National Disability Policy: 

A Progress Report

National Council on Disability

March 31, 2009
National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

National Disability Policy: A Progress Report

This report is also available in alternative formats and on the award-winning National 

Council on Disability (NCD) Web site (www.ncd.gov).

Publication date: March 31, 2009

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

Administration, as this and all NCD documents are not subject to the A-19 Executive 

Branch review process.
National Council on Disability 

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families. 

1

Letter of Transmittal 

March 31, 2009 

The President 

The White House 

Washington, DC 20500 

Dear Mr. President: 

The National Council on Disability (NCD) is required by Section 401(b) of the Rehabilitation 

Act of 1973, as amended, to submit annually to the President and Congress a report 

assessing the status of the nation in achieving policies that guarantee equal opportunity for 

all individuals with disabilities and that empower individuals with disabilities to achieve 

economic self-sufficiency, independent living, and inclusion and integration into all aspects 

of society. 

To that end, and on behalf of the Council’s 15 members, I am pleased to submit the 

enclosed report, “National Disability Policy: A Progress Report.” This report focuses on 

the current quality of life of people with disabilities in America and the emerging trends 

that should be factored into both the design and evaluation of the Federal Government's 

disability policies and programs in the coming years. 

In preparing this report and developing our recommendations, NCD solicited and 

received input from hundreds of disability community stakeholder organizations and 

persons with disabilities from across the country. In addition, we analyzed several 

national disability-related data sources and also drew from NCD’s current research and 

the studies of other government agencies. Based on our findings, this report provides 

17 specific recommendations to address many of the disability community’s most 

pressing concerns, as well as areas of disparity in the treatment of people with disabilities. 

Following those recommendations are several principles for reviewing and modernizing 

government programs to better serve people with disabilities and for promoting a more 

integrated, inclusive, and cost-effective approach to Federal disability policy. 

In addition to the more than 50 million Americans with disabilities, the United States 

faces a rapidly approaching demographic shift to an older population, with an attendant 

increase in the incidence of disability. Given this impending increase, as well as the 

significant impact of the current economic crisis on people with disabilities, who even in 

the best of times experience significant socioeconomic disparities, now is the time to 

develop a bold, coherent, comprehensive approach to disability policy within the Federal 

Government. In past economic recessions, government programs aimed at ensuring the 

full inclusion of people with disabilities into society have fared poorly. Your recent and 

future efforts to stimulate the economy offer us a great opportunity to ensure that all 
government initiatives thoughtfully incorporate the needs of people with disabilities and 

their families. 

NCD continues to stand ready to assist the Administration and Congress in identifying 

opportunities to improve our nation's disability policy, and to enhance the quality of life, 

independence, and full inclusion of people with disabilities into all aspects of society. 

Sincerely, 

John R. Vaughn 

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.) 

2
National Council on Disability Members and Staff 

Members 

John R. Vaughn, Chairperson 

Chad Colley, Vice Chairperson 

Patricia Pound, Vice Chairperson 

Victoria Ray Carlson 

Robert R. Davila, Ph.D. 

Graham Hill 

Marylyn Howe 

Kathleen Martinez 

Lisa Mattheiss 

Heather McCallum 

Katherine O. McCary 

Lonnie Moore 

Anne M. Rader 

Linda Wetters 

Tony Williams 

Staff 

Michael C. Collins, Executive Director 

Martin Gould, Ed.D., Director of Research 

Mark S. Quigley, Director of External Affairs 

Julie Carroll, Senior Attorney Advisor 

Joan M. Durocher, Senior Attorney Advisor 

Lisa Grubb, Special Assistant to the Executive Director 

Geraldine Drake Hawkins, Ph.D., Senior Program Analyst 

Anne C. Sommers, Legislative Affairs Specialist 

Stacey S. Brown, Staff Assistant 

Carla Nelson, Secretary 

3
Acknowledgments 

NCD expresses its appreciation for the contributions of the many people with 

disabilities, their families, and service providers around the country who provided input 

for this report. Their time and effort greatly enriched our understanding of the issues 

facing people with disabilities and will help to advance U.S. disability policy. 

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Table of Contents 

EXECUTIVE SUMMARY ................................................................................................ 7

Recommendations .......................................................................................................... 9

CHAPTER 1: INTRODUCTION .................................................................................... 17

CHAPTER 2: EMERGING TRENDS AND CHALLENGES .......................................... 21

Emergency Preparedness and Homeland Security....................................................... 23

International Convention on the Rights of Persons with Disabilities.............................. 25

Health Care ................................................................................................................... 26

Home- and Community-Based Services ....................................................................... 29

Mental Health ................................................................................................................ 32

Mental Health Services for Veterans and Service Members ......................................... 34

Housing......................................................................................................................... 36

Employment .................................................................................................................. 39

Transportation ............................................................................................................... 45

Education ...................................................................................................................... 48

Technology.................................................................................................................... 52

Coordination.................................................................................................................. 55

CHAPTER 3: FULL CITIZENSHIP—EMERGING ISSUES AND THE ROLE OF 

FEDERAL GOVERNMENT........................................................................................... 57

The Current Economic Crisis ........................................................................................ 57

Future Policy Directions ................................................................................................ 59

CHAPTER 4: CONCLUSION........................................................................................ 65

APPENDIX 1: MISSION OF THE NATIONAL COUNCIL ON DISABILITY.................. 69

Overview and Purpose.................................................................................................. 69

Specific Duties .............................................................................................................. 69

Statutory History............................................................................................................ 71

APPENDIX 2: STATISTICAL SOCIAL INDICATORS.................................................. 73

APPENDIX 3: LIVABLE COMMUNITY DISCUSSION AND EXAMPLES.................... 77

From “Livable Communities for Adults with Disabilities” (2004) .................................... 78

From “Creating Livable Communities” (2006) ............................................................... 78

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From “Inclusive Livable Communities for People with Psychiatric Disabilities” (2008).. 79

APPENDIX 4: THE ROLE OF GOVERNMENT IN THE PERVASIVE POVERTY OF 

PEOPLE WITH DISABILITIES ..................................................................................... 83

APPENDIX 5: PRIVATE INITIATIVES.......................................................................... 85

Corporate Culture.......................................................................................................... 85

Recruitment and Retention............................................................................................ 86

Reasonable Accommodations....................................................................................... 87

Education ...................................................................................................................... 87

APPENDIX 6: INTERGOVERNMENTAL REVIEW AND EXAMPLES ......................... 89

Emergency Response................................................................................................... 89

Intergovernmental Programs Serving Low-Income People ........................................... 89

Overlapping, Intergovernmental Programs.................................................................... 89

ENDNOTES .................................................................................................................. 91

 

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Executive Summary 

In recent years, the National Council on Disability (NCD) Progress Report has been a 

retrospective review and analysis of Federal programs for people with disabilities. For 

this Progress Report, NCD members have chosen to depart from a retrospective 

approach, and, instead, will focus on the current status of the quality of life of people 

with disabilities, and the emerging trends that warrant changes in the Federal 

Government's disability policies and programs. The worldwide economic recession, the 

unprecedented changing demographics in America, and the advent of a new 

Administration and Congress taking bold new directions in fiscal policy, offer an 

opportunity for a proactive report on the state of affairs in the disability arena. This 

report suggests ways to address identified issues that are consistent with a fiscal policy 

aimed at unlocking the potential of America and thereby improving the quality of life and 

opportunities for the American people. It is our hope that these recommendations will 

ensure that the identified needs of people with disabilities and their families are not 

overlooked, as so often has happened in previous periods of economic recovery. 

Therefore, this report emphasizes opportunities to improve the quality of life of the 

growing number of citizens with disabilities, the emerging trends warranting changes in 

the government's response, and recommendations for reviewing and modernizing the 

way the Federal Government approaches disability policy. 

In preparing this report, NCD solicited input from disability community stakeholders from 

across the country, analyzed national data sources, and drew from NCD’s current 

reports and the studies of other government agencies in an attempt to paint a picture of 

the current status of people with disabilities in America. This report describes many of 

the personal challenges of living with a disability, emerging issues and trends 

concerning people with disabilities, how well government programs address the 

emerging needs of people with disabilities, and how funding resources could be better 

spent to address those needs. Only recently has national data begun to provide the 

information needed to develop an understanding of the status of the quality of life of 

people with disabilities in America, and many gaps in the data remain. Drawing on a 

7
variety of sources of information, it is possible to glean that, as our society becomes 

more accessible, some people with disabilities are participating more in all aspects of 

community life. Strides have been made in access to transportation, education, 

communications, technology, and employment. Other factors, important to quality of life, 

however, impede progress toward full citizenship, such as the lack of affordable, 

accessible housing, difficulty breaking into the job market, poor access to health care, 

the institutional bias in Medicaid, access barriers to technology, and negative public 

attitudes about people with disabilities. 

In many instances, improvements in quality of life for people with disabilities can be 

attributed to government programs, particularly those involving intergovernmental 

partnerships as well as partnerships with the private and volunteer sectors. Examples 

from the livable communities’ model demonstrate the potential for such partnerships to 

improve life for all citizens—people with disabilities and aging baby boomers, in 

particular. 

Conversely, many of the intractable problems for people with disabilities can be 

attributed to government programs and policies. Research reveals program 

fragmentation, lack of coordination, government policies that conflict with one another, 

and counterproductive eligibility and benefits restrictions. Certain government policies 

actually have the effect of forcing people to live in institutions, prevent people from 

working, and impede achievement of the overarching goals of the Americans with 

Disabilities Act (ADA), including equality of opportunity, full participation, independent 

living, and economic self-sufficiency. 

Given the rapidly approaching demographic shift to an older population, the increase in 

the incidence of disabilities that will ensue, and the impact of the current economic crisis 

on people with disabilities, the time is now for Federal agencies and policymakers to 

establish the policy directions to respond to the broad-ranging implications of this 

increase in disability for individuals and for society. This report provides 17 specific 

recommendations to address today’s most pressing problems for people with 

disabilities. These recommendations are followed by a set of principles for reviewing 

8
and modernizing government programs to better serve people with disabilities, become 

more cost-effective, and promote a more integrated and inclusive society that is 

prepared for the changes ahead. 

Recommendations 

The National Council on Disability recommends the following: 

1. The U.S. Department of Homeland Security (DHS) should establish and 

appropriately staff a department-wide Office on Disability that is responsible for: 

training all DHS employees about including and serving people with disabilities; 

integrating disability issues throughout the Department; enforcing compliance 

with the Americans with Disabilities Act (ADA) by local and state governments; 

and increasing collaboration between regional DHS staff and disability 

organizations. 

2. The President should sign the United Nations Convention on the Rights of 

Persons with Disabilities (CRPD). 

3. The President should establish a commission to identify the gaps in health care 

financing for people with disabilities over the life span, which include gaps that 

baby boomers will encounter as they age and acquire chronic health conditions 

and disabilities. The commission should develop recommendations for a more 

comprehensive, cost-effective health care financing system that better meets the 

health care needs of an aging society, and that is based on the following 

principles: 

● People with disabilities or chronic health conditions should have access to 

health coverage throughout the life span; 

● People with disabilities or chronic health conditions should have access to 

health wellness and prevention services to maintain good health and avoid 

acquiring secondary health conditions; 

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● People with disabilities or chronic health conditions should have access to 

home- and community-based health services and supports that prolong 

health and active, independent living; and 

● People with disabilities or chronic health conditions should have equal 

access to health care providers of their choice. 

4. Congress should pass, and the President should sign, the Community Choice 

Act and make the Money Follows the Person program available in all states. 

Furthermore, the Secretary of the U.S. Department of Health and Human 

Services should convene a high-level task force to review all aspects of the 

Federal and state responses to the Olmstead decision and develop 

recommendations to eliminate the barriers preventing the transition of funding to 

home- and community-based services. 

5. An evidence-based approach to integrated care should be the standard of 

practice in primary care through the following specific actions: 

● The President should instruct all Federal agencies to identify and eliminate 

all barriers to the appropriate payment for interventions that support 

evidence-based, integrated care provided by teams of appropriate 

clinicians. For example, current Medicaid auditing procedures in the 

Centers for Medicare and Medicaid Services (CMS) regional offices that 

deny payment for a primary care visit and a mental health visit on the 

same day should be eliminated. 

● Congress should instruct CMS to reverse its current efforts to narrow the 

definition of “case management” activities in connection with evidencebased models of integrated care. Instead, CMS should broaden its 

definition specifically to recognize the key role that evidence shows case 

management and care coordination play in the coordinated, team-based 

delivery of integrated mental health, substance abuse, and primary care. 

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● The Substance Abuse and Mental Health Services Administration and the 

Health Resources and Services Administration should require that all of 

their grantees (both block grant and discretionary programs) demonstrate 

that they are adopting evidence-based approaches to integrated care 

throughout their federally funded initiatives. Criteria derived from 

successful integrated models of care should be embedded in the Federal 

oversight of these grant programs and should support both ongoing quality 

improvement and implementation science in their development and 

application. 

6. The Department of Defense and the Veterans Administration should develop a 

plan to ensure continuous availability of mental health services for all service 

members and veterans. The plan must ensure that service members with posttraumatic stress disorder and traumatic brain injury, which may manifest after 

separation from the military, have continuous access to mental health services 

both before and after they separate from the military. 

7. Congress should enact legislation requiring lending institutions to mandate 

compliance with the accessibility provisions of the Fair Housing Act and the ADA, 

including its accessibility guidelines, in all real estate and commercial loans, 

including loans for construction of multifamily housing. Such legislation should 

require the U.S. Department of Housing and Urban Development to produce an 

annual report of the quantity and quality of affordable housing (including LowIncome Housing Tax Credit properties) accessible to persons with disabilities, 

including occupancy rates by persons with disabilities. 

8. Congress should fund a series of antistigma demonstration projects targeted to: 

● the general public, designed to address the lack of knowledge about 

challenges to employment for persons with disabilities; 

● employers and persons with disabilities, aimed at achieving a better match 

of job seekers to employers; and 

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● transition-age youth, designed to encourage them to consider careers in 

the areas of science, technology, engineering, and mathematics, and to 

expose such youth to the careers and opportunities these and other highgrowth, high-income disciplines entail. 

9. The President should issue an Executive Order requiring all Federal agencies to 

educate hiring managers and human resource personnel about the benefits of 

hiring people with disabilities, and to also educate them about the recently 

revised Schedule A civil service hiring authority, which makes it easier for 

Federal agencies to hire individuals with significant disabilities. The Executive 

Order should urge all Federal agencies to hire and advance more individuals with 

disabilities across the Federal workforce, including in the Senior Executive 

Service, with the goal of reaching the Equal Employment Opportunity 

Commission’s aim of ensuring that 2 percent of the Federal workforce include 

employees with disabilities by the year 2010. 

 Additionally, to better monitor the progress of these efforts, NCD recommends 

that Congress require the Office of Personnel Management to include statistics 

about employees with disabilities in its annual report to Congress on the Federal 

Equal Opportunity Recruitment Program. 

10. The Centers for Medicare and Medicaid Services and the Social Security 

Administration should work together closely to: (1) modify existing program 

regulations to uncouple Medicare and Medicaid coverage from Supplemental 

Security Insurance/Social Security Disability Insurance cash payments; (2) 

identify and eliminate the many employment disincentives currently built into the 

Medicaid waiver, Medicaid buy-in, and Health Insurance Premium Payment 

programs; (3) expand benefits counseling services to include the full range of 

financial education and advisement services, and to clarify that helping people to 

retain benefits while working is not in any way antagonistic to the goals of 

facilitating employment; and (4) work collaboratively with public and private 

insurance providers and business representatives to design public-private 

12
insurance partnerships that will expand access to health care from sources other 

than Medicaid or Medicare for individuals with disabilities. 

11. Congress should proceed with reauthorization of the Workforce Investment Act, 

maintaining the Rehabilitation Act as a separate section with a separate funding 

stream. This reauthorization should: (a) include dedicated funding for the 

infrastructure of the One-Stop Career Centers; (b) continue expansion of the 

Disability Navigator and Customized Employment demonstration projects; (c) 

require the development of performance standards that measure the number of 

persons with disabilities who are served in the One-Stop system and their ability 

to access and benefit from One-Stop services, which would include access to 

assistive technology and rehabilitation engineering services; and (d) require in 

the Rehabilitation Act (section IV) that Vocational Rehabilitation services be 

made available to eligible youth no later than three years before an adolescent or 

young adult exits from secondary education. 

12. The Department of Transportation should: evaluate the effectiveness of the new 

pilot transportation initiatives for people with disabilities; develop permanent 

funding mechanisms to expand effective approaches across the country; and 

propose to Congress ongoing funding mechanisms to increase transportation 

options for the growing population of people who do not drive because of 

disabilities. 

13. Congress should pass legislation requiring vehicles, including hybrid vehicles, to 

meet a minimum sound standard so that pedestrians who are blind and who rely 

on listening for safe travel can maintain mobility and independence. The 

legislation should direct the Secretary of Transportation to, within one year of 

passage, promulgate standards for the minimum sound level required to enable 

blind pedestrians to determine the speed, distance, and direction of travel of 

motor vehicles. 

