (IRC) Sec. 44, codified at 26 USC Sec. 44. 

93. 26 USC Sec. 190. 

94. 26 USC Sec. 51. 

95. 26 USC Sec. 67 (d). 

96. P.L. 104-193. Also, Indicators of Welfare Dependence, Annual R eport to Cong ress by the D epartme nt of Health 

210

and Human Services (March 2001) (currently available at http://aspe.hhs.gov/hsp/indicators01/index.htm). Also, fact 

sheet: Welfare Reform: Implementing The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 

(currently available at http://www.hhs.gov/news/press/2001/pres01/fswelre=m.html). 

97. See http://www.hud.gov/reform/strategicplan.pdf, pages 28 and 45, about homeownership disparities. See also,


http://www.huduser.org/publications/pdf/brd/04Gabriel.pdf.


98. Delivering on the Prom ise, Note 22 supra.


99. Reconstructing Fair Housing (NCD 2001) (currently available at


http://www.ncd.gov/newsroom/publications/fairhousing.html).


100. Fair Housing Act of 1968, 42 USC Sec. 3601.


101. The Fair Housing Amendments Ac t of 1988, P.L. 100-430.


102. NCD letter to the secreta ry of HU D, Nove mber 21 , 2001 (curren tly available at http:/ 


www.ncd.gov/newsroom/correspondence/martinez_11-21-01.html).


103. The HUD accessibility survey.


104. For example, HR 421 and HR 674 (107th Cong. First Session).


105. The We ndell H. Ford Aviation Investm ent and Reform Act for the 21st Century (AIR -21 Act) of 2000. Progress


Report, Note 27 supra.


106. Fact Sheet, Note 10 supra.


107. TEA-21, the Transportation Equity Act for the 21st Century. Progress Report, Note 27 supra.


108. James v. Peter Pan Transit Management Inc. (EDNC) and Richardson and Steele v. City of Steamboat Springs


Colo. (D. Colo.) (cases in which the DOJ has intervened to support the accessibility rights of public transit users).


For further discussion, see Progress Report, Note 27 supra.


109. Press release, distributed by Justice For All, December 11, 2001 (currently available through


http://www.jfanow.org).


110. Correspondence among NIDRR , state AFP grant recipients, and the national technical assistance provider,


indicating NIDRR’s views regarding will and what will not qualify as a match under the program.


111. P.L. 106-170 Sec. 303 (1999). The study was launched in late 2001 and results are expected in 2002.


112. Progress Report, Note 27 supra.


113. Access Board guidelines, Note 7 supra


114. Federal Acquisition Regulation (FAR), Note 7 supra.


115. The Accessible Future (NCD 2001) (currently available at


http://www.ncd.gov/newsroom/publications/accessiblefuture.html).


211

116. Note 8, supra.


117. Web Obstacles Abound, Federal Computer Weekly (October 22, 2001) (summarizes research findings of Jakob


Nielsen regarding costs and difficulties associated with the existence of Web sites that, although meeting legal


accessibility requirements, are not readily usable) (currently available at


http://www.fcw.com/fcw/articles/2001/1022/Web-access-10-22-01.asp).


118. Progress Report, Note 27 supra.


119. P. L. 104-104 Sec. 708.


120. Note 6, supra.


121. Preamble to Section 255 implementation guidelines, 36 CFR. Part 1193 (currently available at


http://www.access-board.gov/telecomm/html/telfinal.htm).


122. Id.


123. The possibility that Section 255 would apply only to a comparatively narrow range of telecommunications


activities was not discussed during the congressional deliberations over inclusion of civil rights protections in the


Telecomm unications Act. It came as a shock to many advocates.


124. For example, HR 154 2 (107th Cong. First Session 2001).


125. G ould, M artin. Building an Inclusive E-government Agenda for All Americans (in press, Mary E. Switzer


Seminar Monograph). Com pare, S. 803 and H. Res. 2458 (107 th Cong. First Session).


126. Interestingly, this change in the law enabled qualifying nonprofit membership and service organizations to make


such copies without securing permission from the copyright holder. However, large print was excluded from the


definition of specialized formats, presum ably because there is a com mercial market for large print materials.


127. The Digital Millennium Copyright Act of 1998 (DMCA), P.L. 105-304.


128. FCC Notice of Proposed Rulemaking (NPRM), November 14, 2001, In Re: Section 68.4 of the FCC’s Rules


Governing Hearing Aid-compatible Telephones (especially statement of Commissioner Abernathy).


