The Current State 

of Health Care 

for People with 

Disabilities

National Council on Disability

September 30, 2009
National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

The Current State of Health Care for People with Disabilities

This report is also available in alternative formats and on the National Council on 

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

Publication date: September 30, 2009

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

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 

1331 F Street, NW Suite 850 Washington, DC 20004 

202-272-2004 Voice 202-272-2074 TTY 202-272-2022 Fax www.ncd.gov 

Letter of Transmittal 

September 30, 2009 

The President 

The White House 

Washington, DC 20500 

Dear Mr. President: 

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

report, entitled “The Current State of Health Care for People with Disabilities.” NCD 

undertook this study in 2007 to focus the nation’s attention on the health care disparities 

experienced by people with disabilities, and to provide information and 

recommendations that can help to eliminate health care inequities for people with 

disabilities. 

Some key findings include the following: 

● People with disabilities experience significant health disparities and barriers to 

health care, as compared with people who do not have disabilities. 

● People with disabilities frequently lack either health insurance or coverage for 

necessary services, such as specialty care, long-term services, prescription 

medications, durable medical equipment, and assistive technologies. 

● Most federally funded health disparities research does not recognize and 

include people with disabilities as a disparity population. 

● The absence of professional training on disability competency issues for health 

care practitioners is one of the most significant barriers preventing people with 

disabilities from receiving appropriate and effective health care. 

● The Americans with Disabilities Act (ADA) has had limited impact on how health 

care is delivered for people with disabilities. Significant architectural and 

programmatic accessibility barriers still remain, and health care providers 

continue to lack awareness about steps they are required to take to ensure that 

patients with disabilities have access to appropriate, culturally competent care. 
The report offers a broad range of recommendations for reforms that will address some 

of the most significant obstacles to health, health care, disease prevention, and health 

promotion for people with disabilities. We believe that this report provides a road map 

for eliminating the pervasive barriers to health care for people with disabilities, which will 

improve the quality of life, productivity, and well-being of greater numbers of Americans 

as the population ages. We also believe that this report is in keeping with the 

Administration’s goals for inclusive health care reform. 

Our Council stands prepared to work with your Administration in the planning and 

implementation of cooperative actions on these matters. 

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 

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, Coordinator of Administration 

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

Anne C. Sommers, Legislative Affairs Specialist 

Stacey S. Brown, Staff Assistant 

Carla Nelson, Administrative Specialist 

3 
Acknowledgments 

The National Council on Disability (NCD) wishes to express its gratitude to the following 

people who helped draft this report: Mary Lou Breslin and Silvia Yee, along with Tyler 

Zoanni, Charlotte Lanvers, Catherine Engstrom, Acer Tolentino, Rachel Hamburg, and 

Christopher Kypreos, of the Disability Rights Education and Defense Fund (DREDF); 

Nancy Mudrick, of the School of Social Work, Syracuse University; Kristi Kirschner, Judy 

Panko Reis, and Carmen Cicchetti, of the Rehabilitation Institute of Chicago; and Mary 

Margaret Sharp-Pucci, of Sharp Health Strategies. 

4 
Contents 

EXECUTIVE SUMMARY ................................................................................................ 9

Health Coverage and Benefits.................................................................... 11

Health and Health Disparities Research..................................................... 12

Professional Training and Education.......................................................... 13

Americans with Disabilities Act (ADA) and Section 504 Monitoring 

and Enforcement................................................................................... 14

Availability and Accuracy of Federal Health Data Concerning People 

with Disabilities ..................................................................................... 15

Universal Design ........................................................................................ 16

Health Care Accreditation........................................................................... 16

Federal Legislation ..................................................................................... 16

Disability Community Advocacy ................................................................. 16

Effective Programs ..................................................................................... 17

Recommendations ..................................................................................... 17

INTRODUCTION........................................................................................................... 21

A. Need for the Study ................................................................................ 21

B. Overview: Disability Prevalence and Key Problems and Barriers 

to Health and Health Care for People with Disabilities.......................... 22

C. Research Questions.............................................................................. 24

D. Research Methodology ......................................................................... 25

E. Definitions ............................................................................................. 28

F. Organization of the Report .................................................................... 30

CHAPTER 1. Health and Disability........................................................................... 33

A. Self-Assessed Health Status and Access to Care................................. 33

B. Gaps in and Barriers to Health Care for People with Disabilities........... 43

C. Health Status and Unique Barriers to Care for Women with 

Disabilities, People Who Are Deaf or Hard of Hearing, People 

Who Are Blind or Have Vision Impairments, and People with 

Intellectual and Developmental Disabilities ........................................... 51

D. Conclusion and Recommendations....................................................... 93

5 
CHAPTER 2. Health Care and Federal Access Requirements............................... 97

A. The Americans with Disabilities Act and Section 504............................ 97

B. Conclusion and Recommendations..................................................... 106

CHAPTER 3. Legal and Administrative Framework for Health Care and 

Health Disparities Programs and Research.................................... 109

A. Social Security Act .............................................................................. 109

B. Developmental Disabilities Assistance and Bill of Rights Act of 2000... 119

C. Title IX of the Public Health Service Act, As Added by Public Law 

106-129............................................................................................... 123

D. Minority Health and Health Disparities Research and Education 

Act of 2000.......................................................................................... 126

E. Title II of the Rehabilitation Act of 1973 and the National Institute 

on Disability and Rehabilitation Research........................................... 131

F. Entities Created and Authorized Under the Public Health Service Act.. 132

G. Conclusion and Recommendations..................................................... 137

CHAPTER 4. Assessment of Key Federal Efforts That Promote Health for 

People with Disabilities .................................................................... 141

A. Introduction ......................................................................................... 141

B. Overview of Key Federal Efforts That Promote Health for People 

with Disabilities ................................................................................... 143

C. A Summary of Key Federal Health Disparities Initiatives for 

People with Disabilities ....................................................................... 177

D. Summary of Recent and Current Federal Efforts in Health 

Promotion and Disease Prevention for Women with Disabilities, 

People Who Are Blind or Have Vision Impairments, People Who 

Are Deaf or Hard of Hearing, and People with Intellectual and 

Developmental Disabilities .................................................................. 179

E. Conclusion and Recommendations..................................................... 182

CHAPTER 5. Availability and Accuracy of Federal Health Data Concerning 

Americans with Disabilities.............................................................. 187

A. Use of Databases by Sponsoring Agencies To Understand the 

Health Care Experience of People with Disabilities ............................ 187

B. Gaps in and Problems with Data Sources’ Ability or Utilization for 

Providing Information About the Health Care Experiences of 

People with Disabilities ....................................................................... 190

C. Conclusion and Recommendations..................................................... 201

6 
CHAPTER 6. Summit on Health Care for People with Disabilities ...................... 205

A. Overview ............................................................................................. 205

B. Planning Process ................................................................................ 206

C. Structure ............................................................................................. 207

D. Summit Proceedings ........................................................................... 209

E. Conclusion and Recommendations..................................................... 237

CHAPTER 7. Examples of Effective Health Care, Research, and Related 

Programs for People with Disabilities............................................. 239

A. People with Physical Disabilities—An Effective Program.................... 240

B. People with Developmental Disabilities—Effective Programs............. 241

C. Women with Disabilities—Effective Programs..................................... 248

D. People Who Are Blind or Have Vision Impairments—Effective 

Programs ............................................................................................ 256

E. People Who Are Deaf or Hard of Hearing—Effective Programs ......... 259

F. Children with Disabilities—A Practice with Potential ........................... 265

G. Professional Education—A Practice with Potential ............................. 265

H. Conclusion and Recommendations..................................................... 266

CHAPTER 8. Findings and Recommendations..................................................... 271

A. Findings Responding to the Research Questions ............................... 271

B. Required Elements for Access to Health Care for People with 

Disabilities........................................................................................... 300

C. Health and Health Disparities Research ............................................. 302

D. Federal Agency Political and Structural Issues ................................... 303

E. Professional Training and Education................................................... 304

F. Federal Legislative Mandates and Funding ........................................ 305

G. Interagency Collaborations ................................................................. 308

H. List of Recommendations.................................................................... 309

I. Conclusion .......................................................................................... 327

7 
APPENDIX A. Key Informant Interviewees and Informational Interviewees ........ 329

APPENDIX B. NCD Health Care Summit Participant List, April 2008 ................... 335

APPENDIX C. List of Methods Related to Data Collection Assessment and 

Matrix of Selected Studies and Datasets ........................................ 361

APPENDIX D. Key Federal Agency Definitions of Health Disparity...................... 371

APPENDIX E. NCD Health Care Summit Additional Recommendations for 

Reform and Stakeholder Actions..................................................... 373

APPENDIX F. Additional NCD Health Care Summit Information: Summit 

Agenda, Summary of Oral Content Presentations, and Summit 

Planning Committee List.................................................................. 381

APPENDIX G. Mission of the National Council on Disability................................. 413

ENDNOTES ................................................................................................................ 417

8 
Executive Summary 

Primary barriers to health and health care for the general population are beginning to be 

well documented, and heightened national awareness of these obstacles has spurred 

numerous proposals for health care reform. Among the groups that face such barriers 

are Americans with disabilities. Information remains limited, but recent studies indicate 

that people with disabilities experience both health disparities and specific problems in 

gaining access to appropriate health care, including health promotion and disease 

prevention programs and services. They also frequently lack either health insurance or 

coverage for necessary services such as specialty care, long-term care, care 

coordination, prescription medications, durable medical equipment, and assistive 

technologies. 

Although there have been attempts to address some of these barriers, significant 

problems remain. For example, Federal health care funding agencies such as the 

Centers for Medicare & Medicaid Services (CMS) neither conduct oversight of 

Americans with Disabilities Act (ADA) architectural and programmatic accessibility 

compliance by states, health plans, and medical providers, nor assess health providers’ 

disability cultural competence. Few professional health care training programs address 

disability issues in their curriculums, and most federally funded health disparities 

research does not recognize or include people with disabilities as a disparity population. 

These and related challenges will affect the quality of life, productivity, and well-being of 

greater numbers of Americans as the population ages, which is projected to lead to an 

increase in the number of people with disabilities. Given these changes, it is especially 

important to understand the complex and interrelated factors that contribute to health 

and health care inequities for people with disabilities, and to identify practical solutions. 

According to the U.S. Census Bureau, of the 291.1 million people in the population in 

2005, 54.4 million (18.7 percent) had some level of disability, and 35.0 million 

(12.0 percent) had a severe disability. Rates of disability also increase with age. By 

2030, estimates suggest that the number of people aged 65 years and older will rise to 

69.4 million from 34.7 million in 2000. People with disabilities comprise the largest and 

9 
most important health care consumer group in the United States, yet the Institute of 

Medicine and others have warned that Federal agencies, policymakers, and health care 

systems have not yet responded to the broad-ranging implications, for individuals and 

for society, of the demographic increase in disability as the population ages. 

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. They also experience 

a higher prevalence of secondary conditions and use preventive services at a lower rate 

than others. Moreover, people with disabilities are affected disproportionately by 

barriers to care. These barriers include health care provider stereotypes about disability, 

lack of appropriate training, and a lack of accessible medical facilities and examination 

equipment, sign language interpreters, and individualized accommodations. 

People with certain disabilities experience specific health disparities and additional 

unique problems in accessing health care and services. If these problems can be 

resolved, crosscutting solutions hold the potential to improve health care for the broader 

disability community. For example: 

● Women with significant disabilities are likely to have fewer Pap tests and 

mammograms than women who do not have disabilities, and they appear to 

have less knowledge and awareness of risk factors for cardiovascular disease 

and participate in less preventive screening for this disease compared with 

women without disabilities. 

● Adults who are deaf or who experience significant problems hearing were three 

times as likely to report fair or poor health compared with those who did not 

have hearing impairments. American Sign Language (ASL) is the primary 

language for many people who are deaf, yet interpreters frequently are not 

provided during medical visits. Consequently, people who are deaf have 

significant difficulty communicating effectively with their health care providers 

and receiving health care information and instructions. 

10 
● Adults with developmental disabilities are at risk for hearing and vision 

difficulties, cardiovascular disease, obesity, seizures, mental health and 

behavioral problems, poor oral health, and poor general fitness. Young adults 

with developmental disabilities often encounter significant problems when they 

attempt to make the transition from coordinated childhood medical care to adult 

services. Problems include primary care physicians who are not trained to 

provide needed care and insurance schemes that do not adequately 

compensate health care providers for the time required to provide care and care 

coordination. 

● People who experience significant vision loss are more likely to have heart 

disease and hypertension, experience a greater prevalence of obesity, and 

smoke more than the general population. Health care providers rarely supply 

printed health care instructions, educational materials, and information such as 

directions for taking prescription medications in accessible formats, and people 

who are blind or have vision impairments also appear to be excluded 

systematically from receiving high-quality diabetes education. Access to vision 

rehabilitation services also can be limited. 

Complex historical and structural factors have contributed to the health and health care 

inequities people with disabilities experience. Research conducted by NCD revealed 

overarching problems related to the Federal effort to promote health for people with 

disabilities, identified deficiencies in the roles of certain key non-Federal stakeholders, 

captured important ideas for reorienting the discussion about future reforms, and 

identified effective health programs for people with disabilities. 

NCD’s key findings include the following: 

Health Coverage and Benefits 

● The health care system in the United States is complex, highly fragmented, and 

sometimes overly restrictive in terms of program eligibility. This leaves some 

people with disabilities with no health care coverage and others with cost11 
sharing obligations and limits on benefits that prevent them from obtaining 

health-preserving prescription medications, medical equipment, specialty care, 

dental and vision care, long-term care, and care coordination. 

Health and Health Disparities Research 

● Dissonance is evident in the research goals and objectives of key agencies of 

the Department of Health and Human Services (HHS) and the National 

Institutes of Health (NIH) between the longstanding public health goal of 

eliminating disability and disease and the emerging view fostered by the U.S. 

Surgeon General’s report “Call to Action To Improve the Health and Wellness of 

Persons with Disabilities” and Focus Area 6 in “Healthy People 2010,” which for 

the first time in public health parlance, defines disability as a demographic 

characteristic. 

● Much of the Federal research effort remains focused on disability and disease 

prevention rather than on improving access to, and quality of, health care for 

people with disabilities, reducing their incidence of secondary health problems, 

and promoting healthy living. 

● People with disabilities experience significant health disparities compared with 

people who do not have disabilities, yet they are not included in major Federal 

health disparities research, as mandated by the Minority Health and Health 

Disparities Research and Education Act of 2000 and undertaken by the 

National Center on Minority Health and Health Disparities (NCMHD) and other 

centers and institutes of NIH. 

● It is very difficult to determine accurately the extent of the overall current 

Federal research effort aimed at addressing health disparities and promoting 

health and wellness for people with disabilities. This problem stems in part from 

the fact that no single Federal agency collects and catalogues health, health 

disparities, and health promotion research for people with disabilities conducted 

across all the agencies that have a role in health. 

12 
● Federally conducted or supported disability and health research appears to be 

poorly integrated into overall health disparities and health promotion research. 

● Specific structural problems evident in Federal agency disability research 

functionally impede the development of a unified, coherent plan for disability 

and health research and program development. Specifically, (1) the level of 

funding and research is wholly inadequate to spur a coherent investigative 

strategy that will inform policy and planning for the growing number of people 

who will acquire disabilities with age and for the overall future impact of 

disability on society; and (2) within the Federal research community, 

commitment to disability health disparities and health promotion research is 

weak, and coordination mechanisms are lacking. 

Professional Training and Education 

● The absence of professional training on disability competency issues for health 

care practitioners is one of the most significant barriers that prevent people with 

disabilities from receiving appropriate and effective health care. 

● Disability competency is not a core curriculum requirement for (1) accreditation 

or receipt of Federal funding for most medical and dental schools and other 

professional health care training institutions; or (2) for hospitals to participate in 

federally funded medical student internship and residency programs. In 

addition, applicants who seek either a medical or other professional health care 

license are generally not required to demonstrate disability competency. 

● Federal agencies such as the Health Resources and Services Administration 

(HRSA) have not identified people with disabilities or subgroups of people with 

disabilities as “underserved health care populations.” As a result, recent 

medical school graduates are not eligible for Federal loan forgiveness programs 

sponsored by these agencies if they work with programs that serve people with 

disabilities, and they are not provided with incentives to work in these settings. 

13 
● Federal funding is limited for the development of core curriculums on disability 

competency for medical, dental, and other professional health education 

institutions. 

Americans with Disabilities Act (ADA) and Section 504 Monitoring and 

Enforcement 

● The ADA has had limited impact on how health care is delivered for people with 

disabilities. Significant architectural and programmatic accessibility barriers 

remain, and health care providers continue to lack awareness about steps they 

are required to take to ensure that patients with disabilities have access to 

appropriate, culturally competent care, and about incentives for implementing 

such steps. 

● Federal agencies such as HHS, CMS, and HRSA do not require that 

procedures be established to collect information that would reveal the extent of 

compliance with the ADA and Section 504 of the 1973 Rehabilitation Act by the 

chain of recipients that administer health care funds and deliver health care. In 

the absence of such requirements as a condition of receiving funds, states 

simply pass through their nondiscrimination obligations in contracts with HMOs, 

health plans, and health provider organizations, which in turn pass on the same 

obligations to the health providers with whom they contract for services. Thus, 

Federal agencies, states, HMOs, and health plans take refuge behind the 

providers, who are subject to the lowest level of ADA and Section 504 

obligations. In the end, no one is held responsible for physical and 

programmatic accessibility in health care facilities and programs. 

● The U.S. Department of Justice and the Office for Civil Rights of the U.S. 

Department of Health and Human Services are charged with responsibility for 

enforcing the ADA and Section 504 in health care settings, yet they have taken 

on only a relatively small number of cases involving disability discrimination in 

health care, particularly when offices of health providers are involved. Without 

robust enforcement, the disability rights laws are ineffective tools for challenging 

14 
discriminatory conduct or care that people with disabilities often report 

experiencing. 

Availability and Accuracy of Federal Health Data Concerning People 

with Disabilities 

● There appears to be progress in the development and use of a consistent 

indicator of disability in Federal health surveys. For example, (1) in a number of 

recent reports on health, disability is used as a population variable; (2) there 

has been increased attention to and acknowledgement of the importance of 

collecting data about the health care experiences of people with disabilities; 

(3) promising research is underway to develop survey questions that will gather 

information not previously measured about the health care experiences of 

people with disabilities; and (4) some surveys are developing and implementing 

data collection methods that will result in the inclusion of people with disabilities 

who were previously excluded from surveys. 

● No regular sources of data exist to measure participation in wellness programs 

such as exercise classes, smoking cessation programs, or self-help or AA-type 

groups for substance abuse, nor do surveys ask people with disabilities about 

their access experiences with such programs. 

● The calculation of long-term benefits for people with disabilities from 

participation in wellness and prevention programs depends on the presence of 

studies that have measured outcomes. Currently, few studies measure the 

outcomes of interventions for smoking cessation, increased mammography 

screening, exercise, or other programs for people with disabilities. Nor do 

studies show whether the participation of people with disabilities in programs for 

broader populations were affected by access issues. A clear understanding of 

impact will require further research on the outcomes of health and wellness 

programs that include people with disabilities. 

15 
Universal Design 

● Key stakeholders from diverse communities highly recommended that principles 

of universal design be applied in all aspects and venues of health care, ranging 

from facilities design and construction to the development of quality measures, 

research design, and delivery of care that embrace everyone, including people 

with disabilities. 

Health Care Accreditation 

● Leading health care facility accreditation organizations, such as the Joint 

Commission, do not assess facilities for basic compliance with the ADA’s 

architectural accessibility guidelines as a requirement for accreditation. 

Federal Legislation 

● Legislation will be required to address some of the key gaps and barriers to 

health care that affect people with disabilities, including access to wellness and 

prevention services, health and health disparities research, development of 

care models built on principles of patient-centered care, and professional 

training. 

Disability Community Advocacy 

● Long-term health care reform must include the voices of people with disabilities, 

not only to advocate for improved health care insurance coverage, eligibility, 

and core benefits, but also to resolve issues of access to critical 

accommodations that ensure that health care is effective, such as payment 

coverage for sign language interpreters and requirements that providers 

demonstrate disability cultural competency. 

16 
Effective Programs 

The following effective health and health care programs for people with disabilities were 

identified. 

● The Deaf Access Program (DAP) of Mt. Sinai Hospital, Chicago, which offers a 

comprehensive program that provides both medical and mental health services 

for 1,300 deaf children and adults 

● A clinic operating in conjunction with the Sanford School of Medicine at the 

University of South Dakota, Sioux Falls, which identifies children on the 

Rosebud Reservation who are at risk for developmental disabilities and 

provides immediate care through early intervention 

● The Center for Women with Disabilities, Magee-Women’s Hospital, University of 

Pittsburgh Medical Center, which offers comprehensive, patient-centered care 

that integrates accessibility and accommodation for women with physical 

disabilities 

● The LightHouse for the Blind and Visually Impaired, San Francisco Vision Loss 

Resource Center (VLRC) offers an adaptive technology and health seminar that 

provides an audio transcript and information handouts of presentations on 

adaptive equipment, including accessible tools for glucose monitoring, weight 

management, healthy food preparation, and exercise equipment that aid in 

maintaining health. 

Recommendations 

NCD has identified a broad range of recommendations for reforms that are required to 

address some of the most significant obstacles to health, health care, and disease 

prevention and health promotion for people with disabilities. Recommendations are 

directed to key stakeholders, including Congress and the Administration, accreditation 

and professional medical organizations, states, and non-Federal organizations 

concerned with disability, health, and health care policy and research. 

17 
Recommendations are organized and presented in four categories: (1) research; (2) 

professional education, training, and technical assistance; (3) monitoring, oversight, and 

accountability; and (4) improving systemic access to health care services and programs. 

Research 

Some research is available concerning health and people with disabilities, yet significant 

problems, gaps, and challenges remain related to research needs. NCD has identified 

key areas in which additional research is required and recommends that specific actions 

be taken to ensure that issues of health and disability are included in ongoing research, 

and that new research is undertaken where it is needed. Research recommendations 

can be found in chapter 8, section H; they are numbered 1.1 through 1.18.

Professional Education, Training, and Technical Assistance 

Information related to disability cultural competency is lacking in most professional 

medical education programs, and only limited information is available for health care 

institutions and providers about methods to ensure physical and programmatic access 

for people with disabilities. Moreover, disability competency is generally not a 

requirement for medical practitioner licensing, educational institution accreditation, or 

medical education loan forgiveness. NCD has identified recommendations intended to 

address these and related issues. Recommendations concerning professional 

education, training, and technical assistance can be found in chapter 8, section H; they 

are numbered 2.1 through 2.8.

Monitoring, Oversight, and Accountability 

Limited implementation of key disability rights laws by health care systems, managed 

care organizations, and health care providers directly affects the quality of care 

available to people with disabilities. Poor Federal agency oversight of health care 

program and facility compliance with the ADA and Section 504 further exacerbates the 

problem. Likewise, leading accreditation organizations do not evaluate health care 

facilities for compliance with ADA architectural accessibility requirements. NCD has 

identified recommendations intended to increase oversight and spur enhanced 

18 
compliance, thereby improving access to health care services and programs for people 

with disabilities. Recommendations concerning monitoring, oversight, and accountability 

can be found in chapter 8, section H; they are numbered 3.1 through 3.9. 

Improving Systemic Access to Health Care Services and Programs 

People with disabilities have identified specific gaps and barriers to health care that can 

only be resolved through changes in current public policy. Recognizing that some of 

these problems appear to be intractable and significantly affect health outcomes for 

people with disabilities, NCD has identified specific recommendations aimed at 

addressing the most immediate gaps and barriers to care. Recommendations for 

improving systemic access to health care services and programs can be found in 

chapter 8, section H; they are numbered 4.1 through 4.10.

19 
20 
Introduction 

A. Need for the Study 

Primary barriers to health and health care for the general population are becoming well 

documented, and heightened national awareness of these obstacles has spurred 

numerous proposals for health care reform. Among the groups that face such barriers 

are Americans with disabilities. Even as information remains limited, recent studies 

indicate that people with disabilities experience both health disparities and specific 

problems in gaining access to appropriate health care, including health promotion and 

disease prevention programs and services. They also frequently lack either health 

insurance or coverage for necessary services such as specialty care, long-term care, 

prescription medications, durable medical equipment, and assistive technologies. 

Although attempts have been made to address some of these barriers, significant 

problems remain. For example, Federal health care funding agencies such as the 

Centers for Medicare & Medicaid Services (CMS) do not conduct oversight of 

Americans with Disabilities Act (ADA) architectural and programmatic accessibility 

compliance by states, health plans, and medical providers or assess health providers’ 

disability cultural competence. Few health care training programs address disability 

issues in their curriculums, and most federally funded health disparities research does 

not recognize and include people with disabilities as a disparity population. These and 

related challenges will affect the quality of life, productivity, and well-being of greater 

numbers of Americans as the population ages and the number of people with disabilities 

increases. Given these changes, it is especially important to understand the complex 

and interrelated factors that contribute to health and health care inequities for people 

with disabilities, and to identify practical solutions. 

NCD undertook “The Current State of Health Care for People with Disabilities” study to 

focus the nation’s attention on these concerns and provide information and 

recommendations that will help guide the development of long-term solutions for 

Congress, the Administration, and other stakeholders, including health care 

21 
organizations, insurers, health care providers, the health and disability research 

community, and people with disabilities. 

This chapter sets the stage for the report by introducing key problems and barriers to 

health and health care, and summarizing health trends for the nation’s 54.4 million 

people with disabilities. It also sets forth the project’s research questions and presents a 

brief overview of the research methodology NCD used to collect and evaluate 

information. The chapter provides a short discussion of the differences among disability, 

impairment, and health condition, and why these distinctions are important, especially 

for health and health care policy and research. The chapter concludes with a short road 

map, or overview, of the report. 

B. Overview: Disability Prevalence and Key Problems and Barriers to 

Health and Health Care for People with Disabilities 

According to the U.S. Census Bureau, in 2005, of the 291.1 million people in the 

noninstitutionalized population, 54.4 million (18.7 percent) had some level of disability, 

and 35.0 million (12.0 percent) had a severe disability.1 Physical disabilities tend to be 

more common than sensory or mental health disabilities. African Americans and 

Hispanics typically experience disability at a higher rate than do whites.2 Rates of 

disability also increase with age; 41.9 percent of individuals over the age of 65 report 

disability, compared with18.6 percent of people who are younger. Further, the numbers 

of older persons are expected to grow substantially during the next several decades.3

By 2030, the number of persons aged 65 years and older will rise to 69.4 million, from 

34.7 million in 2000. By 2050, the number of individuals aged 85 and older will also 

increase significantly, to 18.2 million, from 4.3 million in 2000.4

 Death rates from 

conditions such as heart disease are decreasing, which accounts for both the increase 

in life expectancies and an increase in the number of people who experience chronic 

disabilities, including arthritis, which is the leading cause of disability among adults.5

 

Although it has been well documented that this rapidly growing demographic is among 

the largest and most important health care consumer groups in the United States, the 

22 
Institute of Medicine (IOM) and others have warned 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.6

 

Responding to the implications of an expanding population of people with disabilities 

necessitates addressing the disparities they experience. 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. They also experience a higher prevalence of secondary 

conditions and use preventive services at lower rates.7 People with disabilities 

experience more problems accessing health care than other groups, and these 

difficulties increase for those with the most significant disabilities and who are in the 

poorest health. Moreover, lack of access to health care has been associated with 

increased risk for secondary conditions for people with significant disabilities.8 

Problems with accessing health care stem from barriers to care. People with disabilities 

are affected disproportionately by such barriers, 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 diverse disabilities; lack of sign language interpreters; lack of materials in 

formats that are accessible to people who are blind or have vision impairments; and 

lack of individualized accommodations. 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 and physical and vision 

rehabilitative services, and care coordination that are critical for health, independence, 

and self-determination. Further, inadequate transportation, limited personal assistance 

services, and patchwork financial assistance for people with low incomes compound the 

health problems and affect the overall health status of people with disabilities.9

 

23 
C. Research Questions 

NCD set out to answer the following research questions for this report: 

1. What are the key Federal efforts that promote health care as it relates to 

Americans with disabilities, including wellness and prevention services, and 

how effective are these efforts? 

2. Are accurate health data available concerning Americans with disabilities? 

3. What are the access barriers to health care, including barriers to wellness and 

prevention services, for people with disabilities? 

4. What are the unique access barriers to health care for women with disabilities, 

people who are deaf or hard of hearing, people who are blind or have vision 

impairments, and people with intellectual and developmental disabilities? 

5. What programs initiated by the public and private sectors have improved 

access to coverage and care for Americans with disabilities? 

6. What are key disparities and gaps in third-party coverage of the types of 

programs and services most needed by Americans with disabilities, particularly 

women with disabilities, people who are deaf or hard of hearing, people who 

are blind or have vision impairments, and people with intellectual and 

developmental disabilities? 

7. How can the extensive recommendations identified in studies conducted by the 

Institute of Medicine and others be advanced? 

8. Are accurate health data available concerning access to wellness and 

prevention services and their relative long-term costs and benefits for 

Americans with disabilities? 

9. How effective are Federal efforts at health promotion and disease prevention 

(public health) as they affect Americans with disabilities, particularly women 

with disabilities, and people who are deaf or hard of hearing, people who are 

24 
blind or have vision impairments, and people with intellectual and 

developmental disabilities? 

10. What are the long-term costs and benefits of third-party coverage of programs 

and services most needed by Americans with disabilities? 

D. Research Methodology 

NCD undertook the following activities to collect and evaluate information for the report: 

1. Conducted a Literature Review 

An extensive literature review was undertaken to identify journal articles, studies, 

commentaries, conference proceedings, and other materials related to health, health 

care, health disparities, and health outcomes for people with disabilities. NCD consulted 

primary sources, including electronic databases, Federal agency resources, and 

specific academic journals, and spoke with key informants who identified specific 

reports and related documents. NCD also reviewed specific journals concerned with 

health and health care issues for the broad population of people with disabilities and for 

women with disabilities, people who are deaf or hard of hearing, people who are blind or 

have vision impairments, and people with intellectual and developmental disabilities. 

2. Conducted Key Informant and Informational Interviews 

Semistructured key informant telephone or in-person interviews were conducted with 23 

subject matter experts concerned with health, access to health care, health disparities, 

and health outcomes for people with disabilities. Informants included health care 

practitioners, researchers, Federal agency officials, and individuals with disabilities. 

Individuals were specifically identified and interviewed who had expertise not only on 

health matters of concern to the broad community of people with disabilities but also to 

women with disabilities, people who are deaf or hard of hearing, people who are blind or 

have vision impairments, and people with intellectual and developmental disabilities. 

Data experts were also interviewed. 

25 
In addition to the key informant interviews, informational telephone interviews were 

conducted with an additional 20 Federal agency staff, health care professionals, 

program managers, researchers, and others to clarify the scope and duration of certain 

research and programmatic activities or to confirm specific information regarding 

programs that might be considered effective for increasing access to health care or 

improving health. (See appendix A for a list of key informants and others with whom 

interviews were conducted.) 

3. Assessed the Role and Impact of Disability Rights Laws in Health and Health 

Care for People with Disabilities 

NCD summarized the applicability, effectiveness, and impact of the Americans with 

Disabilities Act (ADA) and Section 504 of the 1973 Rehabilitation Act to health care 

services and facilities for people with disabilities and conducted a review of key cases 

and their impact under each law. 

4. Reviewed the Legal and Administrative Framework for Key Health, Health 

Care, and Health Disparities Programs and Research 

NCD reviewed the Federal legislation that established major health research and health 

care programs and other health initiatives to determine the extent to which people with 

disabilities are included, to identify problems and gaps as they relate to the health care 

needs of people with disabilities, and to identify opportunities for increasing their 

participation. 

5. Reviewed Key Federal Health, Health Care, and Health Disparities Initiatives 

NCD identified key Federal agencies, departments, centers, and offices10 whose 

missions include health and health care research, health promotion and disease 

prevention, program development, and health care service delivery. NCD then 

determined the extent to which health care issues, including health disparities for people 

with disabilities, had been identified as a topic for research and whether health 

promotion, public and professional education, program intervention, health care 

26 
services delivery, and other related activities included people with disabilities and their 

issues.11 

6. Convened a Summit on Health Care for People with Disabilities 

NCD convened a Summit on Health Care for People with Disabilities to translate current 

knowledge about the problems people with disabilities experience in health, health care, 

and health outcomes into a plan for action. Twenty-five key stakeholder/expert 

participants attended the two-day meeting. Attendees were opinion leaders in their 

fields, including people with disabilities, policymakers, health care providers, leaders of 

professional associations and accreditation organizations, and health policy experts. 

The specific objectives of the summit were (1) to build on and refine the 

recommendations for systemic reform that have been identified by such organizations 

as the IOM, the U.S. Surgeon General, and others; (2) to identify step-by-step strategies 

for the implementation of key recommendations; and (3) to encourage participants to 

consider taking action within their spheres of influence. (See appendix B for a list of 

summit participants.) 

7. Assessed Data Availability 

NCD carried out a data assessment to determine the availability and accuracy of health 

data regarding Americans with disabilities. This review focused specifically on the 

current state of health care delivery for people with disabilities; health and health care 

disparities and access to wellness services by people with disabilities; and services 

specifically for women with disabilities, people who are deaf or hard of hearing, people 

who are blind or have vision impairments, and people with intellectual and 

developmental disabilities. 

The data assessment was focused on the large national datasets that regularly collect 

information about the health status, health care utilization, and health care delivery 

experience of Americans.12 (See appendix C for a list of content, framing, collection, 

and other methods related to data collection assessment.) 

27 
8. Identified Effective Programs That Improve Access to Health Care for People 

with Disabilities 

NCD identified examples of effective models in health care service delivery, 

professional education and training, disability competency assessment, and policy 

implementation. NCD also identified specific programs that serve women with 

disabilities, people who are deaf or hard of hearing, people who are blind or have vision 

impairments, and people with intellectual and developmental disabilities. Programs are 

included that meet three general criteria: 

● They respond to specific needs that have been defined either by people with 

disabilities or others who are very familiar with the health and health care needs 

of people with disabilities. 

● They are well established in terms of factors including longevity, funding, and 

institutional commitment. 

● They have conducted customer satisfaction or other evaluations that were 

available for review to determine their effectiveness and to make 

improvements.13

E. Definitions 

1. Disability, Impairment, and the Relationship Between Disability and Health 

Concepts of disability, impairment, and the relationship between disability and health 

have been evolving over many decades. Historically, disability was measured solely by 

the presence of an impairment or health condition. Since the 1970s, spurred by the 

disability rights movement, there has been a move away from this medical view to an 

alternative that acknowledges the interplay between levels of impairment and the 

facilitating or limiting effects of the physical, social, technological, and economic 

environment. In 2001, the World Health Organization (WHO) adopted the International 

Classification of Functioning, Disability and Health (ICF), which attempts to provide a 

coherent, global interpretation of these different perspectives. The ICF is a classification 

of domains from perspectives of the body, the individual, and society. Since function 

28 
and disability occur in a context, the ICF also includes a list of environmental factors. 

The ICF refers to disability as “an umbrella term for impairments, activity limitations, and 

participation restrictions.”14 Most disability and health researchers and advocates agree 

that this unified definition reflects a meaningful balance of factors and provides a useful 

approach to understanding disability in the health research context. Important recent 

population research reflects the influence of the ICF, yet no survey fully applies the 

ICF’s theoretical conceptualizations of disability.15 Various other, more traditional 

definitions of disability and impairment are still in use and appear throughout this report. 

They reflect the diverse perspectives, influence, and roles of the medical and research 

communities and of Federal agencies such as the Social Security Administration, as 

well as the impact of disability rights laws and policies. 

2. Health Disparity, Health Inequality, and Health Inequity 

The phrase “health disparity” is widely used in the articulation of health care research, 

funding, and service delivery priorities by both public and private organizations. The 

exact definition of health disparity varies. In some cases, it includes many population 

subgroups and indicators; in other cases, it is narrowly restricted to specific populations 

and health conditions. In broad terms, “health disparity” can be defined as “differences 

in health outcomes and health care access that occur between specific populations and 

the general population.” Many discussions of the definition of health disparity note that it 

incorporates two concepts: health inequality and health inequity.16 Health inequality 

indicates differences in health outcomes, some of which may be unavoidable and not 

judged unfair (such as outcomes related to biological variation). Health inequity 

describes differences in health outcomes or health care services received that are 

considered avoidable, unfair, and unjust. In most instances in the United States, when 

the phrase “health disparity” is used, it is understood to describe circumstances in which 

differences are interpreted to indicate bias or unacceptable disproportion in health 

outcomes, aspects of health care system access, or differences in health treatment for 

one group compared with the general population. (See appendix D for several Federal 

agency definitions of disparity.) 