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14. Congress should mandate that the Department of Education’s Office of Special 

Education and Rehabilitative Services, the National Institute on Disability and 

Rehabilitation Research, and state education and state Vocational Rehabilitation 

agencies conduct rigorous school-to-work transition evaluation studies. The 

studies should identify the transition program components that directly correlate 

with improved employment and postsecondary education outcomes for transitionage youth. 

15. Congress should: 

● Expeditiously reauthorize and fully fund the No Child Left Behind Act 

(NCLBA) to maintain academic accountability requirements and high 

expectations for students with disabilities, provide supports and incentives 

for teachers to offer differential instruction of rigorous content, begin to 

align the data elements and definitions of NCLBA and the Individuals with 

Disabilities Education Improvement Act (IDEIA), and expand the age for 

provision of transition services; and 

● Fund the Advisory Commission on Accessible Instructional Materials in 

Postsecondary Education for Students with Disabilities, as established in 

the Higher Education Opportunity Act of 2008, which authorizes grants to 

increase accessibility of college textbooks and Web site and distance 

learning information. 

16. The Assistant Secretary of Education for Special Education and Rehabilitative 

Services should conduct an extensive dialogue with all state and territorial 

Vocational Rehabilitation agencies and state education agencies to determine in 

detail how and when they provide assistive technology, how they assess the 

implications of current and evolving technology for client or student assessment 

and goal-setting, and how they ensure that key personnel keep abreast of 

developments in assistive technology. Depending on the results of this 

assessment, the Assistant Secretary should determine whether the existing 

regulations implementing the statutory authorities for the use of AT adequately 

14
reflect its importance, and if not, should propose appropriate amendments when 

Congress considers reauthorizing the Vocational Rehabilitation Act, the Assistive 

Technology Act, and the Individuals with Disabilities Education Act. 

 Congress should pass legislation that requires access to telephone and 

television-type equipment and services available through the Internet; decoder 

circuitry in all video programming devices; captioning of Internet-based television; 

audio description of television; and access to emergency broadcasts. The U.S. 

Access Board should adopt updated electronic and information technology and 

telephone guidelines to ensure increased accessibility of this technology to 

people with disabilities. The Federal Communications Commission should adopt 

regulations for ensuring that high-definition television will be fully accessible to 

persons with visual and hearing disabilities. 

17. The President should establish, through Executive Order, an Interagency 

Disability Coordinating Council (Interagency Council), with a designated 

executive agency chair and required participation of all Federal agencies serving 

people with disabilities. The Interagency Council should be charged with 

submitting an annual report identifying instances of policy conflict or Federal 

disability-related program inconsistencies that interfere with the achievement of 

the overarching goals of the ADA, including equality of opportunity, full 

participation, independent living, and economic self-sufficiency. The Council 

should be charged with developing recommendations for the elimination of the 

conflict or inconsistency in all cases in which it substantially affects the lives of 

citizens with disabilities. 

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CHAPTER 1: Introduction 

It has been nearly two decades since the Americans with Disabilities Act (ADA) 

prohibited disability discrimination in employment, access to government goods and 

services, and access to places of public accommodations. It has been 10 years since 

amendments to the Rehabilitation Act required equal access to government electronic 

and information technology. It has been 12 years since amendments to the 

Communications Act required access to telecommunications products and services. 

People with disabilities report improvements in access to commercial goods and 

services, public transportation, and telecommunications,1 particularly access as a result 

of telephone relay services. Among some categories, the education gap between 

people with disabilities and people without disabilities is narrowing, and people with 

disabilities are attending postsecondary institutions in greater numbers.2

 Education 

supports and services for students with disabilities are now available at most of the 

nation’s postsecondary institutions. People with disabilities report finding it easier to 

obtain reasonable accommodations if they are employed. 

However, challenges and barriers remain that must be resolved. People with disabilities 

still find it difficult to break into the job market, and report that employment 

discrimination generally occurs during the hiring process.3 People with disabilities are 

more likely to be in poor health, and report going without needed medical care more 

often than people without disabilities.4

 People with disabilities are nearly three times as 

likely as people without disabilities to live in poverty—the same ratio as before passage 

of the ADA.5 

There is a surprising absence of ongoing, systematic data collection about the quality of 

life of people with disabilities. This lack of data has led to significant knowledge gaps 

about the impact of the civil rights laws and government programs designed to improve 

opportunities for people with disabilities. Even less is known about the well-being of 

people with disabilities as compared to people without disabilities. Social indicator 

systems, currently used to gather information about the American population, either 

underemphasize or do not include people with disabilities.6

 Although most national data 

17
collections over the past few decades have been sensitive to variations by race and 

gender, the same has not been true for disability. 

In light of the absence of critical disability data, the National Council on Disability (NCD) 

undertook a year-long study to identify valid Federal data and to describe the status of 

the U.S. population of Americans with disabilities. In April 2008, NCD released “Keeping 

Track: National Disability Status and Program Performance Indicators” (hereinafter 

“Keeping Track”), which provides a set of statistical social indicators that can measure 

the progress of people with disabilities in important areas of life over time.7 The report 

identifies 18 indicators, spanning seven domains of importance to people with 

disabilities (e.g., employment, education, health status and health care, financial status 

and security, leisure and recreation, personal relationships, and crime and safety. See 

Appendix 2, Table A2.1). The selected indicators meet the following criteria: 

● Data can be obtained relatively easily from existing government sources; 

● The indicator is measured relatively frequently (annually or biannually); 

● The survey has an adequate sample size to be statistically reliable; 

● Comparison data for people with and without disabilities are available; and 

● The identifier for people with disabilities is not based solely on “work limitation” 

questions, which tend to confound data about people with disabilities who work. 

For future NCD Progress Reports, data for the set of topical indicators proposed in 

“Keeping Track” will be updated. These data will enable policymakers to measure the 

progress of people with disabilities in important life domains over time. 

In preparation for this “National Disability Policy: A Progress Report,” and building on 

“Keeping Track,” through a nationally distributed Emerging Trends Public Consultation,8

NCD solicited specific input from people with disabilities. People were asked to 

comment on the personal challenges of living with a disability, the impact of attitudinal 

barriers on opportunities, how well government programs address the emerging needs 

of people with disabilities, and how funding resources could be better spent to address 

18
those needs. In response, NCD received more than 400 submissions, including 

comments from parents, students, workers, advocates, service providers, individuals, 

and organizations. Nearly all of the quality-of-life domains, identified as important by 

stakeholders during “Keeping Track,” surfaced again as being important to people with 

disabilities who responded to the public consultation. 

The purpose of this Progress Report is to: 

● Provide an overview of the status of the quality of life for people with disabilities 

in the United States based on the voice of people with disabilities and the most 

current existing data; 

● Identify emerging trends, systemic barriers, and challenges facing people with 

disabilities; 

● Identify government programs and services that are effective in contributing to 

improved quality of life for people with disabilities, assess the potential of existing 

programs and services to meet the needs of people with disabilities in light of 

emerging trends; and 

● Identify barriers that prevent access for people with disabilities or that result in 

failures to meet the needs of people with disabilities. 

The report will offer principles and program policy approaches for reviewing Federal 

programs to incorporate successful practices into the government’s use of resources for 

improving quality of life for people with disabilities, and will set forth specific 

recommendations for the Administration and Congress to address many of the most 

pressing issues of concern to Americans with disabilities. 

The recommendations in this report are based on the premise that the relationship 

between disability and disadvantage is not inevitable, nor is it a consequence of 

disability itself. Rather, the disadvantages that result from disability stem from long-held 

stereotypes, attitudinal barriers, conflicting government programs, and environmental 

barriers that can, and should be, broken down. Coming as it does at a turning point in 

19
public policy, as a new Administration takes office, and as the current economic crisis 

demands new solutions to old and new problems, this report synthesizes key data, 

trends, and public input, and sets forth recommendations to help our nation chart a 

course toward achieving the goals of equality and full participation that we all share. 

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CHAPTER 2: Emerging Trends and Challenges 

This section is based on NCD’s public consultation on emerging trends, public input at 

NCD meetings, and recent NCD reports, and addresses two questions: (1) What did we 

learn and what can we say about the status of people’s quality of life regarding personal 

challenges of living with a disability; individual barriers to full participation; attitudinal 

challenges that still exist; and systemic challenges in many quality of life areas? and (2) 

What are the most pressing issues and challenges facing people with disabilities, 

particularly in relation to their quality of life? While many of the issues discussed by 

people with disabilities overlap and are interrelated, the following subsections are 

presented by topic. Each subsection begins with salient comments by stakeholders, and 

follows with the most current information available on each topic, and NCD's specific 

recommendations. 

“[We] have a hard time because of society’s barriers and not our 

disabilities.” 

“[T]he most negative impacting issue people face is stigma; people 

meet the disability before they meet you.“ 

“Until programs are designed [and] based upon what each individual 

with a disability needs, the system will continue to fail—by design.” 

(Public Comments)9 

NCD’s compilation and review of information revealed anecdotal accounts that included 

ongoing challenges, disappointments, obstacles, and some policies and practices that 

seem to be working. Overall, the comments received suggested overlaps and linkages 

among individual and community dimensions affecting quality-of-life and content topics 

that people with disabilities consider important. The commenters10 exposed unmet 

needs attributed, at least in part, to fragmented systems of Federal programs and 

services. Commenters also called attention to the limited use of, and the lack of, 

21
meaningful opportunities to provide input regarding policies and practices that affect 

their lives. 

After a tally of topic frequency, NCD identified key topics that commenters discussed 

most often—attitudes, health care and insurance, housing, employment, transportation, 

and education.11 Other topics of importance to people with disabilities, which were 

identified through public comments and presentations at NCD public meetings, included 

emergency preparedness and homeland security, international issues, home- and 

community-based services and supports, mental health services for veterans and 

service members, and access to technology. The identified topics were consistent with 

the “Keeping Track” study and more than a decade of NCD’s work priorities. 

“There is need to change the American culture of ‘me-me’ to a 

‘connectedness culture’ of us all together.” 

“Many people think that just because I’m using a cane that I’m 

worthless.” 

“We must be free of the Homebound Rule/Home Care to function 

within our communities of choice as we wish.” 

“Programs need to be designed no longer to deny services with the 

focus being institutionalization or based on society’s concept that 

people with disabilities have no value and are a drain on society.” 

(Public Comments) 

The most common thread involved encounters with an array of attitudinal barriers. 

Negative public attitudes were a factor in nearly all issues discussed. Across various 

topics, commenters told NCD about indifference, rudeness, and unfavorable attitudes 

toward people with disabilities. 

22
Many commenters indicated difficulty in separating various topics they deemed 

important. For example, numerous commenters linked health care challenges with 

topics of insurance and employment. They also related those topics to the dimension of 

choice, and the pressing economic issue of health care coverage for all Americans. 

Other people identified overlaps in barriers to transportation, employment, housing (for 

rental or purchase), achieving individual aspirations, financial means, spontaneity, 

community inclusion, and integration, including consideration in emergency situations. 

Emergency Preparedness and Homeland Security 

“It is inexcusable to think that in an emergency situation, [people 

across disability types] will be left to try to figure out what is 

happening.” 

“The first step is to realize that disabled people need to evacuate in 

the first wave. They can’t wait and they [also] must take greater 

responsibility for preparedness.” (Public Comments) 

Scientists report an increase in the number of natural disasters, such as droughts, 

tsunamis, hurricanes, typhoons, and floods, over the past 25 years.12 In 1980, only 

about 100 such disasters were reported per year, but that number has risen to more 

than 300 a year since 2000. The increase is expected to continue, and storm-related 

disasters are predicted to increase in intensity.13 

Improving emergency preparedness, response, and recovery for people with disabilities 

has been a major priority for NCD for several years.14 As a result of its earlier work, 

Congress appropriated additional funding for NCD to carry out specific activities that will 

enhance the ability of the emergency preparedness and response network to meet the 

needs of people with disabilities in future disasters.15 To assist in meeting these 

responsibilities, NCD conducts extensive, ongoing information-gathering from 

stakeholders. People with disabilities continue to report to NCD about the ongoing 

challenges associated with both natural and manmade disasters and subsequent 

23
recovery efforts, and the need for the Federal Government’s continued involvement in 

homeland security planning and policymaking. 

Homeland security has become a significant component of citizen safety, which was 

one of the important quality-of-life indicators identified by people with disabilities during 

NCD’s “Keeping Track” research. Safety is typically associated with freedom from crime 

or abuse, but people with disabilities are increasingly concerned about surviving and 

recovering from manmade and natural disasters. 

Through the inclusion of people with disabilities in stakeholder planning and simulations 

of disaster efforts, NCD has identified gaps in civil defense and public health 

arrangements. The resources have been identified that are needed to make facilities 

and information fully accessible in emergencies at local, regional, and national levels.16

NCD has identified gaps such as an inadequate number of emergency shelters that can 

accommodate people with disabilities, a shortage of accessible vehicles during 

evacuations, a lack of accessible temporary housing, and broadcast information that is 

not accessible to all people with disabilities. Other gaps in homeland security 

arrangements include ways to obtain replacement durable medical supplies and 

assistive technology, medications, medical care, and personal assistance during 

periods of evacuations. These are just some of the issues that must be addressed by 

DHS as it establishes department-wide general procedures and consistent standards for 

recognizing and addressing disability-related issues. This requires professional staff 

with disability expertise, as well as familiarity with the complexities of DHS, including 

Federal Emergency Management Administration operations across the various levels of 

government. 

RECOMMENDATION 1 

The U.S. Department of Homeland Security (DHS) should establish and appropriately 

staff a department-wide Office on Disability that is responsible for: training all DHS 

employees about including and serving people with disabilities; integrating disability 

issues throughout the Department; enforcing compliance with the Americans with 

24
Disabilities Act (ADA) by local and state governments; and increasing collaboration 

between regional DHS staff and disability organizations. 

International Convention on the Rights of Persons with Disabilities 

“[We] ask that the United States ratify the United Nations Convention 

on the Rights of People with Disabilities for all the work undertaken for 

the support of the disabled, it is important that we begin to join with 

the world in recognizing the Convention for people with disabilities.” 

“[W]e must demonstrate our leadership and commitment to providing 

access in the global community.” (Public Comments) 

In December 2006, at its 61st Session, the General Assembly of the United Nations 

(UN) adopted the International Convention on the Rights of Persons with Disabilities, 

which marked the end of a five-year-long negotiation process that was unprecedented 

in its inclusion of nongovernmental organizations made up of people with disabilities.17 

On May 3, 2008, the Convention on the Rights of Persons with Disabilities (CRPD) 

became legally binding on States Parties to the treaty. Many Americans with disabilities 

remain concerned that the United States has not signed the Convention.18 Given 

developments in U.S. and international policy regarding foreign assistance, human 

rights treaties, and disability over the last several years, signing the treaty would provide 

clear support for the principles of this landmark convention and continue the country's 

tradition as a world leader for people with disabilities. 

It is anticipated that U.S. foreign assistance will continue to support the growth and 

development of disabled people’s organizations in the developing world through the 

support of civil society capacity building initiatives, as well as support for the 

development of domestic disability legislation in line with the CRPD and the ADA 

principles of inclusion, nondiscrimination, and equality of opportunity. The Federal 

Government should continue to support the development of disability legislation in other 

25
countries and to provide technical expertise in these endeavors, especially in the 

developing world, based on the U.S. experience. 

Furthermore, in this global economy, millions of people with disabilities from the United 

States are now traveling abroad for pleasure, education, and employment, as well as for 

business and commerce. It is imperative that this new world economy be fully 

accessible to all people, including those with disabilities. 

RECOMMENDATION 2 

The President should sign the United Nations Convention on the Rights of Persons with 

Disabilities (CRPD). 

Health Care 

“[U]ntil we can change the provision of health care from a profit 

making business to one of universal coverage and access, we won’t 

have true health care for everyone.” 

“Medicaid providers are the worst when implementing services 

because they are still looking at the reimbursement hours and not at 

the patient needs.” 

“When our son with a disability ages out of our [private] health 

insurance policy we are uncertain what happens.” 