129. N CD letter to the secretary o f state, Februa ry 12, 200 1 (currently av ailable at 


http://www.ncd.gov/newsroom/correspondence/cpowell-2-12-01.htm).


130. NCD B ulletin (December 2001) (currently available at http://www.ncd.gov/newsroom/bulletins/1201.html).


212

PART II 

Major Activities Summary—Fiscal Year 2001 

The National Council on Disability (NCD) continues to be a leader in the development and 

analysis of disability civil rights policies that affect 54 million Americans with disabilities and 

their families. With a budget authorization of $2,615,000, NCD conducted a large array of 

activities in fiscal year (FY) 2001. Those activities promoted policies, programs, practices, and 

procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the 

nature or severity of the disability, from all cultural backgrounds. They also helped individuals 

with disabilities realize the promise of the Americans with Disabilities Act (ADA) by 

empowering them to achieve economic self-sufficiency, independent living, inclusion, and 

integration into all aspects of society. 

In FY 2001, NCD continued to review and evaluate new and emerging policy issues that have an 

impact on people with disabilities. NCD continued to identify the overall needs and concerns of 

people with disabilities by conducting hearings, forums, and conferences throughout the country 

and by responding to thousands of telephone, e-mail, and written inquiries on ADA and other 

disability civil rights issues. 

NCD also continued its Disability Civil Rights Monitoring Project by completing research and 

comprehensive reviews of the first 12 years of enforcement efforts under the 1988 Fair Housing 

Amendments Act and related legislation and of the first 27 years of enforcement efforts under 

Section 504 of the Rehabilitation Act of 1973, as amended. 

Also during this fiscal year, NCD began research on the implementation of the Civil Rights of 

Institutionalized Persons Act of 1980 and the landmark U.S. Supreme Court decision in 

Olmstead v. L.C. 527 U.S. 581. Both studies are part of NCD’s series of reports known as 

Unequal Protection Under Law. 

The Disability Civil Rights Monitoring Project, or Unequal Protection Under Law series, grew 

out of NCD's 1996 national policy summit, at which more than 300 disability community leaders 

from diverse backgrounds called on NCD to work with federal agencies to develop strategies for 

greater enforcement of existing disability civil rights laws. On March 18, 1999, NCD produced 

its first report, Enforcing the Civil Rights of Air Travelers with Disabilities. The second report, 

Back to School on Civil Rights, on the enforcement of the Individuals with Disabilities Education 

Act, was issued on January 25, 2000. The third report, Promises to Keep: A Decade of Federal 

Enforcement of the Americans with Disabilities Act, was released on June 27, 2000. The fourth 

report, The Accessible Future, was issued on June 21, 2001. The enforcement reports to follow in 

this series will be on the Fair Housing Amendments Act of 1988 and Section 504 of the 

Rehabilitation Act. They will be released in FY 2002. 

Major activities for FY 2001 also included the release of several other publications that include 

The Accessible Future, National Disability Policy: A Progress Report, Position Paper on the 

213

Patients’ Bill of Rights Legislation, Inclusive Federal Election Reform, Applied Leadership for 

Effective Coalitions, and Investing in Independence: Transition Recommendations for President 

George W. Bush. 

NCD also established a Cultural Diversity Advisory Committee, which provides advice and 

recommendations to NCD on issues affecting people with disabilities from culturally diverse 

backgrounds. Specifically, the committee will help identify issues, expand outreach, infuse 

participation, and elevate the voices of underserved and unserved segments of this nation's 

population. This will help NCD develop federal policy that will address the needs and advance 

the civil and human rights of people from diverse cultures. 

214

ACTIVITIES FOR FY 2001 

NCD conducted a variety of activities in FY 2001 that significantly increased consumer input 

into public policy issues affecting people with disabilities and provided information on NCD’s 

daily operations. A summary of those activities follows. 

NCD Sponsors International Conference 

October 20–26, 2000 

NCD joined the Social Security Administration in sponsoring the International Disability Law 

and Policy Conference held in Washington, D.C. Other federal sponsors included the Presidential 

Task Force on Employment of Adults with Disabilities; the President’s Committee on 

Employment of People with Disabilities; the Department of State; the Department of Health and 

Human Services, Center for Mental Health Services; the U.S. Agency for International 

Development; the U.S. Information Agency; and the Department of Education, Office of Special 

Education and Rehabilitative Services. 