29 
F. Organization of the Report 

Chapter 1 sets the context for the report by presenting a profile of the population of 

people with disabilities based on self-assessed health status, health risk factors, and 

participation in physical activity, and the extent to which they have access to health 

insurance and basic and preventive care compared with people who do not have 

disabilities. Next, specific gaps and barriers to care for people with disabilities are 

presented in more detail. To illustrate some of the specific problems people with 

disabilities experience, the chapter continues with a discussion of health and health 

care for four groups within the disability population: women with disabilities, people who 

are deaf or hard of hearing, people who are blind or have vision impairments, and 

people with intellectual and developmental disabilities. The chapter ends with 

recommendations for reform. 

Chapter 1 describes how the 1990 Americans with Disabilities Act (ADA) and Section 

504 of the 1973 Rehabilitation Act relate to health care services and facilities. It also 

examines some of the civil actions and settlements brought under these laws that 

illustrate both the usefulness and the shortcomings of individual and class action 

lawsuits in the area of health care. The chapter ends with recommendations for reform. 

Chapter 3 summarizes key Federal laws that establish major health programs in the 

United States—such as Medicaid, Medicare, and the State Children’s Health Insurance 

Program (SCHIP)—that serve significant numbers of people with disabilities. Laws are 

also introduced that relate to the Federal Government’s response to the existence of 

health and health care disparities among specific population groups but that generally 

exclude people with disabilities. This chapter suggests reasons for fully including people 

with disabilities in the nation’s ongoing effort to combat health and health care 

disparities. The chapter ends with recommendations for reform. 

Chapter 4 examines the extent to which people with disabilities are or are not included 

in the recent activities of key Federal agencies, departments, and centers as they relate 

to health, health care, health promotion, disparities research, data collection, 

30 
professional education, and other activities. The chapter also summarizes the Federal 

Government’s level of effort related to health disparities research and program 

development for people with disabilities, and ends with recommendations for reform. 

Chapter 5 reports on progress toward collecting data that help shape health research 

goals and health care policy and programs so that the specific needs of people with 

disabilities are identified and included. The chapter ends with recommendations for 

reform. 

Chapter 6 reports on outcomes of the Summit on Health Care for People with 

Disabilities. The meeting brought together health care experts, opinion leaders, Federal 

agency and disability community representatives, researchers, funders, and 

practitioners to discuss barriers to health and health care for people with disabilities and 

to create a strategic action plan to begin to address the problems. The chapter ends 

with recommendations for reform. 

Chapter 7 presents examples of effective programs that emphasize health and mental 

health care, as well as health education and promotion for people with disabilities, 

including women with disabilities, people who are deaf or hard of hearing, people who 

are blind or have vision impairments, and people with intellectual and developmental 

disabilities. Chapter 7 also includes several projects that involve structural innovations 

holding some promise for improving health care and health outcomes for people with 

disabilities. The chapter ends with recommendations for reform. 

Chapter 8 presents a summary of answers to the research questions and an overall 

analysis of findings, and lists the recommendations presented earlier. 

Appendixes A through F provide additional information that supplement issues 

presented in the report. 

31 
32 
CHAPTER 1. Health and Disability 

The health of people with disabilities is gaining national attention, and new research is 

beginning to sharpen the focus on the health status of people with disabilities, the barriers 

to care they encounter, and factors that contribute to their health risks, including 

participation in health promotion and disease prevention programs. Such studies are also 

revealing in greater detail the extent to which people with disabilities have access to health 

care insurance, regular sources of care, and appropriate services—including specialty care 

and assistive technologies—under both publicly funded and private coverage. 

The chapter begins with a profile of the population of people with disabilities based on 

self-assessed health status, health risk factors, and participation in physical activity, and 

the extent to which they have access to health insurance and basic care and preventive 

care, compared with people who do not have disabilities. Next, specific gaps and 

barriers to care for people with disabilities are presented in more detail. To illustrate 

some of the specific problems people with disabilities experience, the chapter continues 

with a discussion of health and health care for four groups within the disability 

population: women with disabilities, people who are deaf or hard of hearing, people who 

are blind or have vision impairments, and people with intellectual and developmental 

disabilities. The chapter ends with recommendations for reform. 

A. Self-Assessed Health Status and Access to Care 

1. Defining Disability 

A 2008 special report by the CDC’s National Center for Health Statistics (NCHS)17

tackles the challenging problem of defining disability by relating two levels of activity 

difficulty and by limitation to health status and other health indicators. The report also 

acknowledges the interaction of disability with environmental and social factors.18 Using 

5 years of data from the National Health Interview Survey (NHIS), the report provides a 

comparative analysis across dimensions that include health status, health risk factors, 

and access to care and clinical services for people with various levels of activity 

limitations and for people who do not have disabilities. 

33 
According to the study, about 62 million (30 percent) of noninstitutionalized people living in 

the United States experienced either some difficulty with “basic” movement, or cognitive, 

sensory, or emotional problems. (See exhibit 1-1.)19 The most common problem reported 

by more than one-fifth of those surveyed relates to basic physical actions such as walking, 

bending, and reaching. A little over 13 percent reported problems with vision or hearing, 

and about 3 percent reported emotional or cognitive difficulties. 

Exhibit 1-1: 

Noninstitutionalized U.S. Population by Disability Status 

70%: no reported 

problems

30%: Reported 

difficulty with 

"basic" movement 

or cognitive, 

sensory or 

emotional 

problems

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

Chart description: This pie chart illustrates that 30 percent of the U.S. noninstitutionalized 

population reports difficulty with “basic” movement or cognitive, sensory, or emotional 

problems. 

About 14 percent of noninstitutionalized people experience “complex activity limitations” 

in their ability to participate fully in social roles, including maintaining a household, 

working, pursuing hobbies, visiting friends, and going to the movies or sporting events. 

In some cases, these activity measures can overlap and describe the same person.20

2. Health and Disability 

About half of people with complex limitations and one-third of people with basic actions 

difficulties assessed their health status as fair or poor, compared with the three-fourths 

34 
of adults who did not have a disability who assessed their health as excellent or very 

good. Health status declines with age for people with and without disabilities. Across 

people in all age categories (18–64 years), however, the percentage reporting fair or 

poor health was greater among those with complex activity limitations than among those 

with basic actions difficulties. Fair or poor health status was more likely to be reported 

by people with cognitive problems or self-care limitations.21 

3. Health Behaviors and Risk Factors 

Adults with disabilities are more likely to be overweight or obese than adults without 

disabilities. According to the NCHS report, almost one-third of people with complex 

activity limitations and 30 percent of people with basic actions difficulties were obese, 

compared with 19 percent of adults who did not have disabilities. (See exhibit 1-2.)22 

Chart description: This bar graph illustrates obesity rates by disability status. Almost onethird of people with complex activity limitations and 30 percent of people with basic actions 

difficulties were obese, compared with 19 percent of adults who did not have disabilities. 

Exhibit 1-2: 

Obesity Rates Among People with Complex Activity Limitations, 

Basic Actions Difficulties, and No Disabilities 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With 

Complex 

Activity 

Limitations

With Basic 

Actions 

Difficulty

With No Disabilities

Not Obese

Obese

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

35 
About 40 percent of adults aged 18 to 44 with either basic actions difficulty or complex 

activity limitations reported that they currently smoke, compared with 22 percent of 

adults in the same group who do not have disabilities. (See exhibit 1-3.) Although 

smoking declines with age, among adults aged 65 or older in basic and complex activity 

groups, about 9 percent still smoked.23 The NCHS study also found that about 

40 percent of adults with complex activity limitations and 25 percent of people with basic 

actions difficulties identified themselves as drinkers. While these percentages suggest 

significant alcohol use among people with disabilities, they compare with 65 percent of 

people who do not have disabilities and report that they are drinkers. (See exhibit 1-4.) 

Further, patterns of heavy drinking (five or more drinks per day on 21 or more days in 

Chart description: This bar graph illustrates smoking rates by disability status. About 40 

percent of adults aged 18 to 44 with either basic actions difficulty or complex activity 

limitations reported that they currently smoke, compared with 22 percent of adults in the 

same group who do not have disabilities. 

Exhibit 1-3: 

Smoking Rates Among People with Basic Actions Difficulties, 

Complex Activity Limitations, and No Disabilities, Ages 18–44 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Basic Actions Difficulties or

Complex Limitations

With No Disabilities

Do Not Smoke

Smoke

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

36 
Exhibit 1-4: 

Drinking Rates Among People with Complex Activity Limitations, 

Basic Actions Difficulties, and No Disabilities 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic Actions

Difficulties

With No Disabilities

Do Not Drink

Drink

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

Chart description: This bar graph illustrates drinking rates by disability status. About 40 

percent of adults with complex activity limitations and 25 percent of people with basic 

actions difficulties identified themselves as drinkers, compared with 65 percent of people 

who do not have disabilities and report that they are drinkers. 

the past year) were similar for people with basic actions difficulty and complex activity 

limitations and those who did not have disabilities. Men were more than twice as likely 

as women to be heavy drinkers in all three groups.24

The benefits of physical activity in reducing risks for various conditions—including 

cardiovascular disease, osteoporosis, and diabetes—are well documented. However, 

adults with all types of activity limitations were less likely to participate in leisure time 

physical activity than adults without disabilities. Only about 15 percent of people with 

complex activity limitations reported that they engaged in regular physical activity, while 

21 percent of adults with basic actions difficulties engaged in such activity, compared 

with 35 percent of adults who do not have disabilities. (See exhibit 1-5.) Various barriers 

37 
Exhibit 1-5: 

Physical Activity Among People with Complex Activity 

Limitations, Basic Actions Difficulties, and No Disabilities 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic

Actions

Difficulties

With No

Disabilities

No Regular Physical

Activity

Regular Physical Activity

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

Chart description: This bar graph illustrates physical activity by disability status. Only about 

15 percent of people with complex activity limitations reported that they engaged in regular 

physical activity, while 21 percent of adults with basic actions difficulties engage in such 

activity, compared with 35 percent of adults who do not have disabilities. 

may prevent people with disabilities from engaging in physical activity, barriers including 

lack of access to fitness facilities, inaccessible exercise equipment, lack of access to 

adapted sports programs, or physical inability to exercise.25

4. Access to Health Care 

Insurance coverage tends to determine whether people with disabilities visit a doctor 

regularly or have access to a usual source of medical care. Adults with disabilities were 

less likely than those without disabilities to have private health insurance coverage. 

According to the NCHS study, less than half of people with complex activity limitations 

and about 61 percent of people with basic actions difficulties had private coverage, 

38 
compared with about 75 percent of people who did not report having a disability when 

the study was conducted. (See exhibit 1-6.) Although public insurance programs—

including Medicaid and Medicare—cover many people with disabilities, they do not 

provide coverage for everyone who does not have private insurance. (See exhibit 1-7.) 

During the period 2001–2005, about 19 percent of adults with a basic actions difficulty 

and 17 percent of those with a complex activity limitation reported being uninsured. 

These figures compare with about 19 percent of adults who do not have a disability who 

were without insurance. Twenty-eight percent of people with emotional disabilities 

reported being uninsured, the highest rate among people with disabilities, followed by 

20 percent of people who are blind or have vision impairments or who are deaf or hard 

of hearing. Eleven percent of those with self-care limitations reported that they did not 

have insurance, the lowest uninsured rate of any group.26 

Chart description: This bar graph illustrates private insurance status by disability status. Less 

than half of people with complex activity limitations and about 61 percent of people with 

basic actions difficulties had private coverage, compared with about 75 percent of people 

who did not report having a disability when the study was conducted. 

Exhibit 1-6: 

Private Insurance Coverage for People with Complex Activity Limitations, 

Basic Actions Difficulties, and No Disabilities 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic

Actions

Difficulties

With No

Disabilities

No Private Coverage

Private Coverage

Source: Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

39 
Chart description: This area chart illustrates uninsured rates by disability status. Nineteen 

percent of adults with a basic actions difficulties, 17 percent of those with a complex activity 

limitations, 19 percent of adults who do not have a disability, 28 percent of people with 

emotional disabilities, 20 percent of people who are blind or have vision impairments or who 

are deaf or hard of hearing, and 11 percent of those with self-care limitations reported that 

they did not have insurance. 

Exhibit 1-7: 

Percentage of Uninsured Adults, by Disability Status 

Percent Uninsured

19 17

28

20

11

19

0

5

10

15

20

25

30

With No 

Disability

With Basic 

Actions 

Difficulty 

With Complex

Activity 

Limitations

With Emotional

Disabilities

Who Are Blind

or Have Visual

Impairments, or

Are Deaf or 

Have Hearing

Impairments

With Self-Care 

Limitations

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

Having access to a regular source of health care fosters control of chronic conditions and 

facilitates the acquisition of preventive services. The NCHS study reports that adults aged 

18–44 were more likely to lack a regular source of medical care than older adults, 

regardless of disability status. However, fewer people with basic actions difficulty and 

complex activity limitations reported lacking access to usual care compared with people 

with no disabilities. For people aged 18–44, 16 percent of those with a complex activity 

limitation, 20 percent of those with a basic actions difficulty, and 22 percent of those with 

no reported disability did not have a usual place of medical care. (See exhibit 1-8.)27

40 
Exhibit 1-8: 

Lack of Access to Usual Care for Adults with Complex Activity Limitations, 

Basic Actions Difficulties, and No Disabilities, Ages 18–44 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic Actions

Difficulties

With No Disabilities

Usual Place of Care

No Usual Place of Care

Source: B. Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

Chart description: This bar graph illustrates rates of lack of access to usual care by disability 

status, among people ages 18–44. Sixteen percent of those with complex activity limitations, 

20 percent of those with basic actions difficulties, and 22 percent of those with no reported 

disability did not have a usual place of medical care. 

5. Use of Certain Preventive Services 

Regular Pap tests and mammography studies are used to identify certain breast and 

cervical cancers and other conditions in women. The NCHS study found that women aged 

18 and older with disabilities were less likely to have had a Pap test within the past 3 years 

than women without disabilities. (See exhibit 1.9.) Seventy-one percent of women in this 

age group with basic actions difficulties and 65 percent of women with complex activity 

limitations had had the test, compared with about 83 percent of women without disabilities. 

41 
Chart description: This bar chart illustrates rates of women 18 and older who had the Pap 

test within the past 3 years by disability status. Seventy-one percent of women in this age 

group with basic actions difficulties and 65 percent of women with complex activity limitations 

had had the test, compared with about 83 percent of women without disabilities. 

Exhibit 1-9: 

Women Who Had the Pap Test Within the Past 3 Years, Ages 18 and Older 

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic

Actions

Difficulties

With No

Disabilities

Did Not Have Test

Had Test

Source: Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

For women aged 65 and older, 53 percent with basic actions difficulties and 46 percent 

with complex activity limitations had a Pap test in the past 3 years, compared with 

67 percent of women who did not have disabilities. (See exhibit 1-10.)28

Evidence of the effectiveness of mammography screening is greatest for women between 

the ages of 50 and 69, and annual exams are recommended for women 40 years and 

older. The NCHS study reports that mammography rates were higher for women who did 

not have disabilities than for women with both basic actions difficulties and complex 

activity limitations. (See exhibit 1-11.) Seventy-four percent of women who did not have 

disabilities had mammography exams, compared with 67 percent of women with basic 

actions difficulties and 61 percent of women with complex activity limitations. Women with 

42 
Exhibit 1-10: 

Women Who Had the Pap Test Within the Past 3 Years, Ages 65 and Older

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic

Actions

Difficulties

With No

Disabilities

Did Not Have Test

Had Test

Source: Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

Chart description: This bar chart illustrates rates of women 65 and older who had the Pap 

test within the past 3 years by disability status. Fifty-three percent with basic actions 

difficulties and 46 percent with complex activity limitations had a Pap test in the past 3 years, 

compared with 67 percent of women who did not have disabilities. 

limitations in their ability to perform certain instrumental and other activities of daily living 

had mammography exams at the lowest rate (51 percent), followed closely by only 

52 percent of women with cognitive disabilities who received the test.29 

B. Gaps in and Barriers to Health Care for People with Disabilities 

1. Health Care Insurance 

Health care insurance availability, affordability, and coverage for important benefits—

including medications, long-term care, durable medical equipment, mental health, 

rehabilitative and specialty care, and care coordination—are key issues for people with 

disabilities. Yet national surveys have reported that people with disabilities commonly 

43 
Chart description: This bar chart illustrates mammography rates by disability status. 

Seventy-four percent of women who did not have disabilities, 67 percent of women with 

basic actions difficulties, 61 percent of women with complex activity limitations, 52 percent of 

women with cognitive disabilities, and 51 percent of women with limitations in their ability to 

perform certain instrumental and other activities of daily living had mammography exams. 

Exhibit 1-11: 

Mammography Rates According to Disability Status

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

With Complex

Limitations

With Basic

Actions

Difficulties

With No

Disabilities

With

Limitations on

Certain

Instrumental

and Other

Activities of

Daily Life

With Cognitive

Disabilities

No Mammography

Had Mammography

Source: Altman & A. Bernstein, “Disability and Health in the United States, 2001–2005” 

(Hyattsville, MD: National Center for Health Statistics, 2008). 

experience difficulty navigating the insurance system, finding and obtaining approval to 

visit specialists, and obtaining durable medical equipment. Estimates suggest that these 

factors obstruct or delay care for as many as 30–50 percent of adults with disabilities.30

One national survey found that health insurance is inadequate for more than one in 

three people with disabilities who reported delaying care, skipping medication, or going 

without needed equipment because of cost. People who do not have health insurance 

face the greatest challenges.31

Publicly financed health insurance provides an important safety net for many people 

with disabilities. Medicaid provides health and long-term care coverage for 8 million low44 
income individuals with disabilities and chronic illnesses,32 and Medicare covers about 

7 million people with disabilities who are under age 65.33 Both Medicare & Medicaid 

beneficiaries, however, have reported difficulties obtaining the care and services they 

require. With higher copayments, Medicare beneficiaries with disabilities report 

significant cost-related problems, including forgoing needed equipment, postponing 

care, and paying for long-term care. Further, Medicare imposes a 2-year waiting period 

for coverage for individuals who are under age 65 who become eligible for the program 

when they receive Social Security Disability Insurance (SSDI). While cost-sharing is 

lower under Medicaid, people with disabilities who are covered by the program report, 

among various problems, difficulties finding physicians who will accept Medicaid 

payments, which compromises access to care for those with low incomes. Seventyeight percent of Medicaid beneficiaries with disabilities qualify for Medicaid because 

they meet the income and asset limitations required for receipt of Supplemental Security 

Income (SSI).34 For many of these low-income beneficiaries, however, essential health 

care services—including dental and vision care, medical supplies, and durable medical 

equipment—may be out of reach financially, even with low cost-sharing under Medicaid. 

Further, although many people with disabilities have some type of health insurance, a 

significant number of individuals with chronic health conditions remain uninsured. 

According to the NHIS, nearly half of all uninsured, nonelderly adults report having a 

chronic condition, and almost half of those forgo medical care or prescription drugs 

because of the cost. Nonelderly adults who lack health insurance include people with 

hypertension (14 percent uninsured), high cholesterol (11 percent uninsured), heart 

disease (13 percent uninsured), asthma (18 percent uninsured), diabetes (15 percent 

uninsured), and arthritis-related conditions (12 percent uninsured).35 

Private group plan health insurance is usually offered through employers and some 

trade unions. However, many working-age individuals with disabilities do not qualify for 

such coverage, because they are not employed; work part time (only 31 percent of 

workers with part-time jobs qualify for employer group plans, compared with 82 percent 

of full-time workers);36 or their employers do not offer health insurance. Employer45 
sponsored health insurance is also becoming less available as health premiums 

increase at rates consistently greater than inflation. The average annual group premium 

for a family of four in 2007 was $12,106, nearly double what it was in 2000.37 

For those who have employer-sponsored group health insurance, plans often do not 

provide adequate benefits for people with disabilities, because they are crafted to cover 

basic care required by average working populations with fewer health care needs.38 For 

example, private insurance plans increasingly limit annual payments for durable medical 

equipment such as wheelchairs, crutches, braces, and ventilators, regardless of medical 

necessity and at a level that makes the individual’s out-of-pocket costs for higher priced 

items such as motorized wheelchairs prohibitively expensive.39 Many private insurance 

plans also limit mental health services and prescription drugs, which are generally 

restricted to medications on approved lists, or formularies.40 Private insurance plans 

also do not reimburse providers for sign language interpreters or cover the cost of vision 

rehabilitation for people who are blind or who have vision impairments. For families who 

have a child with intellectual and developmental disabilities and complex medical 

problems, private insurance does not provide for adequate reimbursement to health 

care providers for key services such as specialty care and care coordination.41 

Purchasing individual private insurance is rarely an option for people with disabilities, 

because it is unaffordable or because they are denied coverage outright on the basis of 

disability. While group plans may not exclude an individual with a disability from 

coverage, no such prohibition exists for individual private insurance. For example, a 

General Accounting Office (GAO) study found that individuals with HIV, heart disease, 

or leukemia are “virtually always” denied individual private health insurance. People with 

other disabilities have also been denied full coverage, including those with orthopedic 

impairments, mental health disabilities, diabetes, asthma, arthritis, nervous system 

disorders, cancer, mobility disabilities, and vision impairments.42 

In addition to paying more for an individual plan than a group plan, purchasers are often 

charged premiums that are higher than those charged to individuals without 

disabilities.43 One study examined the availability of individual health insurance 

46 
coverage for hypothetical individuals with minor and major health problems. The study 

found that these hypothetical individuals were unable to obtain coverage at the standard 

rate 90 percent of the time, and benefit restrictions and premium surcharges were 

imposed on the applications that were accepted.44 

2. Third-party Coverage of Health Programs and Services Most Needed by 

Americans with Disabilities 

The structure for payment of health care services in the United States is based on thirdparty payers, either through private insurance or through the public insurance programs 

including Medicare, Medicaid, SCHIP, and Title V. Health care services are sufficiently 

costly that it is not feasible to assume that those without a third-party payer can afford to 

pay out of pocket. For the 45.7 million Americans without health insurance, this means 

mostly going without care until health problems are urgent.45 In these circumstances, 

providers may never be adequately compensated for the care they provide, and 

individuals may find themselves struggling with large health-care-related debt.46 For 

people with disabilities, as for most Americans, assessments about the impact of the 

third-party payment structure on long-term costs and benefits are wrapped up in the 

larger national policy debate about how best to finance health care so that it meets the 

two objectives of enabling everyone to access appropriate quality care and controlling 

the rapid rise of health care expenditures. 

As the discussion in the preceding section on health insurance gaps indicates, people 

with disabilities rely greatly on health insurance. Those who do not have insurance or 

are inadequately insured often delay care or go without care. Both circumstances can 

produce high costs in the long run, to the health care system and to individual patients. 

While not intrinsic to the concept of third-party payment, the current structure permits 

the denial of coverage based on health status or prior health events. It also has led to 

the development of a reimbursement system geared to the expenses of acute medical 

care. This leaves people with chronic conditions and the costs of chronic care with less 

coverage. The costs of durable medical equipment and other assistive devices, which 

47 
often are not considered “medical,” sometimes fall outside the insurance coverage 

umbrella. 

For people with disabilities to derive benefits from health insurance coverage that are 

similar to those for people without disabilities, third-party coverage needs to include 

some specific services and supports, such as care coordination, access to specialty 

providers, rehabilitative services, prescription drugs, durable medical equipment and 

assistive technologies. Third-party reimbursement also should account for the need for 

longer appointments, assistance with communication (e.g., sign language interpreters), 

and other modifications in the processes used to deliver care to ensure equitable quality 

in the health care received by people with disabilities. 

Currently, there is no body of research demonstrating with any certainty the long-term 

costs and benefits of third-party health care coverage that incorporates the services that 

may be most needed by people with disabilities. The best that can be offered is a 

hypothesis for future research: Better third-party coverage of people with disabilities and 

the services they need will result in longer, healthier lives; improved overall health 

status; greater productivity and community participation; and less high-cost care for 

conditions for which earlier intervention is effective. 

3. Lack of Health Care Provider Training and Awareness 

Among barriers that affect the quality of care that people with disabilities receive, lack of 

disability competency and awareness among health care providers ranks high with 

focus group participants and in other participatory research.47 Physicians and other care 

providers themselves report inadequate training and awareness. In a survey of 

Connecticut physicians, 91 percent of primary care physicians revealed that they had 

received no training in intellectual and developmental disabilities, and 71 percent 

thought they would benefit from such training. Most respondents thought that providing 

care for people with intellectual and developmental disabilities was likely to be more 

difficult than caring for other patients.48 

48 
Lack of disability and knowledge is a leading barrier to care, according to women with 

disabilities and those with diverse disabilities, including people who are deaf or hard of 

hearing, people who are blind or have vision impairments, and people with intellectual 

and developmental disabilities. Without appropriate training and awareness, health care 

providers hold incorrect assumptions and stereotypes about people with disabilities, 

which can affect every aspect of care and can result in inadequate and inappropriate 

care. Research has revealed, for example, that some providers incorrectly assume that 

people with disabilities do not have a good quality of life; that people with developmental 

disabilities do not feel pain and, therefore, do not require anesthesia; that people who 

are deaf have cognitive deficits because they may not be fluent in standard English; and 

that women with disabilities do not require reproductive counseling and care because 

they may be incorrectly perceived as sexually inactive. Beyond undermining quality of 

care, such humiliating and frustrating encounters with health care providers can 

damage patient-provider trust and deter people with disabilities from seeking care. 

4. Structural and Communication Barriers 

People with disabilities encounter other structural barriers to health care, including 

inadequate transportation, lack of architectural accessibility in the facilities and offices of 

health care providers, and lack of accessible exam and diagnostic equipment. 

Communication barriers are also frequently cited as problems that prevent access to 

care or reduce the quality of care that people with disabilities receive. 

For many people with mobility disabilities, access to examination and diagnostic 

equipment such as mammogram machines can be difficult or impossible if the 

equipment is not height-adjustable. Medical office staff members often are not trained to 

provide lifting assistance and are unwilling to lift patients onto inaccessible examination 

tables. Some patients do not wish to be lifted, out of fear that they will be dropped or 

injured. Health care providers, therefore, frequently conduct examinations or diagnostic 

tests while patients are seated in their wheelchairs, which can generate inaccurate test 

results or conceal physical evidence required for appropriate diagnosis and treatment. 

This fact was made evident by one of the plaintiffs who participated in a landmark 

49 
lawsuit, brought in 2000 against the largest nonprofit health maintenance organization in 

the country. This plaintiff was usually “examined” in his wheelchair during his check-ups 

rather than given needed lift or transfer assistance. He developed a pressure sore that 

remained undetected, became infected, and eventually required surgery.49 Recent 

research reports that about 5,596,000 Americans live with paralysis from causes such 

as strokes, spinal cord injury, and multiple sclerosis; this is about 40 percent more than 

previously estimated, thereby adding to the urgency of the need to address structural 

barriers to care.50

For many people with disabilities, poor communication with providers and limited time 

for office visits reduces the quality of care they receive and may impede diagnosis of 

new health conditions and prolong or leave untreated chronic health problems. 

Communications difficulties have long been reported by people who are deaf or hard of 

hearing. Standard English is not the primary language for many people who become 

deaf prelingually. People who become deaf prelingually constitute a distinct cultural and 

linguistic minority, and they do not always communicate effectively in English. Their 

primary language is likely to be American Sign Language (ASL); yet interpreters 

frequently are not provided during medical visits. As a consequence, people who are 

deaf often have significant difficulty communicating effectively with their health care 

providers and receiving health care information and instructions. Lack of interpreters 

impedes effective communication, which serves as a disincentive to seeking care. 

People who are hard of hearing often have difficulty communicating effectively with 

health care professionals, who may be unaware of appropriate techniques for 

communication and who rarely provide accommodations, such as conducting an 

examination in a room with limited ambient noise, offering assistive listening devices, or 

scheduling additional time to ensure that the patient has understood the information 

being provided. Other people with disabilities, including people who are blind, report that 

medical providers sometimes do not speak to them directly and do not make 

prescription information, return appointment, and other health care instructions available 

in formats that are accessible. Diabetes care training can be difficult to obtain for people 

who are blind or have vision disabilities, because some diabetes care professionals are 

50 
not aware of blood glucose testing equipment that provides an audio output of readings. 

People with developmental disabilities also report difficulty communicating with some 

health care providers, because too little time is available during standard office visits for 

discussion of complex health issues or the appropriate, understandable presentation of 

information so that people with developmental disabilities can participate in their health 

care decisions and become informed about wellness and prevention activities. 

C. Health Status and Unique Barriers to Care for Women with 

Disabilities, People Who Are Deaf or Hard of Hearing, People Who 

Are Blind or Have Vision Impairments, and People with Intellectual 

and Developmental Disabilities 

Research has shown that certain groups within the disability population sometimes 

experience specific health disparities and, in some cases, unique and ongoing problems 

accessing health care. Among many such groups, the following discussion examines 

specific health and health care problems and issues for four groups: women with 

disabilities, people who are deaf or hard of hearing, people who are blind or have vision 

impairments, and people with intellectual and developmental disabilities. Elucidating 

health disparities and barriers to health care for these groups brings into focus the 

scope and magnitude of difficulties and problems faced by the broader disability 

community into focus. Moreover, solutions that benefit members of these groups will 

also have a crosscutting impact on those with multiple impairments and those who 

belong to specific demographic populations, thereby improving access to care for 

everyone. 

1. Women with Disabilities 

Women experience different challenges to health and wellness than men do. Among 

women living in the United States, as many as one in five experiences some level of 

disability, a number that is growing as the population ages. However, there is limited 

research about the health status, barriers to health care, and level of participation in 

health and wellness programs of this large and important group.51 

51 
Many of the known health disparities women with disabilities experience are rooted in 

longstanding structural, financial, and personal barriers to health care access. These 

include limited access to culturally competent care from primary and specialty providers; 

negative provider attitudes; lack of insurance, including medical, dental, prescription, 

and vision insurance; and restrictive coverage under available health plans. Additional 

barriers include poor access to services and programs dedicated to wellness and 

prevention; inaccessibility of health facilities, services, and diagnostic and examination 

equipment; ineffective communication between provider and patient; and inadequate 

transportation. 

Public health research on health disparities experienced by women with disabilities 

receives only a fraction of overall disparity research funding, which focuses primarily on 

racial and ethnic minority populations. While these populations also include women with 

disabilities, and women who are members of racial and ethnic minorities face additional 

health disparities and risks,52 research and program development funds that would aid 

in understanding and responding to the unique needs of women with disabilities are 

limited. Federal health, wellness and prevention, and literacy programs have not yet 

fully recognized, acknowledged, or responded to the unique health and health care 

issues of women with disabilities. 

a. Disability Prevalence Among Women 

In 2005, according to the U.S. Census Bureau, 20.1 percent of girls and women in the 

noninstitutionalized civilian population reported disability, compared with 17.3 percent of 

males. Further, severe disability was more prevalent among girls and women 

(13.4 percent) than among males (10.6 percent).53 The number of women living in 

nursing homes is 1 million—5.3 percent of the population of women over age 65. This 

statistic does not include girls under age five, women in the military, or women in any 

type of congregate living situation besides nursing homes, such as dormitories or group 

homes. It is not clear whether this statistic also excludes women living in nursing homes 

who are under age 65.54

52 
Disability affects women more significantly as they age. Among women aged 16 to 64, a 

little over 17 percent have one or more disabilities, compared with 43 percent of women 

who are 65 or older.55 The incidence of severe disability is higher among African 

American women (15.4 percent) than among Hispanic women (10.0 percent) and white 

non-Hispanic women (13.8 percent).56

b. Health Status and Health Experiences 

Recent research reveals that women with disabilities experience poorer health than 

women who do not have disabilities, despite the fact that both groups report the same 

types of health problems. Nearly a third of women with extensive functional limitations 

rate their overall health as poor compared with less than 1 percent of women with no 

limitations.57 

One study of Medicaid beneficiaries concluded that women with disabilities were about 

50 percent less likely than women who did not have disabilities to be satisfied with their 

medical care. These women were 24 percent less likely to have received a Pap test 

during the previous year than women without disabilities and were nearly three times 

more likely than women without disabilities to have postponed needed medical care. 

Outcomes for this group were substantially worse in terms of receiving necessary 

medical care and being able to obtain prescription drugs. Women with disabilities who 

received Medicaid were more than twice as likely to have postponed taking medication 

they needed during the previous 12 months.58 

As they age, women with disabilities tend to have poorer health than women who do not 

have disabilities. They are more likely to be overweight, smoke, have high blood 

pressure, and experience mental health problems. Women with more significant 

disabilities are more likely to live alone, be unemployed, have less education, be 

divorced, and live in poverty.59 

According to the 2008 NCHS study, about 30 percent of women with basic actions 

difficulties were overweight, and 31 percent were obese. Among those with complex 

53 
activity limitations, almost 30 percent reported being overweight, and over 34 percent 

were obese. Slightly over 23 percent of women with complex activity limitations smoke, 

compared with 22.5 percent of women with basic actions difficulties.60 

c. Barriers to Health Care 

Physical, attitudinal, and policy barriers; lack of information about how disability affects 

health; limited finances; and inadequate personal assistance limit access to health care 

services for women with disabilities. Many women with disabilities also face multiple 

barriers to health care because of racial or ethnic minority membership, sexual 

orientation, type of disability, or geographic location.61 

Women report that financial and cost concerns and inadequate health insurance are the 

primary reasons they cannot obtain needed services.62 Women with disabilities who 

had three or more functional limitations were more likely to report being unable to 

general medical and dental care, prescriptions, or eyeglasses, regardless of age group, 

compared with women who do not have disabilities. Women with disabilities also report 

problems with access to prevention services.

get 

63

• Health Care Coverage 

For most noninstitutionalized people in the United States, health insurance coverage 

determines the extent to which they have access to every aspect of health care. This 

includes access to inpatient care, prescription drugs, diagnostic procedures, durable 

medical equipment, and prevention and health promotion services and programs. Most 

women over age 65 are covered by Medicare. Among women under age 65, women 

with disabilities are much less likely to have private health insurance than women who 

do not have disabilities. 

Most private insurance is available through employers. Women with disabilities have 

higher rates of unemployment, underemployment, and poverty, and therefore are less 

likely to have access to private health insurance. They are also less likely to be married 

than women who do not have disabilities, and therefore are less likely to be covered by 

54 
a spouse’s policy. Among women who do not have disabilities, slightly over 75 percent 

have private insurance, compared with almost 62 percent of women with basic actions 

difficulties and only about 49 percent of women with complex activity limitations.64

Women with disabilities are more likely than women without disabilities to be covered by 

publicly financed health care programs, primarily Medicare and also Medicaid, which 

provides health coverage for low-income people with disabilities under age 65. Medicaid 

generally provides a higher level of certain services, assistive technologies, long-term 

care, and prescription drugs than either most private health plans or Medicare.65 Nearly 

28 percent of women with complex activity limitations are covered by the Medicaid 

program, while 16 percent of women with less significant disabilities are Medicaid 

beneficiaries. Depending on the level of disability, 15 and18 percent of women with 

disabilities who are age 18 to 64 have no health care coverage at all.66

Even when a woman with disabilities has health insurance, her plan may not adequately 

cover required prescriptions, physical or occupational therapy, durable and expendable 

medical equipment and supplies, assistive devices, or personal assistance services.67

Limited coverage or lack of coverage means that both women and men with disabilities 

must often pay higher out-of-pocket expenses than people who do not have disabilities. 

These out-of-pocket expenses include deductibles and copayments for needed 

services, prescriptions, and equipment. The more significant a person’s disability, the 

higher the probability that out-of-pocket expenses will be greater.68

• Reproductive Care 

Women with disabilities require health services related to sexuality, reproductive care, 

and childbearing, just as women without disabilities do. However, social misperceptions 

and stereotypes about disability can make it difficult for women with disabilities to obtain 

information, medical care, and services to ensure that their reproductive needs are met. 

Such needs include routine gynecological and breast examinations; screening for 

sexually transmitted diseases (STDs); contraception; consultations about sexuality and 

sexual function; fertility consultation and support; obstetrical care during pregnancy, 

55 
labor, and delivery; and information about healthy parenting and about issues related to 

menopause, including osteoporosis, loss of libido, and insomnia. 

Structural barriers to receiving adequate and informed reproductive care include limited 

professional training and competency of primary care and reproductive care specialists; 

inadequate or no health insurance coverage for visits to specialists; poor physical 

access to usable and adapted or specialized examination and diagnostic equipment; 

and negative or discriminatory provider attitudes.69 

According to one qualitative study, health care providers sometimes expressed surprise 

that women with disabilities would be sexually active. As a result, they frequently did not 

discuss the use of contraceptives or evaluate the women for STDs. Some women with 

disabilities reported that they avoid regular visits to the gynecologist because services 

are so difficult to obtain.70 In a telling example, one study reported that a gynecologist 

caring for a woman who uses a wheelchair assumed she was not sexually active and, 

therefore, saw no need to test for STDs.71 In another example that arose during focus 

group research, a deaf woman spoke about her doctor’s negative attitude toward people 

who are deaf. 