“Many [people with disabilities] can’t afford to work if they lose health 

care coverage. (Public Comments) 

People with disabilities tend to be in poorer health and to use health care at a 

significantly higher rate than people who do not have disabilities.19 They also 

experience a higher prevalence of secondary conditions and use preventive services at 

a lower rate than others.20 People with disabilities experience more problems accessing 

26
health care than other groups, and these difficulties increase for those with the most 

significant disabilities who are in the poorest health. Lack of access to health care has 

been associated with increased risk for secondary conditions for people with significant 

disabilities.21 People with disabilities are significantly less likely than people without 

disabilities to be satisfied with the quality of health care they receive.22 

People with disabilities are also affected disproportionately by barriers to care, 

including: 

● health care provider misinformation, stereotypes about disability, and lack of 

appropriate provider training; 

● limited medical facility accessibility and lack of examination equipment that can 

be used by people with disabilities; 

● lack of accessible information; and 

● lack of individualized accommodations.23 

Many people with disabilities report gaps in health care insurance coverage that limit or 

prevent access to needed prescription drugs, durable medical equipment, specialist 

care, postacute services, physical and vision rehabilitative services, and care 

coordination, all of which are critical for health, independence, and self-determination.24

Additionally, inadequate transportation, limited personal assistance services, and 

patchwork financial assistance for people of low income compound health problems and 

affect the overall health status of people with disabilities.25 

Many people with disabilities are unable to obtain any health coverage because they 

are not poor enough to qualify for public programs, but are excluded from private 

insurance because of preexisting conditions.26 According to the National Academies, 

one out of five adults with disabilities has no health insurance and does not qualify for 

Medicare or Medicaid. This limits these individuals to providers who will treat patients 

without insurance, usually requiring full payment upfront,27 at a cost much higher than 

would be charged if the patient had health coverage.28 Most uninsured go without 

27
health care instead.29 Provider choice is also limited for people with Medicaid because 

many providers will not accept Medicaid's low reimbursement rates.30 

Rates of disability increase with age.31 The numbers of older people are expected to 

grow substantially during the next several decades.32 Peak increases are projected 

through the year 2050.33 Despite this rapidly approaching demographic shift, and the 

increase in incidence of chronic conditions and health care costs that will accompany it, 

the Institute of Medicine (IOM) warns that Federal agencies, policymakers, and health 

care systems have not yet mobilized their resources to respond to the broad-ranging 

implications of this increase in disability for individuals and for society.34 Other national 

experts warn that severe shortages in the allied health professions will exacerbate the 

health care crisis for people with disabilities and chronic health conditions.35 The acute 

care bias in the health care financing system not only fails to value maintaining good 

health, but it may actually contribute significantly to the overall costs of health care for 

people who are aging. The current system fails to provide coverage for the very 

supports and services that will maintain independent functioning and avoid the 

extraordinary expense of institutionalization or dependent care. 

RECOMMENDATION 3 

The President should establish a commission to identify the gaps in health care 

financing for people with disabilities over the life span, which include gaps that baby 

boomers will encounter as they age and acquire chronic health conditions and 

disabilities. The commission should develop recommendations for a more 

comprehensive, cost-effective health care financing system that better meets the health 

care needs of an aging society, and that is based on the following principles: 

● People with disabilities or chronic health conditions should have access to health 

coverage throughout their life span; 

● People with disabilities or chronic health conditions should have access to health 

wellness and prevention services to maintain good health and avoid acquiring 

secondary health conditions; 

28
● People with disabilities or chronic health conditions should have access to homeand community-based health services and supports that prolong health and 

active, independent living; and 

● People with disabilities or chronic health conditions should have equal access to 

health care providers of their choice. 

Home- and Community-Based Services 

“It seems that each time there are budget cuts to be made, Medicaid 

is one of the first targets, which impacts people with disabilities and 

others who are the most vulnerable of the population because they 

are viewed as not important and often the least able to defend 

themselves which makes them an easy target.” 

“Though studies show that caring for someone in their home saves 

our states millions of dollars, we still choose to lock people with 

disabilities and seniors away in institutions.” 

“The government is biased towards institutional care . . . [it] 

maintain[s] nursing homes [rather than] . . . building the infrastructure 

for people to age in place or remain/return to their communities.” 

(Public Comments) 

For many people with disabilities whose medical needs involve specialized services, 

recent cuts in state matching funds have led to reductions in home- and communitybased services around the country. This exacerbates one of the most pressing public 

policy problems of the day—that Medicaid’s funding structure forces people out of their 

homes in the community and into nursing homes and other institutional settings to 

access services. 

The current system for the provision of long-term care hails to the early 1960s, when the 

Medicaid and Medicare programs were first established. In 2007, Andrew J. Imparato, 

29
President and Chief Executive Officer of the American Association of People with 

Disabilities, testified regarding the high human cost of the current system before the 

Senate Health, Education, Labor, and Pensions Committee, stating that: 

Not surprisingly, given the origins of these programs, the system 

continues to exemplify the historically low expectations society has 

had for people with disabilities for decades. With the expectations for 

us so low, the mission of the old system was and remains to this day 

focused on simply maintaining people with disabilities in nursing 

homes, other institutions, and back rooms, outside of view and away 

from mainstream. In 1965, people with disabilities were largely out of 

sight, because society was inaccessible, both literally and attitudinally . . . 

Curb cuts were few and far between. There was no Americans with 

Disabilities Act. It is 42 years later, and it is an abomination that 

hundreds of thousands of people with disabilities remain trapped in a 

broken system that steals lives . . .36 

The home- and community-based services that most people with disabilities want and 

need are optional, meaning that Federal law does not require states to provide them, 

although it does make the provision of nursing home services mandatory.37 Communitybased services are provided under waiver programs, which receive far more limited and 

far more tenuous funding, making them an easy target for state budget cuts during 

economic downturns. Few assaults on individual dignity and self-determination are 

harsher than being forced to leave one’s home and community to live in a segregated 

environment for these reasons. 

Federal Medicaid funds, including funds for the provision of long-term services and 

supports, are allocated at the discretion of each state toward institutional and homeand community-based services.38 Were the institutional bias eliminated, states would be 

more likely to provide fiscally responsible, consumer-desired services that are 

consistent with the principles of the ADA. This would create a starting point from which 

individuals with disabilities could more readily access opportunities that contribute to an 

30
improved quality of life,39 including employment, education, financial means, leisure and 

recreation, personal relationships, and so on—opportunities sorely absent in 

institutional, segregated environments. 

Pursuant to Olmstead, the 1999 Supreme Court decision that ruled that undue 

institutionalization constitutes discrimination under the ADA,40 the Federal Government 

has initiated a number of efforts to enhance the planning and coordination processes 

surrounding the implementation of home- and community-based services under 

Medicaid. Additionally, the Federal Government has established a number of financial 

incentive programs, most notably Money Follows the Person,41 to assist the states in 

this regard. The rate at which Medicaid dollars are being transferred from institutional to 

home- and community-based care is too slow,42 however, and funds for home- and 

community-based services are being reduced as a result of state budget cuts. At a time 

when Medicaid cost containment and rising demand for services combine to create a 

looming crisis, the comparative cost implications of nursing home versus communitybased care should alone suffice to instigate dramatic policy reform. 

Legislation to address the “institutional bias” in Medicaid has been introduced in slightly 

altered forms for more than 11 years. The first version of the legislation, the Medicaid 

Community-Based Attendant Services Act, was introduced in the House by former 

House Speaker Newt Gingrich in 1997. The most recent version of the legislation, now 

known as the Community Choice Act, has yet to be introduced in the current Congress, 

although its reintroduction is anticipated by advocates working closely with the 

legislation's bipartisan congressional champions. The legislation reforms Title XIX of the 

Social Security Act, which pertains to Medicaid, by allowing individuals who are eligible 

for Nursing Facility Services or Intermediate Care Facility Services for the Mentally 

Retarded43 the option of choosing community-based attendant services and supports. 

The legislation calls for an enhanced state match and grants for the first few years to 

financially assist states in reforming their long-term services and supports systems 

before the benefit becomes permanent. The Community Choice Act44 brings the 

principles of self-determination and independent living into the provision of this critical 

31
Medicaid benefit, much like the Money Follows the Person state demonstrations have 

done, by eliminating the institutional bias and providing Medicaid recipients who need 

long-term services and supports the option of living in the community while receiving 

those services. Money Follows the Person has focused on helping people who want to 

live in the community to leave nursing homes while continuing to receive services and 

supports. The Community Choice Act would help to prevent people with disabilities from 

having to enter them in the first place. 

RECOMMENDATION 4 

Congress should pass, and the President should sign, the Community Choice Act and 

make the Money Follows the Person program available in all states.45 Furthermore, the 

Secretary of the U.S. Department of Health and Human Services should convene a 

high-level task force to review all aspects of the Federal and state responses to the 

Olmstead decision and develop recommendations to eliminate the barriers preventing 

the transition of funding to home- and community-based services. 

Mental Health 

“I have bipolar disorder and also have worked in the mental health 

field for 7 years. I endured extreme trauma this past year but had no 

way to access a hospital short stay.” 

“[T]here continue to be significant difficulties for individuals with 

mental health disabilities who feel overwhelmed in trying to navigate a 

system of health care, which is built on voice mails and where it is 

difficult to speak to a person.” 

“[With] more opportunities for consumers to be involved in developing 

and evaluating services being delivered, there needs to be increasing 

funds allocated in the area of prevention of crisis through recoveryplanning programs.” (Public Consultation) 

32
Each year, one in 10 Americans will experience a mental disorder.46 As a result of the 

development of an array of effective treatments, people with mental illnesses can often 

experience recovery and lead productive, satisfying lives.47 Despite effective 

treatments, there are long delays—sometimes decades—between the onset of 

symptoms and treatment,48 and a host of barriers to treatment resulting from 

reimbursement restrictions.49 This contributes to some people living with disabilities 

unnecessarily. 

ce 

f 

 for 

primary care in this country. This position is guided by the following principles: 

RECOMMENDATION 5 

The Institute of Medicine (IOM) has issued a call to action. To improve our health care 

system, the IOM advises that we must pay adequate attention to mental and substan

use disorders.50 One of the IOM's key recommendations is the integration of mental 

health care into general medical care. To realize this goal, evidence-based models o

integrated mental health and primary care should become the standard practice

● Any changes to current standards of practice must be based on a belief that our 

health care system should focus not just on illness but also on wellness and 

health. 

● Incentives within the transformed health care system should be balanced across 

preventive care, acute care, and chronic care. This balance can be accomplished by 

realigning financing mechanisms to fund quality and coordination of care. 

The institution, not the individual provider, bears responsibility for implementation of 

evidence-based care. Infrastructure to coordinate, measure, and track improvements 

should be provided in a standardized fashion to facilitate comparison and sustainability. 

An evidence-based approach to integrated care should be the standard of practice in 

primary care through the following specific actions: 

33
● The President should instruct all Federal agencies to identify and eliminate all 

barriers to the appropriate payment for interventions that support evidencebased, integrated care provided by teams of appropriate clinicians. For example, 

current Medicaid auditing procedures in the Centers for Medicare and Medicaid 

Services (CMS) regional offices that deny payment for a primary care visit and a 

mental health visit on the same day should be eliminated. 

Mental Health Services for Veterans and Service Members 

● Congress should instruct CMS to reverse its current efforts to narrow the 

definition of “case management” activities in connection with evidence-based 

models of integrated care. Instead, CMS should broaden its definition to 

specifically recognize the key role that evidence shows case management and 

care coordination play in the coordinated, team-based delivery of integrated 

mental health, substance abuse, and primary care. 

● The Substance Abuse and Mental Health Services Administration and the Health 

Resources and Services Administration should require that all of their grantees (both 

block grant and discretionary programs) demonstrate that they are adopting 

evidence-based approaches to integrated care throughout their federally funded 

initiatives. Criteria derived from successful integrated models of care should be 

embedded in the Federal oversight of these grant programs and should support both 

ongoing quality improvement and implementation science in their development and 

application. 

“[Veterans] have learned that the disability process can be a hard one. 

We need help at the highest level to break down the systemic barriers 

for veterans so they can get through rehabilitation.” 

“I am a disabled veteran with a psychiatric disability, including a 

traumatic brain injury. I encountered numerous barriers that were 

blockers to my treatment . . . and a lot of veterans go through the 

same process. Most veterans coming for [mental health] treatment are 

34
trying to get their veterans benefits, . . . trying to stay in treatment, but 

while they are waiting for benefits, end up homeless and have 

nowhere to go.” (Public Comments) 

led 

, but 

l 

NCD has conducted research, including outreach to veterans returning from the current 

conflicts, about the programs available to assist them as they transition to life with a 

disability, and whether those programs are meeting their needs. During this research 

and outreach, NCD learned that there is a particular need to ensure that service 

members and veterans receive prompt, effective psychological screenings and services. 

More than 1.6 million American service members have deployed to Iraq and 

Afghanistan in Operation Iraqi Freedom and Operation Enduring Freedom. As of 

December 2008, more than 4,000 troops have been killed and more than 30,000 have 

returned from a combat zone with visible wounds and a range of permanent disabilities. 

In addition, an estimated 25-40 percent have less visible wounds—psychological and 

neurological injuries associated with post-traumatic stress disorder (PTSD) or traumatic 

brain injury (TBI). Although the Department of Defense (DoD) and Veterans Affairs (VA) 

have dedicated unprecedented attention and resources to address PTSD and TBI in 

recent years, and despite evidence that suggests that these policies and strategies 

have had a positive impact, more work needs to be done. 

Repeated deployments of mental health providers to support operations have revea

and exacerbated preexisting staffing inadequacies for providing services to military 

members and their families at home. The need for new strategies to effectively provide 

services to members of the Reserve Components requires particular attention. A DoD

Mental Health Task Force reports that insufficient attention has been paid to the vital 

tasks of prevention and early intervention. PTSD and TBI can be quite debilitating

the effects can be mitigated by early intervention and prompt effective treatment. 

According to current estimates, between 10 and 30 percent of service members wil

develop PTSD within a year of leaving combat. Evidence suggests that identifying 

PTSD and TBI early, and quickly referring people to treatment, can shorten suffering

and lessen the severity of functional impairment. Several types of rehabilitative and 

35
cognitive therapies, counseling, and medications have shown promise in treating both 

injuries. However, some service members continue to face barriers to care, including 

stigma and limited access to services. Veterans organizations report that long waiting 

lists, lack of information about where to find treatment, long distances to providers, and 

limited clinic hours create barriers to getting care. When care is not readily available, the 

“window of opportunity” may be lost. 

RECOMMENDATION 6 

Housing 

g 

The Department of Defense and the Veterans Administration should develop a plan to 

ensure continuous availability of mental health services for all service members and 

veterans. The plan must ensure that service members with post-traumatic stress 

disorder and traumatic brain injury, which may manifest after separation from the 

military, have continuous access to mental health services both before and after they 

separate from the military. 

“People [without decent job benefits] cannot afford a $700 a month 

rent when Social Security checks are only $740.” 

“The complexity and cost of special needs’ trusts prohibit many 

families from providing future plans for support; [we] need 

mechanisms to work with families in legal planning for a lifetime.” 

“Waiting lists for affordable accessible housing keep people in nursing 

facilities or limit their full [community] integration.” (Public Comments) 

Housing presents the best evidence for the proposition that disability is a function of the

interaction between the individual and the environment. If an individual needs housin

that accommodates wheelchair use, then it is the availability or unavailability of that 

housing, not the use of the wheelchair, which causes the individual's housing-related 

36
disability. If Federal financial assistance programs effectively bar people from saving to 

buy a home, then it is these programs that are contributing to the affordable housing 

shortage. 

d 

e 

NCD has undertaken a major study (slated for completion in 2009) into the current 

status of housing for people with disabilities and into the policy issues and historical 

background underlying housing.51 The study has three objectives: (1) to evaluate public 

laws, policies, and programs affecting the housing opportunities available to Americans 

with disabilities and others who need accessible housing needs as a result of aging or a 

temporary disability; (2) to analyze what is available in terms of housing, supports, and 

other benefits provided through the public and nonprofit or private sectors; and (3) to 

provide recommendations that can improve housing opportunities available in the U.S. 

to people with disabilities. The economics of housing are undergoing rapid change. At 

the same time, renewed concerns over energy, pollution, and urban sprawl are coming 

to play a larger role in the design and sighting of housing. Each of these issues will have 

profound implications for people with disabilities, both as members of the general public 

and as people with specific accessibility and affordability concerns. 

America enters this new era already facing a number of serious housing problems for its 

citizens with disabilities. These problems include: the disproportionate use of Medicaid's 

long-term care services to support institutionalization instead of supporting home and 

community services; the implementation of the Section 811 program to build or 

rehabilitate disability-specific, largely segregated housing; the reduction of support for 

housing vouchers under the Section 8 program that support integrated housing in the 

community; and the failure to require that housing built or financed through at least 

three major tax subsidies be accessible and available on a nondiscriminatory basis.52 

Even before the recent crisis, housing affordability was a problem for many, including 

many people with disabilities.53 When these homes are rehabilitated so that they can be 

reoccupied by new or former owners or by rental tenants, the revitalization effort shoul

keep affordability, accessibility, and visitability in mind. The scope and urgency of th

37
effort is an argument for, not against, the vigorous application and enforcement of 

housing discrimination and accessibility laws. 

The implications of a rehabilitated housing stock go far beyond housing. If integrated 

planning and effective coordination between the housing and health care systems could 

be achieved, this could create affordable, quality housing for people presently confined 

to nursing homes, which could in turn result in long-term savings in public expenditure 

that outweigh any added costs associated with the commitment to accessibility. 

Developing effective means of integrating the planning, sighting, and financing of 

housing and transportation could contribute significantly to the nation's energy goals, 

including to the national security goal of reducing dependency on imported oil. 