During the five-day conference, more than 130 international disability law and policy subjectmatter experts from more than 40 countries discussed legal theories, practical implementation 

issues, and strategies to advance or implement laws and policies to protect people with 

disabilities from discrimination and exclusion. One important outcome of the conference was 

broad support for an international convention on the human rights of people with disabilities. 

NCD Updates Web Site 

November 22, 2000, Washington, D.C. 

NCD added three new features to its award-winning Web site (www.ncd.gov) that will help 

people with disabilities and those with limited English proficiency (LEP). One of the biggest 

challenges on the Web is finding what you are looking for. To help users find information more 

quickly, NCD has added a Netscape Web Publisher search function. This search function will 

allow users to quickly pinpoint specific information anywhere within the NCD Web site. Users 

can search through NCD documents for a specific word, obtaining search results that list all 

documents that match the query. Users can then select a document from the list to browse in its 

entirety. This function provides easy access to server content. 

To help people with LEP, NCD has added a language translation function. Known as Babel Fish, 

this automatic translation service removes language barriers across the World Wide Web. Babel 

Fish translates to and from English, French, German, Italian, Portuguese, and Russian. 

A list of frequently asked questions (FAQs) was also added to the NCD home page to help users 

answer standard questions about NCD, its mission, and the availability of disability resources. 

215

NCD Seeks Research Contractors 

December 20, 2000, Washington, D.C. 

NCD published two requests for proposal (RFPs) in Commerce Business Daily. The first sought 

an independent contractor to develop and conduct a study evaluating the extent to which people 

with disabilities living in institutions are being served consistent with the Civil Rights of 

Institutionalized Persons Act and the Americans with Disabilities Act. The study will analyze 

data on institutional practices from a sampling of state institutions (varying from those with best 

practices to those with documented violations) to present findings about existing practices, assess 

compliance, and make recommendations for improving the quality of life and safeguarding the 

human and civil rights of people with disabilities who live in institutions. Findings and 

recommendations from this study will be a point of reference for NCD's study evaluating states' 

implementation of the Olmstead v. L.C. Supreme Court decision, which gave people with 

disabilities the legal right to choose community-based support options over institutional living. 

The second RFP sought an independent contractor to develop and conduct a study of current 

strategies (including NCD's Closing the Gap: Ten-Point Strategy for the Next Decade of 

Disability Civil Rights Enforcement (www.ncd.gov/newsroom/publications/gap.html) for the 

swift and effective implementation of the 1999 Supreme Court decision in Olmstead v. L.C. This 

decision mandated a systemic change having major impacts for national and state-funded 

residential options for people with severe physical and mental disabilities. Despite a January 

2000 directive to states from the Health Care Financing Administration strongly encouraging 

timely implementation, recent research indicates that the pace of progress is very slow in many 

states. The study will identify barriers to community placement and include recommendations for 

their removal. 

NCD Welcomes New Members 

January 3, 2001, Washington, D.C. 

On January 3, President Clinton made two recess appointments to NCD. NCD said goodbye to 

outgoing member Shirley W. Ryan, who made numerous contributions to the empowerment of 

people with disabilities, especially in the areas of youth and the Individuals with Disabilities 

Education Act (IDEA). NCD member Michael Unhjem was also replaced. NCD welcomed new 

members Edward Correia of Bethesda, Maryland, and Gerald S. Segal of Haverford, 

Pennsylvania. 

NCD Submits Transition Recommendations to President Bush 

January 17, 2001, Washington, D.C. 

On February 1, President George W. Bush released his New Freedom Initiative 

(www.whitehouse.gov/news/freedominitiative), which lays out a blueprint to increase investment 

in and access to assistive technologies and a high-quality education and to help integrate 

Americans with disabilities into the workforce and into community life. 

216

NCD presented the Bush Transition Team with a copy of NCD's disability policy plan titled 

Investing In Independence: Transition Recommendations for President George W. Bush. 

(www.ncd.gov/newsroom/publications/bush.html). The document was provided to assist with 

transition efforts that involve disability policy. President Bush's New Freedom Initiative provides 

opportunities for the necessary changes to occur through the implementation of a coordinated, 

informed transition plan. NCD has, over the past several years, issued numerous civil rights 

evaluations and disability policy reports directly related to the areas articulated in the New 

Freedom Initiative. In submitting its transition recommendations, NCD offered its expertise and 

wealth of collective grassroots experience to help President Bush at the outset of his new 

administration and beyond. 