The doctor had a mask on so I could not read his lips, but we had this 

interpreter with us, and [she interpreted when] the doctor said, “Well, the Deaf 

woman should tie her tubes so she doesn’t get pregnant again.”72

Among women who received Medicaid, women with disabilities were also more likely to 

have had emergency room visits, hospital admissions during pregnancy, cesarean 

deliveries, and readmissions within three months of delivery.73

d. Disease Prevention and Health Promotion 

Few studies have been conducted that document the use of primary health care and 

disease prevention services by women with disabilities. The existence of a primary 

disability can increase the possibility that a woman with a disability will acquire 

secondary conditions. One national study comparing health care and preventive care 

56 
among women with and without disabilities concluded that women with disabilities 

experience worse health care and worse preventive care than women without 

disabilities.74 Wellness promotion and health screening tests are essential to avert 

secondary conditions that can reduce functional capacity, diminish quality of life, and 

potentially lead to early death. Yet women with disabilities face numerous hurdles to 

participation in health screening programs. Measures that support wellness, including 

exercise, can be difficult or impossible for women with certain disabilities, because most 

exercise equipment is inaccessible and exercise facilities rarely accommodate people 

with disabilities.75 For women with disabilities, factors such as having both health 

insurance and a regular source of health care predicted whether or not they received all 

types of clinical preventive services.76

• Breast and Cervical Cancer Screening and Treatment 

Women with disabilities frequently face barriers to health care access that may delay 

detection and increase poor outcomes from breast cancer. One study that focused on 

breast cancer screening also noted that financial, architectural, environmental, and 

attitudinal barriers particularly affected the health care services received by women with 

physical disabilities. In this study, women with disabilities reported that their health care 

providers held them in lower regard and were more likely to disregard or overlook 

symptoms when treating women without disabilities.77 Outcomes from focus groups 

conducted in Massachusetts include the following anecdote: 

In one particularly troubling instance, a provider’s value judgment about a 

patient with mental retardation led to a year-long delay in treatment for a lifethreatening medical condition. The patient suffered from advanced breast 

cancer that required surgery, but her physician implied that due to her already 

low quality of life (owing to her disability), she did not merit the intervention, 

and her guardian did not want to make the decision to go forward without the 

physician’s support. This woman reportedly died within a year, and there was 

concern that her death may have been precipitated by the delay in surgery.78

In a large breast cancer study of more than 100,000 women, those who received Social 

Security Disability Insurance (SSDI) and who had Medicare coverage had lower rates of 

breast-conserving surgery than other women (43.2 percent versus 49.2 percent). 

57 
Women with SSDI and Medicare who had breast-conserving surgery were also less 

likely than other women to receive radiotherapy and axillary lymph node dissection. 

These women had lower survival rates from all causes and specifically from breast 

cancer.79 Explanations for such disparities could include lack of early diagnosis, lack of 

breast health awareness or education on the part of the woman herself, inaccessible or 

unreliable transportation, and cultural capacity of the treating facility. Inaccessible 

equipment and other physical barriers could also add to the problem.80

Another recent study compared breast cancer treatment for women with disabilities who 

had Medicare insurance through health maintenance organizations, fee-for-service 

health care programs, or a combination of both. This study concluded that women with 

continuous HMO insurance had earlier stage breast cancer diagnosis and were more 

likely to receive radiation therapy following breast-conserving surgery. Women with 

continuous HMO insurance had a higher rate of breast cancer survival, primarily 

resulting from earlier stage diagnosis.81

The following example from a national summit on health care for women with disabilities 

illustrates disparities in breast health care and early breast cancer diagnosis. 

A 42-year-old woman with paraplegia notices a lump in her right breast. Her 

medical provider tells her it is a bulging pectoral muscle from pushing her 

wheelchair. Later diagnosed with Stage III breast cancer, she dies within three 

years.82

In focus groups with deaf women, some participants in the study expressed limited 

awareness of the importance of mammography and breast self-examination. During the 

focus groups, facilitators became aware of several women who clearly required breast 

care. The following comments from participants underscore their need for access to 

information about health screening as well as education about the importance of regular 

examinations: 

Participant 1: I’ve never had a mammogram, not in 15 years, and I don’t need 

one. I feel fine. I don’t feel sick at all. 

58 
Participant 2: I don’t want to have a mammogram—I’m scared of the 

radiation! Radiation will destroy my breast. 

Participant 3 (over 65 years of age): I went every year for a checkup with my 

family doctor; he never advised me to get a mammogram.83

Several studies report that women with disabilities who had significant functional 

limitations were much less likely to receive Pap tests and mammograms, even when 

they had health insurance, than women with disabilities who had fewer limitations.84

Similarly, in a study intended to compare prevention procedure rates of Medicare 

beneficiaries with disabilities, women with the most significant disabilities reported fewer 

Pap tests and mammograms compared with those without disabilities. Women with 

significant disabilities were 57 percent less likely to report receiving Pap tests and 

56 percent less likely to report receiving mammograms compared with women who did 

not have disabilities, regardless of age.85 The 2008 NCHS study reports that 

64.6 percent of women with complex activity limitations and 70.8 percent of women with 

basic actions difficulty had received a Pap test within the past 3 years, compared with 

82.5 percent of women who did not have disabilities.86

The following illustrates the indifference of one physician when faced with patients who 

may be difficult to examine or treat. 

A nurse for a woman with mental retardation who had difficulty undergoing 

gynecological exams reported that the woman’s doctor downplayed the 

importance of such exams for the woman, ostensibly because she was not 

sexually active.87

• Cardiovascular Disease Prevention 

Although it is a major cause of death in the United States, cardiovascular disease (CVD) 

has received little attention in women with disabilities. Recent research suggests that 

women with disabilities had less awareness of CVD risk factors and have participated in 

less preventive screening for CVD than women without disabilities. Even when women 

seek care for potential cardiovascular problems, inadequate diagnostic techniques can 

result in dire outcomes. This problem was illustrated in a 2007 article published by the 

59 
Journal of the American Medical Association (JAMA) that highlighted an example of 

how women with disabilities do not always receive a standard of care afforded women 

who do not have disabilities. 

Susan, who uses a wheelchair, had trouble breathing. She needed an 

echocardiogram, which was performed while she sat in her wheelchair [rather 

than lying in the supine position]. The echocardiogram was of poor technical 

quality and yielded little information.88

Research suggests that measurement of weight, electrocardiograms, and inquiries 

about smoking habits occurred less frequently for women with disabilities than for 

women of similar age without disabilities. Women with disabilities who are physically 

inactive and postmenopausal were likely to be at higher risk for CVD. The risk of CVD, 

therefore, appears to be under-recognized and under-assessed, particularly in women 

with physical disabilities.89 

e. Conclusion 

The structural and environmental problems and barriers to health and health care 

services and programs experienced by women with disabilities call for additional 

research funding and a heightened public health emphasis on women with disabilities in 

all programs concerned with women’s health. Future public health research, policy, and 

health program initiatives should fully foster and integrate issues and concerns of 

women with disabilities. Such initiatives include those in professional medical training 

institutions, in continuing education of medical professionals, and in Federal intramural 

and extramural research focused on health and wellness.90 Future health disparities 

research must specifically investigate secondary health disparities, such as obesity, and 

the outcome of programs aimed at reducing these disparities, including disease 

prevention and health promotion activities for women with disabilities. 

60 
2. People Who Are Deaf or Hard of Hearing 

People who are deaf or hard of hearing experience extensive, largely unrecognized 

communication problems when they seek health care services. One researcher 

eloquently summarized these difficulties. 

Deaf or hard of hearing individuals in the U.S. must often cope with 

extraordinary communication barriers when working with their health care 

providers; receive health care services that are inadequate, inappropriate for 

their needs, and unethical due to the interplay of numerous complex individual, 

interpersonal, and systematic factors; and have a poorer self-reported health 

status than the general population. Within the subset of the U.S. population 

that uses English as a second language, Deaf individuals may be at greatest 

risk for poor physician-patient communication.91 

a. Prevalence of Deafness and Hearing Loss 

Definitions of hearing impairment vary widely, as do estimates of the number of people 

in the United States who are deaf or hard of hearing. According to a 2008 report 

published by the National Center for Health Statistics (NCHS), 37,000,000 adults 

experience some degree of hearing loss, ranging from a little trouble hearing to 

deafness. About 3.3 percent of adults in the United States who are over age 18 

experience deafness or have a lot of trouble hearing.92 Hearing impairment is the sixth 

most common chronic condition in the civilian population.93 Some estimates suggest 

that more than 4,800,000 people in the United States have hearing impairments severe 

enough that they cannot hear or understand speech, while other estimates indicate that 

roughly 1,800,000 people in the United States are deaf.94

As with many other disabilities, the prevalence of hearing loss increases dramatically as 

the population ages. The number of people who experience deafness or who have a lot 

of trouble hearing increases from 0.9 percent among adults under the age of 45 to 

3.1 percent among those aged 45 to 64. Among adults over 65, 11.1 percent report 

deafness or a lot of trouble hearing. Similarly, the number of people who experience 

lesser hearing loss also increases with age: 27 percent of people aged 65 and over 

report a lot of trouble hearing.95

61 
b. Health Status and Health Experiences 

According to health experts, research about the health status, health behaviors, risk 

factors, and diseases experienced by people who are deaf or hard of hearing is limited, 

because research is generally focused on hearing loss itself.96 Moreover, early studies 

may be misleading, because they excluded certain important segments of the deaf 

population. Conflicting research and a relative lack of data, therefore, make it 

particularly challenging to identify the health care needs of this heterogeneous group.97

Further, few studies have examined deaf adults’ experiences with the health care 

delivery system.98 Research has revealed, however, some important preliminary 

information about the health status of people who are deaf or hard of hearing, as well as 

some of the pressing problems this community encounters in the health care delivery 

system. 

• A Distinct Cultural and Linguistic Group 

Most researchers and most deaf individuals consider the Deaf community a distinct 

cultural and linguistic group. As a distinct group, the Deaf community is entitled to the 

same acknowledgment that society affords other groups with their own culture and 

language. The syntax and grammar of American Sign Language (ASL) is independent 

of English, and those who use it are a distinct linguistic group. People who use ASL as 

their primary language share experiences that parallel those of other cultural and 

linguistic minority groups. For example, the Deaf community shares a cultural heritage 

that includes similar family and educational experiences, and common social and 

community interests. Similarities to other minority groups include limited use of English 

in day-to-day communication; limited access to information from radio, television, and 

other forms of mass media; lack of access to information that is present in the ambient 

environment; and dependence on family members, friends, and others as interpreters. 

People who use ASL frequently identify their linguistic identity by spelling “Deaf” with an 

uppercase “D,” while “deaf” with a small “d” indicates hearing impairment as a 

physiological characteristic.99 However, not all people who are deaf identify with the 

cultural minority that uses ASL. The U.S. Census and other large population and health 

62 
surveys do not inquire about ASL use, so the size of this community is not known; 

estimates range from 100,000 to 1,000,000 people. Among adults who are deaf, about 

8 percent acquired their disability prelingually (i.e. before the age of three), and an 

estimated additional 11 percent became deaf between the ages of 3 and 19. 

• Health Disparities 

The 2008 NCHS study reports that as hearing loss increases, people experience a 

higher prevalence of fair or poor health status; problems walking, bending, and 

reaching; and psychological distress. Adults in the study who were deaf or who 

experienced significant problems hearing were three times as likely to report fair or poor 

health compared with those who did not have hearing impairments. Hypertension and 

diabetes were more prevalent among adults who were deaf or had a lot of trouble 

hearing than among those who did not; they were highest among adults under age 65. 

People who were deaf or had a lot of trouble hearing were more likely to smoke 

(40 percent of those between ages 18 and 44, compared with 24 percent of people who 

were not deaf or hard of hearing). People who were deaf or had a lot of trouble hearing 

were also more likely to be overweight and less likely to participate in leisure time 

physical activity.100 The NCHS study and other research have also shown that people 

who are deaf or have a lot of trouble hearing are more likely to drink alcohol at higher 

rates than adults with no hearing difficulties, and have more difficulty finding appropriate 

accessible treatment services and programs.101 More than 40 percent of adults who are 

deaf, or have a lot of trouble hearing, smoke cigarettes, compared with 24 percent of 

people who do not have hearing problems.102 Deaf women of color appear to 

experience the greatest health disparities and difficulty accessing appropriate health 

care. They tend to have lower incomes and poorer health, and to be less educated 

compared with white women. Among women of color, African American deaf women 

experience the greatest health disadvantages.103

• Health Care Experiences 

People who are deaf or hard of hearing have a range of experiences with health care 

professionals, and these experiences may differ according to when they acquired 

63 
hearing loss or became deaf. However, people who are deaf or hard of hearing have 

different health care experiences compared with people who do not have hearing loss. 

One study suggests that people who become deaf prelingually use health care at about 

the same rate as other minority language groups, while people who become deaf 

postlingually use health care services at about the same rate as individuals who have 

chronic illnesses.104 Medicare beneficiaries over age 65 who experience some hearing 

loss report lower satisfaction with health care access and quality of care than do other 

groups.105 

c. Barriers to Health Care 

• Lack of Effective Communication 

Communicating effectively in health care settings presents complex challenges for 

people who are deaf or hard of hearing. Research has revealed that people who are 

deaf or hard of hearing identify similar communication problems that compromise health 

care, including the following: 

. . . medication errors and misdiagnoses, problems during surgery and 

anesthesia, missed and delayed appointments, and less complete and 

accurate information than other patients receive.106

Hearing loss varies from person to person, and communication styles and needs can be 

unique to the individual. As a result, diverse, individualized strategies are necessary to 

achieve effective communication. For example, while many people who are deaf 

communicate using ASL, others who are deaf or hard of hearing use speech-reading, 

speaking, writing, or a combination of these methods.107 Some people who are hard of 

hearing also use hearing aids or other devices, including assistive listening devices that 

are necessary to communicate effectively during medical visits. For others who are hard 

of hearing, effective communication may require that their health care provider modify 

the way he or she speaks. Because most hearing loss occurs in the higher frequencies, 

the provider’s speech may be more accessible if he or she speaks in a lower voice. The 

patients may also need for the provider to be face to face and avoid turning away or 

covering his or her face. Some people may benefit if noise distractions are reduced.108 

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Some people with hearing loss, including older people, may not acknowledge their 

hearing loss and may act as though they understand what is being communicated, while 

not in fact understanding. These individuals may require additional time and attention 

during health care provider visits to ensure that information has been communicated 

clearly and effectively. Also, communications can be especially demanding physically 

and emotionally for patients who are deaf or hard of hearing, making fatigue a potential 

factor in determining effective communication.109 One study concluded that older adults 

with mild-to-moderate hearing loss may expend so much cognitive energy trying to hear 

accurately that their ability to remember spoken language suffers as a result.110 Thus, 

they may have difficulty retaining information presented during a health care visit. 

Most health care practitioners have little understanding of how people with hearing loss 

communicate or how to communicate effectively with them. This lack of awareness 

directly affects the quality of health care these practitioners can provide. 

Focus group research has revealed widespread problems that affect health outcomes 

for many people; these problems often begin with provider assumptions about hearing 

loss. Most providers mistakenly assume that people who are deaf are fluent in both ASL 

and English. However, ASL is completely independent of English and does not have a 

written form. Attempts to write ASL using standard English words produces what 

appears to be broken English. This “broken” English leads some providers to assume 

that their deaf patients lack intelligence, an assumption they may not make about other 

people who are not fluent in English. If an immigrant from China with a Ph.D. in physics 

wrote in broken English, the health care provider would probably assume that the 

immigrant’s communication difficulties stemmed from the language barrier. However, 

lack of awareness about ASL and assumptions about people who are deaf lead health 

care providers to incorrectly assume that a patient with limited English skills is 

cognitively impaired. As evidence of this, deaf patients often report that their physicians 

do not appear to respect their intelligence and think that they do not want to take 

responsibility for their health.

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People who are deaf or hard of hearing report that health care providers rarely use 

appropriate and effective methods of communication. Problems begin when an 

individual attempts to schedule an appointment with a health care provider and continue 

during office visits, diagnostic procedures, emergency room visits, hospitalizations, and 

even in hospice care. Health care providers sometimes do not understand that providing 

appropriate methods of communication is medically necessary to ensure that health 

care is effective. Rather than asking the person what method of communication would 

be most effective, physicians and other health care practitioners frequently employ 

modes of communication that do not take into account specific individual needs. For 

example, they may rely on family members to interpret for patients who are deaf. 

Patients who are deaf can find it difficult to request an interpreter, because they are 

concerned that physicians might question the need or might expect the deaf individual 

to pay for the interpreter. In addition, some people who are deaf have reported that 

health care providers have denied requests for interpreters. Others have noted that 

interpreter services are not reimbursed by insurers, which presents a serious barrier to 

hiring them.111

Many people who are deaf or significantly hard of hearing communicate using Internet 

technologies, including videophone/video relay interpreting services (VP/VRS), facsimile 

(FAX), text messaging, and instant messaging. Others use older technologies such as 

text telephones (TTYs), devices that allow the user to place a telephone call and then 

type a message to a person who also has such a device. Many people with hearing, 

speech, and language difficulties use the nationwide relay service established by the 

1990 Americans with Disabilities Act (ADA). The relay service allows a caller using an 

Internet connection or TTY to contact a relay operator, who in turn places a call to the 

desired person and then “relays” the conversation between the two parties. Most health 

care practitioners, however, either are unaware that many people who are deaf and 

significantly hard of hearing people communicate using these technologies or are 

uncomfortable using them to communicate with patients. Moreover, some health care 

providers have raised the concern that these modes of communication do not preserve 

confidentiality and might violate the Health Insurance Portability and Accountability Act 

66 
(HIPAA), even though they are the modes by which people who are deaf communicate 

most effectively.112

Most practitioners have complex menu-driven voice message systems that make it 

difficult for relay operators to type the options to the caller before the connection times 

out.113 Thus, people who are deaf or hard of hearing are sometimes unable to make 

appointments with their health care providers or communicate directly with them. 

Regarding these basic communication barriers, one focus group participant said: 

We just go right to the hospital. I wouldn’t call my doctor at all. I just go right to 

the emergency room.114

Typically, health care providers expect deaf patients to be able to read their handwriting 

or to lip-read as they speak. Deaf participants from several focus groups said they had 

significant problems with writing as a mode of communication, not only because it is 

slow and inefficient, but also because the vocabulary is unfamiliar and the handwriting 

often illegible. Because ASL is not English, medical terms are often interpreted using a 

vision description rather than a single corresponding word. This means that many deaf 

individuals never have the opportunity to learn medical terms. For example, there is no 

sign for the word “cholesterol,” so a certified interpreter would describe cholesterol as a 

type of fat build-up in the blood vessels. Another interpreter might simply finger spell the 

word “cholesterol,” but the patient might not know what the word means. Syntax 

differences between English and ASL can compound the communication problem when 

unfamiliar medical terms are used. Similarly, speech-reading is ineffective because only 

about 30 to 40 percent of spoken English can be understood using this technique.115

One focus group participant illustrated the problems with speech-reading. 

I was so shocked when they had five people, doctors and aides. . . . All these 

people came towards me. . . . I wondered what was going on. So I started 

writing notes to them. . . . I could see they were talking. . . . I had no idea why 

there were five people there looking at me. . . .116

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Many deaf participants in focus groups said that they frequently relied on family 

members or friends to interpret for them during medical visits. This practice not only 

raises serious confidentiality issues for the person who is receiving care but also does 

not necessarily ensure effective communication between the patient and clinician. 

Health care providers typically overestimate the sign language skills of friends or family 

members who are neither trained in medical interpretation nor certified as sign language 

interpreters. Sometimes young children interpret for parents or family members. 

However, it can be quite difficult for children to accurately convey medical information. 

They may not fully understand the information or may find the information distressing. 

People who are deaf may have difficulty understanding their health care provider’s 

instructions about therapeutic programs, prescription dosages, or side effects, which 

can lead to new health problems and reinforce stereotypes about the intellectual 

capacity of the person who is deaf. In one study, a deaf participant talked about having 

surgery without an interpreter available. 

I needed a tonsillectomy. I went to the hospital and I was scared. I was 

sedated and anesthetized, and I woke up afterwards, scared and crying. I 

didn’t know what to expect or what was going on with the swelling. There was 

no interpreter there.117

Another deaf individual noted that the problems are a deterrent to seeking care. 

There are a lot of deaf people who won’t go to the doctor. [They think] I’ll just 

bear with it until it goes away.118 

In several studies, deaf focus group participants indicated that communication is most 

effective when they have the opportunity to work with medically experienced, certified 

ASL interpreters. However, often an interpreter is not available.119 One study revealed 

that even though physicians acknowledged that communication with deaf patients was 

most effective when ASL interpreters were available, they did not employ them 

frequently.120 This study also revealed that physicians overestimated the accuracy of 

speech-reading. 

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When people who are deaf or hard of hearing have access to deaf-friendly medical 

organizations (i.e., organizations in which methods for effective communication such as 

ASL interpreters and assistive listening devices are readily available and providers 

understand cultural aspects of deafness), screening rates for colorectal, cervical, and 

breast cancer are similar to rates for the general population.121 

• Mental Health System Concerns 

For some people who are deaf or hard of hearing, longstanding concern over the lack of 

qualified interpreters is greater when seeking mental health services, where inadequate 

communication has sometimes resulted in inappropriate institutionalization and loss of 

liberty. Research has shown that some people who are deaf or hard of hearing distrust 

mental health providers in part because of concerns that communications will be 

ineffective in mental health settings. Some focus group participants expressed fear that 

confidentiality might be violated and that the ASL skill levels of interpreters would not be 

adequate. Others said that in mental health settings people who were deaf were at the 

mercy of hearing authorities, who were likely to be prejudiced about deafness. 

Participants in several studies expressed the concern that people who were deaf could 

mistakenly be committed to mental health facilities solely because of barriers to 

communication.122 People who are deaf or hard of hearing have expressed strong 

concern that mental health professionals have misdiagnosed patients who are deaf and 

prescribed incorrect medication for them because of stigma, stereotypes, and ineffective 

communication. 

Some health care providers who are deaf or hard of hearing have observed that 

standard psychological testing can be inappropriate for people who are deaf because 

testers are rarely fluent in ASL and rarely understand Deaf culture.123 Deaf patients who 

were willing to visit a therapist preferred to work with a deaf therapist. If that was not 

possible, they preferred to work with mental health counselors and therapists who were 

fluent in sign language. 

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Perceptions of mental health services can also depend on age. A study of senior, 

middle-aged, and young adults who were deaf asked the subjects what they would do if 

they needed mental health services. Those in the senior group said they would seek 

help from a friend or family member, while younger people said they would probably 

seek a mental health professional.124

• Lack of Insurance Coverage 

According to unpublished data from the 2007 National Health Interview Survey, among 

people in the U.S. civilian population between the ages of 18 and 64 who identify as 

deaf or hard of hearing,125 21.3 percent do not have any health insurance, while 

34.2 percent are covered by private insurance, and 55.3 percent are covered by public 

insurance (30.1 percent by Medicare and 27.9 percent by Medicaid).126

d. Disease Prevention and Health Promotion 

Studies suggest that people who are deaf or hard of hearing experience specific 

barriers to participating in prevention programs, may have limited access to appropriate 

and accessible information about health promotion activities, and may not understand 

why such programs and activities are important. In particular, adults who are deaf tend 

to have less health literacy compared with the hearing population. 

Lack of access to information in the media limits awareness of health-related 

information on the part of people who are deaf. Topics such as the latest health studies, 

and information about prevention and health services, nutrition, alcohol and substance 

abuse, sex education, and domestic violence prevention, are often discussed in popular 

media outlets, which are typically presented only in an audible format. It is not 

surprising, then, that adults who are deaf tend to have less health literacy compared 

with the hearing population. Some people who are deaf or hard of hearing are unaware 

of mental health services available in the community and unfamiliar with terminology 

used by mental health practitioners, suggesting a lack of information about these 

services as well.127

70 
For example, a comprehensive survey of 203 deaf patients in two health care systems 

that offer programs and services aimed at the Deaf community illustrated the 

respondents’ lack of basic knowledge about health conditions. Forty percent of survey 

participants could not identify any of the seven most common warning signs of a heart 

attack, while 62 percent could not identify any of the seven most common warning signs 

of a stroke. In fact, 32 percent of study participants could not identify any risk factors for 

a heart attack or stroke, and one in three could not define the word “cancer.”128 In 

another study, more than 70 percent of deaf participants said that people who were deaf 

could not get HIV, and more than 50 percent did not know the meaning of “HIVpositive.”129 According to one survey, high school students who are deaf or hard of 

hearing had some understanding about HIV and AIDS, but there were significant gaps 

in their awareness of how the infection is prevented and transmitted.130

Focus group research has shown that women who are deaf have unique linguistic and 

cultural issues that affect their health and their health care experiences. Participants 

were unaware of the need to assess health risks through prevention and diagnostic 

screening procedures, including those for cardiovascular disease. Some participants 

also lacked knowledge and information about screening and diagnostic procedures for 

breast and cervical cancer, and about the purpose and importance of treatments such 

as surgery.131

In general, women reported that they avoided visiting a health care provider because of 

the lack of effective communication, although they also reported positive experiences 

with some practitioners who use qualified interpreters.132 Studies comparing the 

prenatal health care of women who are deaf and women without hearing impairments 

reveal significant differences between the two groups. Women who were deaf were less 

satisfied with their prenatal care than hearing women, and they expressed less 

satisfaction with the quality of communication with their health care provider.133 When 

deaf patients had access to ASL interpreters and to providers who understand cultural 

aspects of deafness, screening rates for colorectal, cervical, and breast cancer were 

similar to rates for the general population.134 

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A recent literature survey produced no information specifically aimed at men who are 

deaf regarding the benefits of early screening, detection, and treatment of prostate 

cancer. In response to this gap, a prostate cancer education program was adapted and 

tested on a small sample of men whose baseline knowledge about the disease 

increased, as shown in followup surveys. While this program evolved into an Internet 

ASL-accessible video on prostate health, research on the effectiveness of this strategy 

must still be conducted, and ensuring that all men who are deaf have access to such 

information remains a challenge.135

Similarly, little research has been carried out on tobacco use by youth who are deaf or 

hard of hearing. However, a recent study reveals that middle and high school students 

generally smoke less than their hearing peers, and that students who attend integrated 

educational programs were more likely to have tried smoking than their peers in schools 

for deaf students. This study also shows that although health care providers are 

important sources of prevention information, few students reported that they had 

received anti tobacco messages from their health care providers or in clinical settings—

another missed opportunity to convey prevention guidance.136

e. Conclusion 

There is a tremendous need for increased attention to issues people who are deaf or 

hard of hearing have identified as deterrents to their health promotion and health care. 

The longstanding problems that arise from inequities in communication and poor access 

to culturally and linguistically appropriate health care and health information have failed 

to draw the level of institutional response from policymakers that is required to bring 

about systemic change. 

At a minimum, additional public resources must be allocated to encourage and support 

ASL interpreter training and payment for interpreter services in medical settings. 

Congress should explicitly direct Medicare & Medicaid to pay for interpreter services, 

and states should require private health insurers to include payment for interpreters as a 

72 
reimbursable expense to health care professionals or as an accepted cost to be 

negotiated in managed care provider payment schemes. 

There is also an important role for medical educators, who must train young 

professionals, including people who are deaf or hard of hearing, about issues of 

concern to the Deaf community and challenge negative stereotypes that currently 

influence practitioners’ attitudes and methods for providing care. Accreditation 

organizations must include methods in their survey and monitoring mechanisms to 

evaluate the extent to which health care facilities have the capacity to provide 

interpreters for deaf or hard-of-hearing patients in a timely and effective manner. Patient 

education materials should also be assessed and modified to ensure that they are 

accessible. 

3. People Who Are Blind or Have Vision Impairments 

In the United States, vision impairment and blindness rank among the top 10 most 

common disabilities, and aging is associated with the leading causes of vision loss.137

While the population of people who are blind or have vision impairments is 

heterogeneous and generally similar to the general population, the group as a whole 

tends to be older and poorer, and to include more women.138 The number of people 

who are blind in the United States is projected to increase by 70 percent to 1.6 million

by 2020, with a similar rise projected for vision impairment. at 139 Research has shown th

these conditions can be associated with a reduced quality of life and shorter life 

expectancy.140

a. Prevalence of Blindness and Vision Impairment 

Approximately 10 percent of the population aged 18 and older experiences vision 

problems, defined as difficulty seeing even when using glasses or contact lenses. 

Among these, 0.7 million people (0.3 percent) are blind. Women are more likely to have 

vision impairments than men, and vision problems increase with age.141 More than twothirds of adults who have vision impairments are over age 65, and the leading causes of 

73 
vision impairment in the United States are age-related. These include cataracts, 

macular degeneration, glaucoma, and diabetic retinopathy.142

Diabetes is the leading cause of blindness among adults aged 20 to 74; between 

12,000 and 24,000 new cases of blindness attributed to diabetes are reported 

annually.143

Income, education, and membership in certain racial and ethnic minority groups are 

significantly associated with vision impairment.144 For example, 16 percent of adults in 

poor families had vision difficulties, compared with 9 percent of adults in families that 

were not poor.145 People who are Hispanic have higher rates of vision impairment than 

people who are African American, and both groups have higher rates than those for 

people who are white.146 In addition, approximately 27 percent of the 4 million people 

living in nursing homes have vision impairments. These individuals have not been 

counted or included in national health surveys until recently.147

b. Health Status and Health Experiences 

• Health Disparities 

Approximately 30 percent of people over age 18 who have vision impairments rate their 

overall health status as either “fair” or “poor,” compared with 8 percent of the population 

that does not have vision impairments. They also experience a greater prevalence of 

obesity. Studies suggest that slightly over 26 percent of adults with severe vision 

impairments are obese, compared with only 15 percent of adults who do not have such 

vision loss.148 Numerous medical conditions have been linked to obesity and being 

overweight, including Type II diabetes, cardiovascular and pulmonary disease, certain 

cancers, sleep apnea, and liver and gallbladder disease. Adults with vision impairments 

are also more likely to have heart disease and hypertension than the general 

population. People with significant vision impairments also smoke more than the 

general population.149

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People who experience significant vision loss report higher rates of depression and 

anxiety than people without vision impairments. One study reports that among the 

estimated 5.7 million older people who have vision impairments, 3.3 million are at 

increased risk for mild or moderate depression, and 350,000 may experience severe 

depression.150 Recent evidence suggests that young and middle-aged people who 

develop vision loss, rather than experiencing it from birth, may have depression at even 

higher rates than older adults.151 Further, some evidence suggests that adults who have 

vision impairments and have depression are less likely to seek vision rehabilitation 

services. When they do participate in these services, they have poorer outcomes than 

people who have vision impairments and do not have depression.152 

Among Medicare beneficiaries, 8.1 percent of people with severe vision impairments 

indicate dissatisfaction with the overall quality of their health care, compared with about 

4 percent of the general population. About 11 percent of Medicare users who have 

vision impairments report that they do not receive adequate information from their 

providers about their health conditions, compared with 6 percent of people who do not 

have vision disabilities.153 Within the population of older people, vision impairment is 

associated with reduced mobility, falls, increases in hip fractures, depression, and even 

mortality.154 

Adults under age 65 who are covered by Medicaid are more likely to have problems 

with their vision than those who have private insurance or no insurance. Among adults 

age 65 and over, those covered by Medicaid and Medicare are more likely to have 

vision problems than those with only Medicare health care coverage or private 

insurance.155

• Health Experiences 

National surveys provide new information about the health of people who are blind or 

have vision impairments, as well as about their general satisfaction with health care. 

However, few studies inquire in detail about the health care experiences of people who 

are blind or have vision impairments, or explore their ideas for improving their care.156

75 
One cross-disability focus group study revealed that people with diverse disabilities, 

including people who are blind or who have vision impairments, have encountered 

disrespect, insensitivity, and lack of disability awareness in health care settings. 

Distressing encounters with the health care system can lead to distrust and even fear, 

which in turn leads people to avoid getting health care.157

One participant in a focus group of people who are blind or have vision impairments 

described how he would like to be treated by health care providers. 

We are not accepted as a . . . human being, over and over again. We have got 

to be seen as persons of worth and people who actually can contribute to our 

own care. . . . We should be treated as individuals with intelligence.158

Similarly, older persons with vision disabilities may find it difficult to negotiate an 

unfamiliar health care setting and, as a result, appear confused or hesitant. This 

demeanor can lead to misunderstandings and even spark impatience on the part of 

health care professionals, leading to a negative experience for the person who has the 

vision disability.159

c. Barriers to Health Care 

• Lack of Health Care Provider Awareness 

Participants in one focus group frequently reported that health care providers and their 

staffs were unaware of how to relate appropriately to people who are blind or have 

vision impairments. They indicated that some health care providers are uncomfortable 

communicating with patients who are blind or have vision impairments. For example, 

providers frequently speak to a companion who is sighted, rather than speaking directly 

to the person who is seeking medical care. Almost 10 percent of people who have 

vision impairments indicate that clinicians tend to focus on discrete symptoms rather 

than on the whole person, compared with 5.1 percent of people who do not have vision 

impairments.160 One woman who is blind described her experiences with her health 

care providers. 

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They don’t really know how to deal with a blind person. They don’t know how to 

treat you. As opposed to coming up and saying, “I’m so-and-so. I’m going to 

take you in the room now,” they grab you. They snatch you. They push you. 

They’ll grab you around the shoulders and push you along.161

People who are blind or have vision impairments may also need assistance filling out 

forms. They report that, while office staff are willing to assist them, the staff frequently 

do so in the waiting area. Doing this means that patient confidentiality cannot be 

maintained.162 

• Lack of Transportation and Facility Accessibility 

Focus group participants also identified other barriers to care. Barriers related to public 

transit included lack of public transportation in suburban and rural areas, difficulty 

scheduling rides, and difficulty relying on paratransit to get to appointments on time. 

Barriers in the facilities of health care providers included lack of appropriate, accessible 

signage using Braille and raised letters. Without such signs, it is difficult to identify 

destinations within suites of medical offices. 

• Poor Diabetes Care and Lack of Information in Accessible Formats 

Health care providers rarely supply information in formats that are accessible to people 

who are blind or have vision impairments. Health care instructions, educational 

materials, and information about medications are typically provided only in print.163

Outcomes from one focus group indicate that people who are blind or have vision 

impairments do not receive diabetes education and care equivalent to people without 

vision impairments.164

Many people who are blind or have vision impairments and who also have diabetes 

report that diabetes care professionals are poorly equipped to serve them appropriately. 

Professionals rarely understand their need for information in an accessible format. One 

informal survey revealed that three of nine diabetes educators recommended that their 

patients who have vision impairments get help from a sighted person rather than learn 

self-care for their diabetes. Further, this survey revealed that health care providers are 

77 
generally unaware of speech-output devices that enable people who have vision 

impairments to measure their blood sugar and blood pressure independently. Managing 

diabetes properly requires training and regular monitoring, so individuals who have 

vision impairments must be able to do so independently. However, these barriers act as 

a deterrent for many.165 Recognizing the urgency of this problem, the leading national 

organizations in the United States that work on behalf of people who are blind and have 

vision impairments published a consensus statement calling for accessible diabetes 

education.166

In addition to blood glucose and blood pressure information, people who are blind or 

have vision impairments also require access to prescription information. Conventional 

medication vials provide information only in printed form, but new technology has been 

developed that provides independent access to print information required to identify and 

use prescription medications. Called ScripTalk, the system involves an encoding unit 

housed at the pharmacy that is attached to the computer that pharmacists use to create 

print prescription labels. This unit creates a prescription label containing a tiny chip in 

which information is embedded. The label is read by a battery-powered radio frequency 

identification reader in the possession of the person who is blind or who has a vision 

impairment. Thus far, only the Department of Veterans Affairs (VA) is making ScripTalk 

available to veterans with vision loss.167 ScripTalk, or other similar technologies as they 

develop should be made available in pharmacies and to people with vision impairments 

to meet the critical need for such customers to have full and independent access to 

prescription medication information. Further, public and private health care insurance 

plans should include this technology in coverage agreements to ensure that it is readily 

available to those who need it. 

• Lack of Insurance Coverage for Mental Health Services 

Although the demand for mental health services is great, funding is inadequate and 

available services cannot meet the need. Medicare and Medicaid provide some mental 

health care. However, significant disparities exist between the coverage they provide for 

physical health services and the coverage they provide for services related to mental 

78 
health. Insurance reimbursement frequently requires people who need mental health 

services to pay higher deductibles and copayments for mental health care than for 

physical care. Insurers often cap benefits and restrict the number of treatment visits as 

well. Further compounding the problem, primary care and mental health providers 

sometimes incorrectly assume that an individual’s mental health problem relates directly 

to her or his vision impairment. They may refer the individual to vision rehabilitation 

services, which do not treat the underlying depression.168 

• Limited Vision Rehabilitation 

Vision rehabilitation provides opportunities for many people who are blind or have vision 

impairments to regain personal and functional independence. Vision rehabilitation 

typically includes such services as “low vision evaluations; training in techniques for 

using one’s remaining vision; provision of low vision devices and training in their use; 

mobility training to enable a person to travel safely indoors and outdoors; and training in 

adaptive techniques for communication and for home and personal management.”169

However, access to vision rehabilitation services is limited, in part because of eligibility 

definitions. Even people who are eligible for services may not know that they are 

available or may find their cost prohibitive. Further, too few vision care specialists, 

including ophthalmologists and optometrists, refer eligible people who have vision 

impairments to vision rehabilitation services. This is largely because these services 

have typically been provided by social service or community organizations rather than 

through traditional health care service delivery systems. 