Deliberations about ways to maximize homeownership should include considerations of 

the economic situations facing Americans with disabilities, along with those of other 

lower-income citizens. We must integrate accessibility concerns not just for a small 

percentage of units, but for all housing. We must also promote measures for 

incentivizing the creation and preservation of livable communities (e.g., communities 

with accessible mass transit, opportunities for colocation of needed services and 

facilities, nearby grocery shopping and other local stores, and other key infrastructure). 

For a more complete discussion of lessons learned from NCD's study of a livable 

communities framework, see Appendix 3. 

For people with disabilities, an inclusive homeownership policy means a number of specific 

things. It means that disincentives to savings and earnings that have impeded 

homeownership in the past must be eliminated. This can be achieved in a number of ways, 

including expanding the range of people eligible to save for homeownership through 

individual development accounts (IDAs) or similar mechanisms.54 (See Appendix 4 for a 

discussion of how several states have addressed this problem). An inclusive 

homeownership policy also means realigning the tax incentives for homeownership so that: 

● the benefits of mortgage interest deductibility do not flow only to those who have 

already amassed enough money to buy a house; 

38
● the availability of the Low-Income Housing Tax Credit is tied to accessible 

design; and 

● the use of tax exempt bonds to finance housing and related community development 

is predicated on designs that contribute to the creation of livable communities.55 

Employment 

“Until employers want and have monetary incentives to hire people 

with disabilities, the government programs will not be successful.” 

Traditional reliance was on the private sector for the building and operation of the bulk 

of housing. However, through financing and regulation, government will have an 

expanded role for the foreseeable future. Public funds should not be used to build, 

rehabilitate, or finance any inaccessible housing, nor should the credit system being 

backed by Federal agencies be permitted to buy or insure loans that do not make 

accountable commitments to nondiscrimination. Furthermore, the considerable leverage 

of the tax system should be used in the interests of affordability.56 

RECOMMENDATION 7 

Congress should enact legislation requiring lending institutions to mandate compliance 

with the accessibility provisions of the Fair Housing Act and the ADA, including its 

accessibility guidelines, in all real estate and commercial loans, including loans for 

construction of multifamily housing. Such legislation should require the U.S. Department 

of Housing and Urban Development to produce an annual report of the quantity and 

quality of affordable housing (including Low-Income Housing Tax Credit properties) 

accessible to persons with disabilities, including occupancy rates by persons with 

disabilities. 

“Government should help pay for workplace accommodations.” 

39
“Many people fear loss of basic health and nutrition benefits, if they 

become employed: I no longer receive raises (including cost of living) 

at work [because] that will put me over the poverty level and I will lose 

my insurance and food stamps.” 

“Where there is no support . . . for a young adult with a disability to 

learn new skills [on the job training], how is he to engage in 

meaningful work after the school years are over?” (Public Comments) 

Employment Barriers. The employment rate of people with disabilities is an important 

measure of the nation’s progress in meeting the goals of full opportunity and inclusion 

embodied in key disability legislation and policy. The employment rate of working-age 

people with disabilities in 2005 was 38 percent, compared to the employment rate of 

working-age people without disabilities, which was 78 percent (see Appendix 2). In 

October 2007, NCD published “Empowerment for Americans with Disabilities: Breaking 

Barriers to Careers and Full Employment,”57 which includes significant summaries of 

data and experiences, detailed analyses of underlying issues, and comprehensive 

recommendations for actions by employers and government. (See Appendix 5 for a 

discussion of private initiatives that are improving employment opportunities for people 

with disabilities). 

At the time of NCD's employment study, looming labor shortages stemming from babyboomer retirement were cited as a powerful argument for utilizing all the skill and 

potential the American workforce could offer, including the untapped resource of people 

with disabilities. Today, however, with the ranks of the unemployed growing by 

hundreds of thousands per month, some may say that unemployment among people 

with disabilities cannot be a major issue in an environment in which jobs are becoming 

scarcer for everyone. Such expressions reinforce many of the very stereotypes that 

explain why, even in periods of rapid economic growth, people with disabilities have not 

shared in the fruits of the economy. People with disabilities have endured, in good times 

as well as bad, unemployment rates that would be considered a national crisis if 

experienced by other groups. 

40
National surveys of private employers find that about 20 percent say the greatest barrier 

to people with disabilities finding employment is discrimination, prejudice, or employer 

reluctance to hire them, and that attitudes and stereotypes are a barrier to employment 

of people with disabilities in their own firms.58 (These figures are probably understated 

because of the “social desirability” bias in surveys that leads respondents to avoid 

acknowledging prejudicial attitudes.) In addition, a recent review of more than a dozen 

empirical studies of wage differentials concluded that “a substantial part of the wage 

differential” can be attributed to disability-related discrimination.59 

As documented in NCD's 2007 report “Implementation of the Americans with Disabilities 

Act: Challenges, Best Practices, and New Opportunities for Success”,60 negative media 

stories about the ADA that perpetuate misperceptions about people with disabilities 

pervade print, television, the Internet, and other media. Clearly, such entrenched 

attitudes will undermine any attempts to increase employment opportunities for people 

with disabilities. A large-scale public awareness campaign is needed to begin to erase 

such uninformed beliefs and outdated stereotypes. 

RECOMMENDATION 8 

Congress should fund a series of antistigma demonstration projects targeted to: 

● the general public, designed to address the lack of knowledge about challenges 

to employment for persons with disabilities; 

● employers and persons with disabilities, aimed at achieving a better match of job 

seekers to employers; and 

● transition-age youth, designed to encourage them to consider careers in the areas of 

science, technology, engineering, and mathematics, and to expose such youth to the 

careers and opportunities these and other high-growth, high-income disciplines 

entail. 

41
Efforts to stimulate job growth should ensure that people with disabilities are an integral 

part of the available labor force of this country, and should be accompanied by 

mechanisms to ensure that nondiscrimination and equal opportunity rights are 

observed, that reasonable accommodations are provided according to law, and that 

recruitment, training, and outreach efforts include people with disabilities and the 

organizations serving and representing them. 

Federal Employment. In no area of employment is the role of the Federal Government 

more central than that of its own personnel practices. Advocates and observers were 

shocked to learn from a January 2008 Equal Employment Opportunity Commission 

(EEOC) report that the percentage of workers with disabilities in the Federal workforce 

had declined steadily since 1994 and is at its lowest level in more than 20 years.61

EEOC issued 10 recommendations to improve the situation. However, for long-term 

improvement to occur, a full understanding of the causes for the decline is necessary. 

NCD is currently studying this issue and plans to release a paper on the employment of 

people with disabilities in the Federal Government this year. 

RECOMMENDATION 9 

The President should issue an Executive Order requiring all Federal agencies to 

educate hiring managers and human resource personnel about the benefits of hiring 

people with disabilities, and to also educate them about the recently revised Schedule A 

civil service hiring authority, which makes it easier for Federal agencies to hire 

individuals with significant disabilities. The Executive Order should urge all Federal 

agencies to hire and advance more individuals with disabilities across the Federal 

workforce, including in the Senior Executive Service, with the goal of reaching the Equal 

Employment Opportunity Commission’s aim of ensuring that 2 percent of the Federal 

workforce include employees with disabilities by the year 2010. 

Additionally, to better monitor the progress of these efforts, NCD recommends that 

Congress require the Office of Personnel Management to include statistics about 

42
employees with disabilities in its annual report to Congress on the Federal Equal 

Opportunity Recruitment Program. 

Work Disincentives. In recent years, interest among antipoverty scholars and 

advocates has begun to focus on asset reform. Numerous proposals have been 

introduced in Congress to ease the asset limitations applicable to senior citizens 

seeking Medicaid help for long-term care costs.62 The work disincentives that confront 

people with disabilities are far more complex and difficult to understand, and they 

involve a larger number of intertwined agencies and service systems than one can 

encounter in any other means-testing or needs-based program setting. Even in a robust 

job market, the effects of these disincentives are so powerful that they not only 

significantly offset the natural opportunities created in a good economy, but also 

diminish the value of Federal expenditures in a variety of employment-oriented 

programs. 

Through a series of measures, including work incentive provisions in the Social Security 

Act,63 in the Ticket to Work Act,64 and through the creation of benefits counseling 

resources,65 Congress has attempted to deal with the work disincentives problem. What 

has resulted is an impenetrable web of confusion and complexity that has led to the 

widespread belief among Supplemental Security Income (SSI) and Social Security 

Disability Income (SSDI) recipients with disabilities that employment or savings will 

cause the cessation of their benefits. The loss of health insurance is an even greater 

fear of beneficiaries, particularly under circumstances in which no private sector 

alternative is available. 

Understanding the interlocking Social Security Administration (SSA), Centers for 

Medicare and Medicaid Services (CMS), and state Medicaid waiver and buy-in program 

regulations and policies is beyond the ability of even the savviest consumers. Even with 

the help of experts, it can be impossible to find answers to questions such as: which 

types of property are “countable” or not, how long certain revenues like earned income 

tax credit payments can be held before they become “countable resources,” which types 

of student income are treated differently than other wages for SSI earnings limit 

43
purposes, which months count and for how long they count toward the application of the 

“trial work period” rules, what happens in months when earnings fluctuate because 

people are paid weekly or biweekly, which payroll deductions are “excludable” from 

income and which are not, how many separate accounts must be maintained to track 

permissible, sheltered savings goals, which types of retirement accounts are permitted 

under which programs and which are not, and so forth.66 If the answers exist at all, 

understanding them often requires knowledge of the regulations and rulings of myriad 

Federal and state agencies. 

Strategies to reduce these disincentives have included: creating new types of 

specialized, sheltered accounts; raising applicable limits and thresholds; and attempting 

to make benefit reductions gradual. These strategies have only resulted in further 

complexity. Only through the elimination of disincentives can people who want to work 

do so without jeopardizing needed supports. In the final analysis, what people with 

disabilities want and need are services and supports that enable them to work—not 

benefits and services at the expense of work. 

RECOMMENDATION 10 

The Centers for Medicare and Medicaid Services and the Social Security Administration 

should work together closely to: (1) modify existing program regulations to uncouple 

Medicare and Medicaid coverage from Supplemental Security Insurance/Social Security 

Disability Insurance cash payments; (2) identify and eliminate the many employment 

disincentives currently built into the Medicaid waiver, Medicaid buy-in, and Health 

Insurance Premium Payment programs; (3) expand benefits counseling services to 

include the full range of financial education and advisement services, and to clarify that 

helping people to retain benefits while working is not in any way antagonistic to the 

goals of facilitating employment; and (4) work collaboratively with public and private 

insurance providers and business representatives to design public-private insurance 

partnerships that will expand access to health care from sources other than Medicaid or 

Medicare for individuals with disabilities. 

44
Reauthorization of the Workforce Investment Act. The forthcoming reauthorization 

of the Workforce Investment Act67 offers another opportunity to further the process of 

eliminating work disincentives and replacing them with work incentives, as well as the 

opportunity to modernize the Vocational Rehabilitation (VR) system in other ways. More 

than 80 percent of the state One-Stop Career Center plans include people with 

disabilities or representatives of public and private agencies, such as VR programs, that 

serve people with disabilities in the state plan development process. Many Disability 

Program Navigators and SSA Community Work Incentive Coordinators agree that policy 

barriers exist for people with disabilities within the eligibility criteria for employment 

training programs offered through the One-Stop Career Centers. People with disabilities 

have often reported encountering access barriers to One-Stop Career Center facilities 

and services. 

RECOMMENDATION 11 

Congress should proceed with reauthorization of the Workforce Investment Act, 

maintaining the Rehabilitation Act as a separate section with a separate funding stream. 

This reauthorization should: (a) include dedicated funding for the infrastructure of the 

One-Stop Career Centers; (b) continue expansion of the Disability Navigator and 

Customized Employment demonstration projects; (c) require the development of 

performance standards that measure the number of persons with disabilities who are 

served in the One-Stop system and their ability to access and benefit from One-Stop 

services, which would include access to assistive technology and rehabilitation 

engineering services; and (d) require in the Rehabilitation Act (section IV) that 

Vocational Rehabilitation services be made available to eligible youth no later than three 

years before an adolescent or young adult exits from secondary education. 

Transportation 

“Transportation is a major stumbling block to jobs, housing, doctor’s 

visits, etc. . . the bus [for people with disabilities] ends 3 miles from me 

45
but I would have to pay $40 each way to get it [and] this is impossible 

on a limited income.” 

“[N]ow 20 years old, I had transportation to doctors and physical 

therapy, but Medicaid won’t pay except from nursing homes rather 

than actual homes; aging parents drive me 4-5 days a week, but they 

are starting to experience their own health needs.” 

“[U]rban and rural area transportation systems unavailable and 

inaccessible for people with disabilities [add to] all other 

problems/challenges.” (Public Comments) 

New Freedom Initiatives. People with disabilities report that a lack of transportation 

restricts their ability to fully participate in all aspects of community life.68 The lack of 

transportation for people with disabilities, particularly in rural areas, has a great human 

cost—sometimes even resulting in unnecessary institutionalization. While great strides 

have been made in the accessibility of public transportation in this country since the 

passage of the ADA, significant gaps remain for many sectors of the disability 

community. The ADA requires only that, where public transportation is provided, it must 

be accessible for people with disabilities. The underfunding of public transportation in 

general has directly limited the mobility of large sections of the disability community who 

are unable to use a car or access the pedestrian environment. The transportation 

problem will not be fully addressed without a fundamental shift in funding priorities to 

greatly improve public transportation, including the pedestrian environment, as a whole. 

In 2006, Congress authorized funding for New Freedom formula grant programs 

designed to reduce barriers to transportation services and expand the transportation 

mobility options available to people with disabilities beyond the requirements of the 

ADA.69 The New Freedom program is intended to fill the gaps between human service 

and public transportation services previously available and to facilitate the integration of 

individuals with disabilities into the workforce and their full participation in the 

community. Congress has authorized a total of $339 million for these projects.70 To 

46
date, grants totaling $110,463,597 have been awarded.71 No evaluation of the 

programs accessing funding from the New Freedom transportation initiative has

been comple

 yet 

ted. 

RECOMMENDATION 12 

The Department of Transportation should: evaluate the effectiveness of the new pilot 

transportation initiatives for people with disabilities; develop permanent funding 

mechanisms to expand effective approaches across the country; and propose to 

Congress ongoing funding mechanisms to increase transportation options for the 

growing population of people who do not drive because of disabilities. 

Pedestrian Safety. For many people with disabilities, the pedestrian environment 

serves as their connection to public transportation or as their primary means of mobility. 

The emergence of hybrid and electric cars, so-called “quiet cars,” threatens the safety of 

people who are blind, because their mode of safe travel includes listening to motor 

vehicles for cues about vehicle distance, direction, and speed. Not being able to hear 

vehicles when crossing streets, passing driveways, or navigating parking lots would 

make it extremely difficult for people who are blind to travel safely and independently. 

Congressmen Towns (D-NY) and Congressman Stearns (R-FL) recently introduced The 

Pedestrian Safety Enhancement Act of 2009 (H.R. 734),72 which mirrors legislation 

introduced in the 110th Congress. The Pedestrian Safety Enhancement Act would 

require the Department of Transportation to research and ultimately set forth a minimum 

sound standard that must be met by hybrid and electric vehicles so that blind and other 

pedestrians may travel safely and independently in urban, rural, and residential 

environments. 

RECOMMENDATION 13 

Congress should pass legislation requiring vehicles, including hybrid vehicles, to meet a 

minimum sound standard so that pedestrians who are blind and who rely on listening for 

47
safe travel can maintain mobility and independence. The legislation should direct the 

Secretary of Transportation to, within one year of passage, promulgate standards for 

the minimum sound level required to enable blind pedestrians to determine the speed, 

distance, and direction of travel of motor vehicles. 

Education 

“[Congress needs to] ensure that the College Loan Reduction and 

Access Act and other programs serve students with disabilities among 

the total student population . . . [and] address problems in trying to 

find full employment for people with significant disabilities.” 

“[C]ommunity colleges, created to give everyone a shot at college, 

lack the supports and services crucial to the success of students with 

special needs, who often drop out.” 

“[H]aving access to high cost equipment once I leave college is a 

concern.” (Public Comments) 

Youth Transition. When Congress reauthorizes the No Child Left Behind Act (NCLBA), 

issues surrounding the relationship of that law to the Individuals with Disabilities 

Education Improvement Act (IDEIA) will receive heightened attention. The resources 

and procedures involved in special education and related services, and the relationship 

between general and special education must be addressed. 

Many have strong opinions regarding the resources devoted to, and the requirements 

imposed by, special education, including fear over the presence of students with 

disabilities in mainstream classrooms and resentment about the alleged diversion of 

funds resulting from Federal mandates. At a time of shrinking resources, as declining 

local property tax revenues cause deep cuts in public school spending, it is probable 

that such expressions of resentment will only increase. Great strides have been made in 

bringing students with disabilities into mainstream education, and in narrowing the gaps 

48
in education achievement between students with and without disabilities. Vigilance is 

required to ensure that resources devoted to schools in the forthcoming national 

infrastructure projects are allocated in ways that benefit all students and prevent the 

regression of the progress made to date. 