NCD Conducts Community Briefing 

February 6, 2001, Myrtle Beach, SC 

NCD conducted a community briefing for people with disabilities that focused on NCD’s latest 

findings and recommendations on federal disability civil rights laws. 

NCD Publishes Applied Leadership for Effective Coalitions 

February 14, 2001, Washington, D.C. 

NCD published Applied Leadership for Effective Coalitions 

(www.ncd.gov/newsroom/publications/appliedleadership.html), which was designed to cultivate 

leadership development and coalition building across diverse cultures and disabilities with the 

hopes that we will continue to find common ground. The need for this guide grew out of an 

NCD-sponsored meeting among people from diverse cultures in May 2000. 

NCD Releases Position Paper on Election Reform 

March 15, 2001, Washington, D.C. 

NCD released a position paper on Inclusive Federal Election Reform 

(www.ncd.gov/newsroom/publications/electionreform.html), which contains recommendations 

to effectively address the broad range of issues related to voting accessibility for people with 

disabilities and to develop strategic actions at the national level. 

Disability Community Mourns the Loss of Rae Unzicker 

March 22, 2001, Sioux Falls, SD 

Rae Unzicker, a longtime disability civil rights advocate and beloved member of NCD since 

1995, died at her home in Sioux Falls, South Dakota. She was 52. Her work on behalf of people 

with psychiatric disabilities is internationally known. NCD's 2000 report From Privileges to 

Rights: People Labeled with Psychiatric Disabilities Speak for Themselves 

(www.ncd.gov/newsroom/publications/privileges.html) was the brainchild of Rae Unzicker. She 

217

was a passionate speaker who wrote articles and made appearances on numerous television talk 

shows. Her contributions were significant. We will miss her dearly. 

NCD Announces Third Fellowship 

March 1, 2001, Washington, D.C. 

In 1999, NCD established the National Disability Fellowship Program in Washington, D.C., to 

identify and develop new leaders with disabilities to enhance NCD’s policy capacity. NCD began 

accepting applications for the third appointment, which will begin January 7, 2002. 

NCD Releases Patients’ Bill of Rights Position Paper 

March 30, 2001, Washington, D.C. 

NCD released its Position Paper on Patients' Bill of Rights Legislation 

(www.ncd.gov/newsroom/publications/patientsbillofrights.html). 

As part of its health care agenda, NCD has long supported the enactment of a comprehensive and 

enforceable patients' bill of rights. In its 1996 report Achieving Independence 

(www.ncd.gov/newsroom/publications/achieving.html), NCD asserted that "all managed care 

plans, including those that serve only privately insured persons, should be required to meet 

federal standards to ensure access to specialty care, adequate grievance and appeals procedures, 

and equitable utilization review criteria." 

People with disabilities and chronic illnesses are often high users of health care services and 

devices and thus are a litmus test for assessing the effectiveness of patients' rights legislation. In 

other words, if a patients' bill of rights protects people with disabilities, it is bound to adequately 

protect the rights of all health care consumers. 

NCD has identified the aspects of a patients' bill of rights that are most important to people with 

disabilities and chronic illnesses. NCD does not endorse any specific legislation. Rather, NCD 

supports any approach that meets the principles that are identified and described in this 

document. NCD’s hope is that members of Congress and their staff, other federal and state 

policymakers, and people with disabilities view this position paper as a valuable tool as Congress 

continues to debate this important issue, 

NCD Participates in Air Carrier Access Act Conference 

May 3, 2001, Washington, D.C. 

NCD participated in a U.S. Department of Transportation–sponsored forum on "Working 

Together to Improve the Air Travel of Passengers with Disabilities." The purpose of this 

invitation-only forum was to provide disability community organizations, representatives of the 

airline industry, airport authorities, airport associations, and government officials, including 

officials from the Federal Aviation Administration and NCD, an opportunity to exchange ideas 

218

and start a dialogue that will enable all parties to work together to better understand the needs of 

travelers with disabilities and explore ways of making accessible air travel a reality for all. 

NCD Makes Hill Visits 

May 2, 2001, Washington, D.C. 

NCD members and staff visited various congressional offices to educate members of Congress 

and staff about NCD’s activities. 