For working-age people who have vision impairments, public funding for vision 

rehabilitation services is limited unless they have explicitly employment-related 

objectives. Medicare and other health insurers also do not cover certain services that 

help older people who are blind or have vision impairments to live and function 

independently. Older people make up a large majority of the population experiencing 

severe vision loss, and more than two-thirds of adults who have vision impairments are 

over age 65.170 Among beneficiaries of Medicare, approximately 9 percent (or 

3.2 million) are people who are blind or have vision impairments; of these, almost 

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90 percent (2.9 million) are aged 55 and older. Vision rehabilitation services are 

particularly critical for older people to help mitigate the negative effects of additional 

medical problems such as diabetes and cognitive, hearing, or balance problems.171

Since the late 1990s, some vision rehabilitation services have been available to 

Medicare beneficiaries in some geographic areas when they are provided by certified 

occupational, physical, and speech therapists. Such services are available in medical 

facilities under the supervision of a physician but are not available in the home or 

community.172 

In 2003, Congress initiated a Low Vision Rehabilitation Demonstration Project to assess 

the impact of adding certified low vision therapists, certified vision rehabilitation 

therapists, and orientation and mobility specialists to the list of those who can receive 

Medicare payments for services. Such services include those provided in the home and 

community when they are provided under the supervision of an optometrist or 

ophthalmologist. If the program succeeds, Congress could permanently recognize the 

benefit of including these vision rehabilitation professionals as approved Medicare 

service providers. Although advocates and service providers have worked diligently to 

overcome financial barriers that deter people of all ages who need these services from 

obtaining them, these and other barriers remain a significant challenge.173

d. Disease Prevention and Health Promotion 

Although people who are blind or have vision impairments experience overweight and 

obesity at a higher rate than the general population, health maintenance programs 

emphasizing weight management and fitness have not been directed toward or tailored 

to them. Likewise, diabetes education and care management have not reached people 

who have vision impairments and diabetes. The public health community may treat 

people who are blind or have vision impairments as though their vision problems are 

their only—or their most serious—health issues. Traditionally, public health programs 

have emphasized preventing vision loss, but they have devoted little attention to 

preventing secondary diseases and promoting healthy lifestyles for people who are 

blind or have vision impairments. However, experts in vision rehabilitation and public 

80 
health officials have begun a dialogue that suggests that the fundamental differences in 

orientation between the two disciplines may be changing. 

• Overweight and Obesity 

Research has shown that people with disabilities are significantly more likely to be 

obese than those without disabilities. For people who are blind or have vision 

impairments, the odds of being obese are 1.5 times greater than for the general 

population.174 People who have vision impairments are less physically active, and are 

generally in poorer physical condition, than people who do not have vision impairments. 

Further, studies show that older children who have vision impairments are less 

physically active than are younger children who have vision impairments.175 Various 

factors contribute to inactivity and overweight among people who have vision 

impairments, including difficulties obtaining and preparing fresh foods, lack of 

transportation, inaccessible exercise equipment, and the inaccessibility of the 

pedestrian environment.176 However, little effort has been made to promote health and 

weight management for people who are blind or have vision impairments. The lack of 

tailored programs and accessible exercise equipment prevents people who have vision 

impairments from participating in exercise programs that could lead to weight loss.177 

• Access to Fitness Equipment 

Most health experts agree that exercise is essential to achieve and maintain good 

health. However, people who are blind or have vision impairments encounter numerous 

problems using standard exercise equipment. For example, fitness experts frequently 

recommend using treadmills or stationary bikes to achieve a cardiovascular workout. 

However, most of these devices do not feature either tactile markings or speech output 

on the control panel. Display screens and control labels cannot be easily read by people 

who have vision impairments. Because information about the speed, heart rate, and 

duration of the workout is displayed in numbers or graphs, few people who are blind or 

have vision impairments can benefit fully from technology that is readily available to 

others. Similarly, elliptical trainers typically have tactile buttons for adjusting the angle of 

81 
the motion or resistance but also feature display screens that present information only 

visually rather than both visually and audibly.178

Some new computerized systems attach to existing fitness equipment and provide 

feedback to users, which helps them achieve better form and exercise more safely. 

However, these systems typically have a touchscreen interface, which is not accessible 

to someone who is blind or has vision impairment. Again, this creates a barrier to using 

equipment that is readily available to others.179

Recreation facilities are often not accessible. Features that could make the outdoor 

recreation environment more usable by people who have vision impairments include 

benches along trails, tactile maps, and raised character or audible signage. Accessible 

signage would also help people who are blind or have vision impairments to navigate 

efficiently and safely around an exercise or fitness facility.180

e. Public Health and Vision Rehabilitation 

In recent years, researchers concerned with promoting health for people who are blind 

or have vision impairments have begun building alliances among public health, vision 

rehabilitation, and aging programs. Such alliances have the potential to leverage public 

resources to improve the health of the broad population of people who have vision 

impairments. 

Traditionally, the primary goal of public health has been disease and disability 

prevention. The primary goal of the independent living movement has been economic 

and social independence for people with disabilities. Progress toward social equality 

and full community participation for people with disabilities, spurred in part by the 1990 

Americans with Disabilities Act (ADA) and advances in medicine and technology, make 

it possible for these communities to begin reconciling their differences and exploring 

and adopting complementary goals. A progressive health perspective for people who 

have vision impairments recognizes the dynamic and interrelated aspects of 

82 
contemporary community life and places the experience of blindness and vision loss at 

its center rather than on the periphery.181 

Some leaders in the public health field, as well as some working in visionrelated rehabilitation and access, have begun to acknowledge that their aims 

are essentially the same. . . . They may emphasize different intermediate 

outcomes—improved health on the one hand, improved functioning in daily 

living on the other—but their common long-range goal is the full participation in 

society of people with disabilities. That goal, it is worth noting, corresponds to 

the mission of the Americans with Disabilities Act (ADA, 1990), which states 

that “the Nation’s proper goals regarding individuals with disabilities are to 

ensure equality of opportunity, full participation, independent living, and 

economic self-sufficiency for such individuals.” Because the ADA expresses 

the nation’s current disability policy rationale, it further justifies and supports 

the aim of bridging public health and vision rehabilitation.182

In light of the high prevalence of obesity, lack of fitness, diabetes, and depression 

among the large and growing number of people who have vision impairments, it is 

imperative that the diverse communities of public health and vision rehabilitation 

professionals join forces to identify solutions that address these and other systemic 

gaps in health promotion. As the philosophical divisions between these groups blur, 

they will identify and successfully implement long-term solutions to improve overall 

health for the community of people who are blind or have vision impairments. 

f. Conclusion 

Diabetes is the leading cause of blindness among adults, yet information about diabetes 

management and care is rarely available in accessible formats. People with vision 

impairments also do not have ready access to blood glucose and blood pressure testing 

equipment with audio functions or devices that provide prescription information in an 

audible format, so they have difficulty managing their diabetes and other care 

independently. In general, people with vision impairments are not included in preventive 

care and health promotion, and they experience significant barriers to health care. 

These barriers include inaccurate provider attitudes about blindness and vision 

impairment; physical barriers such as inadequate or lack of transportation and 

physically inaccessible health care facilities and fitness equipment and programs; 

83 
limited educational and instructional materials in accessible formats; inadequate access 

to vision rehabilitation services, programs, and related accessible technologies; and 

inadequate access to prescription drugs and specialty care. 

Action must be taken where existing research reveals the clear need for such strategies 

as enhanced health care provider education, enhanced payment systems, and the 

removal of structural and other physical barriers to providing and receiving quality health 

care services. 

4. People with Intellectual and Developmental Disabilities 

Historically, society has isolated people with intellectual and developmental disabilities 

in large institutions. These institutions were often characterized by inhumane living 

conditions and inadequate care. The deinstitutionalization movement of the 1960s and 

1970s established the right of people with intellectual and developmental disabilities to 

live and participate in their communities and created programs that provide support and 

assistance to ensure that these goals are met. The movement both enabled and 

encouraged parents and families to provide care at home for their relatives. It also 

created opportunities for independent living for adults. Community-based services and 

supports, advancements in medical care, and assistive technology have led to 

improvements in quality of life for people with intellectual and developmental disabilities. 

While people with developmental disabilities have better health and are living longer as 

a direct result of these fundamental reforms, they continue to experience significant 

health disparities compared with the general population.183 

a. Prevalence of Intellectual and Developmental Disabilities 

For the purpose of establishing eligibility for community services, the Federal 

Developmental Disabilities Assistance and Bill of Rights Act of 2000 defines 

developmental disability as chronic physical or mental impairments or a combination of 

impairments that appear before age 22 and that create substantial functional limitations 

in at least three or more of the following areas of major life activity: self-care, language, 

84 
learning, mobility, self-direction, capacity for independent living, and potential for 

economic self-sufficiency during adulthood.184 The term “developmental disability” may 

include people who have intellectual disabilities (formerly referred to as mental 

retardation); sensory impairments involving hearing, vision, and speech; orthopedic 

impairments; and other disabilities such as cerebral palsy, autism, and pervasive 

developmental disorder. People with developmental disabilities sometimes require 

individualized services and supports (for example, housing, employment, education, 

civil and human rights protections, and health care) to live in the community. 

Approximately 4.5 million people with developmental disabilities live in the United 

States.185 About half of the estimated 2.3 million people with intellectual disabilities are 

also considered people with developmental disabilities, because they experience the 

required functional limitations.186 While people with disabilities such as cerebral palsy 

and autism do not necessarily have intellectual disabilities, both groups share the 

experience of disability stigma and discrimination. Both encounter barriers to 

participating fully in their community, including barriers to obtaining adequate health 

care.187 For the purpose of this report, the term “developmental disability” includes 

cognitive, intellectual, and developmental disabilities. 

b. Health Status and Health Experiences 

Many of the health needs of people with intellectual and developmental disabilities are 

similar to those of the general population. These health needs include access to primary 

health care, wellness and prevention services, dental services, mental health care, care 

coordination, accessible facilities and services, culturally competent care, personal 

assistance and caregiving, and nutrition.188 However, compared with people without 

disabilities, people with intellectual and developmental disabilities are more likely to 

have poor health, be susceptible to illness, have limited access to care, and be 

excluded from health promotion opportunities.189

85 
• Health Disparities 

Health programs based on research evidence about the general population have 

excluded or ignored the needs of people with disabilities, including those with 

intellectual and developmental disabilities.190 People with intellectual and 

developmental disabilities experience a constellation of health and health care 

disparities, including inadequate health and wellness promotion and inconsistent ac

to high-quality health care services. As a result, they are in poorer health and have 

shorter life spans than people who do not have these disabilities.

cess 

isabilities.”192 

191 A recent study

summed up the “cascade of disparities that result in poor health status of people with 

intellectual and developmental d

The effects of differences in prevalence rates of adverse health conditions and 

behavior disorders are compounded by disparities in attention to care needs, 

which are further impacted by disparities in preventive care and health 

promotion practices, and all are finally impacted by disparities in equitable 

access to health care.193

Studies report that adults with developmental disabilities are at risk for multiple health 

and behavioral problems, including hearing and vision difficulties, cardiovascular 

disease, obesity, seizures, mental health and behavior problems, poor oral health, and 

poor general fitness.194

Some studies suggest that people with intellectual and developmental disabilities are at 

higher risk for behavioral and emotional difficulties than the general population, and that 

more people experience psychiatric disabilities than are actually diagnosed. There are 

several possible explanations for this gap. One is that this group lacks mental health 

services. Another is that disorders go unrecognized because clinicians wrongly attribute 

mental health symptoms to the individual’s disability rather than to a separate 

condition.195 Another study reviewed records of people with intellectual and 

developmental disabilities, and discovered that one-third to one-half of them had been 

prescribed medications for mental health conditions despite not having any psychiatric 

diagnosis.196 

86 
Two common secondary conditions found among people with intellectual and 

developmental disabilities are lack of physical fitness and obesity. While rates of obesity 

are high in the general population, the overall prevalence of obesity for adults with 

intellectual and developmental disabilities is significantly higher (35 percent) compared 

with adults who do not have these disabilities (21 percent).197

• Poor Dental Health 

While most people who live in community-based residential settings or with friends or 

family had access to dentists, they had poor dental health because of lack of preventive 

care and inadequate dental hygiene. Access to care can also pose significant problems. 

Case managers have indicated that dental services are more difficult to find than any 

other type of service for individuals with intellectual and developmental disabilities who 

live in the community. Families and support personnel also indicate that quality of care 

is lower than it should be, because dentists lack the skills required to work or 

communicate with people with intellectual and developmental disabilities.198

c. Barriers to Health Care 

Studies have shown that people with intellectual and developmental disabilities—as well 

as the families, caregivers, and advocates who help them to get care—face 

extraordinary barriers to preserving health and getting health care when they need it: 

They feel excluded from public campaigns to promote wellness. They describe 

shortages of health care professionals who are willing to accept them as 

patients and who know how to meet their specialized needs. They struggle with 

unwieldy payment structures that were designed decades ago when people 

with [intellectual and developmental disabilities] often died in childhood or lived 

out their lives in residential institutions.199

• Lack of Needed Health Care Services 

Approximately 480,000 people with intellectual and developmental disabilities receive 

Medicare, while Medicaid covers 1.5 million adults living in the community and 246,000 

people with intellectual and developmental disabilities living in institutions. About 

70 percent of Medicare beneficiaries with intellectual and developmental disabilities are 

87 
also enrolled in Medicaid, the largest source of funding for health care for people with 

disabilities, providing both acute and some long-term care benefits.200 About 7 percent 

have insurance through their employers. Although some children with intellectual and 

developmental disabilities are insured through their parents’ health plan, private 

insurance often has gaps in coverage, high premiums and copayments, and no 

mandate to provide needed benefits.201 

Because Medicaid includes both mandatory and optional services, certain critical 

services may not be available to people with intellectual and developmental disabilities. 

These services include dental care and certain prescription drug coverage.202 To 

reduce health costs, many states have developed managed care programs and either 

require or encourage the enrollment of people with disabilities who participate in the 

program. These programs have potential benefits, but they can also present certain 

drawbacks for people with intellectual and developmental disabilities. In some cases

Medicaid managed care programs are poorly equipped to meet the needs of peo

with disabilities, including people with intellectual and developmental disabilities.

, 

ple 

, 

rvices.205

203

Problem areas include inadequate care coordination, limited access to specialists

limited consumer choice, and inadequate risk adjustment for capitation rates.204 One

study revealed that in a managed care system, one-third of children with autism had 

difficulty gaining access to specialists, and one-fifth of children with intellectual 

disabilities experienced difficulty getting referrals to specialty se

Even with its limitations, Medicaid can be a better option than commercial plans. One 

study compared the experiences of parents with Medicaid and parents with private 

insurance. Parents with Medicaid had difficulties accessing specialty care three-fifths as 

often as parents with private health insurance. Similarly, when Medicaid provided 

secondary coverage, fewer problems were reported with access to care at the plan and 

provider level.206 However, annual budget cuts to publicly financed health care and 

regular reduction of services under these plans continue to threaten access to 

comprehensive, coordinated care for people with intellectual and developmental 

disabilities.

88 
• Lack of Adequate Health Care Provider Awareness and Communication 

Medical providers lack training and experience in treating individuals with intellectual 

and developmental disabilities. Some providers are uncomfortable providing care or are 

unwilling to serve patients with these disabilities. For their part, people with intellectual 

and developmental disabilities have indicated that some health care providers may not 

understand the extent to which people with these disabilities can contribute to their 

communities as well as to their own health. One self-advocate expressed her frustration 

with the negative attitudes of some health care providers this way: 

I am who I am, and I can be the best of who I am. All I’m trying to do is make a 

living, and the only way I can do that is to have good health care. Whenever I 

go into the doctor’s office . . . they talk to the people that bring me. But it’s my 

life and it’s my illness. . . . Can you respect me enough to talk to me?207

Communication between health care providers and patients with developmental 

disabilities can prove difficult, as can communication between providers and caregivers. 

This communication difficulty can hinder continuity of care and make providing care 

more difficult. Lack of financial incentives and burdensome administrative paperwork 

add to the problem. Often, providers are concerned about how long it might take to treat 

a person with an intellectual or developmental disability. Focus group research revealed 

the difficulty that one mother experienced obtaining dental care for her son. 

[We] can’t really get full care. It’s hard to find people with the patience to work 

with him, because he has to be given general anesthesia. When he was a 

child, he had to get caps put on his teeth, and this was a two-hour process. . . . 

Dentists don’t want to deal with the hassle.208

People with intellectual and developmental disabilities can find it difficult to 

communicate their health care needs to medical providers, and can also have difficulty 

following recommended treatments. Patient education materials are often written in 

ways that people with intellectual disabilities cannot understand, making follow-through 

less likely. Incorrect assumptions and stereotypes about people with intellectual and 

developmental disabilities, coupled with limited scientific knowledge about appropriate 

89 
standards of care, further contribute to health disparities. Negative experiences with 

health care providers also deter people with intellectual and developmental disabilities, 

and their families and caregivers from seeking care. Focus group research showed that 

providers’ misconceptions sometimes created dangerous situations for patients. 

One nurse reported that some emergency room doctors believe that patients 

with mental retardation do not feel pain and therefore do not need 

anesthesia.209

Participants sometimes got the message from providers that individuals with disabilities 

were not worthy of receiving a high standard of care, particularly as the patients grew 

older. A woman with a sister in her 50s with developmental disabilities noted that her 

sister’s doctor suggested reducing the frequency of visits from every few months to 

once a year. When challenged, the doctor replied, “She’s lived a good life—once a year 

is fine.”210

Further, language and cultural barriers can complicate communications between health 

care providers and people with intellectual and developmental disabilities and their 

families.211 Intellectual and developmental disabilities occur disproportionately in lowincome communities, where disparities in health and health care stem from economic, 

social, and environmental causes.212 

• Inadequate Health Care Transition from Childhood to Adult Care 

Serious problems arise most often as individuals make the transition from child health 

programs to services for adults. Nearly half a million young people with special health 

care needs make the transition into adulthood and adult health care services 

annually.213 Many children with intellectual and developmental disabilities receive 

medical care that is managed through an interdependent and complicated system that 

can include medical, educational, vocational, and social services. The transition from 

this multilayered system to adult health care can be fraught with difficulties. At a 

minimum, people with intellectual and developmental disabilities require a primary care 

physician who can focus on providing adult care. Health systems may fail to support the 

90 
transition process, and young adults and their families can find themselves without 

appropriate care. Problems include primary care physicians who are not trained to 

provide needed care and insurance schemes that do not adequately compensate health 

care providers for the time required to provide care and care coordination. Further, 

insurance plans can limit access to the few specialty providers who are familiar with the 

care needs of young adults with intellectual and developmental disabilities. Because 

these problems are widespread, the boards of the American Academy of Pediatrics, the 

American Academy of Family Physicians, the American College of Physicians, and 

American Society of Internal Medicine have adopted a policy statement that represents 

. . . a consensus on the critical first steps that the medical profession needs to 

take to realize the vision of a family-centered, continuous, comprehensive, 

coordinated, compassionate, culturally competent health care system that is as 

developmentally appropriate as it is technically sophisticated.214

Finally, environmental factors such as poverty, inadequate and inaccessible housing, 

unemployment, and poor transportation contribute to the poor health status of people 

with intellectual and developmental disabilities and limit access to necessary medical 

care and mental health services for them and their families.215 

• Barriers to Dental Care 

A number of studies have identified major barriers associated with poorer dental care 

for people with intellectual and developmental disabilities. Many lack insurance 

coverage for dental care and lack alternative funding for dental services. Case 

managers in smaller urban and rural areas report more difficulty finding dental services 

than those in large urban areas or rural communities. Architectural barriers in dental 

offices, including small examination rooms, also present obstacles to care. Some 

research reveals that characteristics such as severity of disability, challenging 

behaviors, and even wheelchair use may deter dentists from providing effective dental 

care. Families and caregivers also report that some dentists were “ineffective in dealing 

with extraordinary needs such as sedation, were not flexible in making unexpected 

accommodations, and had poor knowledge about people with ID.”216

91 
d. Disease Prevention and Health Promotion 

Adults with intellectual and developmental disabilities are more likely to lead sedentary 

lives, and more often report being in fair or poor health than adults without disabilities, 

according to a study conducted in North Carolina.217 However, research on issues 

related to health promotion for people with intellectual and developmental disabilities 

relies primarily on case studies. Little research has been conducted about secondary 

conditions they may experience.218 In one national study, family practice and internal 

medicine physicians indicated that they conducted fewer health promotion activities for 

patients with physical disabilities than for patients who did not have disabilities.219 Thus, 

it is particularly difficult for people with intellectual and developmental disabilities who 

also have physical disabilities to gain access to health promotion services. Women with 

intellectual and developmental disabilities receive fewer breast and cervical cancer 

screening examinations than women in the general population and are, therefore, at 

higher risk for these diseases. Similarly, men living on their own or with family members 

rarely have prostate exams.220

Disease prevention and health promotion for people with intellectual disabilities appear 

not only to vary depending on their living situation but also to be inconsistent within the 

same type of living arrangement. For example, one study showed that people either 

living alone or with family or friends lacked preventive health care screening and 

services such as flu shots, TB tests, and Pap tests.221 Also, people living with friends or 

family appear to be at increased risk for obesity compared with people who live in 

residential settings. Another study revealed that, while most people with intellectual and 

developmental disabilities living in community-based settings had primary care 

physicians, only half had received tetanus inoculations, less than half had received 

protection against hepatitis B, and fewer than three-quarters had received the flu 

vaccinations during the previous year.222

Family satisfaction with the quality of care provided by primary care physicians reflects 

broad, system-level problems. For example, in a study of 121 families in 

Massachusetts, parents who had children with intellectual and developmental 

92 
disabilities gave low ratings to their children’s primary care physicians on their ability to 

put the parents in touch with other parents, their understanding of the impact of the 

child’s condition on the family, their ability to answer questions about the child’s 

condition, and their ability to provide information and guidance on prevention.223

e. Conclusion 

Current data on the lives of people with intellectual and developmental disabilities 

confirm that an initial diagnosis of an intellectual or developmental disability results in 

greater susceptibility to physical and mental health issues, poorer health status, limited 

inclusion in preventive care and health promotion, and unequal access to health care. 

These unequal health outcomes are not all attributable to the functional limitations or 

impairments that arise from disability. Children and adults with intellectual and 

developmental disabilities encounter various economic, social, and environmental 

health disparities. They also are affected by limitations on commercial and public 

insurance and a highly fragmented health care system that lacks any systematic way to 

coordinate care across medical disciplines, type of health coverage, and age 

progression. As with any other identifiable minority group whose basic health care 

needs are not being met, people with intellectual and developmental disabilities are also 

affected by physical, financial, cultural, socioeconomic, and other environmental 

barriers. Immediate action must be taken where existing research reveals the clear 

need for such strategies as enhanced health care provider education, increased clinical 

and health disparities research, enhanced payment systems, and the removal of 

structural and other physical barriers that impede access to quality health care services. 

D. Conclusion and Recommendations 

The available research that describes the health status and health care experience of 

people with disabilities—especially women with disabilities, people who are deaf or hard 

of hearing, people who are blind or have vision impairments, and people with intellectual 

and developmental disabilities—presents a stark picture of health and health care 

disparities, preventable secondary disease, and diminished quality of life for many. 

While additional research is required to inform effective long-term public policy 

93 
responses, immediate action should be taken in response to what is already known. 

Specifically, the structural and environmental problems and barriers to health and health 

care services and programs that people with disabilities experience every day demand 

targeted actions and reforms that will have an immediate impact, as well as long-term, 

comprehensive reform.224 

RECOMMENDATION:

Congress should direct the Centers for Medicare & Medicaid Services (CMS) to 

establish a mechanism to pay for American Sign Language (ASL) interpreters 

when they are required for deaf or hard-of-hearing beneficiaries of Medicare, 

Medicaid, the State Children’s Health Insurance Program (SCHIP), and other 

federally funded health care to ensure that people who are deaf or hard of hearing 

who use sign language receive effective services from health care providers, 

including mental health providers, clinics, hospitals, diagnostic centers, and 

laboratories, and in other health care settings. 

RECOMMENDATION:

Congress should direct the Centers for Medicare & Medicaid Services (CMS) to 

identify and implement mechanisms to pay for vision rehabilitation services and 

assistive devices for people who are blind or have vision impairments who are 

beneficiaries of the Medicaid and Medicare programs or other federally subsidized 

health care. 

RECOMMENDATION:

The Centers for Medicare & Medicaid Services (CMS) should identify and 

implement mechanisms to pay for vision rehabilitation services and assistive 

devices for people who are blind or have vision impairments who are beneficiaries 

of the Medicaid and Medicare programs. 

RECOMMENDATION:

The Centers for Medicare & Medicaid Services (CMS) should identify and 

implement mechanisms to pay for vision rehabilitation services and assistive 

94 
devices for people who are blind or have vision impairments who are beneficiaries 

of the Medicaid and Medicare programs. 

RECOMMENDATION:

The Centers for Medicare & Medicaid Services (CMS) should update their current 

definitions of durable medical equipment and medical necessity, which are 

outdated and give little consideration to increasing an individual’s functional status. 

The current patchwork of both Federal and state health care and private insurance 

coverage contains barriers and gaps that leave many people with disabilities 

unable to obtain needed assistive technology. As a starting point, more consistent 

and coherent Federal eligibility and reimbursement policies are needed. New 

definitions of medical necessity are needed to ensure that effective assistive 

technology will be deemed eligible for coverage and reimbursement. 

RECOMMENDATION:

Agencies of the Federal Government, including the institutes and centers of the 

National Institutes of Health (NIH) that are involved in providing Federal grants and 

Federal loans, including loan forgiveness programs for medical education, should 

require that medical training institutions whose students receive support include in 

their training curriculums material that ensures that graduates will possess 

disability knowledge, cultural competency, and a basic capacity to work effectively 

with people with disabilities. 

RECOMMENDATION:

The U.S. Department of Health and Human Services (HHS) should direct key 

Federal agencies charged with health promotion and disease prevention to 

collaborate and implement methods that ensure that people with disabilities are 

fully included in health promotion and disease prevention research, program 

development, public education, and development of best practices. 

95 
RECOMMENDATION:

States should enact legislation that requires health insurers either to pay for sign 

language interpreters through employer-based group health insurance plans or to 

pay directly into a state fund or another mechanism established specifically to 

cover ASL interpreter expenses for people who are deaf who receive health care 

services through a private insurance plan. 

RECOMMENDATION:

Congress should ensure that reform of the health care system in the United States 

responds to the basic needs of people with disabilities by making certain that 

health care coverage is available and affordable to all people with disabilities 

without preexisting condition limitations. Benefits made available through either 

private or public coverage, or a combination, must include access to appropriate 

prescription medications, specialty care, care coordination, durable medical 

equipment and assistive devices, and long-term care services. Any coinsurance 

payments must be affordable, and annual or lifetime limits on these key benefits 

must not be permitted. Health care reform efforts must take into account the fact 

that achieving health care equity for people with disabilities includes the additional 

dimensions of physical and programmatic accessibility and health provider 

disability cultural competency. Some key elements of these additional dimensions 

include the need for more time for medical visits for some people with disabilities; 

methods that ensure effective communication, including provision of sign language 

interpreters and educational and instructional materials in accessible formats; and 

accessible diagnostic and other common medical office equipment, such as heightadjustable exam tables and wheelchair-accessible weight scales. To the extent 

possible, methods must be established to ensure that these essential elements are 

readily available when health care is delivered. These methods might include 

reimbursement for sign language interpreters by public and private insurers, new 

tax credits or other tax benefits that help offset costs, equipment sharing, and other 

schemes that create incentives for health care providers to acquire necessary 

equipment and services that are needed by patients with disabilities. 

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CHAPTER 2. Health Care and Federal Access 

Requirements 

Federal disability rights laws have explicitly mandated the removal of physical and 

programmatic access barriers in health care for many years; yet as this report clearly 

documents, myriad access problems remain. This chapter describes how these laws 

relate to health care services and facilities, and examines some of the civil actions and 

settlements brought under them that illustrate both the usefulness and the shortcomings 

of individual and class action lawsuits in the area of health care. 

Two key Federal civil rights laws address discrimination against people with disabilities 

in the provision of health care services.225 Section 504 of the Rehabilitation Act of 1973 

(Section 504)226 prohibits programs that receive Federal financial assistance, as well as 

federally conducted programs and activities, from discriminating against individuals with 

disabilities. Titles II and III of the Americans with Disabilities Act of 1990 (ADA)227 also 

prohibit disability discrimination and require health care providers to be physically and 

programmatically accessible to people with disabilities. 

A. The Americans with Disabilities Act and Section 504 

Title II of the ADA applies to state and local government entities, while Title III applies to 

“public accommodations.”228 Title III states that “private entities are considered public 

accommodations for purposes of this title, if the operations of such entities affect 

commerce” in 12 listed categories, one of which is a “professional office of a health care 

provider, hospital, or other service establishment.”229

Title II and Title III place somewhat different accessibility obligations on the entities that 

fall within their respective provisions, particularly in the area of removing architectural 

barriers in existing facilities.230 While no single entity can, by definition, fall within both 

Title II and III, as it will either be a Government entity or privately owned, private entities 

can be contractually bound to follow nondiscrimination laws that are applicable to state 

and local government entities. Similarly, a private entity can be obligated to follow 

97 
Section 504’s nondiscrimination obligations as a recipient of Federal funds. For 

example, a private nonprofit hospital that serves Medicaid patients is both in a 

contractual relationship with the state Medicaid agency as a Medicaid provider and a 

recipient of Federal Medicaid funds. That hospital’s contract with the state doubtless 

includes language that requires it to comply with any state nondiscrimination laws and 

the state’s own ADA Title II and Section 504 nondiscrimination obligations.231 Such a 

hospital is also a recipient of Federal funds and is therefore independently subject to 

Section 504. Another example is a private clinic that receives Federal monies under a 

Maternal and Child Health Services Block Grant to provide services such as newborn 

screening and immunizations. As a recipient of Federal funds,232 the clinic would be 

subject to Section 504 in addition to its own Title III obligations as a private health care 

service establishment. 

Title III prohibits “any person who owns, leases (or leases to), or operates a place of 

public accommodation” from discriminating against individuals “on the basis of disability 

in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, 

or accommodations of any place of public accommodation.”233 The law and its 

regulations are directly applicable to all the natural or corporate “persons” that own, 

lease to or lease, or operate the offices of individual health care providers. Larger 

nonprofit or for-profit private hospitals and health maintenance organizations (HMOs) 

are also subject to Title III.234 It is “discriminatory to subject an individual or class of 

individuals on the basis of a disability or disabilities of such individual or class, directly, 

or through contractual, licensing, or other arrangements, to a denial of the opportunity of 

the individual or class to participate in or benefit from the goods, services, facilities, 

privileges, advantages, or accommodations of an entity.”235 It is equally discriminatory 

to provide an opportunity to participate in or benefit “that is not equal to that afforded t

other individuals” or one “that is different or separate from that provided to other 

individuals” unless such action is necessary for equal effectiveness.”

o 

236

Under Title III, discrimination includes the failure to make reasonable modifications, 

provide auxiliary aids and services, or remove architectural barriers, because such 

98 
failures effectively prevent people with disabilities from enjoying the goods and services 

offered by a public accommodation. In the health care context, this means that a health 

care entity must modify its policies, practices, and procedures when necessary to 

enable people with disabilities to gain full and equal access to its services, unless a 

requested modification constitutes a fundamental alteration of the health care service 

itself. For example, an office would have to modify a policy of providing no assistance to 

patients who needed help with undressing or transfers if someone with a mobility 

impairment required such assistance to receive a proper examination. Health care 

entities must also provide auxiliary aids and services such as sign language 

interpreters, assistive listening devices, and written medical information in such 

alternative formats as Braille and large-font print unless the provider can establish that 

doing so would fundamentally alter the nature of the health care service or constitute an 

undue burden.237 Finally, health care entities are required to remove architectural 

barriers such as steps, narrow doorways, and inaccessible toilets in existing facilities if 

doing so is “readily achievable.” Health care facilities that operate in new construction or 

that undertake alterations to existing facilities must ensure that the new construction or 

alteration meets the higher standard of being readily accessible. 

Section 504 prohibits discrimination against otherwise qualified people with disabilities 

under any program or activity that receives Federal financial assistance; it directly 

applies to state Medicaid agencies238 and the many corporate health care entities and 

providers that receive Federal monies through Medicaid, Medicare, or Federal block 

grants.239 State Medicaid agencies also fall under Title II of the ADA, which states that 

“no qualified individual with a disability shall, by reason of such disability, be excluded 

from participation in or denied the benefits of the services, programs, or activities of a 

public entity, or be subjected to discrimination by any such entity.”240 Section 504 

regulations prohibit Federal financial recipients from providing directly—or through 

contractual, licensing, or other arrangements—”any aid, benefit, or service that denies 

people with disabilities the opportunity to participate in or benefit from Medicaid, affords 

people with disabilities an opportunity to participate in or benefit from health care 

services that are not equal to that afforded others, or provides people with disabilities an 

99 
aid, benefit or service that is not as effective as that provided to others.”241 Regulations 

enacted under Title II require state agencies to “make reasonable modification in 

policies, practices, or procedures, unless the public entity can demonstrate that making 

the modifications would fundamentally alter the nature of the program service or 

activity.”242 State agencies and other Federal financial recipients such as city or county 

governments or HMOs are bound to these fundamental Section 504 and Title II 

obligations, regardless of whether they enter subcontracts with additional third-party 

organizations or individual providers.243 

If these legal requirements were effectively implemented at the various levels of our 

health care system—from individual providers to HMOs to state Medicaid agencies—it 

would significantly decrease the health and health care disparities experienced by 

people with various disabilities, even if financial, coverage, and other barriers remained. 

Federal laws have explicitly mandated the removal of physical and programmatic 

access barriers in health care for many years; yet as this report clearly documents, 

myriad access problems remain. A closer look at some of the civil actions and 

settlements brought under these laws can illustrate both the usefulness and the 

shortcomings of individual and class action lawsuits in the area of health care. Title III 

applies to privately owned health care entities regardless of size, and lawsuits under the 

ADA have been brought against solo practitioners as well as large hospital complexes 

and multistate corporate HMOs that employ hundreds of providers and operate 

hospitals, clinics, and laboratories. 

Legal actions brought by individual plaintiffs against providers under Title III have 

achieved mixed results. ADA plaintiffs generally seek change in a defendant’s behavior, 

and are asking a court to either prevent the provider from engaging in discrimination or 

provide reasonable structural or programmatic modifications in the future. One initial 

hurdle for Title III plaintiffs has been the procedural requirement that a plaintiff must 

have standing to initiate a lawsuit and request injunctive relief.244 Among other factors, 

a plaintiff must have suffered “an injury in fact” (one that is actual or imminent and no

merely a matter of conjecture) and must establish a very significant possibility of future 

t 

100 
harm to achieve injunctive relief. When a couple, one of whom was a wheelchair user, 

initiated a lawsuit against a local hospital to have its birthing center made wheelchairaccessible in anticipation of future pregnancies, the court ruled that the couple was only 

asserting a speculative future harm that they could not prove.245 If a medical injury has 

already occurred, an individual plaintiff’s lawsuit can be successful and could garner the 

level of publicity needed to generate greater awareness of ADA requirements among 

medical professionals.246 Focusing on lawsuits brought by individual plaintiffs also 

highlights the simple reality that it is very difficult for most patients to initiate a legal 

action against their treating physician, a difficulty that is exacerbated when the patient is 

likely to encounter access barriers that makes finding an alternative provider difficult. As 

the deaf plaintiff in a recent New Jersey case testified, she continued to see a provider 

despite his refusal to supply an interpreter, because she had been specifically referred 

by her primary care physician, was unsure of the nature of her illness, was fearful about 

worsening symptoms, and was unable to simply pick up the phone and easily find 

another doctor.247

The U.S. Department of Justice (DOJ) is not subject to the same restrictive standing 

requirements as private individuals and has achieved more consistently positive results 

through administrative and legal actions brought under Title III against health care 

providers and hospitals. However, DOJ has limited human and financial resources and 

a mandate that requires a determination of “a pattern or practice” of discrimination or 

“an issue of general public importance” before commencing a civil action.248 The 

department has tended to focus on large, high-profile health care providers and issues 

when commencing action under Title III and has emphasized settlements and consent 

decrees over litigation. 