In education, the need for data is especially great, but evaluation of the success of 

efforts to equalize education opportunities and outcomes for students with disabilities 

have been complicated by a lack of clarity and cross-referencing in the data elements 

and definitions required under NCLBA and IDEIA. The reauthorization of NCLBA 

provides an opportunity to begin aligning the data elements and definitions in the two 

governing statutes required for them to work effectively together. This effort at definition 

and alignment should prove valuable in focusing attention on our nation’s expectations 

for students with disabilities and for the education system as a whole. 

In view of the funding crisis gripping state and local governments, the level of Federal 

financial participation in federally mandated special education programs takes on 

heightened importance. If the nation is to make a renewed commitment to the future 

through education, it must not overlook the need to include all students. 

A recent NCD study73 was commissioned to assist policymakers and stakeholders in 

assessing the impact of NCLBA and IDEIA on schools, including on student outcomes. 

The evaluation produced mixed findings. Overall state math and English test scores for 

elementary students with disabilities showed improved academic achievement, but 

there was little improvement in test scores of high school students with disabilities. Yet, 

an important result of NCLBA and IDEIA appears to be that students with disabilities are 

no longer ignored. Study participants also cautioned that an increase in test scores was 

not necessarily attributed to NCLBA or IDEIA alone. Several problems still need to be 

addressed, including: overlapping reporting requirements, the need for increased 

collaboration at the Federal level regarding data collection, and the negative 

consequences that may result from inflexible policies (e.g., policies that restrict who is 

considered a high school graduate to only those students who received diplomas in a 

standard number of years.) 

49
For young people exiting high school, only with effective transition services, planning, 

and supports can the efforts of either the education or the adult service systems be 

realized fully. Gaps in, or sudden cessation of, transition services are detrimental to 

transition-age youth with disabilities. Yet there is a lack of accountability for outcomes 

when the delivery of services falls between the cracks. NCD's 2008 report, “The 

Rehabilitation Act: Outcomes for Transition Age Youth,”74 found that VR is serving only 

a small percentage of youth who could potentially benefit from transition services, and 

that relatively little is known about the extent and effectiveness of VR transition services. 

RECOMMENDATION 14 

Congress should mandate that the Department of Education’s Office of Special 

Education and Rehabilitative Services, the National Institute on Disability and 

Rehabilitation Research, and state education and state Vocational Rehabilitation 

agencies conduct rigorous school-to-work transition evaluation studies. The studies 

should identify the transition program components that directly correlate with improved 

employment and postsecondary education outcomes for transition-age youth. 

Education Standards and Information Access. Accessible technology has taken on 

new importance in the education arena. With the growth of technology have come 

dramatic changes in how and where education takes place. With distance learning on 

the increase, issues of accessibility are becoming more critical. According to the 

American Foundation for the Blind (AFB), schools, colleges, and universities are 

increasingly using online education tools that students must access to obtain course 

syllabi, retrieve lectures and associated material, participate in class discussions, read 

course material, and receive grades and feedback from instructors.75 Findings from 

AFB's recent distance learning survey indicated that the most important and necessary 

features of online education tools presented significant problems for those using 

assistive technology such as screen reading or screen magnification software.76 AFB 

concluded that access issues in distance learning are a matter of accessible design and 

provided a variety of recommendations to ensure accessible distance learning 

experiences for students and instructors using assistive technology. 

50
Another area of concern is textbook accessibility. Because publishers have been 

reluctant to make textbooks available in electronic formats, and the textbooks must, 

therefore, be recorded on tape, it is not unusual for students who are blind or visually 

impaired to receive their textbooks long after their sighted peers. Recent efforts to 

ensure the accessibility of primary and secondary school textbooks have met with 

success as a result of new provisions in IDEIA that require publishers to make their 

textbooks available in standardized electronic formats. To facilitate comparable 

accessibility at the college level and in vocational training settings, Congress included 

provisions in the 2008 reauthorization of the Higher Education Opportunity Act77 to 

establish an Advisory Commission on Accessible Instructional Materials in 

Postsecondary Education for Students with Disabilities. NCD is named as a member of 

this Commission in the statute. However, no funds were appropriated for this 

Commission, and it has not been formed. 

RECOMMENDATION 15 

Congress should: 

● Expeditiously reauthorize and fully fund the No Child Left Behind Act (NCLBA) to 

maintain academic accountability requirements and high expectations for 

students with disabilities, provide supports and incentives for teachers to offer 

differential instruction of rigorous content, begin to align the data elements and 

definitions of NCLBA and the Individuals with Disabilities Education Improvement 

Act (IDEIA), and expand the age for provision of transition services; and 

● Fund the Advisory Commission on Accessible Instructional Materials in 

Postsecondary Education for Students with Disabilities, as established in the Higher 

Education Opportunity Act of 2008, which authorizes grants to increase accessibility 

of college textbooks and Web site and distance learning information. 

51
Technology 

“Many of the adaptive technologies are unaffordable to those who 

need them.” 

“[There is] difficulty in finding public videophones to make phone calls. 

TTYs are 30 years old. . . . In this age of computers, there are still 

many gaps in accessibility to certain websites . . . 95% of news, 

entertainment videos on the Internet are not captioned, please do not 

shut the deaf out.” 

“Producing emergency preparedness information for the print disabled 

population is considered to be a best practice for training. . . . I believe 

that the publishing industry has a responsibility to truly ‘publish’ their 

information and not merely ‘print’ their materials. Today, to publish 

must mean to publish digitally in a format that all people can use 

effectively. . . . Communication and technical assistance need to be 

highly funded.” (Public Comments) 

Access to the Internet. Use of the Internet is an inherent part of life today. For people 

with disabilities, however, access is not guaranteed. Because the ADA was passed 

before the Internet became pervasive, and the Department of Justice (DOJ) regulations 

do not address Internet access specifically, many Web sites still are not designed to be 

accessible by people with certain disabilities. As a result, people with disabilities have 

had to struggle to gain access to public and commercial Web sites. Some people have 

even had to resort to litigation. 

Implementation of the Section 508 Web Accessibility standards in the Federal sector, as 

well as the global impact of the World Wide Web Consortium’s Web accessibility 

standards, demonstrate that the means for making Web sites accessible are wellestablished, and a Federal requirement for full accessibility of public Web sites is long 

overdue. 

52
Assistive Technology. Assistive technology (AT) is technology that enables people 

with disabilities to maintain or improve their ability to function. AT includes the tools, 

resources, and technology to help increase independence, improve personal 

productivity, and enhance the quality of life for people with disabilities. Frequently, for 

people with functional limitations, the availability of AT makes it possible to participate in 

education, employment, recreation, government services, and commerce, particularly 

on the Internet. 

The range of hardware and software comprising the AT sector is growing rapidly, 

creating new and exciting functional capabilities almost daily. However, data are lacking 

on whether these opportunities are fully understood and utilized by the service providers 

in the VR and special education systems. Data indicate that many people with 

disabilities who could benefit from AT are not aware of its existence or cannot afford it. 

Given the growing centrality of technology in every aspect of life, it is vital to gain better 

knowledge about how effectively the service systems are using their authority to provide 

appropriate AT devices and AT services, particularly in the important realm of education 

and vocational rehabilitation, where access to AT can determine success or failure for a 

person with a disability. 

Digital Technology. The advent of digital media offers the potential for enhanced 

access, as well as challenges, to Americans with disabilities. Digital television, for 

example, offers opportunities and challenges regarding captioning. Unlike analog closed 

captions, digital caption capability provides tremendous flexibility and a new level of 

user control over caption display, including font style, text size and color, and 

backgrounds. However, set design, remote control design, and transmission within 

cable systems are all critical factors that can determine whether captioning can be used 

at all. 

Similar issues exist regarding video description. The system for transmission must be 

implemented, and viewers must learn to access it. Viewer education and broadcaster 

instruction and implementation are both necessary for digital television to be available to 

people with disabilities. 

53
Digital radio also offers opportunities and challenges for Americans with disabilities. For 

people who are deaf or hard of hearing, digital radio offers perhaps the first opportunity 

to receive radio information in an accessible manner via captioning. Additionally, 

persons who are blind or visually impaired may find new ways to enjoy radio reading 

services that are delivered at the listener's time preference rather than at the station's 

broadcast times. As with digital television, however, product design, consumer 

education, and broadcaster development and implementation are critical aspects of 

achieving the increased access available via this new medium. 

RECOMMENDATION 16 

The Assistant Secretary of Education for Special Education and Rehabilitative Services 

should conduct an extensive dialog with all state and territorial Vocational Rehabilitation 

agencies and state education agencies to determine in detail how and when they 

provide assistive technology, how they assess the implications of current and evolving 

technology for client or student assessment and goal-setting, and how they ensure that 

key personnel keep abreast of developments in assistive technology. Depending on the 

results of this assessment, the Assistant Secretary should determine whether the 

existing regulations implementing the statutory authorities for the use of AT adequately 

reflect its importance, and if not, should propose appropriate amendments when 

Congress considers reauthorizing the Vocational Rehabilitation Act, the Assistive 

Technology Act, and the Individuals with Disabilities Education Act. 

Congress should pass legislation that requires access to telephone and television-type 

equipment and services available through the Internet; decoder circuitry in all video 

programming devices; captioning of Internet-based television; audio description of 

television; and access to emergency broadcasts. The U.S. Access Board should adopt 

updated electronic and information technology and telephone guidelines to ensure 

increased accessibility of this technology to people with disabilities. The Federal 

Communications Commission should adopt regulations for ensuring that high-definition 

television will be fully accessible to persons with visual and hearing disabilities. 

54
Coordination 

“There must be one entry system for adult state and federally funded 

supports. People who need the most help to be contributing members 

(i.e., have a job) have to contend with a myriad of confusing duplicate 

applications for each agency which is costly and incredibly inefficient.” 

“I am currently looking at possible eviction as I don’t have enough 

money to pay all my rent let alone other bills. I am now in appeal for 

disability after being turned down twice and am told the process will 

take 19 months (which puts me into Fall of 2009).” 

“Resources have not been made available that would enable disability 

related programs to be truly culturally competent both in their outreach 

and in their provision of services.” 

“[Even] with a wonderful government program for people with 

disabilities, the process, the red tape involved is extremely time 

consuming and often too complex.” (Public Consultation) 

The landscape of American government has grown rich with disability policies and 

programs over the past 50 years. However, as government policies and programs have 

emerged, sometimes in piecemeal fashion, to respond to specific needs as they arise, 

the result has been a complex, impenetrable web of government programs that often 

conflict with one another (see examples in Appendix 6). NCD and the Government 

Accountability Office (GAO) have repeatedly called for better interagency coordination 

of disability programs. Although a challenge, improved coordination across government 

programs offers the potential for significant improvements in outcomes for people with 

disabilities, as well as for substantial cost savings. 

In 1992, Congress attempted to improve the coordination of Federal Government 

programs and services for individuals with disabilities; however, coordination remains 

55
elusive. Congress authorized the Interagency Disability Coordinating Council (IDCC) to 

coordinate Federal activities to promote independence and productivity of individuals 

with disabilities.78 However, IDCC has never met or reported to Congress, as required 

by law, and no other interagency body exists to perform this function. Although the 

IDCC was given the statutory authority to coordinate Federal activities and policies, no 

leadership authority was established, membership roles were not clearly defined, and 

outcomes were not prescribed. Consequently, no mechanism exists to ensure that 

multiple Federal agencies serving individuals with disabilities are communicating, 

coordinating, or working to resolve conflicts. 

RECOMMENDATION 17 

The President should establish, through Executive Order, an Interagency Disability 

Coordinating Council (Interagency Council), with a designated executive agency chair 

and required participation of all Federal agencies serving people with disabilities. The 

Interagency Council should be charged with submitting an annual report identifying 

instances of policy conflict or Federal disability-related program inconsistencies that 

interfere with the achievement of the overarching goals of the ADA, including equality of 

opportunity, full participation, independent living, and economic self-sufficiency. The 

Council should be charged with developing recommendations for the elimination of the 

conflict or inconsistency in all cases in which it substantially affects the lives of citizens 

with disabilities. 

56
CHAPTER 3: Full Citizenship—Emerging Issues and 

the Role of Federal Government 

This section addresses the role Federal Government programs and services should 

play to improve the quality of life for people with disabilities. The first subsection 

describes the economic climate at the time of the writing of this report, discusses the 

impact of the current economic climate on people with disabilities, and describes a few 

recent examples of public-private partnerships that are meeting immediate needs of 

people with disabilities. The second subsection addresses a more long-term role for 

Federal Government to play in improving the quality of life for people with disabilities. It 

offers a set of principles that can help to design a twenty-first-century government-wide 

disability policy. 

The Current Economic Crisis 

The role of the Federal Government in protecting the quality of life of people with 

disabilities is never more crucial than during economic hard times such as the present. 

Recent and ongoing fiscal problems have forced at least 40 states to propose or enact 

reduced services to families and individuals with disabilities.79 At least 22 states plus 

the District of Columbia are cutting, or proposing cuts to, medical, rehabilitative, home 

care, or other services needed by people who have disabilities, including those who 

have low incomes.80 For example, Arizona eliminated temporary health insurance for 

people with disabilities coping with serious medical problems. In Minnesota, 

policymakers capped enrollment at current levels for a program that provides expanded

health services and care coordination for people with disabilities. Tennessee has 

reduced community-based services for people with intellectual disabilities and cut 

nursing services for some adults with serious disabilities. Illinois has reduced funding for 

child welfare, mental health, and youth services. 

Proposed budget cuts at postsecondary institutions will also affect people with 

disabilities. At least 32 states have implemented or proposed cuts to public colleges and 

57
universities. Florida has announced that it will eliminate 430 faculty and staff positions 

and decrease funding for disability services. 

People with disabilities are most vulnerable during economic downturns. Medicaid, 

home- and community-based services, mental health services, and services for people 

with developmental disabilities are often the first programs to be cut by states in fiscal 

crisis. Social services caseloads swell just as personnel and services are reduced. The 

Federal Government has a critical role to play to prevent the current economic crisis 

from eliminating many of the gains that people with disabilities have achieved over the 

past 20 years. Many of the recommendations offered in this report, were they 

implemented, could mitigate some of the effects of the economic downturn and state 

budget cuts. 

In the meantime, however, immediate, stop-gap measures may be necessary to protect 

people with disabilities who are at risk of dire consequences, and the Federal 

Government may need to explore more partnership opportunities. One possibility for 

new partnerships exists in the community and volunteer sectors. Because the present 

economic circumstances have left many individuals in shaky circumstances and many 

communities without funds for the upkeep or expansion of important programs and 

services, needs are mounting and, increasingly, customary labor and funding streams 

are drying up. Volunteerism and community involvement are more important now than 

ever in filling existing gaps. President Obama’s Council for Faith-Based and 

Neighborhood Partnerships (Council) is one venue for organizing community response 

to specific concerns of people with disabilities. The Council is tasked with directing 

Federal social service dollars to faith-based charities and increasing charities’ 

involvement in antipoverty initiatives.81 

In addition to the potential for increased faith-based interest in disability concerns, 

grassroots-directed service projects hold extraordinary potential to increase awareness 

of and interest in the issues that affect people with disabilities. On January 19, 2009, a 

National Day of Service, members of communities organized more than 13,000 service 

58
projects in all 50 states.82 Among these numbers were service projects organized by 

Independent Living Centers across the nation. 

The Freedom Resource Center for Independent Living in Fargo, North Dakota, issued a 

call for volunteers to shovel snow to clear walkways for increased wheelchair access in 

the city, which was under heavy snow.83 More than 50 individuals showed up to dig out 

problem areas. The Independent Living Center of Southern California in Van Nuys, 

California, organized an emergency food drive for its homeless clients.84 

Volunteer Florida has received several awards for its innovative 6 Days 6 Ramps 

project, which actively recruits volunteers with disabilities to help build wheelchair ramps 

for people in need.85 6 Days 6 Ramps started in 2000 as a joint project between 

Volunteer Florida and AmeriCorps Florida State Parks as a single-event, single-site 

community service project. Since that time, it has grown into a six-day, multi-site 

community-strengthening event involving more than 1,000 volunteers—many with 

disabilities. 

In 2008, 6 Days 6 Ramps engaged 409 volunteers to build 42 ramps in seven cities. 

These are exciting and laudable outcomes, and ones that, if replicated and sustained, 

could address both the acute and chronic service needs of people with disabilities 

across the country, as well as provide opportunities for volunteers with disabilities to 

give back to their communities. Such initiatives could spur strides in improving society’s 

attitudes toward people with disabilities in their communities. 

Future Policy Directions 

Through our research and our enhanced efforts to gather input from stakeholders 

across the country, NCD has learned many lessons that can assist in modernizing 

programs and services to reflect the changed and changing needs of people with 

disabilities in our communities. While a program-by-program evaluation is beyond the 

scope of this report, NCD offers the following principles to guide the review of existing 

government programs, as well as to serve as a road map for the design of new 

59
government programs. We believe that adherence to these principles can result in a 

responsible and responsive use of government resources that will benefit people with 

disabilities as well as the nation as a whole. 