Congressional Accountability Act 

May 10 and 31, 2001 

NCD met with the staff of the Office of Compliance, which was established to implement and 

enforce the Congressional Accountability Act (CAA) of 1995, to discuss how Congress could 

ensure that full coverage of the Americans with Disabilities Act and the Rehabilitation Act is 

extended to all instrumentalities of Congress, including the General Accounting Office, the 

Government Printing Office, and the Library of Congress. 

NCD Participated in IDEA Meeting 

June 4, 2001, Washington, D.C. 

A stakeholder coalition group—Parent Training and Information Centers, National Association 

of Protection and Advocacy Systems, National Association of State Directors of Special 

Education, and Part C/Early Intervention lead agencies—working with the U.S. Department of 

Education, Office of Special Education Programs (OSEP) and NCD in refining OSEP's process 

for monitoring and enforcement of IDEA conducted a collaborative effort to improve results for 

children and youth with disabilities and their families. The stakeholder coalition group developed 

a plan to be carried out and seeks input about both the product and the process that created it. 

NCD Releases Disability Status Report 

June 14, 2001 

NCD released its annual National Disability Policy: A Progress Report 

(www.ncd.gov/newsroom/publications/progressreport2000.html), confirming that despite 

great strides toward equality, people with disabilities still confront major barriers of 

discrimination and suffer the consequences of weak federal enforcement. 

Because of the persistency of these barriers to equal opportunity, NCD believes that the president 

and Congress must set a standard of greater federal commitment to deliver on the promises of 

disability and other civil and human rights laws. 

The report uses as benchmarks the recommendations for change made by disability leaders from 

throughout the country and captured in the 1996 NCD document Achieving Independence: The 

Challenge for the 21st Century (www.ncd.gov/newsroom/publications/achieving.html). These 

219

recommendations—elaborated on in subsequent annual progress reports—reflect a wide array of 

public policy areas designed to advance inclusion, empowerment, and independence of people 

with disabilities of all ages from diverse backgrounds consistent with the vision of the Americans 

with Disabilities Act of 1990 (ADA). 

The report covers the period November 1999 through November 2000, the end of the 2nd 

Session of the 106th Congress. It reviews federal policy activities by major issue areas, noting 

progress where it has occurred and making further recommendations where necessary. The 

recommendations apply to the executive and legislative branches of the Federal Government. 

NCD Releases Accessible Technology Report 

June 21, 2001, Washington, D.C. 

On June 21, 2001, the day Section 508 regulations went into effect, NCD held a news conference 

at the National Press Club in Washington, D.C., to highlight the release of its report The 

Accessible Future (www.ncd.gov/newsroom/publications/accessiblefuture.html. Among other 

things, the report found that access to electronic and information technology (E&IT) is a civil 

right and there is a need for a national accessibility policy. 

Speakers at the event included Bonnie O'Day, Ph.D., NCD member; Ethel D. Briggs, NCD 

executive director; David M. Capozzi, director, Technical and Information Services, U.S. 

Architectural and Transportation Barriers Compliance Board; Cheryl Cumings, minority 

outreach coordinator, Massachusetts Commission for the Blind; and Laura Ruby, program 

manager, Regulatory and Industry Affairs, Microsoft Accessible Technology Group. 

Panelists included Mary Brooner, director of telecommunications and strategy, Global 

Government Relations Office, Motorola; Deborah Cook, director, Washington Assistive 

Technology Alliance; Denice Gant, program director, Hewlett-Packard Accessibility Solutions; 

Susan K. Palmer, associate director, regulatory affairs, Cingular Wireless LLC; Kelly Pierce, 

disability specialist, Cook County State's Attorney's Office; Greg Pisocky, civilian agency 

liaison, Government Systems, Adobe Systems Incorporated; and Michael Takemura, director, 

Accessibility Program Office, COMPAQ Computer Corporation. 

NCD issued an appeal to the Federal Government, private industry, and consumers to join forces 

to increase access to E&IT for people with disabilities. The appeal stems from the reality that 

increased access will improve the quality of life for people with disabilities. A strong partnership 

among the government, private industry, and consumers will accelerate what all Americans 

desire, which is a better life—in this case, for people with disabilities. 

NCD Submits Recommendations to House-Senate Education Conferees 

July 19, Washington, D.C. 

220

Before the first meeting of the House-Senate conference on the No Child Left Behind Act of 

2001 (H.R. 1) education bill, NCD submitted recommendations to all House-Senate conferees. 