Nonetheless, some very significant results have been obtained through a few important 

lawsuits initiated against larger hospital complexes and HMOs, many with DOJ 

involvement. In 2000, three wheelchair users represented by Disability Rights 

Advocates (DRA) sued Kaiser Permanente, the largest nonprofit HMO in the country. 

The suit was brought in California Superior Court under state access laws, alleging that 

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Kaiser failed to provide equal and adequate care for patients with physical disabilities 

because of inaccessible examination equipment and pervasive barriers. A landmark 

settlement was reached in March 2001 in which Kaiser agreed to review and maintain 

its physical accessibility under state and Federal access laws; identify, procure, and 

install accessible medical equipment; and develop access policies and procedures over 

the settlement’s 7-year term.249 Given Kaiser’s size, one of the most far-reaching 

consequences of the lawsuit was that it prompted medical equipment manufacturers to 

develop such equipment as height-adjustable exam tables that have subsequently 

become more widely known, available, and affordable to other providers. The Kaiser 

settlement helped pave the way for a Federal action brought in November 2003 against 

the Washington Hospital Center, the largest private hospital in the District of Columbia, 

by DOJ and the Disability Rights Project of the Washington Lawyers’ Committee on 

behalf of four former patients of the hospital and one organizational plaintiff. This action 

also focused on architectural and equipment barriers for patients with mobility and other 

disabilities. In the settlement achieved 2 years later, Washington Hospital agreed that all 

exam tables and chairs purchased after the date of the agreement would be accessible 

and committed to providing staff training to ensure implementation and use of its new 

equipment and programmatic access policies.250

Some new accessibility issues raised by technological developments are also being 

addressed with respect to larger Title III entities. For example, the adequacy of video 

interpreting services (VIS—the provision of an remote interpreter through video 

conference technology over high-speed Internet lines), which are becoming more 

commonly used in medical settings, was part of the 2006 Consent Decree negotiated by 

DOJ, the Disability Rights Project of the Washington Lawyers’ Committee, and the 

private firm of Sutherland Asbill & Brennan LLP on behalf of seven deaf individuals.251

Laurel Regional Hospital had refused the individuals’ specific and repeated requests for 

in-person qualified sign language interpreters but had made available in some instances 

VIS. However, VIS alone is inadequate without performance standards or when used 

with patients with medical conditions or injuries that compromise their ability to see the 

video screen or be seen by the video camera. The decree is the first ADA case 

102 
resolution to include appropriate criteria for VIS use and monitoring, as well as requiring 

a communication assessment of each patient, appropriate auxiliary aids and services, 

DOJ-approved VIS equipment, notice to patients of their rights under the decree, and 

staff training.252

Actions against and settlements with hospitals and HMOs can play an important role in 

reducing access barriers for the population of people with disabilities who live in the 

geographic area serviced by a specific Title III entity. Even with these larger entities, 

however, it is hard to gauge the wider influence of these individual lawsuits in the 

context of all the hospitals operating in the country. Similarly, HMOs—especially those 

that are harder to characterize as direct providers of health care services and those 

outside of California—do not appear particularly motivated to grapple with their physical 

and programmatic responsibilities under Title III, or even to be aware of those 

responsibilities. People with disabilities and disability rights attorneys and advocates 

cannot be expected to change the health care system hospital by hospital, and the 

problem is exacerbated a thousand-fold when considering the degree to which provider 

practices and clinics outnumber hospitals. 

Ensuring that individual providers and clinics become and remain accessible is 

especially important because of the role outpatient health care services and nonhospital 

settings play in our health system. A 2006 summary of the National Ambulatory Medical 

Care Survey found that “[a]mbulatory medical care in physician offices is the largest and 

most widely used segment of the American health care system.”253 An estimated 

902 million visits were made to office-based physicians in 2006; over 50 percent of 

these visits were made by patients with one or more chronic condition such as 

hypertension, arthritis, or depression.254 “Physician offices comprised about four-fifths of 

all ambulatory medical care delivered in 2006, and physician consultation services 

included everything from primary care to highly specialized surgical and medical 

care.”255 These figures reflect visits to private practices, urgent care centers, public 

health clinics, family clinics, mental health centers, community health centers, and 

family practice plans but not hospital emergency or outpatient departments, VA medical 

103 
offices, or industrial, occupational, or institutional clinics. Overall, 83.4 percent of the 

visits surveyed were to practices “that were either owned by a physician or a group of 

physicians.”256 Over half of the office visits “were made to physicians who were part of a 

group practice, defined as having three or more physicians,” while “[s]olo practitioners 

accounted for 31.8 percent of the remaining identified office visits.”257 It is critical that 

offices involved in delivering ambulatory care be physically and programmatically 

accessible, given the wide-ranging types and amounts of services delivered in those 

offices and clinics. If they remain physically or programmatically inaccessible, or are 

allowed to set arbitrary policies that require patients to be “ambulatory” in the narrow 

sense of being able to walk, people with disabilities will inevitably experience inferior 

health care choice and quality. 

While Title III lawsuits and settlements are important and must continue to be brought, 

they cannot take the place of a commitment to systemic implementation of access 

principles that exist under Federal law. Public entities should develop health-carespecific standards of physical, programmatic, and clinical accessibility for providers, 

hospitals, and HMOs. These standards must be robustly monitored and enforced from 

top funding entities on down, through such intermediate organizations as HMOs and 

accreditation organizations, so that individual providers with the fewest resources—and 

consequently the greatest defenses to a Title III action—are not left to achieve 

accessibility on their own. Where the public entity is a state Medicaid agency, it is 

subject to Section 504 and Title II of the ADA and should take on a greater burden of 

ensuring health care accessibility at the provider level than simply passing on a 

contractual obligation. HMOs are also subject to Section 504 when they receive 

Medicaid and Medicare funding. While no case has actually argued that such an 

approach is mandated under 504 or the ADA, there are cases that provide some 

foundation to this legal theory of “kicking up” access responsibility from providers to 

HMOs to state Medicaid agencies. 

A Federal court in Pennsylvania has acknowledged that a state Medicaid agency can 

bear responsibility for ensuring that HMO managed care providers meet the 

104 
accessibility requirements of Federal law. In Anderson v. Department of Public 

Welfare,

258 the Pennsylvania Medicaid agency mandated Medicaid recipients in five 

counties to receive health care services through HealthChoice, an HMO network. The 

plaintiff class had initiated the action because they encountered physically inaccessible 

HealthChoice provider offices. The state agency had not considered or looked for 

accessibility when it initiated the HMO bidding process or when it conducted “readiness 

reviews” of the HMOs that were awarded the contracts. The court found the 

HealthChoice program inaccessible because it “does not comply with the minimum 

program accessibility regulations promulgated under Title II and Section 504” for new 

and existing construction.259 As a result, the court partially granted the plaintiffs’ Motion 

for Summary Judgment and issued an order that required the state to ensure that every 

participating HealthChoice provider met the accessibility requirements of Title II of the 

ADA. 

In Zamora-Quezada v. HealthTexas,

260 a group of HMOs and one of the provider 

medical groups in the HMO provider network were sued by two physicians employed by 

the medical group and a number of HMO enrollees with disabilities. The HMOs and its 

provider groups had entered contractual arrangements that divided the risk of service 

provision so that the network providers assumed greater risk for patients who had a 

higher cost per month. The plaintiffs charged that this financial and contractual 

arrangement gave network providers an incentive to delay or deny professional 

treatment services to higher cost enrollees with disabilities and resulted in discrimination 

under Section 504261 and Title III. The two physicians also alleged that they had been 

retaliated against and dismissed by the defendant provider medical group when they 

advocated for their patients with disabilities. The court denied defendants’ motion to 

dismiss and found that plaintiffs had stated a viable claim under Section 504 and the 

ADA. In doing so, the court at least implicitly acknowledge that an HMO’s contractual 

relationships with its provider network can both influence how those providers deliver 

health care and result in discrimination when people with disabilities are forced to seek 

the health care they need elsewhere.262

105 
These cases help set the stage for the argument that state Medicaid agencies and 

HMOs that receive Medicaid and Medicare payments have their own independent 

obligation under Section 504 to ensure that Medicaid and Medicare enrollees with 

disabilities are not excluded from participation in, denied the benefits of, or 

discriminated against in the receipt of health care services solely by reason of their 

disability. When HMOs enter a contract with state Medicaid agencies, they receive 

Federal funds to recruit and enter contracts with health care providers, design health 

care products for enrollee members, and act as an ongoing intermediary between 

providers and members. This is generally the case even if the HMO does not also 

directly operate hospitals and clinics and employ providers. HMOs purport to offer 

certain levels of health care services and provider choice to their members. If any 

enrollee cannot actually receive those services or choices because an HMO’s provider 

network is riddled with architectural or programmatic barriers, then the HMO is in 

violation of Section 504. As recipients of Federal funding, state Medicaid agencies and 

HMOs have a responsibility under Section 504 to notify enrollees with disabilities of their 

Federal accessibility rights, as well as the right to auxiliary aids where necessary for 

effective notice or to provide equal benefit from the service in question.263 Neither state 

Medicaid agencies nor HMOs that receive Federal financial assistance should be 

allowed to disregard their own, generally greater, financial and administrative capacity 

to set policies and procedures that will inform, provide incentives, monitor, and enforce 

accessibility requirements among the providers that deliver health care services.264

B. Conclusion and Recommendations 

Lawsuits are limited in their impact and can cost plaintiffs time, effort, and peace of mind 

to a degree that can affect their own health. In addition, they need attorneys conversant 

with disability nondiscrimination law, but far more negligence legal expertise is 

commonly available than disability nondiscrimination expertise. Also, most medical 

providers are far more aware of their obligations and the potential for liability under 

negligence and tort law than under Section 504 or the ADA. 

106 
Ultimately ADA and Section 504 lawsuits and settlements are an important component 

of the systemic health care reform to achieve accessibility, and disability rights 

advocates and attorneys must continue to bring high-impact litigation that will bring 

about change in the greatest numbers of providers at the ground level. These efforts 

must be supported through additional legislative, policy, and institutional reform. This is 

particularly true in such forward-looking areas of policy as investigations into health 

disparities, evidence-based health care quality standard setting, and the linkages 

between health and various environmental factors, such as socioeconomic status and 

the built environment. Discoveries made through innovative cross-disciplinary research 

and public health and policy discussion are leading the way, rather than lawsuits. This is 

why disability as a demographic factor, and people with disabilities as an affected 

population, must be included in the discussion. 

RECOMMENDATION:

Congress should direct the Department of Health and Human Services (HHS) to 

identify performance standards that must be included as a condition of receiving 

Federal financial assistance to ensure that states, health plans, managed care 

organizations, and health care providers who receive Federal health care funds 

under Medicaid, the State Children’s Health Insurance Program (SCHIP), and 

other Federal programs that pay for health care for people with disabilities meet the 

minimum requirements of the Americans with Disabilities Act (ADA) and Section 

504 of the Rehabilitation Act, and that they possess sufficient cultural competency 

to provide effective health care to people with disabilities. 

RECOMMENDATION:

The Department of Health and Human Services (HHS), the U.S. Department of 

Justice (DOJ), the Centers for Medicare & Medicaid Services (CMS), and the U.S. 

Access Board should enter into an interagency agreement to identify and adopt 

performance standards to ensure that states, health plans, managed care 

organizations, and health care providers who receive Federal health care funds 

under Medicaid, the State Children’s Health Insurance Program (SCHIP), and 

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other federally funded health care programs meet the minimum requirements of the 

Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, 

and that they possess sufficient cultural competency to provide effective health 

care for people with disabilities. Such methods could include a Federal contractual 

requirement that states, health plans, and providers collect and submit data 

concerning architectural and programmatic accessibility, capacity to accommodate 

patients with disabilities, and a showing of cultural competency and disability 

awareness. Such a contractual obligation should also include regular monitoring 

mechanisms. 

RECOMMENDATION:

States should develop mechanisms whereby health insurers, managed care 

organizations, and other health plans provide assurances that the health care 

providers (for example, hospitals, clinics, diagnostic centers, provider offices, and 

laboratories) with whom they contract for Medicaid and other federally funded 

health care services provide physical and programmatic access for people with 

disabilities. Such mechanisms could include annual physical and programmatic 

access surveys of providers and adherence to other performance standards that 

would be required in order to renew health service delivery contracts. Failure to 

provide the required information to appropriate state agencies should result in 

contract termination. 

RECOMMENDATION:

The Department of Justice (DOJ) must step up monitoring and enforcement of the 

Americans with Disabilities Act (ADA) and Section 504 of the 1973 Rehabilitation 

Act for health care facilities and programs. DOJ must focus additional resources on 

compliance monitoring and investigation of Title III complaints concerning 

programmatic access violations of the ADA and Section 504 by health care 

providers. 

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CHAPTER 3. Legal and Administrative Framework for 

Health Care and Health Disparities 

Programs and Research 

This chapter summarizes key Federal laws that govern, or are relevant to, the health 

care provided to people with disabilities in the United States. Some of the legislation 

outlined below is included because it enacts programs such as Medicaid and Medicare 

that serve significant numbers of people with disabilities or people with such specific 

disabilities as developmental disabilities. Other laws are included because they relate to 

the Federal Government’s relatively recent and ongoing research on, and response to, 

the existence of health and health care disparities among specified population groups. 

Health disparities legislation currently includes people with disabilities as a health 

disparity population to only a limited extent. This chapter suggests reasons for fully 

including people with disabilities in the nation’s ongoing effort to combat health and 

health care disparities. The chapter concludes with recommendations for reform. 

A. Social Security Act 

1. Medicaid 

Medicaid is a Federal initiative that was created through the Social Security 

Amendments Act of 1965265 to provide acute and long-term health coverage to lowincome Americans of any age. Medicaid’s authorizing and controlling legislation 

comprises Title XIX of the Social Security Act and is overseen federally by the Centers 

for Medicare & Medicaid Services (CMS), an agency in the U.S. Department of Health 

and Human Services (HHS). The program began as a collaborative venture between 

the Federal and state governments (including the District of Columbia and U.S. 

territories) to jointly fund health care for individuals and families with low incomes and 

resources. In 1972, Congress linked Medicaid to the creation of the Federal 

Supplemental Security Income (SSI) program. Thereafter, SSI coverage (at 

approximately 74 percent of the Federal poverty level, or FPL) became the minimum 

national income floor for Medicaid eligibility. Before this, many states had set lower 

income levels for Medicaid eligibility. 

109 
The Medicaid program offers states the flexibility to expand their Medicaid coverage 

beyond the Federal minimum eligibility levels, and all states have extended Medicaid 

coverage through “medically needy” or “special low income” options to the elderly and 

people with disabilities beyond minimum program levels. Medicaid has now grown to 

encompass over 58 million Americans, including 8 million persons with disabilities who 

generally lack any other source of health insurance or care, and 6 million low-income 

frail, elderly, and disabled Medicare beneficiaries who depend on Medicaid to fill in the 

gaps left by Medicare coverage.266 The program has become the “largest single source 

of health insurance and long-term care and the largest source of public financial support 

for people with disabilities.”267

To receive matching Federal funds, states must provide certain mandatory services 

under Medicaid, such as physician and hospital services, laboratory and diagnostic 

testing, and nursing facility services.268 Other services, such as prescription drugs, 

personal care, and home and community-based long-term care, are optional, and 

individual states vary considerably in the degree to which they will cover such services 

and how eligibility is established.269 The category of “medical supplies, equipment and 

appliances suitable for use in the home” is a mandatory home health service benefit, but 

a state can establish reasonable standards under the Medicaid statute and set limits on 

coverage based on such factors as “medical necessity” or “utilization control.”270 The 

distinction between mandatory and optional services can be particularly important for 

people with disabilities, because many optional services can be critical to maintaining 

health and the ability to function in the community. Significant variance in what states 

cover, their scope of coverage, and their eligibility standards for coverage create gaps 

and complications in service for people with disabilities across the country. 

Medicaid’s importance to a critical core population of low-income individuals with the 

most complicated chronic health needs cannot be overstated. Seniors and people with 

disabilities comprise 24 percent of all Medicaid enrollees, but account for 70 percent of 

program spending.271 Eleven percent of all enrollees with disabilities incur annual costs 

over $25,000 and account for 61 percent of all expenditures on people with 

110 
disabilities.272 The 1.2 million Medicaid enrollees who use long-term services and 

supports account for 58 percent of all Medicaid spending on people with disabilities. 

One-quarter of this group used institutional care and averaged total per person 

spending of $76,331, while three-quarters of the group averaged total per person 

spending of $35,930 for community-based services.273 These figures can be compared 

with total per person spending of $6,277 on enrollees who received little or no long-term 

care services. For the 7 million low-income Medicare recipients with chronic health 

needs who are “dual eligible” for Medicaid coverage, the latter program “is the only 

source of financial assistance with long-term care within the community and in 

institutional settings.”274 

The majority of Medicaid enrollees with disabilities live in the community and require 

access to Medicaid providers, clinics, and hospitals through either fee-for-service 

arrangements or managed care. For these enrollees, structural inaccessibility and 

programmatic barriers275 have as detrimental an impact on health care quality as 

coverage gaps and financial barriers. Regulations enacted under Title XIX place 

ultimate responsibility for access to health care with the states. Each state is required to 

have a state Medicaid plan that “must ensure that all services covered under the State 

plan are available and accessible to enrollees of MCOs [managed care organizations], 

PIHPs [prepaid inpatient health plans], and PAHPs [prepaid ambulatory health 

plans].”276 While the regulations do not go into detail about what access requires,277 it is 

arguable that state Medicaid agencies receive matching Federal monies under an 

obligation to ensure that all Medicaid enrollees, including enrollees with disabilities, 

receive equal access to all aspects of the health care delivery system. A state’s 

tolerance of structural and programmatic barriers in the multiple levels of its health care 

system is an ongoing violation of the Medicaid program and greatly contributes to the 

health care disparities endured by people with disabilities. These levels range from 

Medicaid enrollment to the making of appointments to the actual examination, including 

the failure to monitor or gather information about the extent of these problems. 

111 
2. Medicare 

The Social Security Amendments Act of 1965278 also established Medicare, a Federal 

health insurance program intended to provide for the medical needs of Americans aged 

65 and older, regardless of their income/asset levels and medical history. In 1972, 

Medicare was expanded to include coverage of people with permanent disabilities 

under the age of 65 who received Social Security Disability Insurance (SSDI).279 CMS is 

the Federal agency that now administers Medicare. The Medicare program is legislated 

as Title XVIII of the Social Security Act; in 2007, the program included 7 million people 

with disabilities under age 65—about 15 percent of the total of almost 44 million 

Medicaid enrollees.280 This subgroup of 7 million younger people with disabilities tends 

to have relatively high rates of health problems and lower incomes than other enrollees: 

almost two-thirds live on incomes below twice the FPL, and 40 percent are dual eligible 

for both Medicare and Medicaid.281 Among all Medicaid beneficiaries, 36 percent live 

with three or more chronic health conditions such as hypertension or arthritis, 

29 percent have a cognitive or mental impairment that limits their ability to function 

independently, and 16 percent have functional limitations in activities of daily living such 

as eating or bathing.282

The Medicare program is structured in four parts. Part A is known as the Hospital 

Insurance program and covers inpatient hospital services and care at skilled nursing 

facilities, home health care, and hospice care. Part B, known as “Supplementary 

Medical Insurance,” is voluntary, requires payment of beneficiary premiums, and covers 

physician, outpatient, home health, and preventive services, including diagnostic 

screenings and imaging such as mammography and durable medical equipment such 

as wheelchairs and ventilators. 

Part C, the “Medicare Advantage Program,” was created in the 1970s; it enables 

Medicare enrollees to sign up with and receive Medicare-covered benefits through 

private health plans. These plans can take a variety of forms,283 are paid by the Federal 

Government, and are obligated to use any gains between the amount received and their 

costs to reduce premiums or improve the benefits they offer. If these private plans offer 

112 
such supplemental benefits as vision or dental care beyond Medicare benefits, they are 

allowed to charge enrollees a supplemental premium. In recent years, the number of 

both enrollees and private plans in Part C has rapidly increased, with enrollees growing 

from 5.3 million in 2003 to 8.3 million in January 2007. However, this growth has been 

uneven across the states. In 2006, the four states of Alaska, Maine, New Hampshire, 

and Vermont had less than 1 percent of their Medicare beneficiaries enrolled in Part C, 

while half of all Medicare Advantage enrollees nationally live in the five states of 

Arizona, California, Florida, New York, and Pennsylvania.284 Medicare enrollees are 

eligible for coverage under Part C if they are entitled to benefits under Part A and are 

also enrolled in Part B. 

Part D, known as the Outpatient Prescription Drug Benefit of Medicare, was initiated in 

2006 under the Medicare Modernization Act of 2003.285 In return for premium 

payments, Part D provides enrollees with a “standard benefit” through either a Part C

Medicare Advantage drug plan or a stand-alone prescription drug plan. Medicare 

enrollees are eligible for coverage under Part D if they are either entitled to benefits 

under Part A or are enrolled in Part B. 

Many people with disabilities, both older and younger than 65 years of age, rely on 

Medicare. However, the program contains significant gaps in coverage benefits for 

items or services that can be both expensive and particularly important for maintaining 

function and independence. For instance, Medicare does not pay for long-term care 

services at home or in an institution, routine dental care or dentures, routine vision care 

or eyeglasses, or hearing exams hearing aids. These notable gaps in coverage may 

result in significant out-of-pocket expenses to meet medical, equipment, and long-term 

care needs for some people with disabilities.286 Another serious gap involves people 

who become disabled before age 65. They must wait 2 years after they establish 

eligibility for SSDI before they can receive Medicare coverage, a period during which 

many do not have any insurance coverage. 

Part D enrollees also face gaps in terms of both coverage and payments. The private 

plans that participate in Part D vary widely in terms of their formularies (list of covered 

113 
drugs), placement of drugs on certain tiers within the formulary, monthly premium 

charges, cost-sharing requirements, and cost-management tools (for example, the 

imposition of prior authorization requirements). In addition, Part D’s “standard benefit” 

provides an initial coverage limit of $2,400 in total drug costs, followed by a coverage 

gap until total drug costs reach $5,451. This means that enrollees with over $2,400 in 

total prescription drug costs must spend $3,850 out of pocket (not counting premiums) 

until they reach the point at which Medicare again kicks in, at which time the enrollee 

pays either 5 percent of the drug cost or a copayment.287 In 2006, an estimated 

4 million Medicare beneficiaries were forced to pay for their prescription drugs wh

they reached this coverage g

en 

ap. 

Just as for Medicaid enrollees with disabilities, Medicare enrollees with disabilities face 

structural and programmatic barriers in addition to the administrative and financial 

barriers that confront all Medicare enrollees. Because CMS and the Federal 

Government bear direct responsibility for the Medicare program, and CMS is part of 

HHS, Medicare is undeniably a federally conducted program or activity that is subject to 

Section 504 of the Rehabilitation Act of 1973.288 Both Section 504’s prohibition against 

disability discrimination and the detailed HHS regulations enacted under Section 504289

require that no qualified person with a disability be excluded from participation in or 

denied the benefits of Medicare services, programs, or activities. CMS and HHS retain 

control over Medicare, and these agencies should ultimately be responsible for ensuring 

that all components of Medicare—from enrollment to architectural access to practices, 

policies, and procedures in hospitals, provider offices, and pharmacies—are accessible 

for enrollees with disabilities.

3. State Children’s Health Insurance Program (SCHIP) 

SCHIP was enacted through the Balanced Budget Act of 1997290 as Title XXI of the 

Social Security Act; it was the largest single expansion of public health insurance 

coverage since the creation of Medicaid and Medicare in 1965. Like Medicaid, SCHIP is 

a collaborative partnership between the Federal Government and all 50 states, five 

territories, and the District of Columbia. CMS has Federal oversight authority over all 

114 
SCHIP programs, activities, and expenditures. When first enacted, SCHIP was aimed 

specifically at providing health insurance coverage for more than 10 million uninsured 

low-income children under age 19 who were not eligible for Medicaid, primarily because 

their family incomes were above Medicaid eligibility limits. Most of these children lived in 

families with incomes that were below twice the FPL, in which at least one parent 

worked full or part time but for whom employee health insurance was either unavailable 

or unaffordable.291 While much smaller in scale than either Medicaid or Medicare, 

SCHIP’s enactment was accompanied by substantial state outreach efforts that resulted 

in significant enrollment of eligible children in Medicaid.292 SCHIP served 6.6 million 

children in 2006. 

Title XXI was meant to give individual states flexibility to design a program that would 

effectively reach and provide health insurance for uninsured children. It therefore gave 

states three options for using their SCHIP funds. States could expand their existing 

Medicaid programs by covering SCHIP children, create a separate child health 

insurance program with a benefit package that differed from Medicaid, or combine those 

two options. States that choose to expand Medicaid must offer the full Medicaid benefit 

package and are required to follow Medicaid’s cost-sharing rules.293 States that choose 

to offer a separate SCHIP program are generally required to cover primary and 

preventive health benefits such as immunizations, well-baby and well-child care, and 

emergency services.294 Separate SCHIP programs generally can impose limited costsharing and no more than $5 copayments for provider visits for families that are below 

150 percent of FPL. For families with incomes above 150 percent FPL, these separate 

programs may not exceed 5 percent of the family’s annual income for any cost-sharing 

charge. 

Each state laid out its plans for SCHIP funds, including information on the benefit 

package, cost-sharing, and eligibility standards, in the initial applications and must 

receive CMS approval before amending its plan. Unlike Medicaid, SCHIP is a finite 

block grant. The Federal funds set aside for SCHIP were capped at 40 billion from 1997 

through 2007. Thus, the states can cap enrollment when they run out of funds, even if 

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they are not covering children who otherwise meet all program eligibility requirements. 

In 2007, the matching Federal fund rate for SCHIP program costs ranged from 

65 percent to 83 percent.295

It is difficult to say how many children with disabilities are covered under SCHIP, 

because there is no requirement on state programs to collect or maintain this 

information. In comparing the relative importance of Medicaid and SCHIP to children 

with disabilities, the National Association of Children’s Hospitals stated: 

SCHIP children generally have higher incomes and less serious health care 

needs than children on Medicaid. Medicaid is the primary source of health 

coverage for low-income children with disabilities; 7 of 10 children with severe 

disabilities below the Federal poverty level receive Medicaid benefits.296 

Nonetheless, SCHIP clearly provides critical assistance to eligible families that include 

children with disabilities, even if the benefit package is less than that provided under 

Medicaid or enrolled children have less complex health needs. These are families that 

essentially have no other source of health insurance, and this assistance is arguably 

more precarious than a Medicaid entitlement because of SCHIP’s block grant status. 

SCHIP’s reauthorization was required in 2007, but Congress and the Administration 

failed to reach agreement on a reauthorization. President Bush vetoed a compromise 

bipartisan bill that would have expanded SCHIP coverage to 3.8 uninsured children. In 

December 2007, Congress passed S. 2499, which extended SCHIP authorization 

through March 2009 and appropriated sufficient funds to maintain the program at 

current levels. The bill did not address CMS’s August 2007 directive against states’ 

expansion of SCHIP coverage for families above 250 percent of FPL ($43,000 for a 

family of three in 2007) without proof that 95 percent of children in families with income 

below 200 percent of FPL were already enrolled.297 This is particularly significant in light 

of findings such as those of the 2008 University of North Carolina study, in which 

researchers found “chilling” rates of hardship among poor, middle-class, and even 

upper-income families with disabled children as they struggled “to keep food on the 

table, a roof over their heads, and to pay for needed health and dental care.”298 The 

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study found that 40 percent of the families surveyed who earned between $36,200 and 

$54,300 for a family of four and had a child with a disability experienced at least one 

food hardship, including concerns that food would run out or missed meals because of a 

lack of money.299

4. Maternal and Child Health Block Grant 

Title V of the Social Security Act, which provides the basis for federally funded public 

health programs, was first enacted as a Federal-state partnership in 1935, when the 

Social Security Act was initially passed. In 1981, Congress converted the Title V 

program to a block grant300 and consolidated seven categorical programs into the 

Maternal and Child Health Services Block Grant (MCH Block Grant), as Title V is now 

known. Further amendments enacted in 1989 imposed stricter state planning and 

reporting requirements and funding criteria.301 The MCH Block Grant is federally 

administered by the Maternal and Child Health Bureau (MCHB) under the Health 

Resources and Services Administration (HRSA) within HHS. 

Title V continues to be a Federal and state matching program—every $4 provided by 

the Federal Government for the program must be matched by $3 of state funds.302 Most 

of the Federal appropriations for the MCH Block Grant (approximately 85 percent) are 

awarded to state health agencies, mainly on the basis of the number of children in 

poverty in the state relative to the total number of children in poverty nationally. The 

remaining 15 percent supports discretionary grants awarded by MCHB for Special 

Projects of Regional and National Significance (SPRANS). SPRANS grants generally 

support the continuation of certain categorical programs in such areas as genetic 

disease testing, counseling and information dissemination, and MCH research and 

training.303

Title V is intended to provide comprehensive services for mothers and children. MCHB 

describes Title V as the only Federal program that consistently provides all four possible 

levels of services: (1) direct health care; (2) enabling services such as transportation, 

translation, and health education; (3) preventive services such as newborn screening, 

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immunization, and oral health; and (4) infrastructure-building services such as needs 

assessment, policy development, and information systems support.304 One national 

grassroots organization of families of children with disabilities reports that Title V state 

programs operated a clinic-based system of care that has recently been turning more 

toward care coordination services, though some state programs still provide direct 

clinical services, usually in collaboration with Medicaid and private insurance.305 

Title V allows billing of patients for services on a sliding scale on the basis of income. 

Many services are provided free of charge, unless the patient has Medicaid or private 

insurance. States may set the types of services that they provide and set eligibility, 

resulting in a wide variety of benefits and eligibility criteria across states in MCH Block 

Grant programs. States that receive Title V funds are subject to detailed annual 

reporting requirements. States must document how many children in the state have 

special health needs and how services will be received, along with infant mortality and 

child and maternal health statistics according to such categories as county, race, and 

ethnic group.306 The Secretary of HHS is to compile this information nationally and by 

state, for annual transmission to Senate and House of Representatives committees. 

Like enrollees in Medicaid and the other federally funded programs described above, 

children with disabilities who receive services under Title V encounter a variety of 

structural and programmatic barriers to health care access and are entitled to coverage 

under Section 504 of the Rehabilitation Act. Title V also contains a specific reference to 

nondiscrimination that expressly incorporates Section 504 and states that “programs 

and activities funded in whole or in part with funds made available under this title are 

considered to be programs and activities receiving Federal financial assistance.”307 The 

Secretary of HHS is authorized to request compliance with Title V’s nondiscrimination 

provision from any state’s chief executive officer and to refer the matter to the U.S. 

Attorney General for a civil action. The logical next step is to link a state’s responsibility 

for ensuring nondiscrimination in its Title V programs with the state’s existing reporting 

requirements. For example, currently required information on the number of maternal 

and child-health-related providers licensed in the state in a year could incorporate 

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information on the degree to which those providers have received training in the 

accessibility needs of children with disabilities. Currently required information on the 

proportion of women who did not receive prenatal care during the first trimester of 

pregnancy could include information on whether the mother had a disability, as well as 

on her racial and ethnic origin. Indicators specific to the structural and programmatic 

accessibility of maternal and child care providers in Title V programs could be 

systematically incorporated in annual audits. 

B. Developmental Disabilities Assistance and Bill of Rights Act of 2000 

The Developmental Disabilities Assistance and Bill of Rights Act308 (DD Act) has its 

genesis in the much older Mental Retardation Facilities and Community Health Centers 

Construction Act of 1963, the first legislation to address the recognized needs of a 

group of people with disabilities designated as developmentally disabled. Currently, the 

act is administered by the Administration on Developmental Disabilities (ADD), which is 

part of the HHS Administration for Children and Families. The law today remains the 

main route by which grant monies are used to improve the lives of people with 

developmental disabilities, but a series of amendments over the past four decades 

reflects a modified focus from service delivery and demonstration to public policy 

advocacy, mirroring the social and political changes that prompted the development and 

enactment of more recent Federal disability rights laws such as the Americans with 

Disabilities Act (ADA). In 1999, Congress made a number of findings under the DD Act 

that are significant for health care delivery.309

● People with developmental disabilities often encounter discrimination in the 

provision of critical services and are at greater risk than the general population 

for abuse, neglect, financial and sexual exploitation, and legal and human rights 

violations. 

● Many service delivery systems and communities are unprepared to meet the 

needs of the 479,862 adults with developmental disabilities living at home, for 

whom the primary caregiver is a parent (or parents) who are 60 years or older. 

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● Eighty-eight percent of persons with developmental disabilities live with their 

families or in their own households, and there is a critical need for a well-trained 

workforce that can provide appropriate services, supports, and other forms of 

direct assistance to enable people with developmental disabilities to continue 

living, learning, working, and participating in their communities. 

● Many people with developmental disabilities and their families do not have 

access to appropriate support and services such as access to assistive 

technology, and so are either underserved or not served at all. 

● Services, supports, and other assistance should be provided in a culturally 

competent manner that fully includes individuals from racial and ethnic minority 

backgrounds in the activities provided under the law. 

The DD Act’s four distinct grant programs are intended to ensure that “individuals with 

developmental disabilities and their families participate in the design of and have access 

to needed community services, individualized supports, and other forms of assistance 

that promote self-determination, independence, productivity, and integration and 

inclusion in all facets of community life, through culturally competent programs.”310

Grantees are required to work with state governments, local communities, and the 

private sector, and grants are used to fund activities in one of eight areas of emphasis: 

quality assurance, education and early intervention, child care, health, employment, 

housing, transportation, and recreation activities.311 The four grant programs currently 

consist of the State Councils on Developmental Disabilities (SCDDs), the state 

Protection and Advocacy (P&A) systems,312 the University Centers for Excellence in 

Developmental Disabilities (UCEDDs), and Projects of National Significance (PNSs). 

These four programs overlap to some extent and are intended to support one another, 

but the P&A systems and the UCEDDs are most likely to provide direct services to 

people with developmental disabilities and their families. The P&A systems provide 

administrative and legal information, referral, investigation, and representation to people 

with developmental disabilities on their civil and human rights. The UCEDDs provide 

community services such as training or technical assistance to people with disabilities, 

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their families, professional and paraprofessional service providers, students, and other 

community members, and may provide services, supports, and assistance through 

demonstration and model activities. The UCEDDs also have a broad research mandate 

to conduct basic or applied research, evaluation, and public policy analyses in “areas 

that affect or could affect . . . individuals with developmental disabilities and their 

families,”313 and to disseminate information about their activities and any areas of 

substantive expertise. The UCEDDs also provide coordinated and multidisciplinary 

direct health care. 

The UCEDDs were formerly known as University Affiliated Programs (UAPs) but were 

renamed in the 2000 DD Act. A few specific subsections in the existing regulations are 

worth noting, as they relate to health care accessibility for people with developmental 

disabilities and disabilities in general.314 The ADA is mentioned twice in the regulation 

on governance and administration of the UAPs. First, “UAP faculty and staff must 

represent the broad range of disciplines and backgrounds necessary to implement the 

full inclusion of individuals with developmental disabilities in all aspects of society, 

consonant with the Americans with Disabilities Act.”315 Second, and more significantly, 

“[t]he UAP physical facility and all program initiatives conducted by the UAP must be 

accessible to individuals with disabilities as provided for by section 504 of the 

Rehabilitation Act and Titles II and III of the Americans with Disabilities Act.”316 Because 

the UAPs/UCEDDs are federally funded, as well as associated with universities that are 

either Title II or Title III entities under the ADA, they are already subject to Section 504’s 

mandate of nondiscrimination and either Title II or III. Nevertheless, the regulations’ 

mandate to comply with Section 504 and ADA accessibility requirements strengthens 

any kind of self-advocacy action or complaint brought directly against a UAP with 

inaccessible facilities or program initiatives. Additional measures of accountability for 

UAP accessibility result from the UAP’s obligation to maintain collaborative relations 

with the state P&A agency and SCDD317 and to solicit the active participation of 

consumers of UAP services and programs to evaluate its programs.318

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UAPs are explicitly directed to make a difference in their university homes, to consider 

the needs of the developmental disabilities community, and to work with the community, 

agencies, and advocacy organizations. UAPs are to “influence University curriculums to 

prepare personnel who, in their future career in a broad range of social and community 

roles, will contribute to the accommodation and inclusion of individuals with 

developmental disabilities, as mandated in the Americans with Disabilities Act.”319 The 

UAP system interventions must be collaboratively planned with people with 

developmental disabilities and their families320 and, where direct services are offered, 

“must integrate direct services and projects into community settings,” “include adult and 

elderly individuals with developmental disabilities” as appropriate, “maintain cooperative 

relationships with other community service providers,” and “interact with and involve 

community members, agencies, and organizations.”321 Finally, UAPs are to “produce a 

variety of products to promote public awareness and visibility of the UAP, and facilitate 

replication of best practices,”322 use the input of people with developmental disabilities 

and their families,323 and make materials “available in formats accessible to individuals 

with a wide range of disabilities.”324

The UAPs/UCEDDs serve as models because they have been consistently funded for 

more than four decades and were thoughtfully embedded within a network of grant 

programs that address technical assistance, community and provider training, diversity 

in higher education, administrative and legal enforcement, and builds in collaboration 

among all the programs. Accessible health care is recognized as one of the key 

elements through which people with developmental disabilities will achieve “increased 

independence, productivity, inclusion, and community integration.” It could be argued 

that UCEDDs and the DD Act are directed toward a specific population of people with 

developmental disabilities and therefore need to be physically and programmatically 

accessible to this population. The UCEDDs should place special emphasis on 

accessibility because they serve a population with specialized needs. 