1. Ensure that Federal Government programs and services for people with 

disabilities are consistent with the overarching goals of the ADA—

promoting equality of opportunity, full participation, independent living, 

and economic self-sufficiency. 

Federal programs and services should be reviewed to identify and eliminate 

eligibility criteria, benefit limits, or rules or practices that conflict with these goals. 

Having a disability and being eligible for supports and services should not require 

giving up a job, limiting one’s earnings or savings, leaving one’s home, having to 

choose between health care and housing, forgoing having a family, or giving up 

one’s independence. Too often, programs providing the basic necessities of life 

require people with disabilities to live in poverty and forgo basic freedoms. 

Requiring states to provide care in nursing homes, while making home- and 

community-based care optional, is inconsistent with the goals of the ADA, costs 

more overall, and forces people with disabilities to live in institutions when they 

would rather live at home. 

2. Project the cost-benefits of government programs or policies for people 

with disabilities based on long-term, human costs and benefits. 

Decisions about disability policies and programs are often made based on costs 

to one program rather than by analyzing the decisions’ effects on the quality of 

individuals’ lives or the decisions’ overall cost to society. This approach may 

merely shift costs from one program to another. This approach may also result in 

a lapse in vital services for people with disabilities, leading to a greater long-term 

cost to society. For example, having a two-year waiting period for Medicare 

benefits for people who must retire early because of disability86 may create a 

savings for Medicare, but leaving people without health coverage, just when they 

60
need it most, financially devastates people with disabilities and their families. 

This forces otherwise self-sufficient people to resort to public safety nets. 

3. Build program bridges. 

This report cites many examples of gaps between government programs where 

there should be bridges. Whether a person with a disability is transitioning from 

high school to college, from school to work, from work to SSDI, from SSDI to 

work, from DoD to the VA, or from a nursing home to the community, a fall 

between the cracks can mean a permanent fall for someone with a disability. 

Lengthy application processes, eligibility determinations, and waiting periods are 

often cited as the reason someone with a disability is without income, health 

coverage, personal assistant services, or access to housing or transportation. 

Surely, the human cost and the cost to society when someone with a disability 

falls through one of these cracks is significantly greater than the cost of the 

bridges that could facilitate a seamless transition. Programs for people with 

disabilities should include bridges from one service to another when someone is 

entering the system, so that needed services from one program do not end 

before another program begins. Government agencies should be required to 

work together to create seamless transitions into and out of their programs, for 

example, by establishing presumptive eligibility, transferring application records, 

and eliminating arbitrary waiting periods. 

4. Design for inclusion. 

If universal design principles had been used whenever tax dollars financed the 

building of facilities, housing, public rights-of-way, and other investments in public 

infrastructure, what an accessible America it would be. Universal design 

principles ensure that construction is inclusive, accessible, and usable by 

everyone, including people with disabilities. This report cites many reports from 

people with disabilities about how environmental barriers restrict their full 

participation in all aspects of community life. 

61
Regrettably, much of our existing taxpayer-funded infrastructure will remain 

inaccessible for generations to come. However, we should immediately begin 

incorporating universal design principles in all future government-funded projects. 

As we begin implementing an economic stimulus package and make an 

unprecedented investment in public infrastructure, we have the opportunity to 

ensure that all new construction is designed for inclusion and that tax dollars are 

not used to perpetuate environmental barriers for people with disabilities. 

Universal design principles are equally important for technology access. Access 

to mainstream technologies has improved substantially for people with disabilities 

in recent years. This is attributable, in part, to Federal laws requiring disability 

access, e.g. Section 508 of the Rehabilitation Act and Section 255 of the 

Telecommunications Act. To ensure continued access for people with disabilities, 

these laws must be continually updated and enforced. In addition, all Internet 

technologies, consumer electronics, and telecommunication devices must be 

developed using universal design principles to ensure equal access. Accessible 

technology is increasingly important to ensure that people with disabilities have 

access to employment, health care, education, commerce, and social 

communications. 

5. Commit the full force of the Federal Government to enforcing and 

upholding the civil rights of people with disabilities. 

The civil rights of people with disabilities are in their infancy and require special 

attention by the Federal agencies charged with their enforcement. 

Implementation of the ADA, for example, is far from complete.87 ADA 

implementation is impeded by negative attitudes and stereotypes, a lack of 

access to appropriate durable medical equipment and assistive technology, and 

government practices and funding priorities that continue to neglect, and even 

segregate, people with disabilities. 

62
Nineteen years after the passage of the ADA, regulations for public rights-of-way 

have not been issued—contributing to significant barriers to full participation of 

people with disabilities in all aspects of community life. Certain sectors of the 

business community remain largely out of ADA compliance, and while extremely 

effective, enforcement by the U.S. Department of Justice is neither mandatory 

nor common.88 

Private enforcement of the ADA by individuals is not financially or practically 

feasible, as the provisions requiring access to public places and commercial 

facilities do not permit monetary damage claims,89 and a Supreme Court ruling 

now makes it difficult to obtain attorneys’ fees in civil rights cases.90 Thus, 

Federal enforcement of civil rights for people with disabilities is of paramount 

importance. 

Tragically, according to the U.S. Commission on Civil Rights, budget cutbacks for 

Federal enforcement of all civil rights laws have resulted in fewer compliance 

reviews, abbreviated investigations, less policy development, and less defense of 

civil rights laws in court.91 It concluded that “[u]ntil the President and Congress 

remedy this situation, millions of individuals will be deprived of adequate means 

to seek justice and equal opportunity.” 

6. Promote a culture of integration of people with disabilities into all Federal 

programs, policies, practices, and research. 

This report contains many examples of barriers to Federal programs that have 

the consequence of subjecting persons with disabilities to dependency, 

segregation, exclusion, and paternalistic treatment. Some barriers are caused by 

the Federal programs themselves. Barriers are attitudinal (such as fear, 

ignorance, prejudice, and stereotypes), physical (such as architecture, 

transportation, and communication), and institutional (such as policies, practices, 

and procedures). Sometimes these barriers are intentional and are the result of 

deep-seated prejudice. More often, however, they are the result of 

63
thoughtlessness, indifference, a lack of understanding, or the result of a history of 

separate programs. For people with disabilities, however, the effect is the 

same—exclusion, isolation, and unequal treatment. Whether it is data collection 

that does not count people with disabilities, eligibility criteria that have the effect 

of screening out people with disabilities from program participation, diversity 

initiatives that fail to recognize people with disabilities, or Federal funding for 

facilities that are not physically or programmatically accessible, it is clear that the 

Federal Government has yet to integrate people with disabilities into its generic, 

mainstream programs, policies, practices, and research. Disability is a normal 

part of the human condition, and the Federal Government would be enhanced by 

a broader conceptualization of disability that calls for inclusion, integration, and 

equality throughout the government. 

64
CHAPTER 4: Conclusion 

In studying the quality of life of people with disabilities and the emerging trends 

concerning them, the positive and negative impacts of government programs on the 

lives of people with disabilities were evident at every turn. Consistency and coordination 

across government programs is lacking and some programs actually conflict with one 

another. This report presents some approaches that appear to be successful in 

improving the quality of life for people with disabilities, identifies the remaining gaps, 

and discusses the emerging trends that warrant the focus of government agencies and 

policymakers. Many successful programs have resulted from building working 

partnerships with state and local governments, as well as with the private and volunteer 

sectors. 

Issues of central importance to people with disabilities included attitudes, employment, 

emergency preparedness and homeland security, health care, housing, transportation, 

social security, education, technology, and foreign policy. NCD included 

recommendations on each of these topics of importance to people with disabilities. 

These recommendations are designed to ensure that the quality of life for people with 

disabilities continues to improve, and to eliminate potential barriers, both physical and 

attitudinal, that detract from their quality of life. Also included are a set of principles to 

guide the evaluation of existing government programs, as well as to facilitate the 

development of a more coherent, comprehensive approach to disability policy within the 

Federal Government that will enhance the employability, independence, and full 

inclusion of all people with disabilities. 

 

65
66
Appendices 

67
68
APPENDIX 1: 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 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, 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 in the Federal Government, at 

the state and local government 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 

69
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 (ADA) (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; 

● 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 people 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; and 

70
● Preparing and submitting to the President and Congress an annual report titled 

“National Disability Policy: A Progress Report.” 

Statutory History 

NCD was 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. 

71
72
APPENDIX 2: Statistical Social Indicators 

TABLE A2.1 

Statistical Social Indicators 

Indicator Measures People with a Disability People with No Disability

Employment 

Employment rate 38% 78% 

Employment rate by 

educational attainment 

● less than high school 

graduate 25% 66% 

● high school graduate 36% 76% 

● some college or 

Associate degree 44% 80% 

● Bachelor’s degree or 

higher 55% 83% 

Median annual labor 

earnings for full-time/full-year 

workers $30,000 $36,000 

Median annual labor 

earnings for full-time/full-year 

workers by educational 

attainment 

● less than high school 

graduate $22,000 $22,000 

● high school graduate $27,000 $30,000 

● some college or 

Associate degree $32,000 $35,000 

● Bachelor’s degree or 

higher $47,000 $54,000 

Education 

% of working-age people 

with less than a high school 

diploma 25% 12% 

% of working-age people 

with at least a college degree 13% 30% 

Continued next page 

73
Table A2.1 Statistical Social Indicators (cont’d) 

Indicator Measures People with a Disability People with No Disability

Health Status and Health Care 

Obesity among working-age 

people 38% 23% 

% of working-age people 

who smoke tobacco daily 23% 16% 

Health insurance status of 

working-age people 

● Private 46% 74% 

● Medicare or Medicaid 33% 4% 

● Other 5% 3% 

● Uninsured 17% 19% 

Failure to get needed care 

because of cost, by poverty 

status 

● Below poverty 29% 14% 

● Above poverty 17% 5% 

% of working-age patients 

who report that doctors or 

other health providers 

always show respect for 

what the patient has to say 57% 63% 

Financial Status and Security 

Median income of workingage people $35,000 $61,500 

Poverty rate among workingage people 25% 9% 

Leisure and Recreation 

% of working-age people 

who participate in leisure 

time physical activity 44% 65% 

Continued next page 

74
Table A2.1 Statistical Social Indicators (cont’d) 

Indicator Measures People with a Disability People with No Disability

Personal Relationships 

% of working-age people 

who report that they always 

or usually get the social and 

emotional support always 

available 66% 77% 

Marital status of working-age 

adults 

● Married 

49% 61% 

● Separated/divorced/ 

widowed 28% 15% 

● Never married 23% 24% 

Crime and Safety 

Violent crimes per 1,000 

people 

Data not published as of 

report printing 

Data not published as of 

report printing 

Property crimes per 1,000 

people 

Data not published as of 

report printing 

Data not published as of 

report printing 

Source: National Council on Disability, “Keeping Track: National Disability Status and Program 

Performance Indicators” (Washington, DC: NCD, April 2008), Exhibit 5.2.92 

Data apply to the working-age population of people with disabilities (21-65 years old). 

75
76
APPENDIX 3: Livable Community Discussion and 

Examples 

Communities are vital in shaping people’s opportunities and capabilities. Communities 

in the United States are faced with increasingly difficult choices and decisions about 

how to grow, plan for change, and improve the quality of life for people with disabilities 

and the growing population of seniors. People are living longer lives today than ever 

before and the population of people age 65 and older is growing rapidly. One in five 

people in the United States will be over the age of 65 by 2030. Currently, more than 4.7 

million Americans age 65 years or older have a sensory disability involving sight or 

hearing, and more than 6.7 million have difficulty going outside the home. As the 

population of seniors grows, the number of people age 65 and older with disabilities will 

also grow, particularly those 75 years of age and older. 

One of the most practical public sector strategies to ensure that all communities are in 

the best possible position to support people throughout their lives is to empower local 

people and communities to develop tailored and locally owned solutions to the problems 

they face. Over the past several years, NCD has engaged in a series of investigations 

into how communities are becoming more accessible, affordable, and available for 

people with disabilities. 

In 2004, NCD issued a comprehensive report, “Livable Communities for Adults with 

Disabilities,”93 which contained a number of specific recommendations to promote the 

full integration of people with disabilities. In the follow-up report in 2006 entitled 

“Creating Livable Communities,”94 NCD identified six elements that are integral to 

improving the quality of life for all citizens with disabilities of all ages: 

● Providing affordable, appropriate, accessible housing; 

● Ensuring accessible, affordable, reliable, safe transportation; 

● Adjusting the physical environment for inclusiveness and accessibility; 

● Providing work, volunteer, and education opportunities; 

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● Ensuring access to key health and support services; and 

● Encouraging participation in civic, cultural, social, and recreational activities. 

In March 2008, NCD expanded the livable communities framework to include people 

with psychiatric disabilities. The paper describes a number of existing programs that can 

serve as models of successful integration of recovery into practice, delivering services 

that enable people diagnosed with serious mental illnesses to live integrated lives in the 

community. 

Some examples of livable communities from NCD reports and papers follow. 

From “Livable Communities for Adults with Disabilities” (2004)95 

The Wisconsin Partnership Program is a comprehensive program of services for older 

adults and people with physical disabilities that integrates health and long-term support 

services, including home- and community-based services, physician services, and all 

other health care services. The Department of Health and Family Services contracts 

with community-based organizations to implement the Partnership Program. These 

organizations, in turn, subcontract with hospitals, clinics, home health agencies, 

residential providers, nontraditional service providers, pharmacies, and other providers 

to ensure a comprehensive network of acute and long-term care. The Wisconsin 

Partnership Program combines the benefits of the Medicaid/Medicare systems into one 

program through an 1115/222 dual waiver, which helps avoid fragmentation and 

duplication of services. It provides high-quality, flexible, consumer-centered, 

comprehensive, and continuous care across settings and providers. It uses a model of 

service delivery based on collaborative, interdisciplinary teams that work with enrollees 

to develop care plans that coordinate all service delivery. 

From “Creating Livable Communities” (2006)96

The Aging and Disability Resource Center (ADRC) grant program was established to 

pilot new approaches to interagency coordination that improve access and the 

78
availability of information to meet the needs of target populations. States must target 

ADRC services to the elderly population and at least one additional population (i.e., 

individuals with physical disabilities, serious mental illnesses, or 

intellectual/developmental disabilities) with the goal of overcoming barriers to 

community living for people with disabilities of all ages. The ADRC program is the 

collaborative effort of the U.S. Department of Health and Human Services 

Administration on Aging and the Centers for Medicare and Medicaid Services. Ready 

access to consolidated information and referral services helps make communities more 

livable for residents of all ages and abilities. ADRC programs provide information and 

assistance to both public and private pay individuals and serve as the entry point to 

publicly administered long-term supports, including those funded under Medicaid, the 

Older Americans Act, and state revenue programs. 

From “Inclusive Livable Communities for People with Psychiatric 

Disabilities” (2008)97

Oregon is an example of a state that has made personal assistant services (PAS) 

widely available to people with psychiatric disabilities. Currently, more than 600 mental 

health consumers are being served in the PAS program, which is funded by Medicaid. 

Many of the personal care attendants are themselves people diagnosed with a mental 

illness, who are further along in their own recovery than the people they are assisting. In 

an interview, Michael Moore, adult services coordinator for the Oregon Department of 

Human Services, describes how working as a personal care attendant assists his 

recovery: 

“When people go to work, the symptoms of their mental illness[es] 

actually go down quite a bit, and that makes sense to me, intuitive 

sense. If you’re sitting at home not doing much, you’re probably 

gonna dwell a little bit on yourself. It’s probably not too great on the 

brain.” 

79
An Oregon public radio story describing the program interviewed a woman whose 

severe agoraphobia had kept her housebound until she acquired a personal care 

attendant. The attendant, herself a person in the process of recovery, receives a salary 

of $9 an hour to provide 20 hours a month of PAS, such as assisting with shopping and 

housekeeping. Moore developed the program based on similar programs that serve 

people with general medical disabilities, and he believes that it both saves the state 

money and assists people toward independence. Moore plans to increase the size of 

the program to serve a thousand recipients by 2008. 

In addition to providing practices and models of livable communities in action, these 

NCD reports and papers propose necessary changes in public policy. The intention of 

such change is twofold: (1) to ensure that communities are designed to be affordable, 

available, and accessible; and (2) to support people with disabilities so that they will 

have access to all the opportunities and choices that are available to people without 

disabilities. 

Government has a central role in supporting people to develop the skills and capabilities 

needed to succeed in the modern world. Children and youth need support during their 

early years so that they can develop the skills and abilities that lead to their ability to 

secure good jobs. Young people need support as they develop and make the transition 

from school to work, through further education and training to higher education. Adults 

need support to acquire or continue developing their skills in a changing labor market. 

Families and communities need support in a complex and often challenging world to 

ensure that necessary resources reach the people who need them. Government at all 

levels must support these efforts by ensuring that: (1) public services and supports are 

excellent, personalized, and responsive to users; (2) the tax and benefits system is fair, 

creating the right financial incentives, and supporting people when they need it; and (3) 

by ensuring a goodness-of-fit between the public infrastructure and individual and family 

expectations and needs. There is much to do to enable people with disabilities to fulfill 

their potential. But with the right policies, this country can improve educational 

attainment levels, raise the overall rate of labor participation, increase incomes and the 

80
number of good jobs, and enhance individuals’ health and wellness. At the same time, 

these policies can assist the nation’s effort toward building more livable communities 

and creating a fair society for all. 