The House and Senate bills (H.R. 1, as amended and S. 1) include damaging amendments that 

would allow schools to remove students from the classroom and cease the provision of services 

to these students for behavior violations of school or behavioral code. A review of NCD research 

makes it clear that these amendments would thoroughly undermine the educational gains that 

have been made in this country over more than 25 years for students with disabilities. Both the 

House and Senate “discipline” amendments are inconsistent with research findings of NCD and 

with recommendations NCD previously submitted to Congress through assessment studies of the 

IDEA implementation. Students with disabilities need the guarantee of consistency in their 

education. The social cost of abandoning this guarantee is far too high to justify these 

amendments. 

NCD, educators, students, and their parents have found that IDEA is a good, solid law. If IDEA 

were fully funded and implemented, classroom behavior would not be an issue for debate. 

Therefore, NCD recommended (1) removing the discipline amendments in both bills; (2) 

replacing them with assurances that appropriate training, supports, and services will be provided 

to teachers and students; and (3) accepting the full funding amendment, with language that 

instructs the Department of Education and the Department of Justice to work together to ensure 

full compliance with the law in every state. 

NCD Participates in Government Technology Summit 

July 23, 2001, Washington, D.C. 

NCD delivered remarks at the National Summit on Accessibility for Government IT, which was 

sponsored by the Performance Institute. The presentation highlighted NCD’s report The 

Accessible Future, access to electronic and information technology, which includes the Internet, 

the World Wide Web, and information/transaction machines. 

NCD Releases Position Paper on Supreme Court Ruling in Sandoval 

July 31, 2001, Washington, D.C. 

NCD released its position paper The Sandoval Ruling 

(http://www.ncd.gov/newsroom/publications/sandoval.html) on the U.S. Supreme Court's 

decision in Alexander v. Sandoval and on its implications for litigation under the ADA, Section 

504 of the Rehabilitation Act, and IDEA. 

The Supreme Court of the United States issued a decision in Alexander v. Sandoval, 121 S.Ct. 

1511 (2001), on April 24, 2001. The Sandoval case involved a class action claim brought by nonEnglish-speaking residents of the state of Alabama against the director of the Alabama 

Department of Public Safety. The plaintiff class claimed that the department's offering 

Alabama’s driver’s licensing exams only in English had the effect of discriminating against them 

on the basis of their national origin. The plaintiffs argued that such discrimination violated Title 

VI of the Civil Rights Act of 1964 and the implementing regulations promulgated pursuant to § 

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602 of the Act by the Departments of Justice and Transportation. Section 601 of the Civil Rights 

Act prohibits discrimination on the basis of race, color, or national origin in federally funded 

programs. 42 U.S.C. § 2000d. Section 602 authorizes federal agencies to issue regulations to 

effectuate the requirements of § 601. 42 U.S.C. § 2000d-1. A bitterly divided Court ruled 5 to 4 

that there is no private right of action to enforce the disparate impact regulations promulgated 

under Title VI. That means that private individuals do not have the right to file lawsuits under 

Title VI alleging that they have suffered disparate impact discrimination by recipients of federal 

funds. 

NCD Files Amicus Brief with U.S. Supreme Court 

August 31, 2001, Washington, DC 

NCD filed an amicus curiae brief with the Supreme Court for the respondent in the case Toyota 

Motor Manufacturing, Kentucky, Inc. v. Ella Williams (No. 00-1089) 

(http://www.ncd.gov/newsroom/publications/toyota_amicus.html), which presented the question 

whether “an impairment precluding an individual from performing only a limited number of 

tasks associated with a specific job qualifies as a disability.” Toyota argued that a plaintiff must 

be totally unable to do even modified tasks in order to be “substantially limited” in manual tasks 

and/or working, thus qualifying for ADA protection. NCD argued that Toyota's position 

demonstrates the erroneous view that Congress intended to extend ADA protection only to the 

“truly disabled” (i.e., those who are so severely restricted that they are unable to meet the 

essential demands of daily life). NCD argued that the clear guidelines provided by the Court in 

Sutton v. United Airlines, Inc., 527 U.S. 471 (1999), Murphy v. UPS, 527 U.S. 516 (1999), and 

Albertson's, Inc. v. Kirkingburg, 527 U.S. 555 (1999) would allow a jury to properly find that 

Williams is “disabled” within the meaning of ADA because she is significantly restricted as to 

the condition, manner, and duration of performing manual tasks compared with the average 

person in the general population. 