On the other hand, accessible health care is necessary not only to the numerous people 

with a variety of disabilities—and seniors, who often develop disabilities as they age—

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but to every person, because one’s health is always in flux. The directives, institutional 

programs, and accountability measures in the DD Act illustrate much of what needs to 

be in place to achieve universally designed and accessible health care. 

C. Title IX of the Public Health Service Act, As Added by Public 

Law 106-129 

Title IX of the Public Health Service Act establishes the Agency for Healthcare 

Research and Quality (AHRQ) and its mission and duties. Essentially, AHRQ is “the 

lead Federal agency charged with improving the quality, safety, efficiency, and 

effectiveness of health care for all Americans,”325 primarily through supporting health 

services research. Approximately 80 percent of the AHRQ annual budget is invested in 

grants and contracts with research institutions and organizations focused on improving 

some aspect of health care delivery or evidence-based decision making.326 Title XI 

authorizes the AHRQ Director to gather information on the quality and cost of health 

care, primarily in the form of a nationally representative survey on the cost, utilization, 

and quality of health care, including the following: 

their access to health care services, frequency of use, how much is paid for the 

services used, the source of those payments, the types and costs of private 

health insurance, access, satisfaction, and quality of care for the general 

population, including rural residents and also for populations identified [as 

“priority populations”].327

Other than this admittedly important task of statistical information gathering, Title XI 

does not address in any way the monitoring of individual access to health care or the 

enforcement of nondiscrimination rights; even systemic standard setting is outside the 

AHRQ mandate. The agency’s legislative authorization explicitly states that AHRQ 

“shall not mandate national standards of clinical practice or quality health care 

standards. Recommendations resulting from projects funded and published by the 

Agency shall include a corresponding disclaimer.” Moreover, nothing in AHRQ’s 

responsibilities “shall be construed to imply that the Agency’s role is to mandate a 

national standard or specific approach to quality measurement and reporting.”328 In 

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common parlance, Title XI does not take a carrot-and-stick approach to systemic 

improvement; it simply encourages research that is intended to lead to systemic 

improvement. 

AHRQ’s very limited ability to implement or enforce necessary change or establish 

binding standards for improving health care quality is somewhat dismaying given that, 

among the 12 HHS agencies, AHRQ has the broadest and most systemic mandate with 

regard to people with disabilities. The AHRQ Director is specifically charged to conduct 

and support research and develop evaluations, including demonstration projects, with 

respect to “health care for priority populations, which shall include (1) low-income 

groups; (2) minority groups; (3) women; (4) children; (5) the elderly; and (6) individuals 

with special health care needs, including individuals with disabilities and individuals who 

need chronic care or end-of-life health care.”329 People with disabilities fall squarely 

within the AHRQ mandate because they are explicitly recognized as a priority 

population. 

AHRQ is further charged with establishing an Office of Priority Populations to help 

conduct and support research to gather scientific evidence regarding “all aspects of 

health care,” including the enhancement of patient participation, cost-effectiveness, 

innovative technologies, access, quality measurement, best practice dissemination, and 

how health care organization and financing affects the quality of patient care.330 Many 

of these aspects of health care quality are vitally important to people with disabilities. 

For example, people with a variety of disabilities find themselves unable to gain access

to innovative diagnostic and imaging technologies because they are not universall

designed. Many people with disabilities rely on items of durable medical equipment or 

communication technologies that are increasingly out of reach because of narrow public 

insurance interpretations of what is “medically necessary” and private insurance 

coverage limitations. 

y 

The AHRQ mandate includes the promotion of innovation in evidence-based health care 

practices and technologies by “conducting and supporting research on the 

development, diffusion, and use of health care technology” and “developing, evaluating, 

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and disseminating methodologies for assessments of health care practices and 

technologies.” The agency is also authorized to conduct and support specific 

assessments of existing and new health care practices and technologies.331 Such a 

broad mandate should be able to encompass research and assessment of the kinds of 

on-the-ground concerns with access to durable medical equipment and new and 

developing technologies that have a tremendous practical impact on access to health 

care for people with disabilities. Once again, however, there is the significant limitation 

that AHRQ’s discoveries are to be disseminated and potentially influential, but cannot 

mandate change. 

Overall, AHRQ is given an important role in assessing health care quality for people 

with disabilities, but it is a role that forms only a small part of an extremely broad 

mandate to research health care quality for all Americans. The agency is further 

charged with coordinating “all research, evaluations, and demonstrations related to 

health services research quality measurement and quality improvement activities 

undertaken and support by the Federal Government.”332 As a result, the agency must 

deal with an extremely fragmented Federal network of specialized services, research, 

and funding related to adults and children with disabilities. Finally, AHRQ has no 

authority to set binding standards or establish monitoring systems in relation to its 

research findings, no matter how clearly those findings signal a need for such standards 

or monitoring. Since AHRQ-conducted and -supported research findings and quality 

assessments do not place any kind of mandate on Federal or private entities, it would 

be difficult for any individual or group to use such findings to show that a standard of 

care has been established, much less violated. Nevertheless, if AHRQ promoted 

research that clearly identified the various barriers encountered by people with 

disabilities as a priority population when seeking health care, it could help advocates 

document a statistically accurate record of, for example, the extent to which health care 

technologies, facilities, and equipment remain inaccessible to people with disabilities333

and bolster efforts to effect change. 

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AHRQ was originally required to submit an annual report to Congress, beginning in 

2003, regarding “prevailing disparities in health care delivery as it relates to racial 

factors and socioeconomic factors in priority populations.”334 Even when Title IX was 

first enacted, the language and reference of health and health care disparities linked to 

racial and socioeconomic factors did not acknowledge the presence of disability itself as 

a demographic characteristic that could be linked to health and health care disparities. 

In any event, this requirement was struck a year later with the enactment of the Minority 

Health and Health Disparities Research and Education Act of 2000 (MHDREA). 

MHDREA added health care disparities generally to the AHRQ research and 

dissemination mandate, and simultaneously centralized a more specific and greater 

authority to research and address biomedical and behavioral factors relating to health 

disparities in a different Federal entity, the National Center on Minority Health and 

Health Disparities (NCMHD). The following section assesses the impact of this division. 

D. Minority Health and Health Disparities Research and Education Act 

of 2000 

The Minority Health and Health Disparities Research and Education Act of 2000 

(MHDREA)335 amends the Public Health Service Act (PHSA) to establish the National 

Center on Minority Health and Health Disparities (NCMHD) and expand the AHRQ 

research mandate to include the issue of health disparities. The new national center has 

its roots in the Office of Research on Minority Health (ORMH), created in 1990 by the 

NIH Director and formally established in the Office of the Director by the Health 

Revitalization Act of 1993.336 ORMH is the predecessor of NCHMD, and the 2000 law 

was prompted by the same underlying concern with “continuing disparities in the burden 

of illness and death experienced by African Americans, Hispanics, Native Americans, 

Alaska Natives, and Asian Pacific Islanders, compared with the United States 

population as a whole.”337 Under the act, NCMHD has two main purposes. First, it is to 

develop and support a national research agenda at NIH with respect to minority health 

conditions and other populations experiencing health disparities. Second, it is to 

promote and fund increased research capacity on health disparities in minority and 

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medically underserved communities, and to train students from minority and other 

health disparity groups in biomedical and bio-behavioral research careers. 

Under the act, a population is a “health disparity population” if “there is a significant 

disparity in the overall rate of disease incidence, prevalence, morbidity, mortality, or 

survival rates in the population as compared to the health status of the general 

population.”338 The NCHMD Director is to determine, after consultation with the AHRQ 

Director, whether a population fits these criteria; the Director is specifically required to 

give “priority consideration” to whether minority groups qualify as health disparity 

populations.339 This definition of a health disparity population poses something of a 

barrier to the inclusion of persons with disabilities, as it seems easiest for researchers to 

assume a common “healthy” or “zero disease” starting point for comparing a particular 

population group and the general population, even though people with disabilities could 

experience the described disparities in a way that is not directly attributable to the mere 

presence of disability. That is, a population group consisting of people who have 

disabilities or a particular disability could well have a higher overall incidence rate of 

secondary disease (for example, coronary heart disease or cancer), higher morbidity 

rates, or lower survival rates on diagnosis. These differences could be due to such 

factors as inappropriate clinical treatment, lack of preventive knowledge, adoption of risk 

behaviors, or systemic physical, programmatic, or cultural barriers that impede access 

to health care. These are among the factors that NCHMD could target when 

coordinating, planning, and budgeting NIH’s health disparities research on “the causes 

of such disparities and methods to prevent, diagnose, and treat such disparities.”340 

Research is needed for people with disabilities, just as it is for other demographically 

identifiable groups such as minorities. Unfortunately, however, a disability is often 

incorrectly assumed to determine a person’s general health status. NCMHD has rarely 

undertaken even basic research on the existence of health disparities in disease 

prevalence, morbidity, mortality, and survival rates for people with disabilities. The lack 

of such research may stem from the center’s need to establish the most straightforward 

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connection between a demographic characteristic, such as race, and evidence of 

significant health disparities. 

The definition of a health disparity population used by NCMHD contrasts distinctly with 

the expanded definition available to the AHRQ Director; the latter definition may include 

“populations for which there is a significant disparity in the quality, outcomes, cost, or 

use of health care services or access to, and satisfaction with, such services, as 

compared to the general population.”341 The AHRQ Director need not compare two 

groups that have the same overall starting health condition to establish a significant 

difference in the fact of disease, morbidity, or survival. Instead, the additional focus on 

health care quality, outcomes, and utilization, including access, provides an objective 

means for establishing a significant disparity that is not so tied to the amorphous 

concept of community or individual health status. However, even if the AHRQ Director 

included people with disabilities or specific disabilities in the definition of a health 

disparity population, the expansion would only hold true for AHRQ’s own mandate on 

health disparities research. The heart of the AHRQ mission is to conduct and support 

research and evaluate and disseminate research findings. AHRQ cannot require other 

agencies to investigate, prioritize, or budget for disparities research. The agency is 

required to support the development of quality health care measures for health disparity 

populations that will “assess the experience of such populations with health care 

systems” and “assess the access of such populations to health care,” but the agency 

cannot mandate the creation of such measures of their adoption once developed.342

These limitations on AHRQ’s mandate and authority mean that, even if people with 

disabilities are explicitly acknowledged as a health disparity population by the agency, 

this particular population group can continue to be excluded from NCMHD and NIH’s 

attention and research agenda. This agenda includes such tangible incentives for 

changing the status quo as awarding grants or contracts of up to 5 years to Centers of 

Excellence in biomedical and behavioral research training for members of health 

disparity populations343 and loan forgiveness programs of up to $35,000 a year for 

health professionals who agree to engage in health disparities research.344 If people 

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with disabilities as a group are seen as falling outside the ambit of NCMHD’s 

jurisdiction, they would also forgo the benefit of potential future congressional actions 

that could expand or build on the act’s capacity to require systemic health care 

monitoring and civil rights enforcement. 

One author who applauded the MHDREA as a first step toward reducing the 

institutionalized use of unscientific race-based research in clinical decision making for 

African Americans suggests that, in addition, “[i]f we are serious about invigorating Title 

VI enforcement, the cornerstone is the systemic collection of data from each health care 

provider that receives Federal funds on racial disparities in the use of services and the 

choices of diagnostic and therapeutic alternatives.”345 A 2007 proposed amendment to 

the MHDREA elaborates on this suggestion and requires the HHS Secretary to 

collaborate with the HHS Office of Civil Rights to (1) review cases filed with the Office of 

Civil Rights against health care providers that have been closed without a finding of 

discrimination to ensure that there is in fact no pattern or practice of activities that could 

lead to discrimination; (2) provide technical assistance or education to providers in 

particular geographic areas where such patterns or practices are identified; and (3) 

biannually publish the name and location of any entity that has had a finding of 

discrimination made against it by the Office of Civil Rights, including the office’s findings 

and any agreement entered into with the entity.346 This collaboration between the 

Secretary and the Office of Civil Rights is, however, tightly focused on discrimination 

and technical assistance related to racial and ethnic minority groups. No congressional 

proposal yet appears to suggest enforcement and monitoring for disability discrimination 

as well as racial or ethnic discrimination under MHDREA. While such information 

gathering about the structural and programmatic accessibility of provider offices and the 

enforcement of Section 504 of the Rehabilitation Act would not in itself turn the tide of 

pervasive health care inaccessibility, it could provide critical additional support for such 

a systemic sea change. 

Another notable feature of the MHDREA is that health disparities research is defined as 

“basic, clinical, and behavioral research on health disparity populations (including 

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individual members and communities of such populations) that relates to health 

disparities... including the causes of such disparities and methods to prevent, diagnose, 

and treat such disparities.”347 This concept of health disparities research is quite broadly 

worded, which is in accord with the congressional finding listed at the beginning of the 

act: “[b]ehavioral and social sciences research has increased awareness and 

understanding of factors associated with health care utilization and access, patient 

attitudes toward services, and risk and protective behaviors that affect health and 

illness. These factors have the potential to then be modified to help close the health 

disparities gap among ethnic minority populations.”348 Despite the potential breadth of 

NCHMD’s research under the act, the center’s online vision and mission statement 

clearly gives the impression that disparities caused by access issues fall outside 

NCHMD’s authority. 

Although some of the causes of disparate health outcomes such as differences 

in access to care, are beyond the scope of biomedical and bio-behavioral 

research, the National Institutes of Health (NIH) can play a vital role in 

addressing and easing health disparities involving cancer, diabetes, infant 

mortality, AIDS, cardiovascular illnesses, and many other diseases. 

Accordingly, the NIH has made health disparities a priority.349

The clear sense is that NCMHD is concerned only with health disparities linked to the 

initial acquisition of a disease, and much less with if and how health and function can be 

maintained when a disease or health condition has been acquired. Presumably AHRQ, 

with its far more limited authority, is left to investigate social and environmental factors 

relevant to health care disparities and health access, including those involving minority 

health disparity populations. 

Ultimately, these distinctions among health and health care disparities and the factors 

that contribute to disparities serve neither minority health disparity populations nor other 

populations. Scholars have noted and raised objections to the decontextualized “raceonly lens” of the MHDREA as one that offers only narrow explanations for racial 

disparities in health such as biological race, socioeconomic status, and personal 

responsibility, in effect foreclosing the analysis and addressing of issues of racism in 

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health care policy development.350 For people with disabilities, the traditional medical 

emphasis on genetic and biological determinism has always overshadowed 

investigation into issues of socioeconomic status and behavioral factors. While specific 

environmental issues related to physical and communication access barriers 

experienced by people with disabilities have increasingly risen to the surface in 

scholarly research, the MHDREA essentially confines the issue to AHRQ’s domain of 

health care quality assessment. 

There does not appear to be any Federal coordination or means of investigating how 

numerous factors such as socioeconomic status; environmental, financial, structural, 

and programmatic barriers; institutionalized prejudice; cultural and other communication 

issues; and biological and clinical factors interact together to create and maintain health 

disparities. The initiation of such an approach, across Federal agencies and sustained 

over time in terms of funding, would undoubtedly help establish the fact that people with 

disabilities experience health and health care disparities, and would better enable all 

demographic groups that experience such disparities, including minority populations, to 

unearth the causes of disparity and develop better health outcomes. 

E. Title II of the Rehabilitation Act of 1973 and the National Institute on 

Disability and Rehabilitation Research 

Unlike many agencies and organizations that have a disability-related research 

mandate, the National Institute on Disability and Rehabilitation Research (NIDRR) is 

authorized under the Rehabilitation Act of 1973, Title II,351 rather than the Public Health 

Service Act. NIDRR is not part of HHS but is located in the Office of Special Education 

and Rehabilitative Services (OSERS) in the U.S. Department of Education (ED). 

NIDRR’s mission is to conduct and coordinate research and related activities that will 

enable people with disabilities of all ages to maximize full inclusion, social integration, 

employment, and independent living, and to maximize society’s capacity to provide 

accommodations and equal opportunities for its citizens with disabilities. To that end, 

NIDRR’s research and development mandate includes health and function and also 

more broadly encompasses other key areas such as employment, participation and 

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community living, and assistive technology. NIDRR’s statutory authority requires 

dissemination of its research findings to people with disabilities and their families, 

private researchers, rehabilitation service providers, and all levels of Government and 

public entities; the promotion of technology transfer; increased opportunities for minority 

institutions and research with disabilities or from minority groups; and the provision of 

advanced training in disability and rehabilitation research. NIDRR has formed numerous 

partnerships with other Federal agencies, research institutions, and consumer 

organizations through its funding of various research projects,352 and the agency holds 

designated responsibility for chairing the Interagency Committee on Disability Research 

(ICDR). The ICDR is required to meet at least four times a year and has the goal of 

coordinating Federal rehabilitation and disability research, including research relating to 

assistive technology and the principles of universal design.353

F. Entities Created and Authorized Under the Public Health Service Act 

1. Health Centers 

The Health Resources and Services Administration (HRSA) is part of the Public Health 

Service and is authorized under the Public Health Service Act (PHSA). HRSA “is 

responsible for general health services, and it acts as a resource center with respect to 

issues of access, equity, quality, and cost of care.”354 In particular, HRSA supports 

states and communities in organizing and delivering preventive and primary health care 

services to underserved residents and specific groups, such as migrant workers and the 

homeless, by approving grants or contracts that fund health centers.355 Four different 

health center programs (two of which were initiated in the 1960s) were legislatively 

combined through the Health Centers Consolidation Act of 1996,356 although each 

health center continued to maintain its own distinct resource stream. The four programs 

originally served migrant farm workers, medically underserved populations living in 

urban and rural communities, homeless persons, and residents of public housing. 

These target populations have been maintained in the current definition of “health 

center” as “an entity that serves a population that is medically-underserved, or a special 

medically underserved population comprised of migratory and seasonal agricultural 

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workers, the homeless, and residents of public housing.”357 Health centers must 

provide, either directly or through contracts or cooperative arrangements, primary health 

services as defined in the PHSA and additional health services as appropriate for 

particular centers and necessary for the adequate support of the primary health 

services.358 In addition, community health centers must provide these services to all 

residents of the area served by the center.359 

Health centers are addressed here because substantial numbers of people with various 

disabilities are included in the four population groups served by these entities. This 

raises the issues of architectural and programmatic accessibility, and the question of 

whether people with disabilities could in fact be designated as a medically underserved 

population that receives health care services through new or existing health centers. 

On the first issue, the PHSA contains a specific provision that states that “programs and 

activities funded in whole or in part with funds made available under [preventive health 

and health services block grants] are considered to be programs and activities receiving 

Federal financial assistance” under nondiscrimination laws.360 Assuming that the health 

center funding grants constitute a preventive health or health service block grant, this 

means that Section 504 applies to the health centers, which are required to undertake 

reasonable architectural and programmatic modifications to ensure access for people 

with disabilities. Moreover, the PHSA’s own requirement that community health centers 

that serve medically underserved populations must provide health care services to “all 

residents of the area” also argues for barrier removal as a priority in these clinics. This 

is especially the case in rural areas that have few health care service options for 

residents with various disabilities. 

With regard to the second issue, PHSA has a relatively broad definition of “medically 

underserved population” as “the population of an urban or rural area designated by the 

Secretary as an area with a shortage of personal health services or a population group 

designated by the Secretary as having a shortage of such services.”361 In addition, the 

Secretary is to prescribe criteria for determining what it means to have specific 

shortages of personal health services and “include factors indicative of the health status 

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of a population group or residents of an area, the ability of the residents of an area or of 

a population group to pay for health services and their accessibility to them, and the 

availability of health professionals to residents of an area or to a population group.”362

While, as a group, people with disabilities experience lower health status, difficulty 

paying for health services, and shortages of available health professionals because of 

inaccessibility, these experiences are not necessarily linked to geography in the way 

that PHSA seems to contemplate. Nonetheless, pursuing the inclusion of people with 

disabilities as a medically underserved population is an idea worth further exploration. 

2. Substance Abuse and Mental Health Services Administration 

Section 290aa of the Public Health Service Act (PHSA) established SAMHSA as an 

agency of the Public Health Service.363 SAMHSA is made up of three centers that deal 

respectively with substance abuse treatment, substance abuse prevention, and mental 

health services.364 A presidentially appointed SAMHSA administrator supervises and 

appropriately supports the implementation of each center’s programs, which are 

primarily carried out through grants, cooperative agreements, and contracts with 

appropriated funds. Through the centers, SAMHSA is required to establish and 

implement “a comprehensive program to improve the provision of treatment and related 

services to individuals with respect to substance abuse and mental illness, and to 

improve prevention services, promote mental health, and protect the legal rights of 

individuals with mental illnesses and individuals who are substance abusers.”365

SAMHSA’s specific tasks include conducting and coordinating demonstration projects, 

evaluations, and other activities to improve the availability and quality of treatment, 

prevention, and related services; disseminating knowledge and public information 

related to substance abuse and mental health; and coordinating with other Federal 

agencies, including NIH, CDC, and AHRQ concerning HIV and tuberculosis prevention 

and the community impact of treatment and prevention services.366 The administrator of 

SAMHSA is required to report biennially report to House and Senate committees 

concerning the agency’s activities.367

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Beyond the fact that SAMHSA’s programs are meant to serve specific groups that can 

be characterized as having disabilities, the agency’s enabling legislation says nothing 

about the need for or provision of substance abuse or mental health services among 

people with disabilities in general. For instance, there is a specific provision that calls on 

the administrator to ensure “that services provided with amounts appropriated under this 

subchapter are provided bilingually, if appropriate”368 but no similar direction regarding 

sign language, alternative communication formats, or physical accessibility. Such 

access requirements could nevertheless be implied if SAMHSA grants are considered 

Federal financial aid under Section 504. There is also a specific directive to work with 

the National Institutes on Aging, Drug Abuse, Alcohol Abuse and Alcoholism, and 

Mental Health to “promote and evaluate substance abuse services for older Americans 

in need of such services, and mental health services for older Americans who are 

seriously mentally ill.”369 Such a directive concerning people with disabilities would help 

to highlight the substance abuse treatment and mental health needs of people with 

various disabilities. 

The SAMHSA legislation’s silence on disability status or access can be contrasted with 

subsections devoted to the establishment of an associate administrator and an Advisory 

Committee for Women’s Services.370 One duty of the associate administrator and the 

committee is to ensure “that the unique needs of minority women, including Native 

American, Hispanic, African American and Asian women, are recognized and 

addressed” in SAMHSA’s activities.371 For the purposes of these subsections, “women’s 

substance abuse and mental health conditions, with respect to women of all age, ethnic, 

and racial groups,” means all aspects of substance abuse and mental illness that are (a) 

unique to or more prevalent among women or (b) characterized by insufficient services 

or data involving women.372 This report has noted elsewhere the prevalence of 

substance abuse and mental illness, and the difficulty of obtaining treatment, 

experienced by women with disabilities and people with communication difficulties. 

Women with disabilities could benefit from explicit inclusion in the work of the associate 

administrator and the Advisory Committee for Women’s Services, which essentially 

reports on disparities of data collection, diagnosis, treatment, and employment 

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experienced by women in the areas of substance abuse and mental illness.373 People 

with disabilities could also benefit from the establishment of a parallel to the associate 

administrator and the Advisory Committee for Women’s Services that would focus on 

the state of substance abuse and mental health services among people with disabilities.

3. National Center on Birth Defects and Developmental Disabilities Within the Centers 

for Disease Control and Prevention 

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was 

established and authorized as a center within the Centers for Disease Control and 

Prevention (CDC) by section 247b-4 of the Public Health Service Act.374 Many of 

NCBDDD’s duties involve operating programs to collect and analyze data, conduct 

research, and promote and provide public education and information dissemination on 

the prevention of birth defects and developmental disabilities.375 These duties are 

generally carried out through grants and contracts with public and nonprofit private 

entities.376 NCBDDD is also responsible for reporting on the incidence and prevalence 

of birth defects, developmental disabilities, and the health status of individuals with 

disabilities. In its biennial report to House and Senate committees, NCBDDD is to 

include information on the impact of these conditions on quality of life and among 

various racial and ethnic groups, the effectiveness of various approaches to preventing 

secondary health conditions among people with disabilities, and health disparities 

experienced by people with disabilities.377 This reporting mandate includes 

development of “recommendations for improving the health and wellness and quality of 

life” of people with disabilities.378 This mandate enables NCBDDD to be a source

potentially important research funding and data concerning the health status of pe

with disabilities. (See chapter 4 for a discussion of NCBDDD’s disability-related 

programs and for recommendations aimed at CDC and NC

 of 

ople 

BDDD.)

4. National Institutes of Health 

The National Institutes of Health (NIH) is an agency of the Public Health Service; its 

overall organization is established in section 281 of the Public Health Service Act,379

although references to specific authorization, duties, and funding for NIH and its 

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component national research institutes and centers are made throughout the act. Each 

institute “conducts and supports research, training, health information and other 

programs with respect to a particular disease or group of diseases or any other aspect 

of human health”; this is also the criterion by which the Secretary of HHS would 

establish the need for any additional national research institute.380 Most of the current 

institutes focus on specific disabilities or on human conditions such as aging. The 

National Center on Minority Health and Health Disparities profiled earlier in this chapter. 

In addition, the Office of the Director of NIH contains a Division of Program 

Coordination, Planning, and Strategic Initiatives, which consists, in turn, of specific 

offices such as the Office of AIDS Research and the Office of Research on Women’s 

Health.381 There may be a total of no more than 27 national research institutes and 

national centers.382 Section 281 also establishes an advisory council within NIH known 

as the Scientific Management Review Board, which has such significant responsibilities 

as periodically reviewing and evaluating the research portfolios of the institutes, 

recommending organizational changes to the institutes, and submitting reports on 

organizational issues to significant House and Senate committees.383 However, the NIH 

Director retains the authority to override organizational changes recommended by the 

board, which otherwise are to be implemented, and to unilaterally initiate functional 

reorganization, establishment, and termination of institutes and offices within the Office 

of the Director.384 NIH’s annual appropriations are authorized under section 282a.385

(See chapter 4 for a discussion of NIH programs that have engaged in research on 

disability health disparities or other disability and health issues.) 

G. Conclusion and Recommendations 

Numerous opportunities exist within the current legal framework of key Federal laws 

that establish health, health care, health research, and other programs to incorporate a 

focus on people with disabilities and include disability surveillance in key areas where 

data are already being collected for other demographic groups. The following 

recommendations identify these and other opportunities. 

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RECOMMENDATION:

Congress should amend the Public Health Service Act that established the 

Substance Abuse and Mental Health Services Administration (SAMHSA) to include 

an emphasis on people with disabilities through the following changes: 

• Add a directive that identifies people with disabilities. Such a directive could be 

modeled after the existing directive to work with the National Institutes on 

Aging, Drug Abuse, Alcohol Abuse and Alcoholism, and Mental Health to 

“promote and evaluate substance abuse services for older Americans in need 

of such services, and mental health services for older Americans who are 

seriously mentally ill.”386 

• Amend the specific provision that ensures “that services provided with amounts 

appropriated under this subchapter are provided bilingually, if appropriate”387 to 

include provision of effective methods of communication for people who are 

deaf or hard of hearing, including sign language interpreters. 

• Include mental health and substance abuse issues of concern to women with 

disabilities among the identified duties of the associate administrator and the 

Advisory Committee for Women’s Services, which ensure that “the unique 

needs of minority women, including Native American, Hispanic, African 

American and Asian women, are recognized and addressed” in SAMHSA’s 

activities.388 This should include aspects of substance abuse and mental illness 

that are (a) unique to or more prevalent among women or (b) characterized by 

insufficient services or data involving women.389

RECOMMENDATION:

The Director of the National Institutes of Health (NIH) should require that institutes 

and centers within NIH that conduct health disparities research include people with 

disabilities as a demographic population for the purpose of such research. The 

Director should also request that the Scientific Management Review Board 

determine how best to integrate disability and health disparity research into the 

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portfolios of the institutes and centers, and recommend any organizational changes 

that might be required to achieve this goal.390 

RECOMMENDATION:

The Agency for Healthcare Research and Quality (AHRQ), within its mandate to 

undertake research on priority populations, should promote research that clearly 

identifies the various barriers encountered by people with disabilities when seeking 

health care. Such research would help disability health policy researchers and 

other stakeholders to assemble an accurate picture of, for example, the extent to 

which health care technologies, facilities, and equipment remain inaccessible to 

people with various disabilities,391 and bolster efforts to effect change. 

RECOMMENDATION:

The Secretary of the U.S. Department of Health and Human Services (HHS) 

should require substantive evidence of compliance with Title V of the Social 

Security Act’s Section 504 nondiscrimination provision from every state that 

receives funding under the Maternal and Child Services (MCH) Block Grant 

program. 

States that receive MCH Block Grant funding should link their responsibility for 

ensuring disability nondiscrimination in Title V programs, as expressly incorporated 

in the statute, with their existing reporting requirements. For example, currently 

required information on the number of maternal and child-health-related providers 

licensed in the state in a year should incorporate information on the degree to 

which those providers have received training in the accessibility needs of children 

with disabilities. Currently required information on the proportion of women who did 

not receive prenatal care during the first trimester of pregnancy should include 

information on whether the mother had a disability along with currently collected 

information about her racial and ethnic group. Moreover, indicators specific to the 

structural and programmatic accessibility of maternal and child care providers in 

Title V programs should be systematically incorporated in the annual audits. 

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RECOMMENDATION:

State Medicaid agencies and health maintenance organizations (HMOs) should 

notify enrollees with disabilities of their Federal accessibility rights, as well as the 

right to auxiliary aids where necessary, either for effective notice or to provide 

equal benefit from the service in question, as established in Section 504.392 State 

Medicaid agencies and HMOs that receive Federal financial assistance must 

acknowledge and act on their own generally greater financial and administrative 

capacity (compared with individual health care providers) to set policies and 

procedures that will inform, provide incentives, monitor, and enforce accessibility 

requirements among the providers that deliver health care services.393

RECOMMENDATION:

State Medicaid agencies that accept matching Federal monies must ensure that all 

Medicaid enrollees, including enrollees with disabilities, receive equal access to all 

aspects of the health care delivery system. Regulations enacted under Title XIX of 

the Social Security Act place ultimate responsibility for access to health care with 

the states. Each state is required to have a state Medicaid plan that “must ensure 

that all services covered under the State plan are available and accessible to 

enrollees of MCOs [managed care organizations], PIHPs [prepaid inpatient health 

plans], and PAHPs [prepaid ambulatory health plans].”394 The plans must include 

mechanisms to monitor and collect information about the extent of structural and 

programmatic access problems. 

The continuing presence of structural and programmatic barriers within the multiple 

levels of state Medicaid health care systems is an ongoing violation of the Medicaid 

program regulations and greatly contributes to the health care disparities 

experienced by people with disabilities. A state system may begin with Medicaid 

enrollment and extend to making health care appointments, as well as to actual 

health care examinations and treatment. 

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CHAPTER 4. Assessment of Key Federal Efforts That 

Promote Health for People with 

Disabilities 

A. Introduction 

The Federal Government undertakes and supports significant public health, biomedical, 

and social science research, and provides funding for health care services and other 

activities, such as public education and professional training, through a complex array of 

programs. Various Federal agencies lead and support interagency collaborations that 

define the future direction of health, health care, and health disparities research. 

Chapter 3 of this report outlines the legal framework for the key Government agencies, 

departments, and centers that engage in these activities, and presents 

recommendations for including or increasing attention to people with disabilities based 

on the legislative scheme. 

This chapter examines the extent to which people with disabilities are included in the 

recent activities of these key agencies, departments, and centers as they relate to 

health, health care, health promotion, disparities research, data collection, professional 

education, and other related activities. This chapter also presents a brief summary of 

the Federal Government’s level of effort related to health disparities research and 

program development for people with disabilities. The chapter concludes with 

recommendations for guiding reform that will improve and promote health, access to 

health care and health promotion programs and activities, professional education, and 

necessary research such as data collection. 

The following is a discussion of the key Federal agencies concerned with health and 

disability: the Department of Health and Human Services (HHS), the National Institutes 

of Health (NIH), other relevant Federal and allied agencies, and lead agencies for 

identifying future health policy research. 

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1. Department of Health and Human Services 

The Federal Government devotes approximately 20 percent of the annual Federal 

budget to health care and is the largest insurer of people with disabilities. The HHS is 

the lead Federal agency for health care, health research, professional training, and 

health promotion and disease prevention. Within HHS, the Centers for Medicare & 

Medicaid Services (CMS), with a 2008 budget of $606.9 billion, oversee the two largest 

programs that provide health care insurance for people with disabilities, as well as the 

State Children’s Health Insurance Program (SCHIP), which also serves certain children 

with disabilities. Six additional HHS agencies engage in activities such as research, 

public education, program development, and interagency collaboration related to health, 

health care, health disparities, and outcomes of concern either to the broad population 

of people with disabilities or to subsets of that population. These agencies are the 

Administration for Children and Families (ACF) (2008 budget of $47.4 billion); the 

National Institutes of Health (NIH) (2008 budget $29.5 billion); the Health Resources 

and Services Administration (HRSA) (2008 budget of $6.9 billion); the Centers for 

Disease Control and Prevention (CDC) (2008 budget of $6.5 billion); the Substance 

Abuse and Mental Health Services Administration (SAMHSA) (2008 budget of 

$3.4 billion); and the Agency for Healthcare Research and Quality (AHRQ) (2008 

budget of $335 million). 

2. National Institutes of Health 

NIH, composed of 27 institutes and centers, is the primary Federal agency for 

conducting and supporting medical research. Among its centers and institutes, at least 

12 have supported one or more research, education, health promotion, or other projects 

that relate to health issues and problems experienced by certain subgroups of people 

with disabilities. Some agencies have specifically included in their mission statement, 

strategic plan, or both a reference to disability as a population demographic whose 

members experience health disparities. However, while these agencies have 

undertaken important projects, the overall effort is quite limited when compared with 

agency funding levels and other research commitments. 

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3. Other Relevant Agencies and Offices 

Also included within HHS are the Office on Disability and the Office of the Surgeon 

General, which report directly to the Secretary of HHS.395

The National Institute on Disability and Rehabilitation Research (NIDRR) (2008 budget 

of $106.7 million), in the U.S. Department of Education (ED), also includes a 

programmatic focus on the health concerns of people with disabilities and has provided 

funding for research and program development in this area. 

The Institute of Medicine (IOM) of the National Academy of Sciences, an independent 

agency, has also undertaken significant research on topics including health and 

disability, technology and rehabilitation, and aging and long-term care. In collaboration 

with and supported by various Federal agencies, IOM carries out research that informs 

health care policy development. The activities of IOM are included in this report 

because the agency serves a crucial advisory role to Federal agencies concerned with 

matters of health and health policy. 

4. Lead Agencies for Identifying Future Health Policy Research 

In addition to undertaking and sponsoring research, several Federal agencies, including 

CDC and the Interagency Committee on Disability Research (ICDR), have taken the 

lead in identifying future public health research needs and initiating Federal 

collaboration on health disparities research.396

B. Overview of Key Federal Efforts That Promote Health for People with 

Disabilities 

The overview and discussion of key Federal efforts to promote health for people with 

disabilities includes a description of each agency or initiative’s overarching mission and 

goals, and a brief summary of its primary activities related to people with disabilities. 

(The Medicare, Medicaid, and SCHIP programs, along with related recommendations, 

are discussed in detail in chapter 3.) 

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1. Administration for Children and Families 

The Administration for Children and Families (ACF) is responsible for Federal programs 

that promote the economic and social well-being of families, children, individuals, and 

communities. The Administration on Developmental Disabilities (ADD), within the ACF, 

is responsible for implementing the Developmental Disabilities Assistance and Bill of 

Rights Act of 2000 (DD Act) (discussed in chapter 3). The DD Act requires ADD to 

ensure that people with developmental disabilities and their families receive the services 

and supports they need and are able to participate in planning and designing those 

services. The DD Act identifies eight areas of emphasis for ADD programs, including 

health, and specifically mandates that University Centers for Excellence in 

Developmental Disabilities Education, Research, and Service (UCEDDs) be 

established. As discussed in chapter 3, UCEDDs undertake interdisciplinary training, 

community service, and research and information dissemination activities. Currently, 

ADD funds 68 UCEDDs—at least one in every state and territory—with a total budget of 

approximately $33 million. 