81
82
APPENDIX 4: The Role of Government in the Pervasive 

Poverty of People with Disabilities 

Historically, families with members who have a disability are often at a disadvantage. 

According to a 2005 U.S. Census Bureau research brief, Census 2000 counted a total 

of 72.3 million families, and found that nearly 28.9 percent of them (about two in every 

seven families) reported having at least one member with a disability. Families with 

members with a disability were less likely than other families to have earnings and more 

likely to receive income from Social Security and public assistance. Family 

householders with disabilities were less likely to be employed and less likely to be in the 

labor force than other family householders.98 The Federal poverty level used in the 

United States is an absolute income measure. As such, the Federal poverty level does 

not account for actual consumption, elevated health care needs, or receipt of noncash 

benefits. It must be noted, then, that families with members with disabilities who are in 

poverty typically experience greater hardship than do other families. 

As disability policy stands today, a child with significant disabilities born in the United 

States has little chance of gaining access to assets and escaping poverty, despite 

advances in health care and technology. In part, this is due to the continued all-ornothing dichotomy of public policy that views disability as the inability to work and that 

provides needed public assistance only if one remains poor and completely dependent 

on government help. 

How can the United States affect this vexing policy problem? What strategies are most 

effective in tackling the vexing quality-of-life problems families face in their 

communities? In 2008, NCD issued “The State of 21st Century Financial Incentives for 

Americans with Disabilities.”99 The report describes financial incentives affecting people 

with disabilities and presents research findings in key areas of people’s lives. The report 

highlights Federal and state programs that offer direct, indirect, or community financial 

incentives and support that can help to address some of the challenges. 

83
In the past 10 years, states have become important originators of social policy reforms 

that respond to challenges related to affordable housing, welfare and work, access to 

health care, and transportation. The six states with innovations affecting asset 

development and wealth accumulation are: Kentucky, Louisiana, Maryland, Missouri, 

Washington, and Wisconsin. Table A4.1 presents each state’s program area and focus. 

TABLE A4.1 

States with Innovations Affecting 

Asset Development and Wealth Accumulation 

State Program Area and Focus 

Kentucky ● Housing 

● Universal Design Program 

Louisiana ● Education 

● Student Tuition Assistance and Revenue Trust (START) 

Savings Program 

Maryland ● Transportation 

● Statewide Special Transportation Assistance Program (SSTAP) 

Missouri ● Long-Term Services and Supports 

● Assistive Technology Program 

Washington ● Asset Development 

● Individual Development Accounts 

Wisconsin ● Employment 

● Medicaid Buy-In Program (also called Medicaid Purchase Plan) 

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APPENDIX 5: Private Initiatives 

All sectors—business, labor, community agencies, and persons with disabilities and 

their advocates—have a role to play in improving the employment situation of persons 

with disabilities. NCD explored these roles in its 2007 report “Empowerment for 

Americans with Disabilities: Breaking Barriers to Careers and Full Employment.”100 The 

practices below demonstrate the important role the private sector can play in improving 

employment and education opportunities for people with disabilities, and demonstrate 

the value of public-private partnerships in achieving the government's goals for citizens 

with disabilities. These practices also highlight the role frontline service providers and 

community organizations play in working with persons with disabilities, employers, and 

government agencies to identify opportunities and facilitate workplace accommodation. 

Corporate Culture 

At SunTrust Bank, “Initially, disability etiquette training [at SunTrust] was developed and 

provided to recruiters and staffing managers in order to prevent many misunderstandings 

that could occur when the management employees are not aware of the laws and 

situations associated with hiring people with disabilities. One large phone campaign 

required approximately 600 temporary employees, and several people with disabilities 

were hired, due to the proactive stance of the hiring manager for the project. When that 

project proved successful, other managers in the bank wanted to know her ‘secret,’ and 

she was identified as an internal champion for the hiring of people with disabilities. This 

bottom-up approach to promoting the hiring and retention of people with disabilities has 

proven effective in reducing resistance to change throughout the company.” 

Nike’s Disabled Employees and Friends Network (DEN) has a “mission to add value 

and enrich Nike and the community in which it operates for more inclusion and full 

utilization of employees with disabilities. . . . DEN is truly unique in as much as this 

vibrant group involvement is solely based on the interest of employees and the 

awareness activities, such as the campus-wide wheelchair race for individuals without 

disabilities, and is on the cutting edge in terms of disability awareness programs. It also 

85
provides a supportive employee base for larger outreach and innovation activities in the 

local community on the part of corporate management.” 

Recruitment and Retention 

The Giant Eagle grocery chain sponsors disability awareness training for its human 

resource managers every two years, which is held offsite at a YMCA camp with 

participation from several public and private disability agencies. During the training, 

“[h]alf of the day is spent learning about the ADA and interviewing skills, while the 

remaining half of the day the human resource managers spent actually experiencing 

disabilities. Stations are manned by job coaches who simulate for the human resource 

managers what it is like for someone with a disability. For example, a wheelchair 

exercise allows the human resource managers to perform everyday activities, such as 

using a drinking fountain, maneuvering through doors and up and down ramps, and 

reaching for something on a shelf.” 

At Hewlett Packard, “front line supervisors, sometimes challenged with worker 

shortages, have been trained to expand their applicant pool, often going to a university 

they know and interacting with faculty to identify persons with disabilities who also have 

the necessary technical skills needed for a particular position. [In addition,] HP makes a 

point of working with employment agencies that are noted for their training of people 

with disabilities.” 

IBM’s Entry Point program is a collaboration with the American Association for the 

Advancement of Science (AAAS) and NASA. Its mission is to place students with 

disabilities in business and government and prepare them for corporate and community 

leadership. Since 1997, IBM has had 191 student placements in summer internships 

and hired 44 students into regular employment. 

86
Reasonable Accommodations 

“In addition to a centralized accommodation budget, Microsoft has an ADA 

Accommodations committee. This committee meets monthly and is given the 

responsibility of coordinating accommodations throughout the company, discussing the 

potential impact of new technologies, and evaluating current accommodation programs. 

Moreover Microsoft has an Assistive Technologies Team that makes approximately 

twenty evaluations a month, and an Ergonomics Team that makes approximately 180 

one-on-one evaluations a month, spending six to eight hours with each employee 

evaluated.” 

Marriott teaches its managers to be accommodating to all employees. “Thus the issue 

of perceived fairness of various accommodations seems to be lessened when 

managers are trained to be accommodating across the board—no employee can predict 

when a temporary illness or a need to care for a family member will arise and mean 

they need flexibility or accommodation from their employer as well.” 

Education 

Pitney Bowes has “made a commitment to mentor high school students with disabilities. 

They have provided internships to the students with disabilities from Goodwill’s High 

School/High Tech program.” 

IBM’s Entry Point program, as noted in the “Recruitment and Retention” section above, 

places students with disabilities into summer internships that often lead to regular 

employment. In addition to the internships, the program has STEM (Science, 

Technology, Engineering, Math) Entry Point Camps focused on providing training for 

boys and girls with disabilities in middle and high school. 

87
 

88
APPENDIX 6: Intergovernmental Review and Examples 

Emergency Response 

One of the more recent examples of intergovernmental policies and programs that 

significantly affects the lives of people with disabilities is the government's response 

during emergencies and disasters. Since September 2005, when people with disabilities 

in the Gulf Coast areas of Alabama, Mississippi, and Louisiana experienced tremendous 

loss of life and devastation caused by Hurricane Katrina, the Federal Government has 

monitored government progress in emergency preparation. This monitoring has involved 

frequent congressional oversight of ongoing intergovernmental problems involving 

unhealthy and inaccessible housing, unavailable and inaccessible transportation, and 

insufficient public and private sector collaboration.101 Given that there are more natural 

disasters now than in the past, and that these disasters are more severe, improvements 

to emergency preparation and management is a national imperative. 

Intergovernmental Programs Serving Low-Income People 

In 2005, the Government Accountability Office (GAO) identified a number of Federal 

programs wholly devoted to serving mostly low-income individuals with disabilities and 

conservatively calculated the cost, when combined with costs of Medicare and 

Medicaid, at more than $240 billion.102 The GAO surveyed 20 different Federal 

agencies that administer more than 200 disability programs (many of which are de

as financial incentives) and found that 59 percent of the programs provided indirect 

support to people with disabilities through state grants, while the balance provided direct 

support to 34 million beneficiaries or 

fined 

clients. 

Overlapping, Intergovernmental Programs 

Another GAO report in 2007 indicated that multiple agencies run programs that provide 

similar types of assistance, and these programs often serve different populations of 

persons with disabilities because of varying eligibility criteria.103 Participants at a 2007 

89
GAO forum noted that many Federal departments achieve good outcomes, yet they 

also acknowledged fragmentation, duplication, and a need for greater coordination. 

90
91

Endnotes 

1

 National Council on Disability, “Impact of the Americans with Disabilities Act: 

Assessing the Progress Toward Achieving the Goals of the ADA” (Washington, DC: 

NCD, July 2007). http://www.ncd.gov/newsroom/publications/2007/ada_impact_07-26-

07.htm (accessed February 17, 2009). 

2

 Ibid. 

3

 Ibid. 

4

 Kaiser Family Foundation, “Health Care for Americans with Disabilities” (2004). 

http://www.kff.org/medicaid/7202.cfm (accessed October 23, 2008). 

5

 National Council on Disability, “The Impact of the Americans with Disabilities Act: 

Assessing the Progress Toward Achieving the Goals of the ADA,” op. cit. [n.1] p. 83. 

6

 General Accounting Office, Forum on Key National Indicators, Publication No. GAO 

03-672SP (Washington, DC: Government Printing Office, May 2003); Government 

Accountability Office, Informing Our Nation: Improving How to Understand and Assess 

the USA’s Position and Progress, Publication No. GAO-05-01 (Washington, DC: 

Government Printing Office, November 2004). 

7

 National Council on Disability, “Keeping Track: National Disability Status and Program 

Performance Indicators” (Washington, DC: NCD, April 2008), 

http://www.ncd.gov/newsroom/publications/2008/indicators_report.html (accessed 

January 12, 2009). 

8

 See details including questions at 

http://www.ncd.gov/newsroom/publications/2008/public_consultation.html (accessed 

January 28, 2009). 

9

 The Public Comments incorporate notes compiled from responses to NCD’s 

“Emerging Trends and People with Disabilities: Public Consultation in 2008,” for which 

among 400 written comments 5 percent were national or regional organization 

respondents. NCD also received nearly 250 additional public comments via e-mail, 

postal mail, or telephone. 

10 Commenters represent people living with disabilities, families, other advocates, and 

service providers. 

11 Seven topics were identified by respondents to the NCD’s “Public Consultation in 

2008.” A tally of importance showed the following: 22 percent, health care; 20.7 percent, 

housing; 17 percent, employment; 16.7 percent, transportation; 13.7 percent, insurance; 

12 percent, education; 11 percent, civil rights; and 11 percent, attitudinal barriers. 
92

12 Ker Than. “Natural Disasters Becoming More Common,” Live Science (October 

2005), http://www.livescience.com/environment/051017_natural_disasters.html

(accessed February 12, 2009). 

13 Ker Than. “The 100-Year Forecast: Stronger Storms Ahead,” Live Science (October 

2005), quoting lead researcher Gerald Meehl of the National Center for Atmospheric 

Research, http://www.livescience.com/environment/051013_stronger_storms.html

(accessed February 2, 2009). 

14 National Council on Disability, “Proceedings Monograph: Emergency Management 

and People with Disabilities” (Washington, DC: NCD, January 2008), 

http://www.ncd.gov/newsroom/publications/2008/proceedings_monograph.html; 

“Homeland Security, Emergency Preparedness, Disaster Relief and Recovery,” 

http://www.ncd.gov/newsroom/publications/2007/ncd_consultant_05-31-07.htm; “The 

Needs of People with Psychiatric Disabilities During and After Hurricanes Katrina and 

Rita: Position Paper and Recommendations,” 

http://www/ncd.gov/newsroom/publications/2006/peopleneeds.htm; “Emergency 

Management and People with Disabilities: Before, During and After Congressional 

Briefing,” 

http://www.ncd.gov/newsroom/publications/2005/transcript_emergencymgt.htm; 

“Request for Information about the Experiences of People with Disabilities Affected by 

Hurricanes Katrina and Rita,” 

http://www.ncd.gov/newsroom/publications/2005/hurricanes.htm; “National Council on 

Disability on Hurricane Katrina Affected Areas,” 

http://www.ncd.gov/newsroom/publications/2005/katrina.htm; “Saving Lives: Including 

People with Disabilities in Emergency Planning News Conference Transcript,” 

http://www.ncd.gov/newsroom/publications/2005/emergency_planning.htm; “Saving 

Lives: Including People with Disabilities in Emergency Planning,” 

http://www.ncd.gov/newsroom/publications/2005/esaving_lives.htm. (all sites accessed 

February 20, 2009). 

15 Post-Katrina Emergency Management Act of 2007, Public Law 109-295. 109th Cong., 

2nd sess. (January 3, 2006). 

16 U.S. Government Accountability Office, “FEMA Should Take Action to Improve 

Capacity and Coordination between Government and Voluntary Sectors,” GAO Report 

08-369 (Washington, DC: Government Printing Office, 2008). The GAO report examines 

several issues, including collaboration between NCD and FEMA. Some benefits of this 

collaboration may be seen in Federal Emergency Management Agency, “A Reference 

Guide for Accommodating Individuals with Disabilities in the Provision of Disaster Mass 

Care, Housing and Human Services” (Washington, DC: FEMA, August, 2008). 

17 UN Enable, “Convention on the Rights of Persons with Disabilities,” 

http://www.un.org/disabilities/default.asp?navid=12&pid=150 (accessed February 18, 

2009). 

18 United States International Council on Disabilities, 

http://www.usicd.org/disconvention.htm (accessed March 13, 2009). 
93

19 Kaiser Family Foundation, “Health Care for Americans with Disabilities,” op. cit. [n.4] 

p. 1. 

20 Ibid., 2. 

21 National Rehabilitation Hospital Center for Health and Disability, “Improved Health 

Care Access May Help Prevent Secondary Conditions Among People with Disabilities,” 

National Rehabilitation Hospital Research Update (2002), 3. 

22 H. Stephen Kaye, Disability Watch: The Status of People with Disabilities in the 

United States, Vol. 2. (Volcano, CA: Volcano Press, 1997), pp. 7-9, 11-12 

23 National Council on Disability, “The Current State of Health Care for People with 

Disabilities” (Washington, DC: NCD, forthcoming). 

24 Jeffrey S. Crowley and Rise Elias, “Medicaid’s Role for People with Disabilities” (The 

Kaiser Commission on Medicaid and the Uninsured, August 2003), p. 17 and 28. 

25 M. T. Nero and T. Kroll, “Understanding the Consequences of Access Barriers to 

Health Care: Experiences of Adults with Disabilities,” Disability and Rehabilitation 25, 

no. 2 (2003): 85-96. 

26 National Academies, “Healthy People 2000: Citizens Chart the Course” (Washington, 

DC: National Academy Press, 1990). 

27 Barbara Martinez, “Cash Before Chemo: Hospitals Get Tough,” Wall Street Journal, 

April 28, 2008, 

http://online.wsj.com/article/SB120934207044648511.html?mod=hpp_us_pageone

(accessed October 23, 2008).

28 “Online News Hour: Coping without Health Insurance,” News Hour with Jim Lehrer, 

November 28, 2005. Transcript accessible online at 

http://www.pbs.org/newshour/bb/health/july-dec05/insurance_11-28.html (accessed 

October 23, 2008). 

29 Ibid. 

30 The Kaiser Commission on Medicaid and the Uninsured, “Medicaid’s Role for People 

with Disabilities” (Washington, DC: Kaiser Family Foundation, 2003), 28, 

http://www.kff.org/medicaid/upload/Medicaid-s-Role-for-People-with-Disabilities.pdf

(accessed February 23, 2009). 

31 U.S. Department of Health and Human Services, Office on Disability, “Disability and 

Aging” (Washington, DC: HHS), 

http://www.dhhs.gov/od/about/fact_sheets/disabilityaging.html (accessed October 23, 

2008). 

32 Centers for Disease Control and Prevention and the Merck Company Foundation, 

“The State of Aging and Health in America 2007 Report” (March 2007), 

http://www.cdc.gov/aging/saha.htm (accessed October 23, 2008). 
94

33 Ibid. 

34 L. I. Rezone, and Vicki A. Freedman, “Turning the Tide: The Importance of 

Definitions” (Chicago, IL: The American Medical Association, January 2008), 332-334. 

35 U.S. Department of Health and Human Services, “Recruitment and Retention of 

Direct Care Workers Symposium” (Washington, DC: HHS, May 2004), 

http://aspe.hhs.gov/daltcp/Reports/04cfpk02.htm (accessed February 20, 2009). 