ADVISORY COMMITTEES 

NCD has four advisory committees. They are the Cultural Diversity Advisory Committee, 

International Watch, Technology Watch, and the Youth Advisory Committee. All NCD advisory 

committees are governed by the Federal Advisory Committee Act (FACA), 5 U.S.C. App. 2, 

which was enacted to promote good government values, such as openness, accountability, and 

balance of viewpoints consistent with administrative efficiency and cost-containment. 

The following is a summary of the activities of NCD’s advisory committees: 

Cultural Diversity Advisory Committee 

Established during FY 2001, the purpose of NCD's Cultural Diversity Advisory Committee 

(www.ncd.gov/newsroom/advisory/cultural/cultural.html) is to provide advice and 

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recommendations to NCD on issues affecting people with disabilities from culturally diverse 

backgrounds. Specifically, the committee will help identify issues, expand outreach, infuse 

participation, and elevate the voices of underserved and unserved segments of the nation's 

population. This will help NCD develop federal policy that will address the needs and advance 

the civil and human rights of people from diverse cultures. 

This committee conducted its first meeting on July 31, 2001. 

International Watch 

The purpose of International Watch 

(www.ncd.gov/newsroom/advisory/international/international.html) is to share information on 

international disability issues and to advise NCD on the development of policy proposals that 

will advocate for a foreign policy that is consistent with the values and goals of the Americans 

with Disabilities Act. International Watch has two working groups: International Convention on 

the Human Rights of People with Disabilities and Inclusion of People with Disabilities in 

Foreign Assistance Programs. 

Meeting dates:


September 20, 2001


September 6, 2001


July 19, 2001


June 29, 2001


May 30, 2001


May 4, 2001


April 26, 2001


April 12, 2001


March 14, 2001


March 8, 2001


February 15, 2001


Technology Watch 

The purpose of Technology Watch 

(www.ncd.gov/newsroom/advisory/technology/technology.html) is to assist NCD in monitoring, 

analyzing, and promoting technology access issues. The intent is to make the information 

superhighway accessible to and usable by people with disabilities by recommending government 

policies and industry practices that facilitate this vision. 

Although Tech Watch did not meet formally during the fiscal year, it did provide advice to NCD 

on the development of its report The Accessible Future 

(www.ncd.gov/newsroom/publications/accessiblefuture.html). 

Youth Advisory Committee 

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The purpose of the Youth Advisory Committee 

(www.ncd.gov/newsroom/advisory/youth/youth.html) is to provide advice to NCD on various 

issues such as NCD's planning and priorities. NCD is seeking this type of input to make sure 

NCD's activities and policy recommendations respond to the needs of youth with disabilities. 

Meeting Dates: 

August 6, 2001 

March 14, 2001 

CONGRESSIONAL TESTIMONY 

In FY 2001, NCD provided formal testimony to Congress on two occasions:


February 28, 2001, testimony submitted to the U.S. House of Representatives.


NCD testified (www.ncd.gov/newsroom/testimony/01testimony.html) before the House


Committee on Government Reform on the Individuals with Disabilities Education Act.


April 18, 2001, testimony submitted for the record of the U.S. Senate.


NCD submitted written testimony (www.ncd.gov/newsroom/testimony/bristo_4-18-01.html) on


patients’ rights principles to the Senate Committee on Finance hearing (March 27) on Society’s


Great Challenge: The Affordability of Long-Term Care.


INFORMATION DISSEMINATION 

Information dissemination continued to grow at record levels for NCD, as it responded to 

thousands of telephone calls, e-mail messages, and letters from concerned people and 

organizations about disability issues. In addition, NCD published its monthly newsletter, NCD 

Bulletin, which reaches more than 15,000 people and organizations. All NCD publications are 

available in alternative formats, such as braille, large print, and audiocassette. This information is 

also available at NCD’s award-winning Web site (www.ncd.gov), which now receives more than 

two million hits per year. 

NCD QUARTERLY MEETINGS 

As required by Section 400(3)(c) of the Rehabilitation Act of 1973, as amended, NCD met on 

four occasions during FY 2001. In addition, NCD also met once by conference call. 