Preservice and continuing education training programs may include family support; 

personal assistance services; clinical, health, and prevention services; and other direct 

services. During 2006, for example, 4,279 people were trained in interdisciplinary 

settings across a variety of disciplines, including pediatrics, special and regular 

education, psychology, nutrition, and nursing. UCEDD staff also offer expertise and 

services to individuals with developmental disabilities, family members of these 

individuals, professionals, and others. According to a 2006 report of UCEDD program 

activities, more than 524,000 individuals in the community gained knowledge and skills 

related to the health care needs of people with disabilities, and more than 665,000 

people with disabilities benefited from health-related activities supported by UCEDDs.397

2. Health Resources and Services Administration 

The Health Resources and Services Administration (HRSA) is the primary Federal 

agency for improving access to health care services for people who are uninsured, 

underserved, isolated, or medically vulnerable. Its program goals include improving 

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access to health care, health outcomes and the quality of health care; eliminating health 

disparities; improving the public health and health care systems; and enhancing the 

ability of the health care system to respond to public health emergencies. HRSA 

grantees provide health care to uninsured people, people living with HIV/AIDS, pregnant 

women, mothers, and children. They also train health professionals and improve 

systems of care in rural communities. HRSA distributed approximately 90 percent of its 

FY 2007 $6.4 billion budget in grants to states and territories, public and private health 

care providers, health professions training programs, and other organizations. The 

following are HRSA’s primary areas of activity. 

● Providing support to nearly 3,600 health center sites serving about 12.5 million 

people 

● Funding care and treatment services for an estimated 533,000 people living 

with HIV/AIDS 

● Assisting health care organizations, states, and communities, including rural 

and border areas, in improving services to women and children 

● Overseeing the national system that allocates organs, tissue, and blood stem 

cells for transplant. 

● Working with academic health centers and other training programs to enhance 

the diversity and distribution of the nation’s health care workforce 

● Implementing comprehensive systems of services in communities to meet the 

many needs of children and youth with special health care needs and their 

families 

● Participating in global health initiatives such as the President’s Emergency Plan 

for AIDS Relief 

Within HRSA, bureaus and divisions whose programs and activities specifically concern 

people with disabilities include the Maternal and Child Health Bureau (MCHB), the 

Division of Services for Children with Special Health Needs (DSCSHN), and the Division 

of Research, Training and Education. In addition, HRSA operates the Health Center 

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Program, which provides comprehensive, culturally competent primary health care 

services to medically underserved communities and vulnerable populations.

a. Maternal and Child Health Bureau 

The Maternal and Child Health Bureau (MCHB) is charged with promoting and 

improving the health of pregnant women, infants, children, adolescents, and their 

families. This work includes women of reproductive age, fathers, and children with 

special health care needs. MCHB administered seven major programs in FY 2007, with 

a total budget of $838.2 million. MCHB undertakes programs mandated for children with 

special health care needs established under Title V of the Social Security Act, one of 

the largest Federal block grant programs. Approximately a million children with special 

health care needs receive care through Title V programs; this represents about half of 

American children with severe disabilities and 20 percent of those with chronic health 

conditions.398 MCHB also makes discretionary grants to more than 900 maternal and 

child health programs. 

b. Division of Services for Children with Special Health Needs 

The Division of Services for Children with Special Health Needs (DSCSHN) supports 

the development and implementation of comprehensive, culturally competent, 

coordinated systems of care for the estimated 18 million American children who have or 

are at risk for chronic physical, developmental, behavioral, or emotional conditions and 

who also require health and related services of a type or amount beyond that required 

by children generally. The division works to achieve the systems outcomes set forth in 

“Healthy People 2010,” outcomes intended to break down barriers to community 

inclusion for people with disabilities. The following programmatic areas are included. 

● Family Professional Partnerships/Cultural Competence—supports grants to 

implement Family to Family Health Care Information and Education Centers for 

Families of Children with Special Health Care Needs in every state, in keeping 

with the Family Opportunity Act of 2005. 

146 
● Medical Home—promotes access to care for children and youth with special 

health care needs and their families, improves continuity and quality of care, 

and ensures comprehensive, coordinated care. 

● Health Insurance and Financing—focuses on strategies to improve access to 

adequate health insurance. Nearly 1 in 10 children with special health care 

needs have no health insurance, while others are underinsured and experience 

gaps in coverage for key services, including mental health, ancillary therapies, 

home health care, and durable medical equipment. 

● Early and Continuous Screening—has the goal of placing all infants identified 

with hearing loss in early intervention programs by the age of 6 months. 

● Community Integrated Services—facilitates the development of communitybased systems of service for children and youth with special health care needs 

and their families, and promotes the goal of breaking down barriers to 

community inclusion for people with disabilities and special health care needs. 

● Transition to Adult Health Care—supports statewide grants and a National 

Resource Center that provides information and resources to prepare youth to 

make the transition to adulthood, including moving from the pediatric to the 

adult health care system. 

In addition, the Division of Services for Children with Special Health Care Needs 

supports initiatives on certain special populations and issues, including improving and 

advancing state-based service systems for traumatic brain injury (TBI) survivors and 

their families, and improving access to care for children and youth with epilepsy, 

especially those living in medically underserved and rural areas, and those who belong 

to racial and ethnic minority populations. 

MCHB is also charged with establishing a program for genetic disease testing, 

counseling, information development and dissemination, and grants related to 

hemophilia, sickle cell disease, and other genetic disorders. In February 2008, MCHB 

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published the “National Survey of Children with Special Health Care Needs Chart Book 

2005–2006.”399

c. Division of Research, Training and Education 

The Division of Research, Training and Education is one of five divisions of HRSA’s 

Maternal and Child Health Bureau. Within the division, the Maternal and Child Health 

Leadership Education in Neurodevelopmental Disabilities (LEND) program trains 

individuals from a wide variety of professional disciplines to improve the health of 

children who have, or are at risk of developing, neurodevelopmental or other related 

disabilities, such as intellectual and developmental disabilities. Interdisciplinary faculty 

and trainees include audiologists, dentists, family members, health administrators, 

nurses, nutritionists, occupational therapists, physical therapists, physicians, 

psychologists, social workers, special education professionals, and speech and 

language pathologists. 

d. Primary Health Care: The Health Center Program 

HRSA-supported health centers provide comprehensive health care services to 

medically underserved communities and vulnerable populations, including low-income 

populations, people who are uninsured, those with limited English proficiency, migrant 

and seasonal farm workers, individuals and families experiencing homelessness, and 

those living in public housing. Approximately 40 percent of patients served in 2006 were 

uninsured. Nearly 829,000 individuals served that year experienced homelessness, and 

more than 129,000 were residents of public housing. Twenty-three percent of patients 

who received health care from the centers were African American, and 36 percent were 

Hispanic/Latino. HRSA also funds programs and services provided by designated 

health centers that are operated by tribal organizations.400

While HRSA does not explicitly target people with disabilities for health care services 

through designated health centers, the groups identified as the intended beneficiaries 

are likely to experience a greater level of disability than does the general population. 

Therefore, while HRSA’s Health Center Program neither targets individuals with 

148 
disabilities for health care services nor collects disability status data on those it serves, 

it is reasonable to assume that a proportion of the individuals who receive services from 

health centers experience disability. 

3. Centers for Disease Control and Prevention 

The Centers for Disease Control and Prevention (CDC) promotes health and quality of 

life by preventing and controlling disease, injury, and disability. CDC works with partners 

to monitor health, detect and investigate health problems, conduct research, develop 

public policies, and promote healthy behaviors. Several centers within CDC either 

sponsor or conduct research concerning health, health care, health status, and health 

disparities for people with disabilities. These include the National Center for Health 

Statistics (NCHS), the National Center for Chronic Disease Prevention and Health 

Promotion (NCCDPHP), the National Center on Birth Defects and Developmental 

Disabilities (NCBDDD), and the Office on Disability and Health within NCBDDD.

a. National Center for Health Statistics 

The National Center for Health Statistics (NCHS) is the principal Federal health 

statistics agency. (See chapter 5 for a discussion of health data collection.) 

b. National Center for Chronic Disease Prevention and Health Promotion 

The National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) 

conducts and supports research on chronic diseases and health promotion programs, 

and monitors population health through surveys, including the Behavioral Risk Factor 

Surveillance System (BRFSS), which has tracked health conditions and risk behaviors 

in the United States annually since 1984. (See chapter 5 for a discussion of the BRFSS 

and people with disabilities.) 

NCCDPHP has provided funding for an important research undertaking for people with 

disabilities: the Rochester Prevention Research Center (RPRC) at the University of 

Rochester, which is developing a national center of excellence for health promotion and 

disease prevention research in people who are deaf or hard of hearing. The RPRC 

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works to promote health and prevent disease in the deaf or hard-of-hearing population 

primarily through community-participatory research. Specific activities include 

identification and prioritization of the deaf or hard-of-hearing community’s health needs, 

development of effective and inclusive interventions, accessible communication and 

dissemination of the center’s findings, and evaluation of the center to ensure meaningful 

contributions to the health of local, state, national, and international deaf or hard-ofhearing populations. 

c. Office of Disability and Health—National Center on Birth Defects and 

Developmental Disabilities 

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) 

promotes the health of babies, children, and adults.401 NCBDDD’s activities include 

identifying the causes of and preventing birth defects and disabilities, helping children to 

develop and reach their full potential, and promoting health and well-being among 

people of all ages with disabilities. The Disability and Health Team, within the center’s 

Division of Human Development and Disability, focuses on promoting the health of 

people with disabilities through projects and programs that build the capacity of 

organizations to improve health and prevent morbidity. In recent years, the team has 

moved away from focusing on disability prevention and toward promoting secondary 

illness and disease prevention for people with disabilities, consistent with the goals of 

“Healthy People 2010” and the Surgeon General’s “Call to Action.” Currently, the 

Disability and Health Team is funding 16 state projects aimed at integrating awareness 

of disability health disparities into public health programs and activities. Core activities 

of these projects include analyzing BRFSS data for their respective states, creating and 

implementing strategic plans, and establishing and maintaining an advisory 

committee.402 The Disability and Health Team has also recently undertaken eight 

research projects that include a major emphasis on health promotion and disease 

prevention for women with disabilities.403

The following are examples of projects of CDC and the Office of Health and Disability. 

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● Promoting Health & Functioning in Persons with Serious Mental Illness (SMI)—

a project funded by CDC and undertaken by Dartmouth College to evaluate a 

novel program that may offer a practical approach to improving health, 

independent functioning, and longevity in persons with SMI. 

● Telehealth: Automated Phone Followup for People with Mobility Impairments—

a project funded by CDC and undertaken by the Boston Medical Center to 

develop and evaluate an automated, telephone-based screening, referral, and 

educational behavioral intervention system with the long-term objective of 

promoting health by preventing secondary conditions and decreasing their 

severity among older patients with mobility impairments who are wheelchair 

users. 

● A qualitative study to explore the barriers to breast cancer screening for women 

with physical disabilities. As a result of the study, CDC developed and tested 

the Right to Know Campaign—a family of health promotion materials (posters, 

MP3 recordings, flyers, ads, and a tip sheet) designed to increase awareness of 

breast cancer among women with physical disabilities and to encourage these 

women to be screened. 

The Disability and Health Team also supports the American Association for Disability 

and Health, the National Resource Center on Spina Bifida housed within the Spina 

Bifida Association of America, and the National Center on Physical Activity and 

Disability (NCPAD), which is operated jointly by the University of Illinois at Chicago’s 

Department of Disability and Human Development, the Rehabilitation Institute of 

Chicago, and the National Center on Accessibility at Indiana University. Established 

through a CDC award in 1999, the Indiana University center is a national clearinghouse 

to gather, organize, and consolidate existing information; to synthesize resources on 

physical activity for people with disabilities; and to facilitate dissemination to consumers, 

practitioners, and disability and service organizations. 

In addition to core programs, the team is responsible for nearly $18 million to support 

several congressionally mandated programs, including the Amputee Coalition of 

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America, the Special Olympics, and the Christopher and Dana Reeve Paralysis 

Resource Center. The team has also hosted training opportunities for developing a 

cadre of public health professionals who will ultimately work in the field of disability and 

health. In addition, the team is working to integrate the needs of people with disabilities 

into emergency planning and preparedness activities to ensure that they will not be 

excluded from shelters and that they are included in evacuation planning and 

procedures. 

d. National Center for Environmental Health 

The National Center for Environmental Health (NCEH) is responsible for a national 

program to maintain and improve health and promote a healthy environment by 

preventing premature death and avoidable illness and disability caused by 

noninfectious, nonoccupational environmental and related factors. The center 

recognizes that health issues are related to land use, and therefore, a major initiative of 

the NCEH is designing and building healthy places. NCEH stipulates that health relates 

to land use and includes accessibility for people with disabilities and older persons as 

well as aspects of the community environment that influence residents’ level of physical 

activity. NCEH has funded the University of Michigan at Ann Arbor to study the effects 

of the built environment and the progression of disability among older adults. 

4. Substance Abuse and Mental Health Services Administration 

This mission of the Substance Abuse and Mental Health Services Administration 

(SAMHSA) is to build resilience and facilitate recovery for people with or at risk for 

substance abuse and mental illness. SAMHSA envisions “A Life in the Community for 

Everyone.” This vision is based on the premise that people of all ages who have, or are 

at risk for, mental or substance use disorders should have the opportunity for a fulfilling 

life that includes a job, an education, a home, and meaningful personal relationships 

with friends and family. The agency administers competitive and block grant programs, 

and undertakes data collection, evaluation, and technical assistance activities. With a 

fiscal year 2007 budget of nearly $3.3 billion, SAMHSA funds and administers grant 

programs and contracts that support state and community efforts to expand and 

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enhance prevention and early intervention programs, and to improve the quality, 

availability, and range of substance abuse treatment, mental health, and recovery 

support services in local communities, where people can be served most effectively. 

Programs are carried out by the Center for Mental Health Services (CMHS), the Center 

for Substance Abuse Prevention (CSAP), the Center for Substance Abuse Treatment 

(CSAT), and the Office of Applied Studies.

a. Center for Mental Health Services 

The Center for Mental Health Services (CMHS) applies scientifically established 

findings and practice-based knowledge in the prevention and treatment of mental 

disorders; improves access, reduces barriers, and promotes high-quality effective 

programs and services for people who have or are at risk for these disorders, and for 

their families and communities; and promotes an improved state of mental health in the 

nation, as well as the rehabilitation of people with mental disorders. 

b. Center for Substance Abuse Prevention 

The Center for Substance Abuse Prevention (CSAP) provides national leadership in the 

development of policies, programs, and services to prevent the onset of illegal drug, 

underage alcohol, and tobacco use; disseminates substance abuse prevention 

practices; and builds the capacity of states, communities, and other organizations to 

apply prevention knowledge effectively. 

c. Center for Substance Abuse Treatment 

The mission of the Center for Substance Abuse Treatment (CSAT) is to bring effective 

alcohol and drug treatment to every community. CSAT provides national leadership to 

expand the availability of effective treatment and recovery services for alcohol and drug 

problems; and to improve access, reduce barriers, and promote high-quality effective 

treatment and recovery services for people with alcohol and drug problems, abuse, or 

addiction, and for their families and communities. 

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d. Office of Applied Studies 

The Office of Applied Studies (OAS) collects, analyzes, and disseminates national data 

on behavioral health practices and issues. OAS is responsible for the annual National 

Survey on Drug Use and Health, the Drug Abuse Warning Network, and the Drug and 

Alcohol Services Information System, among other studies. 

OAS also provides access to the National Registry of Evidence-based Programs and 

Practices (NREPP), a searchable online registry of mental health and substance abuse 

interventions that have been rated by independent reviewers. The purpose of this 

registry is to help the public find approaches to preventing and treating mental and 

substance use disorders that have been scientifically tested and that can be readily 

disseminated to the field. 

5. Agency for Healthcare Research and Quality 

The Agency for Healthcare Research and Quality (AHRQ) is the health services 

research arm of HHS. The agency supports research in major areas of health care, 

including quality improvement and patient safety, outcomes and effectiveness of care, 

clinical practice and technology assessment, health care organization and delivery 

systems, primary care, including preventive services), and health care costs and 

sources of payment. 

AHRQ conducts and supports health services research, both within the agency and in 

academic institutions, hospitals, physicians’ offices, health care systems, and other 

settings across the country. The agency is also a major source of funding and technical 

assistance for health services research and research training at U.S. universities and 

other institutions. 

a. Priority Populations 

AHRQ is also charged with carrying out research, evaluations, and demonstration 

projects with respect to health care for “priority populations,” including low-income 

groups, minority groups, women, children, the elderly and “individuals with special 

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health care needs, including individuals with disabilities and individuals who need 

chronic care or end-of-life health care.” The AHRQ Office for Priority Populations 

Research coordinates, supports, manages, and conducts health services research on 

these populations. AHRQ describes its disability-related research as follows: 

AHRQ-supported research brings evidence on what works—and what does not 

work—in health care delivery to people impaired by disabling illness or injury. 

Findings from AHRQ research can help public policymakers, program 

administrators, and other health care leaders develop policies and programs to 

improve health services for people with disabilities as well as determine 

eligibility for benefits under Medicare, Social Security, and other publicly 

financed programs and private health plans.404

b. National Healthcare Disparities Report 

In 2003, AHRQ began publishing an annual “National Healthcare Disparities Report” 

(NHDR), describes the quality of and access to care for multiple subgroups across the 

United States; the NHDR is a source of information for tracking progress over time. The 

first report, released in 2003, included a chapter entitled “Disparities in Health and 

Health Care,” which recognized that disability and chronic disease are not synonymous 

and that people with disabilities typically confront two generic problems in health care: 

access to care and coordination of care. The use of the word “access” in the context of 

this chapter refers to physical, cognitive, communication, or other barriers. In 

subsequent NHDRs, information about people with disabilities is included in a chapter 

entitled “Priority Populations” under the heading “Individuals with Special Health Care 

Needs,” which includes people with disabilities, people who need chronic or end-of-life 

care, and children with special health care needs. The 2004 NHDR highlights children 

with special health care needs, while the 2005 and 2006 reports present data on quality 

and access for younger and elderly Medicare beneficiaries with disabilities, as well as 

for children with special health care needs. 

In the 2007 NHDR, AHRQ broadened the definition of disability and focused on the 

impact on individuals with disabilities of delayed care; inappropriate medication use by 

older people; and exercise and weight management for obese adults with disabilities. 

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c. Related Research 

The following are recent and current disability-related research topics supported by 

AHRQ. 

● Use of risky or ineffective medicines by seniors with disabilities 

● Depression among people with diabetes 

● The relationship of age, ethnicity, and living arrangements on the use of 

assistive devices by people with mobility disabilities 

● Increasing chronic disability care management programs in Medicaid managed 

care plans 

● Health disparities experienced by women with disabilities 

● The impact of lack of health care in rural areas for people with disabilities 

● Ways to improve the health care experiences of people who are blind or have 

vision impairments 

● Creating an evidence base for vision rehabilitation 

● How health insurance status affects people with disabilities 

● Translating and adapting the Consumer Assessment Healthcare Providers and 

Systems (CAHPS) survey to collect information in American Sign Language 

(ASL) from deaf people about their health care experiences 

● Measuring the business case for disability care coordination from the 

perspective of Medicaid by showing that the additional expenses of paying for 

care coordination are offset in the form of reduced total program expenditures 

AHRQ also oversees the Medical Expenditure Panel Survey (MEPS), a set of largescale surveys of families and individuals, their medical providers, and employers across 

the United States. MEPS is the most complete source of data on the cost and use of 

health care and health insurance coverage. (See chapter 5 for a discussion of MEPS.) 

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6. Office on Disability 

The HHS Office on Disability was created in October 2002 in response to the New 

Freedom Initiative, which established seven areas of emphasis for people with 

disabilities, including community integration, education, employment, health, housing, 

technology, and transportation. The Office on Disability focuses its efforts on these 

seven domains. The Director of the Office reports to the Secretary of HHS and serves 

as an advisor on HHS activities related to disabilities. 

The Office on Disability is charged with serving as the focal point within HHS for the 

implementation and coordination of policies, programs, and special initiatives related to 

disability, both within the department and with other Federal agencies. The office is also 

responsible for increasing interactions among programs within HHS and with Federal, 

state, community, and private sector partners, and for supporting initiatives that remove 

barriers that prevent people with disabilities from participating in their communities. 

Activity highlights for 2008 included the following: 

● Collaboration with the Surgeon General to develop and publish a document 

concerning closing the gaps in services for infants and young children with 

hearing loss 

● Management of the “I Can Do It; You Can Do It” program, which promotes 

physical fitness and healthy diets among children and youth with disabilities 

● Promotion of the Surgeon General’s “Call to Action To Improve the Health and 

Wellness of Persons with Disabilities” through management of four working 

groups that are increasing attention to disability in the media, entertainment 

industries, medical trade organizations, health care providers, and employers 

● Distribution of the “Call to Action” at numerous conferences and meetings 

● Ensuring that people with disabilities are included in the development of 

electronic and personal health records planning activities 

● Ensuring that emergency preparedness plans include the needs of people with 

disabilities 

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To further implement the goals of the “Call to Action,” the Office on Disability convened 

a meeting of leading experts in health care, education, and Government to address the 

need to include training programs in medical, nursing, and dental curriculums that are 

directly related to persons with disabilities and to forge an action plan to ensure that all 

health programs offer consistent health care access for people with disabilities. 

Participants identified actions for moving forward, including incorporating disability into 

core competencies using universal design; developing methods for electronic 

information exchange and dissemination; and identifying opportunities for accreditation 

support. 

Through partnerships with the U.S. Department of Education, the Administration on 

Developmental Disabilities, the Social Security Administration, the Substance Abuse 

and Mental Health Services Administration, and the Georgetown University Center for 

Child and Human Development, the Office on Disability is working toward an integrated 

approach to address the needs of people with co-occurring disabilities.405

7. Office of the Surgeon General 

The Surgeon General serves as the nation’s chief health educator by providing the 

public with scientific information on how to improve health and reduce the risk of illness 

and injury. The Surgeon General reports to the Assistant Secretary for Health, who is 

the principal advisor to the Secretary of HHS on public health and scientific issues. The 

Office of the Surgeon General oversees the operations of the 6,000-member 

Commissioned Corps of the U.S. Public Health Service. 

The Surgeon General is charged with various duties, including protecting and advancing 

health by educating the public and advocating for effective disease prevention and 

health promotion programs and activities. He or she is also charged with providing 

leadership in promoting special health initiatives, such as tobacco- and HIV-prevention 

efforts, with other Government and non-Government entities, and elevating the quality 

of public health practice in the professional disciplines through the advancement of 

appropriate standards and research priorities. Public health priorities of the Office of the 

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Surgeon General include disease prevention, limiting health disparities, public health 

preparedness, and improving health literacy. 

Reports issued by the Surgeon General focus attention on important public health 

issues such as the adverse health consequences of smoking; the report on the smoking 

issue triggered nationwide efforts to prevent tobacco use and generated major public 

health initiatives. The Surgeon General has produced several critical reports that focus 

attention on health and health care disparities experienced by people with disabilities, 

including people with intellectual and developmental disabilities, and that emphasized 

the centrality of health to the quality of life. Included are the 2005 “Call to Action,” the 

2002 report entitled “Closing the Gap: A National Blueprint To Improve the Health of 

Persons with Mental Retardation,” “Report of the Surgeon General’s Conference on 

Health Disparities and Mental Retardation,” and “Oral Health in America: A Report of 

the Surgeon General,” which underscores the many oral and systemic diseases and 

conditions that impair health in older adults and the role of oral health in the quality of 

life and life expectancy of individuals with disabilities. These reports describe the 

particular challenges to health and well-being faced by persons of all ages with 

disabilities and place their health among the public health issues that should be at the 

forefront of research, service delivery, financing, training and education, and health care 

policy. The reports also establish the principle that good health is necessary for people 

with disabilities to work, learn, and engage with their families and communities. 

“Call to Action,” “Closing the Gap,” and “Oral Health in America” firmly establish that the 

health and wellness of people with disabilities is a matter of public health concern. 

Further, they call for better approaches to identifying, acquiring, and utilizing new 

knowledge, new technologies, and new systems of services that emphasize a team 

approach and partnerships with people with disabilities. These publications identify the 

need for “health care providers who see and treat the whole person, educators willing to 

teach about disability, a public that sees beyond the disability to the whole person, and 

a community that provides accessible health and wellness services for persons with 

disabilities.”406 “Call to Action” specifically identifies challenges that must be overcome 

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to realize the principle that, with good health, people with disabilities have the freedom 

to work, learn, and engage actively with their families and their communities. 

Challenges are present in all aspects of health care and service delivery for persons 

with disabilities. They include such concerns as an inadequately trained and educated 

health care and services workforce and a health care and health promotion service 

system that is limited in accessibility or availability to persons with disabilities. 

8. “Healthy People 2010” 

“Healthy People 2010” is the Federal Government’s statement of national health 

objectives, designed to identify the most significant preventable threats to health, and to 

establish national goals for reducing these threats. This report is designed to increase 

the quality and years of healthy life, and to eliminate disparities in the burden of 

disease. People with disabilities are represented in 207 of the 467 objectives that span 

21 of the 28 “Healthy People 2010” focus areas. However, when “Healthy People 2010” 

was implemented, data on people with disabilities were available for only 88 of the 207 

objectives. 

The statement’s Focus Area 6, Disability and Secondary Conditions, contains 13 

objectives to promote the health and well-being of children and adults with disabilities 

across their lifespan. It introduces the concept of “healthy people with disabilities.”407

For the first time in national public health parlance, disability is considered in relation

fitness and health, rather than solely as an outcome of illness or disease. The stated 

goal of Focus Area 6 is to “Promote the health of people with disabilities, prevent 

secondary conditions, and eliminate disparities between people with and without 

disabilities in the U.S. population.” Within Focus Area 6, Objective 6–1 states that 

“Disability is a demographic descriptor rather than a health outcome” and that 

 to 

[d]isability can be viewed as a universal phenomenon everyone experiences at 

some time. Disability also can be viewed as representing a minority of the 

population, in that people with disabilities may be less visible, undercounted, 

and underserved. As a potentially underserved group, people with disabilities 

would be expected to experience disadvantages in health and well-being 

compared with the general population. People with disabilities may experience 

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lack of access to health services and medical care, and may be considered at 

increased risk for various conditions.408

“Healthy People 2010” also contains 10 vision objectives. While most of these 

objectives are concerned with prevention and treatment of vision impairments, Focus 

Area 28, Objective 10, addresses the need for vision rehabilitation. This objective aims 

to “increase the use of vision rehabilitation services and adaptive devices by people with 

vision impairments.”409 

The objectives for disability and secondary conditions seek to eliminate disparities 

between people with and without disabilities by addressing health disparities among 

specific populations of people with disabilities. “Healthy People 2010” undertook a 

midcourse review that revealed some preliminary information on the extent to which 

objectives are being met. For example, for Focus Area 6, the midcourse review provides 

new data comparing populations within the disability community that address both 

quality of life and health disparities. Disparities are documented between people who 

have disabilities and those who do not, as well as among subgroups based on 

education, income, gender, and ethnicity. Improvements are shown in several areas, 

including an increase in inclusion of people with disabilities in national and state 

surveillance, a reduction of the number of adults with disabilities living in congregate 

care facilities, and an increase in the number of children with disabilities included in 

regular education programs. However, according to the midcourse review, this 

improvement cannot be attributed to any particular programmatic intervention. 

Implementation and enforcement of Federal disability rights laws, improved public 

awareness of disability generally, and an increase in accessibility, including to public 

transportation, may be contributing factors.410

9. National Institute on Disability and Rehabilitation Research 

The National Institute on Disability and Rehabilitation Research (NIDRR), operating in 

concert with the Rehabilitation Services Administration (RSA) and the Office of Special 

Education Programs (OSEP), conducts research and related activities that foster full 

inclusion, social integration, employment, and independent living among individuals with 

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disabilities. With a fiscal year 2007 budget of $106.7 million, NIDRR supports disability 

research, demonstration projects, and related activities. NIDRR undertakes core 

research in areas such as employment, health and function, technology for access and 

function, knowledge dissemination and utilization, independent living and community 

integration, and other related areas. Most of NIDRR’s research related to health, health 

care, and health disparities for people with disabilities is conducted within the health and 

function core priority area. 

NIDRR’s 2005–2009 strategic plan spells out the agency’s mission for that period 

regarding health and function. Recognizing that functional ability reflects the complex 

interaction between individuals and the environment in which they live, NIDRR supports 

research at both the individual and systems levels. Individual-level research focuses on 

development and testing of new interventions that improve functional and health 

outcomes for people with disabilities. At the systems level, NIDRR-supported research 

focuses on the organization and delivery of health care and medical rehabilitation 

services.411 

a. Health and Function 

NIDRR’s research focus for health and function emphasizes the challenges people with 

disabilities encounter in obtaining individual health care, services, and supports. 

Research topics include medical rehabilitation, health and wellness programs, service 

delivery, short- and long-term interventions, systems research, and new and emerging 

disabilities. NIDRR has specifically emphasized support for projects concerned with 

health and health care disparities among individuals with disabilities. 

Recent past and current multiyear research grants specifically address health disparities 

and people with disabilities. For example, the Health Disparities Project, a 5-year 

initiative launched by the Oregon Health and Science University (OHSU) in 2008, will 

include review and synthesis of existing health and health care access information for 

people with disabilities. The initiative will use Medical Expenditure Survey data to 

analyze systemic, environmental, and individual factors that relate to health care access 

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among people with certain disabilities, and to identify models of health outcomes. An 

earlier project undertaken by OHSU is identifying strategies to overcome barriers that 

impede access by people with disabilities to routine health care, such as exercise, 

nutrition, pain management, and complementary and alternative therapies that promote 

health and wellness. The same project is developing improved measurement tools to 

assess the health and well-being of people with disabilities regardless of functional 

ability. A third OHSU project is developing a group therapy intervention to address the 

specific needs of women with physical disabilities who experience depressive 

symptoms. 

Additional projects relate to health, function, fitness, and independent living for 

individuals with disabilities. The following projects relate to prevention and health 

promotion. 

● The University of Illinois, Chicago, has undertaken a 5-year project concerning 

access to recreational opportunities, physical fitness, and endurance of people 

with disabilities. The university’s other projects include one that aims to reduce 

obesity and obesity-related secondary conditions among adolescents with 

disabilities. 

● George Mason University has undertaken a 4-year project to develop and 

validate health service quality indicators for people with disabilities enrolled in 

managed Medicaid programs. 

● Marquette University and partners undertook a 5-year research project to 

evaluate accessible medical instrumentation. 

● Georgia Institute of Technology conducted research on the way wheeled 

mobility is conceptualized and understood. 

● Northwestern University undertook a 5-year project to address the need to 

improve the delivery of health services for people with disabilities by evaluating 

the impact of Medicare’s inpatient rehabilitation facilities prospective payment 

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system and by identifying the impact of comorbidity on patients’ classification 

and reimbursement. 

NIDRR also enters into interagency agreements with various agencies, including HRSA, 

to promote certain aspects of health care delivery, and it supports substantial research 

in the area of traumatic brain injury, and burn and stroke treatment and recovery. 

NIDRR-supported research has resulted in published articles on topics including the 

following: 

● Recognizing and responding to the health disparities of people with disabilities 

● Health and health care access for people with intellectual disabilities 

● Access barriers to substance abuse treatment for persons with disabilities 

● Translating policy principles into practice to improve health care access for 

adults with intellectual disabilities 

● Understanding health outcomes for people with spinal cord injury 

● Physical and social environmental factors that influence health and participation 

outcomes for chronically ill adults 

b. Interagency Committee on Disability Research 

The Director of NIDRR chairs the Interagency Committee on Disability Research 

(ICDR), which facilitates the exchange of information on disability and rehabilitation 

research activities among its member Federal agencies on topics including assistive 

technology and universal design; medical rehabilitation; data and statistics; 

employment; and community participation. The ICDR identifies emerging research 

areas; assesses gaps and duplications in existing research; and makes 

recommendations to strengthen the Federal research agenda. 

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10. National Institutes of Health 

With its 27 institutes and centers, NIH is the primary Federal agency for conducting and 

supporting medical research. The National Center on Minority Health and Health 

Disparities (NCMHD) is the primary center in NIH that promotes minority health and that 

leads, coordinates, and supports activities intended to eliminate health disparities for 

racial and ethnic minority groups. NCMHD’s mission does not include health disparities 

experienced by people with disabilities. (See chapter 3 for a discussion of the legislation 

that established NCMHD.) However, at least 12 other institutes and centers within NIH 

are engaged in various levels of research that promotes health and reduces health 

disparities for certain groups of people with disabilities. (Agencies are presented 

alphabetically.) 

a. National Cancer Institute 

The National Cancer Institute (NCI) is the Federal Government’s primary agency for 

cancer research and training. NCI coordinates the National Cancer Program, which 

conducts and supports research, training, health information dissemination, and other 

programs concerning the cause, diagnosis, prevention, and treatment of cancer. It also 

supports education and training in fundamental sciences and clinical disciplines, and 

research projects on cancer control, a national network of cancer centers, and the 

collection and dissemination of information on cancer. 

NCI oversees the Center to Reduce Cancer Health Disparities (CRCHD), which 

engages in collaborative research studies with NCI and other NIH institutes and centers 

to promote research and training in cancer health disparities and to identify new and 

innovative scientific opportunities to improve cancer outcomes. While health disparities 

for people with disabilities do not appear to be a focus of the CRCHD, there is modest 

indication that NCI and CRCHD recognize that the disability community experiences 

health disparities. For example, in his opening remarks during a 2007 Cancer Health 

Disparities Summit, NCI’s Director, Dr. John Niederhuber, said, “Health disparities are 

about unacceptable inequalities in health outcomes that are experienced by certain 

groups. Racial and ethnic minorities, residents of rural areas, women, children, the 

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elderly, and people with disabilities all experience disproportionate burdens of disease, 

including cancer.”412 NCI has supported several research projects on health disparities 

that affect certain subpopulations of the disability community, including the following: 

● A research grant awarded to the Susan G. Komen Breast Cancer Foundation 

for a pilot study to develop and test a method to identify women of screening 

age with physical and sensory disabilities, and a questionnaire to identify 

amenable-to-change barriers in screening mammography for these women413

● A research grant on the effects of disability on the diagnosis of breast cancer; 

awarded to the University of Texas Medical Center, Galveston 

● A program to expand the number of cancer education training videos available 

to people who are deaf in San Diego, California, and to test dissemination 

strategies designed to take the program nationwide, including developing 

national partnerships with deaf ministries; awarded to the University of 

California, San Diego. 

● An immersion project to train 10 medical students from the University of 

California, San Diego, in basic American Sign Language (ASL), Deaf culture 

awareness, and medical terminology in ASL, with a focus on cancer-related 

issues; awarded to the University of California, San Diego 

b. National Eye Institute 

The National Eye Institute (NEI) conducts and supports research and helps prevent and 

treat eye diseases and other vision disorders. NEI supports vision research through 

research grants and training awards to universities, medical centers, and other 

institutions, and conducts laboratory and patient-oriented research. NEI is the lead 

Federal agency for the vision chapter in “Healthy People 2010,” and it recognizes the 

importance of access to vision rehabilitation services for people who are blind or have 

vision impairments. NEI’s 1999–2003 strategic plan includes a national plan for lowvision and blindness rehabilitation, with program goals such as developing devices, 

environmental modifications, and rehabilitation strategies to minimize the impact of 

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vision impairment in everyday life and reduce societal limitations for individuals with 

vision impairments. The plan states 

. . . NEI is working on a project to educate eye health care professionals about 

the issues of vision rehabilitation. The NEI is developing a pilot program to 

enhance referrals of individuals with low vision to vision rehabilitation services. 

The primary purpose of the program is to increase patient referrals from eye 

care professionals to qualified vision rehabilitation services.414

NEI’s commitment to establishing sound scientific evidence about the effectiveness of 

vision rehabilitation is particularly important because of the high prevalence of vision 

impairments in the United States, as well as the role vision rehabilitation plays in 

supporting the health and independence of people who are blind or have vision 

impairments. Acting on this commitment, the Institute supported various projects 

including the following: 

● University of Alabama at Birmingham—a project to lead randomized clinical 

trials on the effectiveness of low-vision rehabilitation services for adults with 

vision impairments who seek them. One goal of the project was to provide 

information that could assist the Centers for Medicare & Medicaid Services 

(CMS) in formulating policy on coverage of these services. 

● University of Minnesota, Twin Cities—a project to develop a computer-based 

design tool in which environments could be simulated with sufficient accuracy to 

predict the visibility of key landmarks and obstacles, such as steps or benches, 

under differing lighting conditions. The long-term goal was to create tools to 

enable the design of safe environments for people with vision impairments. 

c. National Human Genome Research Institute 

The National Human Genome Research Institute (NHGRI) began as the National 

Center for Human Genome Research (NCHGR), which was established in 1989 to carry 

out the role of the National Institutes of Health (NIH) in the International Human 

Genome Project (HGP). 