36 Andrew J. Imparato testimony, Senate Health, Education, Labor, and Pensions 

Committee, “Community Services and Supports: Planning Across the Generations,” 

110th Cong., 1st sess. (2007), Cong. Rec vol. 153 no 109 (July 10, 2007,) 

http://help.senate.gov/Hearings/2007_07_10/Imparato.pdf (accessed February 17, 

2009). 

37 Gary Smith, et al., George Washington University, and Center for Health Policy 

Research, “Understanding Medicaid Home and Community Services: A Primer” 

(Washington, DC: U.S. Department of Health and Human Services, October 2000), 

http://aspe.hhs.gov/daltcp/reports/primer.htm (accessed on February 18, 2009). 

38 See Martin Kitchener, Ph.D., Mauro Hernandez, Ph.D., Terrence Ng, M.A., and 

Charilene Harrington, Ph.D., “Residential Care Provision in Medicaid Home- and 

Community-Based Waivers: A National Study of Program Trends,” The Gerontologist 46 

(2006):165-172, http://gerontologist.gerontologyjournals.org/cgi/content/full/46/2/165

(accessed February 18, 2009). “In 2003, nursing home services consumed 67% of 

Medicaid long-term expenditures, while only 33% went to home- and community-based 

services.” 

39 National Council on Disability, “Keeping Track,” op. cit. [n.7] p. 77. 

40 Olmstead v. L.C., 527 U.S. 581 (1999). 

41 Initially, the Money Follows the Person Act was adopted in 2007 as a competitive 

grant program. It would not be mandatory for states or available in every state. For 

CMS’s proposed home- and community-based program regulations, under moratoria 

until April 1, 2009, see 73 FR 18676 (April 4, 2008). For issues raised by CMS’s 

approach, see “NASMD and APHSA Submit Comment Letter on Medicaid Home and 

Community-Based State Plan Services Proposed Rule,” Working for Tomorrow—The 

Newsletter of the Center for Workers with Disabilities (June 2008), 

http://cwd.aphsa.org/publications/docs/CWD-06-08.pdf (accessed February 17, 2009). 

42 National Council on Disability, “The Impact of the Americans with Disabilities Act: 

Assessing the Progress Toward Achieving the Goals of the ADA,” op. cit. [n.1] p. 75. 

43 Many twenty-first-century Americans consider the term “mentally retarded” offensive, 

and use “people with intellectual disabilities” instead. 

44 Medicaid Community Attendant Services Act of 1997, H.R. 2020, 105th Cong., 1st 

sess. (June 24, 1997). 
95

45 Recommendation also advanced in National Council on Disability, “The Impact of the 

Americans with Disabilities Act: Assessing the Progress Toward Achieving the Goals of 

the ADA,” op. cit. [n.1] p. 45. 

46 R. Kessler et al., “Prevalence, Severity, and Comorbidity of 12-Month DSM-IV 

Disorders,” National Comorbidity Survey Replication, Archives of General Psychiatry 62 

(2005): 617-709. 

47 U.S. Department of Health and Human Services, “Mental Health: A Report of the 

Surgeon General” (Rockville, MD: HHS, Substance Abuse and Mental Health Services 

Administration, Center for Mental Health Services, 1999), 408-409, 411. 

48 P. Wang, et al., “Failure and Delay In Initial Treatment Contact After First Onset Of 

Mental Disorders,” National Comorbidity Survey Replication Archives of General 

Psychiatry 62 (2005): 603-613. 

49 Substance Abuse and Mental Health Administration, “Reimbursement of Mental 

Health Services in Primary Care Settings” (Rockville, MD: HHS, February 2008), 

http://download.ncadi.samhsa.gov/ken/pdf/SMA08-4324/SMA08-4324.pdf (accessed 

February 19, 2009). 

50 The Institute of Medicine, “Improving the Quality of Health Care for Mental and 

Substance Use Conditions” (Washington, DC: IOM, 2005). 

51 National Council on Disability, “National Council on Disability Housing Initiative” 

(Washington, DC: NCD, 2008), 

http://www.ncd.gov/research_opportunity/housing_application.html (accessed February 

17, 2009). 

52 Nathalie P. Voorhees Center for Neighborhood and Community Improvement, 

“Locating Affordable and Accessible Housing for People with Disabilities in Illinois” 

(Chicago, Ill.: Voorhees Center, 2007), 

http://www.uic.edu/cuppa/voorheesctr/Publications/IHARPFinalRpt05_07.pdf (accessed 

February 20, 2009). 

53 An example is the Voorhees Center, “Locating Affordable and Accessible Housing for 

People with Disabilities in Illinois” (Chicago, Ill.: Voorhees Center, 2007), 

http://www.uic.edu/cuppa/voorheesctr/publications (accessed February 18, 2009). 

54 See Z. Neubergou, “Asset Limits in Federal Benefit Programs: Implications and IDA 

Policy” (Washington, DC: Center for Budget and Policy Priorities, 2004); see also 

CFED, “A Look at the Growing Individual Development Account Field: Results from the 

2003 Survey of IDA Programs” (Washington, DC: CFED, 2004). 

55 National Council on Disability, “Creating Livable Communities” (Washington, DC: 

NCD, 2006): 143-150. 

56 Traditionally, the tax system has sought to influence disability policy by creating 

incentives, such as the design incentives in the Architectural Barriers Removal 

Deduction or the support for reasonable accommodations under the Disabled Access 
96

Credit. Linking the availability of mainstream provisions to comply with accessibility and 

nondiscrimination requirements would constitute a more aggressive use of the tax law, 

but it is a use that is well and long-recognized outside the sphere of disability. Compare 

“Increasing Affordable, Accessible, Integrated Housing—One State’s Strategy to 

Increase LIHTC Units,” Steve Gold Information Bulletin no. 236 (January 2008), which 

recounts strategies used by advocates, including recommending visitability requirement 

for all units. 

57 National Council on Disability, “Empowerment for Americans with Disabilities: 

Breaking Barriers to Careers and Full Employment” (Washington, DC: NCD, 2007), 

http://www.ncd.gov/newsroom/publications/2007/NCDEmployment_20071001.htm

(accessed February 20, 2009). 

58 K. A. Dixon, D. Kruse, and C. E. van Horn, “Restricted Access: A Survey of 

Employers about People with Disabilities and Lowering Barriers to Work” (New 

Brunswick, NJ: Heldrich Center for Workforce Development, Rutgers University, 2003); 

S. Bruyère, “Disability Employment Policies and Practices in Private and Federal Sector 

Organizations” (Ithaca, NY: Cornell University, School of Industrial and Labor Relations 

Extension Division, Program on Employment and Disability, 2000). 

59 M. L. Baldwin and W. G. Johnson, “A Critical Review of Studies of Discrimination 

against Workers with Disabilities,” in Handbook on the Economics of Discrimination, ed. 

W. M. Rodgers III (Northampton, MA: Edgar Elgar Publishing, 2006). 

60 National Council on Disability, “Implementation of the Americans with Disabilities Act: 

Challenges, Best Practices, and New Opportunities for Success” (Washington, DC: 

NCD, 2007), http://www.ncd.gov/newsroom/publications/2007/implementation_07-26-

07.htm (accessed February 20, 2009). 

61 U.S. Equal Employment Opportunity Commission (EEOC), “Improving the 

Participation Rate of People with Targeted Disabilities in the Federal Work Force” 

(Washington, DC: EEOC, 2008), http://www.eeoc.gov/federal/report/pwtd.html

(accessed February 20, 2009). Compare EEOC Management Directive (MD) 715 

(Washington, DC: EEOC, 2003), http://www.eeoc.gov/federal/eeomd715.html

(accessed February 20, 2009). The report was about the implementation of Section 501 

employment discrimination protection in the Federal workforce. 

62 H.R. 3696, 110th Cong., 1st sess. (2007). This bill exempted the first $75,000 in 

defined contribution retirement plans from countability for Medicaid purposes. 

63 Added to the law beginning in 1981, these include the trial work period (TWP), 

impairment-related work expenses (IWREs), extended periods of eligibility (EPE) (under 

Medicare), and under the SSI program only, blind work expenses (BWEs) and plans for 

achieving self-support (PASS). 

64 Key provisions allow SSI and SSDI recipients who have assigned their “tickets” to an 

employment network (EN) or who meet other conditions to maintain health care 

benefits. Several mechanisms are used to accomplish this goal, including relaxation of 

income limits and suspension of certain periodic eligibility redeterminations. 
97

65 U.S. Department of Labor, National Center for Workforce and Disability, Access for 

All in Workforce Development, “Benefits Planning and Counseling” (Washington, DC: 

DOL, 2001-2008), http://www.onestops.info/subcategory.php?subcat_id=108 (accessed 

February 23, 2009). 

66 See the benefits chart posted on the Center for Budget and Policy Priorities (CBPP) 

Web site, www.cbpp.org/8-28-07health.htm (accessed February 17, 2009). 

67 Public Law 105-220 (29 U.S.C. 701), which defines technology in the vocational 

rehabilitation process. 

68 National Council on Disability, “The Current State of Transportation for People with 

Disabilities in the United States” (Washington, DC: NCD, 2005), 

http://www.ncd.gov/newsroom/publications/2005/pdf/current_state.pdf (accessed 

February 20, 2009). 

69 49 U.S.C. Section 5317. “Safe, Accountable, Flexible Efficient Transportation Equity 

Act: A Legacy for Users” (2005). 

70 Federal Transit Administration, “New Freedom Appointments” (Washington, DC: FTA, 

2009), http://www.fta.dot.gov/funding/grants/grants_financing_7187.html (accessed 

February 20, 2009). 

71 Federal Transit Administration, “New Freedom Funds Awarded FY 2006-2008” 

(Washington, DC: FTA, 2009), 

http://www.fta.dot.gov/documents/NF_obligation_trends.xls (accessed February 20, 

2009). 

72 Pedestrian Safety Enhancement Act of 2009, H.R. 734, 111th Cong., 1st sess. 

(January 28, 2009). 

73 National Council on Disability, “The No Child Left Behind Act and the Individuals with 

Disabilities Education Act: A Progress Report” (Washington, DC: NCD, 2008), 

http://www.ncd.gov/newsroom/publications/2008/NoChildLeftBehind_IDEA_Progress_R

eport.html (accessed February 20, 2009). 

74 National Council on Disability, “The Rehabilitation Act: Outcomes for Transition Age 

Youth” (Washington, DC: NCD, October 2008), 

http://www.ncd.gov/newsroom/publications/index.htm (accessed January 28, 2009). 

75 American Foundation for the Blind, “Distance Learning: How Accessible are Online 

Educational Tools” (New York, NY: AFB, November 2008), 

http://www.afb.org/Section.asp?SectionID=3&TopicID=138&DocumentID=4492

(accessed February 25, 2009). 

76 Ibid. 

77 Public Law 110-315, 110th Cong., 2nd sess. (2008). 
98

78 Rehabilitation Act Amendments of 1992, Public Law 102-569, 102nd Cong., 2nd 

sess. (1992), http://www.mncdd.org/parallels2/pdf/93-TRA-VCU.pdf (accessed February 

18, 2009). 

79 Nicholas Johnson, et al., “Facing Deficits, At Least 40 States Are Imposing or 

Planning Cuts that Hurt Vulnerable Residents” (Washington, DC: Center on Budget and 

Policy Priorities, February 10, 2009), http://www.cbpp.org/3-13-08sfp.htm (accessed 

February 9, 2009). 

80 Ibid. 

81 The White House Press Office, “Obama Announces White House Office of Faithbased and Neighborhood Partnerships,” press release (February 5, 2009), 

http://www.whitehouse.gov/the_press_office/ObamaAnnouncesWhiteHouseOfficeofFait

h-basedandNeighborhoodPartnerships/ (accessed February 20, 2009). 

82 USAService Blog, “All Because of You” (January 22, 2009), 

http://usaservice.org/blog/entry/all_because_of_you/ (accessed February 3, 2009). 

83 See Metro Area Mayors' Committee for People with Disabilities, “MAMC- Metro 

Shovel Out - 01/19/09 Day of Service,” http://www.youtube.com/watch?v=gK00qCBSjUk

(accessed February 16, 2009). 

84 See USAService, “Emergency Food Drive,” 

http://www.usaservice.org/page/event/detail/4v9fg (accessed February 16, 2009). 

85 See articles, “Volunteer Florida Receives Awards for Inclusion of People with 

Disabilities” and “Ramps, a Community Service Project” http://www.volunteerflorida.org/. 

(accessed February 20, 2009). 

86 Ending the Medicare Disability Waiting Period Act of 2007, H.R. 154, 110th Cong., 1st 

sess. (January 4, 2007). 

87 National Council on Disability, “Implementation of the Americans with Disabilities Act: 

Challenges, Best Practices, and New Opportunities for Success” (Washington, DC: 

NCD, 2007), http://www.ncd.gov/newsroom/publications/2007/implementation_07-26-

07.htm (accessed February 20, 2009). 

88 Ibid. 

89 42 U.S.C. § 12188(a) incorporates only the “remedies and procedures set forth in 

section 204(a) of the Civil Rights Act of 1964,” which includes prospective injunctive 

relief. 

90 Buckhannon Board and Care Home, Inc. v. West Virginia Department of Health and 

Human Resources, 532 U.S. 598, 605 (2001); see National Council on Disability, 

Righting the ADA series, no. 17, “The Supreme Court's Rejection of the ‘Catalyst 

Theory’ in the Awarding of Attorneys' Fees and Litigation Costs” (Washington, DC: 

NCD, June 16, 2003). 

91 United States Commission on Civil Rights, “Funding Federal Civil Rights: 2000 and 

Beyond” (Washington, DC: USCCR, 2001]), 

http://www.usccr.gov/pubs/crfund01/main.htm. (accessed February 18, 2009). 
99

92 National Council on Disability, “Keeping Track,” op. cit. [n.7] p. 79. 

93 National Council on Disability, “Livable Communities for Adults with Disabilities” 

(Washington, DC: NCD, 2004), 

http://www.ncd.gov/newsroom/publications/2004/LivableCommunities.htm (accessed 

January 29, 2009). 

94 National Council on Disability, “Creating Livable Communities” (Washington, DC: 

NCD, 2006), http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm

(accessed January 29, 2009). 

95 National Council on Disability, “Livable Communities for Adults with Disabilities” 

(Washington, DC: NCD, 2004), 

http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm (accessed 

February 20, 2009). 

96 National Council on Disability, “Creating Livable Communities” (Washington, DC: 

NCD, 2006), http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm

(accessed January 29, 2009). 

97 National Council on Disability, “Inclusive Livable Communities for People with 

Psychiatric Disabilities” (Washington, DC: NCD, 2008), 

http://www.ncd.gov/newsroom/publications/2008/LivableCommunities.html (accessed 

February 20, 2009). 

98 See Qi Wang, “Disability and American Families: 2000: Census 2000 Special Report” 

(Washington, DC: U.S. Census Bureau, July 2005), 

http://www.census.gov/prod/2005pubs/censr-23.pdf (accessed February 2, 2009). 

99 National Council on Disability, “The State of 21st Century Financial Incentives for 

Americans with Disabilities” (Washington, DC: NCD, 2008),

http://www.ncd.gov/newsroom/publications/2008/FinancialIncentives.html (accessed 

February 9, 2009). 

100 National Council on Disability. “Empowerment for Americans with Disabilities: 

Breaking Barriers to Careers and Full Employment” (Washington DC: NCD, 2007), 

http://www.ncd.gov/newsroom/publications/2007/NCDEmployment_20071001.htm

(accessed February 2, 2009). 

101 U.S. Congress, House Committee on Homeland Security, Lessons Learned: 

Ensuring Delivery of Donated Goods to Survivors of Catastrophes, 110th Cong., 2nd 

sess., 2008, http://homeland.house.gov/Hearings/index.asp?ID=162 (accessed 

February 20, 2009); U.S. Congress, House Committee on Homeland Security, Moving 

Beyond the First Five Years: Ensuring FEMA’s Ability to Respond and Recover in the 

Wake of a National Catastrophe, 110th Cong., 2nd sess., 2008, 

http://homeland.house.gov/Hearings/index.asp?ID=124 (accessed February 20, 2009); 

U.S. Congress, Senate, It Takes a Village: Community Preparedness,” 110th Cong., 

2nd sess., 2008, 

http://hsgac.senate.gov/public/index.cfm?Fuseaction=Hearings.Detail&HearingID=ef12e

138-5870-41bc-bbc4-7cb6da6391a4 (accessed February 20, 2009). 
100

102 Government Accountability Office, “Federal Disability Assistance: Wide Array of 

Programs Needs to be Examined in Light of 21st Century Challenges” (Washington, 

DC: Government Printing Office, 2005), http://www.gao.gov/new.items/d05626.pdf

(accessed February 20, 2009). 

103 Government Accountability Office, “Highlights of a Forum: Modernizing Federal 

Disability Policy” (Washington, DC: Government Printing Office, 2007), 

http://www.gao.gov/new.items/d07934sp.pdf (accessed February 20, 2009).