August 6–7, 2001, Washington, DC 

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July 11, 2001, conference call


May 21–23, Arlington, VA


February 5–6, 2001, Myrtle Beach, SC


December 4–5, 2000, San Diego, CA


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Appendix


Mission of the National Council on Disability


Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency with 15 members 

appointed by the president of the United States and confirmed by the U.S. Senate. The overall 

purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal 

opportunity for all individuals with disabilities, regardless of the nature or significance of the 

disability, and to empower individuals with disabilities to achieve economic self-sufficiency, 

independent living, and inclusion and integration into all aspects of society. 

Specific Duties 

The current statutory mandate of NCD includes the following: 

•	 Reviewing and evaluating, on a continuing basis, policies, programs, practices, and 

procedures concerning individuals with disabilities conducted or assisted by federal 

departments and agencies, including programs established or assisted under the 

Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities 

Assistance and Bill of Rights Act, as well as all statutes and regulations pertaining to 

federal programs that assist such individuals with disabilities, in order to assess the 

effectiveness of such policies, programs, practices, procedures, statutes, and regulations 

in meeting the needs of individuals with disabilities. 

•	 Reviewing and evaluating, on a continuing basis, new and emerging disability policy 

issues affecting individuals with disabilities at the federal, state, and local levels and in 

the private sector, including the need for and coordination of adult services, access to 

personal assistance services, school reform efforts and the impact of such efforts on 

individuals with disabilities, access to health care, and policies that act as disincentives 

for individuals to seek and retain employment. 

•	 Making recommendations to the president, Congress, the secretary of education, the 

director of the National Institute on Disability and Rehabilitation Research, and other 

officials of federal agencies about ways to better promote equal opportunity, economic 

self-sufficiency, independent living, and inclusion and integration into all aspects of 

society for Americans with disabilities. 

•	 Providing Congress, on a continuing basis, with advice, recommendations, legislative 

proposals, and any additional information that NCD or Congress deems appropriate. 

•	 Gathering information about the implementation, effectiveness, and impact of the 

Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.). 

•	 Advising the president, Congress, the commissioner of the Rehabilitation Services 

Administration, the assistant secretary for Special Education and Rehabilitative Services 

within the Department of Education, and the director of the National Institute on 

Disability and Rehabilitation Research on the development of the programs to be carried 

out under the Rehabilitation Act of 1973, as amended. 

•	 Providing advice to the commissioner of the Rehabilitation Services Administration with 

respect to the policies and conduct of the administration. 

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•	 Making recommendations to the director of the National Institute on Disability and 

Rehabilitation Research on ways to improve research, service, administration, and the 

collection, dissemination, and implementation of research findings affecting persons with 

disabilities. 

•	 Providing advice regarding priorities for the activities of the Interagency Disability 

Coordinating Council and reviewing the recommendations of this council for legislative 

and administrative changes to ensure that such recommendations are consistent with 

NCD’s purpose of promoting the full integration, independence, and productivity of 

individuals with disabilities. 

•	 Preparing and submitting to the president and Congress an annual report titled National 

Disability Policy: A Progress Report. 

International 

In 1995, NCD was designated by the Department of State to be the U.S. government’s official 

contact point for disability issues. Specifically, NCD interacts with the special rapporteur of the 

United Nations Commission for Social Development on disability matters. 

Consumers Served and Current Activities 

Although many government agencies deal with issues and programs affecting people with 

disabilities, NCD is the only federal agency charged with addressing, analyzing, and making 

recommendations on issues of public policy that affect people with disabilities regardless of age, 

disability type, perceived employment potential, economic need, specific functional ability, 

veteran status, or other individual circumstance. NCD recognizes its unique opportunity to 

facilitate independent living, community integration, and employment opportunities for people 

with disabilities by ensuring an informed and coordinated approach to addressing the concerns of 

people with disabilities and eliminating barriers to their active participation in community and 

family life. 

NCD plays a major role in developing disability policy in America. In fact, NCD originally 

proposed what eventually became the Americans with Disabilities Act. NCD’s present list of key 

issues includes improving personal assistance services, promoting health care reform, including 

students with disabilities in high-quality programs in typical neighborhood schools, promoting 

equal employment and community housing opportunities, monitoring the implementation of the 

ADA, improving assistive technology, and ensuring that those persons with disabilities who are 

members of diverse cultures fully participate in society. 

Statutory History 

NCD was initially established in 1978 as an advisory board within the Department of Education 

(P.L. 95-602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed NCD into 

an independent agency. 

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