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NHGRI has funded a 3-year project at the University of Illinois at Chicago designed to 

explore the areas in which medical genetic advising is, or is not, informed by the lived 

experience of persons with genetic or prenatally diagnosable disabilities. 

d. National Institute on Aging 

The National Institute on Aging (NIA) researches the biomedical, social, and behavioral 

aspects of the aging process; the prevention of age-related diseases; and the promotion 

of a better quality of life for older people. NIA funds research and training at universities, 

medical centers, and other institutions, and conducts basic and clinical intramural 

research. NIA recognizes that older adults experience health disparities and that 

research is needed to understand the causes of these disparities and how they relate to 

social, economic, and health system factors. While one of NIA’s goals is to reduce the 

incidence of disease and disability among older people, the work of the agency also 

relates to health, health care, and health disparities experienced by people with 

disabilities generally because many older people have acquired various chronic, longterm hearing, vision, and mobility impairments and, therefore, are likely to experience 

disparities in secondary health conditions. NIA is exploring important interrelationships 

among socioeconomic status, race-ethnicity, and health, as well as biodemographic 

approaches to aging and health. Outcomes of these research endeavors may be 

generalizable to the broader disability community over time. 

e. National Institute on Alcohol Abuse and Alcoholism 

The National Institute on Alcohol Abuse and Alcoholism (NIAAA) conducts research 

focused on improving the treatment and prevention of alcoholism and alcohol problems 

to reduce health, social, and economic consequences that may include, for example, 

personal health costs, the cost of medical care and treatment, and loss of productivity. 

The institute’s vision includes increasing the understanding of normal and abnormal 

biological functions and behavior relating to alcohol use, and improving the diagnosis, 

prevention, and treatment of alcohol use disorders. Enhancing quality health care is 

also a key aspect of the institute’s vision. NIAAA apparently does not specifically 

investigate alcohol use among people with disabilities, but the institute does have an 

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initiative related to alcohol use among people who are aging. This group will likely 

include a high percentage of individuals who have other limiting impairments. Further, 

overuse of alcohol can increase the probability of developing diabetes, heart disease, 

and other conditions that can lead to disability. Thus, NIAAA is included among the NIH 

institutes that engage in activities related to health and disability. 

f. National Institute of Child Health and Human Development 

The National Institute of Child Health and Human Development (NICHHD) conducts and 

supports research on all stages of human development, from preconception to 

adulthood, to better understand the health of children, adults, families, and 

communities. The institute has supported research projects such as the following: 

● University of California, San Francisco—a project to study a diverse sample of 

families raising youth who are both medically fragile and developmentally 

disabled, to describe the challenges in the transition to adulthood and to 

discover how services, programs, and resources available through schools 

affect family planning and decision making for the transition, including the 

health care transition 

● Oregon Health and Science University—a project to test the efficacy of a health 

promotion intervention for people with intellectual disabilities 

g. National Institute of Dental and Craniofacial Research 

The National Institute of Dental and Craniofacial Research (NIDCR) leads a national 

research program designed to understand, treat, and ultimately prevent infectious and 

inherited craniofacial-oral-dental diseases and disorders. NIDCR performs and supports 

basic and clinical research, conducts and funds research training and career 

development programs, coordinates and assists relevant research and research-related 

activities among other sectors of the research community, and promotes the transfer of 

knowledge. The institute has developed a strategic plan to eliminate oral, dental, and 

craniofacial health disparities; this plan is the foundation for addressing persistent 

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national inequalities in oral health. NIDCR broadly defines “health disparities” and the 

factors with which they are associated. 

The complex nature of American society is mirrored in the complex meaning of 

health disparities. We are interpreting the term to refer to the diminished health 

status of population subgroups defined by demographic factors such as age 

and socioeconomic status (SES), geography, disability status, and behavioral 

lifestyles. Health disparities associated with any one or more of these factors 

reflect the diversity of the U.S. population by gender and age, racial or ethnic 

identity, educational attainment, income (measured by money and other forms 

of wealth), location of residence (regional and metropolitan area), disability 

status, and sexual orientation.415

NIDCR has developed and published a series of important booklets on providing dental 

care for people with developmental disabilities. A document entitled “An Introduction to 

Practical Oral Care for People with Developmental Disabilities” is available on the 

NIDCR Web site, and other documents in the series can be accessed or ordered there, 

including the following: “Practical Oral Care for People with Autism,” “Practical Oral 

Care for People with Cerebral Palsy,” “Practical Oral Care for People with Down 

Syndrome,” and “Practical Oral Care for People with Mental Retardation.”416 The 

institute also has a caregiver’s guide to everyday dental care for people with disabilities 

that can be accessed online, and it offers continuing education credit and certification 

for the completion of an examination concerning health challenges and strategies for 

practical oral health care for people with developmental disabilities. NIDCR also makes 

available online a health care provider’s guide to wheelchair transfer and an extensive 

list of additional resources for providing oral care for people with developmental 

disabilities.417

In 2008, NIDCR launched a clinical research initiative to improve the oral health of 

special needs populations, which could include epidemiologic and behavioral studies 

and patient-oriented research. The institute has funded the University of California, San 

Francisco, to investigate oral health disparities in children with disabilities. 

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h. National Institute of Diabetes and Digestive and Kidney Diseases 

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD) 

conducts and supports research on the diseases of internal medicine and related 

subspecialty fields, as well as many basic science disciplines. NIDDKD has funded the 

University of Montana to undertake several projects intended to test the reliability and 

validity of various methods to assess the dietary intake of adults with significant 

cognitive impairments living in the community. 

i. National Institute on Deafness and Other Communication Disorders 

The National Institute on Deafness and Other Communication Disorders (NIDOCD) 

conducts and supports biomedical and behavioral research and research training about 

the processes of hearing, balance, smell, taste, voice, speech, and language. NIDOCD 

has funded a project at the Virginia Commonwealth University, which identifies, 

analyzes, and addresses the ethical and social implications from advances due to the 

Human Genome Project. 

j. National Institute of Environmental Health Sciences 

The National Institute of Environmental Health Sciences (NIEHS) undertakes activities 

to reduce illness and disability by understanding how the environment influences the 

development and progression of human disease. NIEHS emphasizes basic science, 

disease-oriented research, global environmental health, and multidisciplinary training for 

researchers. NIEHS also makes available information on major health topics that are 

related to or affected by environmental exposures, uses research outcomes to influence 

public health interventions and policies, and helps health professionals diagnose and 

treat people with conditions and diseases influenced by environmental agents. The 

institute supports research centers that address health issues such as breast cancer 

and the environment, children’s environmental health, population health, and health 

disparities. 

NIEHS has funded a longitudinal study using community-based participatory research to 

improve access to the built environment for persons with mobility disabilities. The 

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project involves partnerships between the University of Illinois at Chicago, the Illinois 

Americans with Disabilities Act Project, the Chicago-based American Planning 

Association, and the Urban Transportation Planning Center at the University of Illinois at 

Chicago. The study involves the development of a health empowerment zone that 

includes training initiatives with fitness and recreation facilities, grocery stores, the 

regional transportation authority, and local planning and zoning boards. Interventions 

include disability awareness and accessibility training for fitness facility, grocery store, 

and mass transit staff; recommending barrier removal options to store and facility 

owners; recommending strategies for improving community accessibility; and a health 

marketing incentive campaign. The primary outcome is a model program for improving 

access to the built environment, resulting in improved health and reduction of secondary 

conditions among people with mobility disabilities.418 

k. National Institute of Mental Health 

The National Institute of Mental Health (NIMH) is the lead Federal agency for research 

on the mind, brain, and related behavior. NIMH’s strategic plan calls for deepening and 

expanding personalized intervention research, specifically calling for a comprehensive 

health care perspective through studies that take into account illnesses that co-occur 

with mental disorders (for example, heart disease and substance abuse) or that address 

the effects of taking multiple prescribed medications.419 NIMH has funded Johns 

Hopkins University and partners to test the effectiveness of an intervention to help 

people with serious mental illness who are overweight or obese to lose weight and keep 

it off. The institute has also funded the Technical Assistance Institute for Intellectual 

Disabilities in Dexter, Oregon, to develop an interactive computer-based CD-ROM 

HIV/AIDS prevention curriculum for adult women with mild intellectual disabilities. 

l. National Institute of Nursing Research 

The National Institute of Nursing Research (NINR) supports clinical and basic research 

to establish a scientific basis for the care of individuals across their lifespan. Research 

focuses on health promotion and disease prevention, quality of life, health disparities, 

and end-of-life care. 

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NINR supports research that will, among other things, “elucidate mechanisms 

underlying disparities and design interventions to eliminate them, with particular 

attention to issues of geography—rural and remote settings—minority status, 

underserved populations, and persons whose chronic or temporary disabilities limit their 

access to care.”420 The institute recently awarded a grant to the University of Texas at 

Austin to examine how white and Hispanic women between the ages of 55 and 75 

developed mobility impairments, and to study the impact of their disabilities on their 

lives. The goal of the research is to help prepare the health care system to address the 

age-related issues faced by people with disabilities and to understand the reasons for 

health disparities within the study group. 

11. Allied Initiatives That Promote Health, Health Care, and Wellness for People 

with Disabilities 

a. Institute of Medicine 

The Institute of Medicine (IOM), established in 1970 under the charter of the National 

Academy of Sciences,421 provides independent, objective, evidence-based advice to 

policy makers, health professionals, the private sector, and the public. A nonprofit 

organization, IOM works outside the framework of Government to ensure scientifically 

informed analysis and independent guidance. 

The overarching critique of the health care system that emanated from the IOM’s 1996 

Quality Initiative bears directly on the health and health care experiences of people with 

disabilities. The initiative, which aimed to assess and improve the quality of health care 

provided in the United States, documented the depth and breadth of problems in the 

system. In its first phase, it reported that “the burden of harm conveyed by the collective 

impact of all of our health care quality problems is staggering.”422 It defined the scope 

and nature of the problem as one of overuse, misuse, and underuse of health care 

services. In the second phase of the initiative, IOM set forth a vision for the way in which 

the health care system and related public policy must undergo a radical transformation 

to close the chasm between high-quality care and the care that is generally provided in 

practice. Reports released during this phase, including “To Err Is Human: Building a 

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Safer Health System” in 1999 and “Crossing the Quality Chasm: A New Health System 

for the 21st Century” in 2001, “stressed that reform around the margins is inadequate to 

address system ills.”423

In response, IOM set forth six goals for improvement that are widely accepted by the 

health care community and that have specific resonance for people with disabilities. 

● Safety—avoiding injuries to patients from care that is intended to help them 

● Effectiveness—providing services based on scientific knowledge to all who 

could benefit and refraining from providing services to those not likely to benefit 

● Patient-centered care—providing care that is respectful of and responsive to 

individual patient preferences, needs, and values, and ensuring that patient 

values guide all clinical decisions 

● Timeliness—reducing waits and sometimes harmful delays for those who 

receive and those who give care 

● Efficiency—avoiding waste, including waste of equipment, supplies, ideas, and 

energy 

● Equitable care—providing care that does not vary in quality because of 

personal characteristics such as geographical location or socioeconomic status 

IOM has published other important reports that relate to health and health care for 

people with disabilities, including “Disability in America: Toward a National Agenda for 

Prevention” (1991); “Enabling America: Assessing the Role of Rehabilitation Science 

and Engineering” (1997); “Improving the Quality of Long-Term Care” (2000); “The 

Dynamics of Disability: Measuring and Monitoring Disability for Social Security 

Programs” (2002); “Workshop on Disability in America—An Update” (2005); “A New 

Look—Summary and Background Papers” (2006); and “The Future of Disability in 

America” (2007). In “The Future of Disability in America,” IOM firmly establishes 

disability as a demographic indicator rather than just the outcome of disease processes; 

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this is a sea change in how the agency understands the relationship of disability to 

health. 

IOM has also devoted significant resources to investigating health disparities among 

racial and ethnic minorities, poor people, and other disadvantaged groups in the United 

States. In a 2006 report, “Examining the Health Disparities Research Plan of the 

National Institutes of Health: Unfinished Business,” IOM examined the extent to which 

NIH has achieved a primary goal of the Minority Health and Health Disparities Research 

and Education Act of 2000 (P.L. 106-525)—”to ensure that NIH health disparities 

research is conducted as an integrated and inclusive field of study, rather than as an 

aggregate of independent research activities occurring in separate research 

domains.”424 The report assesses how well the “NIH Strategic Plan and Budget To 

Reduce and Ultimately Eliminate Health Disparities” provides necessary guidance and 

recommends ways to improve oversight and coordination of these research efforts.425

IOM reports: 

In Examining the Health Disparities Research Plan of the National Institutes of 

Health: Unfinished Business, the Institute of Medicine assesses NIH’s 

response to the 2000 law, focusing on the development and implementation of 

the Strategic Plan across NIH Institutes and Centers. The report examines the 

Strategic Plan for fiscal years 2002–2006 and the Plan for 2004–2008. Twentyseven Institutes and Centers (ICs), along with two NIH Offices, developed 

individual plans as part of the 2002–2006 NIH-wide Strategic Plan. These units 

are conducting and planning valuable health disparities research. At the same 

time, the impact of this work is being mitigated by a lack of coordination and 

limited strategic planning. In short, when it comes to addressing health 

disparities and fulfilling the promise of the 2000 law, NIH’s business is 

unfinished.426 

While the Minority Health and Health Disparities Research and Education Act aims 

primarily to address health disparities among racial and ethnic minorities—and indeed 

that is the interpretation of the act by most NIH institutes, centers, and offices—IOM 

makes the following recommendation in response to NIH’s implementation plan. 

National Center on Minority Health and Health Disparities [NCMHD] should 

consider the designation of additional health disparity groups based on an 

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informed process and developed criteria. It should promote development of, 

and access to, a registry of diseases and conditions for which disparities exist 

with regard to race, ethnicity, socioeconomic status, geographic locale, and 

other designated health disparity populations.427

By recommending that NCMHD consider designating additional health disparity groups 

for study, IOM recognizes that health disparities affect other groups in addition to racial 

and ethnic minorities, and makes the case for including research on health disparities 

experienced by people with disabilities. 

12. Examples of Federal Agency Leadership in Identifying Health Disparities 

Research Needs for People with Disabilities 

Against this complex backdrop, some interagency collaboration holds promise for 

increasing Federal agency attention to health disparities research for people with 

disabilities. For example, CDC produced a 2006 report entitled “Advancing the Nation’s 

Health: A Guide to Public Health Research Needs, 2006–2015,” which identifies 

research areas that should be addressed during the next decade by CDC and its 

partners, including a chapter on health disparities experienced by people with 

disabilities.428 The Federal Collaboration on Health Disparities Research (FCHDR), a 

collaboration of Federal agencies working to find solutions to eliminate health disparities 

through research, began operations in 2006 to explore, coordinate, and support 

innovative health disparities research and identify priorities for cross-agency 

collaboration. The Interagency Committee on Disability Research (ICDR) co-leads the 

FCHDR. The ICDR, led by the National Institute on Disability Research Rehabilitation, is 

charged with promoting coordination and cooperation among Federal departments and 

agencies conducting rehabilitation research programs. 

A number of agencies have undertaken important and even groundbreaking research, 

which underscores the need for further investigation into the reasons why people with 

disabilities experience health and health care disparities, problems accessing health 

care, and health inequalities, and why people with disabilities participate less than 

others in prevention programs. 

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C. A Summary of Key Federal Health Disparities Initiatives for People 

with Disabilities 

A 2006 ICDR study identified 119 Federal research projects or programs dealing with 

health disparities. In nearly all the projects and programs, the concept of people with 

disabilities as a group was either absent or unstated. Further, the leading Federal center 

on health disparities research—the National Center on Minority Health and Health 

Disparities—focuses primarily on health disparities within racial and ethnic minority 

populations, and only to a lesser extent on the other demographic groups. Thus far, 

people with disabilities have not been included in the work of the NCMHD. 

While research is indeed quite limited on health disparities for people with disabilities, 

several Federal agencies have supported such research and related initiatives, 

including CDC, the Agency for Healthcare Research and Quality (AHRQ), the National 

Institute on Disability Rehabilitation Research (NIDRR), and the National Institute of 

Dental and Craniofacial Research (NIDCR). The National Institute of Mental Health 

(NIMH) and the National Institute on Nursing Research (NINR) also have undertaken 

several projects. For example, CDC’s National Center for Chronic Disease Prevention 

and Health Promotion (NCCDHP) has supported the Rochester Prevention Research 

Center (RPRC) at the University of Rochester, which is developing a national center of 

excellence for health promotion and disease prevention research in people who are 

deaf or hard of hearing. The Disability and Health Team at the National Center on Birth 

Defects and Developmental Disabilities (NCBDDD) has asserted significant leadership 

by funding programs in 16 states to increase recognition within the public health 

community of health disparities experienced by people with disabilities. NCBDDD team 

also has undertaken eight research projects with a major emphasis on health promotion 

and disease prevention for women with disabilities. In addition, the team supports the 

National Center on Physical Activity and Disability (NCPAD) at the University of Illinois, 

Chicago, which serves as a national clearinghouse on physical activity for people with 

disabilities. 

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AHRQ carries out research under its “priority populations” program, which includes 

people with disabilities and individuals with special health care needs. The agency 

produces the “National Healthcare Disparities Report,” which includes a section on 

people with disabilities. Some examples of recent AHRQ health and health care 

disparities research include health disparities experienced by women with disabilities, 

depression among people with diabetes, ways to improve the health care experiences 

of people who are blind or have vision impairments, and translating and adapting the 

Consumer Assessment of Healthcare Providers and Systems (CAHPS) ambulatory care 

survey to collect information in American Sign Language (ASL) about the health care 

experiences of people who are deaf. 

In recent years, NIDRR has conducted substantial research related to health, health 

care, and health disparities for people with disabilities within its health and function core 

priority area. For example, the Health Disparities Project, a 5-year initiative launched by 

the Oregon Health and Science University (OHSU) in 2008, will review and synthesize 

health and health care access information for people with disabilities and will use 

NCBDDD Medical Expenditure Panel Survey (MEPS) data to analyze systemic, 

environmental, and individual factors that relate to health care access among people 

with certain disabilities and to determine models of health outcomes. An earlier project 

undertaken by OHSU is identifying strategies to overcome barriers that impede access 

by people with disabilities to routine health care, such as exercise, nutrition, pain 

management, and complementary and alternative therapies that promote health and 

wellness. The same project is developing improved measurement tools to assess the 

health and well-being of people with disabilities regardless of functional ability. A third 

OHSU project is developing a group therapy intervention to address the specific needs 

of women with physical disabilities who experience symptoms of depression. 

Several NIH institutes and centers include people with disabilities as a unique disparity 

population and undertake related research. Specifically, the National Institute of Dental 

and Craniofacial Research (NIDCR) broadly defines health disparities to include 

disability status and has developed and published a series of booklets on providing 

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dental care for people with developmental disabilities. In 2008, NIDCR launched a 

clinical research initiative to improve the oral health of special needs populations, and 

the institute has funded the University of California, San Francisco, to investigate oral 

health disparities in children with disabilities. 

The National Institute of Nursing Research (NINR), which supports clinical and basic 

research, focuses on health promotion, disease prevention, and health disparities, and 

identifies people with disabilities as a health disparity population. In 2008, NINR 

awarded a grant to the University of Texas at Austin to examine how white and Hispanic 

women between the ages of 55 and 75 developed mobility impairments and the impact 

of their disabilities on their lives. The goal of the research is to help prepare the health 

care system to address the age-related issues faced by people with disabilities and to 

understand the reasons for health disparities within the study group. 

D. Summary of Recent and Current Federal Efforts in Health Promotion 

and Disease Prevention for Women with Disabilities, People Who 

Are Blind or Have Vision Impairments, People Who Are Deaf or Hard 

of Hearing, and People with Intellectual and Developmental 

Disabilities 

1. Women with Disabilities 

AHRQ, CDC, NIDRR, the National Cancer Institute (NCI), and the National Institute of 

Mental Health (NIMH) have undertaken or supported recent research related to health 

disparities experienced by women with disabilities. CDC has undertaken a qualitative 

study to explore the barriers to breast cancer screening for women with disabilities and 

has developed and is testing the Right to Know campaign. NIDRR has supported 

research to develop group therapy interventions for women with physical disabilities 

who experience symptoms of depression. NCI supported research for a pilot study to 

develop and test methods of identifying women of screening age with physical and 

sensory disabilities, as well as a questionnaire to identify barriers in screening 

mammography for these women. NCI also funded a study on the effects of disability on 

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the diagnosis of breast cancer. NIMH has funded HIV/AIDS prevention curriculums for 

women with intellectual disabilities. 

2. People Who Are Blind or Have Vision Impairments 

AHRQ has supported research on methods to improve the health care experiences of 

people who are blind or have vision impairments and on creating an evidence base for 

vision rehabilitation. The National Eye Institute (NEI) supported a randomized clinical 

trial on the effectiveness of low vision rehabilitation services for adults with vision 

impairments. One goal of the project was to provide information that could assist the 

Centers for Medicare & Medicaid Services (CMS) in formulating policy on coverage of 

these services. 

3. People Who Are Deaf or Hard of Hearing 

AHRQ, NCI, and CDC have supported research projects related to people who are deaf 

or hard of hearing. AHRQ has supported research on translating and adapting the 

Consumer Assessment of Healthcare Providers and Systems (CAHPS) ambulatory care 

survey to collect information in ASL about health care experiences from people who are 

deaf. NCI has funded a program to expand the number of cancer education training 

videos available to the Deaf community in San Diego, California, and an immersion 

project to train 10 medical students from the University of California, San Diego, in basic 

ASL, Deaf culture awareness, and medical terminology in ASL, with a focus on cancerrelated issues. CDC has provided funding for the Rochester Prevention Research 

Center (RPRC) at the University of Rochester, which is developing a national center of 

excellence for health promotion and disease prevention research in persons who are 

deaf or hard of hearing. 

4. People with Intellectual and Developmental Disabilities 

In addition to programs of the Administration for Children and Families and the Health 

Resources and Services Administration (HRSA)—University Centers for Excellence in 

Developmental Disabilities (UCEDDs) and Leadership Education in 

Neurodevelopmental Disabilities (LEND)—the following Federal initiatives also promote 

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health for people with intellectual and developmental disabilities. The National Institute 

of Mental and Craniofacial Research (NIDCR) has identified people with disabilities as a 

disparities population, has developed and published a series of important booklets on 

providing dental care for people with developmental disabilities, and has funded an oral 

health disparities research project at the University of California, San Francisco. The 

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD) has funded 

projects intended to test the reliability and validity of various methods to assess the 

dietary intake of adults with significant cognitive impairments living in the community. 

The National Institute of Child Health and Human Development (NICHHD) has 

supported the University of California, San Francisco, in its exploration of transition in a 

diverse sample of families raising youth who are both medically fragile and 

developmentally disabled. The research investigates how services, programs, and 

resources available through schools affect family planning and decision making. 

NICHHD has also supported Oregon Health and Science University to test the efficacy 

of a health promotion intervention for people with intellectual disabilities. 

5. Effectiveness of Federal Efforts at Health Promotion and Disease Prevention 

for People with Disabilities 

Although it is difficult to determine with any certainty the effectiveness of Federal efforts 

at disease prevention and health promotion for people with disabilities, particularly in 

terms of reduced health disparities or improved health status, the midcourse review for 

“Healthy People 2010” reported some related progress. At that time, new data had 

become available on several key indicators since “Healthy People 2010” was launched 

in 2000. People with disabilities are currently represented in 207 of the 467 objectives 

that span 21 of 28 “Healthy People 2010” focus areas. However, when “Healthy People 

2010” was implemented, data on people with disabilities were available for only 88 of 

those 207 objectives. “Healthy People 2010” undertook a midcourse review that 

revealed some preliminary information on the extent to which objectives are being met. 

For example, in Focus Area 6, “Promote the health of people with disabilities, prevent 

secondary conditions, and eliminate disparities between people with and without 

disabilities in the US population,” the midcourse review provides new data comparing 

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populations within the disability community that address both quality of life and health 

disparities. Disparities are documented between people who have disabilities and those 

who do not, as well as among subgroups based on education, income, gender, and 

ethnicity. Improvements are shown in several areas, including an increase in inclusion 

of people with disabilities in national and state surveillance, a reduction of the number of 

adults with disabilities living in congregate care facilities, and an increase in the number 

of children with disabilities included in regular education programs. However, according 

to the midcourse review, the explanation for this improvement cannot be attributed to 

any particular programmatic intervention. The review suggests that implementation and 

enforcement of Federal disability rights laws, improved public awareness of disability, 

and increased accessibility, including public transportation, may be contributing factors. 

While data may be limited on the effectiveness of the Federal effort at health promotion 

and disease prevention for people with disabilities, it would be important not to overlook 

other influences that have effectively increased attention to these issues in recent years. 

In addition to the redefinition of disability that appears in “Healthy People 2010,” reports 

issued by the Surgeon General—including “Closing the Gap” and “Call to Action”—as 

well as the 2007 IOM report “The Future of Disability in America,” have helped to sound 

a clarion call for attention to disability status as a bona fide demographic indicator and 

on the specific health and health care needs of people with disabilities. 

E. Conclusion and Recommendations 

The extensive network of Federal programs that provide health care and prevention 

services to people with disabilities (e.g., Medicare, Medicaid, SCHIP, Title V) serves as 

a critically important safety net for many, including children and adults with disabilities. 

Some other HHS agencies and programs, such as MCHD’s LEND program, have 

established unique health delivery models for certain people with disabilities. However, 

health disparities research has been limited. 

The Federal biomedical research effort has historic roots in a philosophy of disability 

and disease prevention, and most current biomedical research still aims to achieve 

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these goals. However, a recent shift has taken place that acknowledges the fact that 

some people living with disabilities experience poorer health than the general population 

and that research is required to understand the causes of these health disparities. While 

this shift is in evidence in Focus Area 6 of “Healthy People 2010” and in seminal reports 

by the Surgeon General and the IOM, people with disabilities are still largely excluded 

from the major Federal health disparities research initiatives. As a result, there has been 

limited investigation that illuminates the reasons for health disparities in this population. 

Moreover, almost no resources have been devoted to exploring the extent to which 

barriers in the built environment and the lack of accommodation in health care delivery 

settings (e.g., sign language interpreters, accessible examination equipment, additional 

time for examinations, and consultations for complex health matters) contributes to 

health disparities experienced by people with disabilities. 

Against this backdrop, a few Federal agencies have supported and undertaken 

groundbreaking and innovative research and projects aimed at understanding the 

causes of health disparities among people with disabilities. These projects promote 

health and wellness within specific populations, and acknowledge and explore the role 

that environmental factors play in health and health outcomes for people with 

disabilities. While it is too soon for these programs to report improved health outcomes 

for people with disabilities, they are an important, although modest, beginning. Further, 

several Federal interagency collaborations hold some promise for increasing the 

visibility of health issues for people with disabilities in future Federal research initiatives, 

provided they receive adequate funding. 

RECOMMENDATION:

Congress should amend the Minority Health and Health Disparities Research and 

Education Act to broaden the definition of “health disparity population” found in 42 

U.S.C. § 287c-31(d) to encompass “populations for which there is a significant 

disparity in the quality, outcomes, cost, or use of health care services or access to 

or satisfaction with such services as compared to the general population,” as 

specified in 42 U.S.C. § 299a-1(d). This will enable people with disabilities to be 

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included in the health and health care disparities research, program development, 

professional training, health promotion, and clinical interventions conducted and 

supported by the National Center on Minority Health and Health Disparities, as well 

as other Federal agencies that are currently engaged in health disparities research 

and activities on behalf of racial and ethnic minorities and other geographic and 

population groups. 

RECOMMENDATION:

Congress should create and fund an Office of Disability and Health in the Office of 

the Director at the Centers for Disease Control and Prevention to mandate and 

oversee integration of disability issues into all CDC programs. 

RECOMMENDATION:

Congress should increase funding for the Interagency Committee on Disability 

Research of the National Institute on Disability and Rehabilitation Research in 

order to (1) vest it with sufficient resources and authority to fulfill its mandated 

research coordination role and (2) expand its role to include collaboration with 

other agencies, including Centers for Disease Control and Prevention (CDC), 

Agency for Healthcare Research and Quality (AHRQ), and the Department of 

Health and Human Services (HHS) Office on Disability, to identify research areas 

related to health, health care, and health disparities that lend themselves to 

interagency collaboration. 

RECOMMENDATION:

Federal agencies concerned with disability and health—including the Department 

of Health and Human Services (HHS), the Agency for Healthcare Research and 

Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), the 

National Institute for Disability and Rehabilitation Research (NIDRR), and the 

Access Board—should develop mechanisms to undertake research that 

investigates the economic and systemic implications, as well as the impact of 

barriers to health care access, on people with disabilities, and the potential for 

enhanced efficiency and cost savings through improved access.429

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RECOMMENDATION:

The Health Resources and Services Administration (HRSA) should designate 

people with disabilities or subgroups of the population as medically underserved 

populations. Such a designation will open opportunities for physicians, physician 

assistants, and dentists who choose to provide health care services for a 

significant number of patients with disabilities in their practices to apply for Federal 

student loan forgiveness.430

RECOMMENDATION:

The Institute of Medicine (IOM) of the National Academies of Science should 

include the topic of health disparities experienced by people with disabilities in its 

workshops and roundtables on health disparities. IOM should expand on 

recommendations presented in its 2006 report critiquing the National Institutes of 

Health (NIH) interagency disparity activities to include a recommendation that 

disability health disparities be acknowledged as a national problem. The IOM 

should also urge the development programs and strategies to reduce health 

disparities for people with disabilities. 

RECOMMENDATION:

The U.S. Surgeon General should lead an effort with other Federal agencies 

concerned with health care quality for people with disabilities—including the 

Department of Health and Human Services (HHS) Office of Disability, the Centers 

for Medicare & Medicaid Services (CMS), the National Institute on Disability and 

Rehabilitation Research (NIDRR), the Agency for Healthcare Research and Quality 

(AHRQ), the Access Board, and the Administration for Children and Families 

(ACF)—in a joint project that will establish principles of universal design for health 

care facilities and programs. Goals and objectives should be established and key 

stakeholder actions identified. Drawing on the well-established principles of 

universal design for the built environment, this collaboration should bring together 

Federal agency experts, disability and health policy researchers, leading disability 

and health practitioners (e.g., physicians who specialize in caring for women with 

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disabilities, people who are deaf or hard of hearing, and people with intellectual 

and developmental disabilities, as well as vision rehabilitation experts), and people 

with disabilities to participate in the process. The Surgeon General should publish 

a report of findings that builds on previous publications, such as “Call to Action To 

Improve the Health and Wellness of Persons with Disabilities,” “Closing the Gap: A 

National Blueprint To Improve the Health of Persons with Mental Retardation,” and 

“Report of the Surgeon General’s Conference on Health Disparities and Mental 

Retardation.” 

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CHAPTER 5. Availability and Accuracy of Federal 

Health Data Concerning Americans with 

Disabilities 

Shaping health research goals and health care policy and programs so that the specific 

needs of people with disabilities are identified and included depends significantly on 

current and accurate health data. This chapter reports on progress toward meeting this 

goal. 

A. Use of Databases by Sponsoring Agencies To Understand the 

Health Care Experience of People with Disabilities 

Although no dataset currently meets all information needs, several surveys have either 

the current ability or the strong potential to provide much of the data necessary to 

assess health care utilization and the treatment experience. The sponsoring agencies 

have used the data for some evaluation of health care utilization by people with 

disabilities, but they have not produced analyses to the fullest extent possible. 

1. Availability of Information 

Most of the major datasets enable some identification of people with disabilities; some 

datasets include multiple indicators. The Medical Expenditure Panel Survey (MEPS), 

National Health Interview Survey (NHIS), Behavioral Risk Factor Surveillance System 

(BRFSS), American Community Survey (ACS), and Medicare Current Beneficiary 

Survey (MCBS) all use indicators of activity limitation. In its core component, asked of 

all respondents, BRFSS uses one broad question that asks whether any activities are 

limited because of physical, mental, or emotional problems; a second question asks 

about the use of assistive devices. MEPS and NHIS use a question that includes 

several activities that comprise the Activities of Daily Living (ADL) scale, and another 

question that puts together in a single phrase some of the components of the 

Instrumental Activities of Daily Living (IADL) scale. A similar question is optional in 

BRFSS. ACS contains four questions about activity limitations: one about cognitive 

limitations, one about walking or climbing stairs, one about the ADLs of bathing or 

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dressing, and one about doing errands outside the home alone. Two additional 

questions ask separately about hearing and vision impairment. Additional questions in 

MEPS, NHIS, BRFSS, and MCBS ask about the presence of a health condition that 

limits work, other daily activities, or social activities (for BRFSS it is an optional 

question, that is not regularly used). There is no disability indicator in the CAHPS core 

survey module; the disability questions are part of the optional supplemental questions 

list. Despite Federal agency oversight and technical support, the costs of conducting a 

BRFSS or CAHPS is borne by the state or private organizations that have questions or 

data needs that these surveys can address. Both BRFSS and CAHPS are structured to 

collect a core of data common across all administrations of the survey, but also enable 

questions that can meet state or local or other very specific needs, to be added at the 

state or private agency’s expense. 

The same basic health care information that is collected for people without disabilities is 

also available for people with disabilities in the MEPS, NHIS, and BRFSS datasets. The 

presence of a disability question in the core components of these surveys means that 

distributions for people with disabilities can be developed. For all respondents, 

information is available about whether there is a usual source of care and whether there 

is insurance to pay for the care. The surveys also collect information on whether a 

person has had a regular checkup and a mammogram, Pap test, or prostate-specific 

antigen (PSA) screen. Data are also collected on exercise, obesity, and smoking, and 

whether the respondent’s physician has talked about these issues. All respondents are 

asked if they have ever had to delay, postpone, or go without care. 

Satisfaction with the health care provider and the health care delivery experience is not 

asked directly in NHIS, MEPS, or BRFSS. Satisfaction information is available through 

the Medicare Current Beneficiary Survey (MCBS), which does enable a comparison of 

Medicare beneficiaries with disabilities to beneficiaries without disabilities. Another 

source of data on satisfaction and aspects of patient treatment in the health care 

encounter is the Health Plan Survey 4.0 of CAHPS. The satisfaction questions are part 

of the core survey; however, there is no disability question in the core. 

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2. Data Utilization 

All the agencies that sponsor large surveys release reports derived from their data. 

Most issue a summary report that consists of tables that cross demographic 

characteristics by the other health and health care indicators on which they have data. 

Some of these reports are complete documents that can be obtained in print or 

downloaded from the agency’s Web site. In other cases (for example, much of the 

BRFSS), the information is available as downloadable individual tables in HTML format 

or PDF files. Agencies also issue shorter reports of analyses by agency researchers on 

specific subtopics. Since the agencies make the data available for other researchers, 

they sometimes provide, on the agency Web site, a list of links to these external 

publications. 

Regular agency summary reports use race, ethnicity, gender, and age as the main 

demographic categories for which health and health care experience are presented. 

They may also use income, health insurance type, or education. Where there is a 

disability variable, it is generally used as an outcome variable, not one of the 

demographic characteristics. The NHIS summary report produced annually by NCHS 

contains tables with activity limitations and ADL and IADL limitations as an outcome 

variable crossed with the demographic variables. However, for the table describing 

levels of health care access by demographic characteristic (table 15 in the 2006 report), 

disability is not one of the characteristics.431 The AHRQ reports of MEPS data do not 

report data findings by disability, even though the data exist to do so. CDC makes the 

data from the BRFSS available through the Web Enabled Analysis Tool (WEAT), which 

helps users create their own tables from BRFSS data. WEAT options do not include the 

disability questions, so users cannot create tables that cross disability with other BRFSS 

questions. The only statistic available is the simple distribution of answers to the 

disability question. CDC issues a brief report entitled “At a Glance,” in which it describes 

disability as a health outcome, not as a population group, and states that the BRFSS 

can be used to 

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Determine high-priority health issues, detect emerging health issues, and 

identify populations at highest risk for illness, disability, and death, by analyzing 

data according to respondents’ age, sex, education, income, and 

race/ethnicity.432

CAHPS does not include the disability question as a core question; so its regular report 

contains no indication of how people with disabilities rate their health care experience. 

No published reports were located that used data from the supplemental questions to 

examine the assessment of their health care by people with disabilities. Before CAHPS 

released its question module, People With Disability Impairments (PWMI), one 

publication used CAHPS with specially developed and tested questions for people with 

physical disabilities.433

While the sponsoring agencies generally do not use disability as a population 

characteristic in their regular reporting, disability is used in targeted reports and smaller 

focused analyses produced from the data. In some instances, a researcher from the 

Federal agency is the author of the report; in other instances, it is an external 

researcher. (See table 1, appendix C, for a list of selected publications that have used 

the datasets for analysis of health care utilization and experiences of people with 

disabilities.). One example of a special report is the large report on the health and 

wellness of people with disabilities that NCHS released in July 2008434 based on the 

NHIS. AHRQ’s “National Healthcare Disparities Report 2007” also included three tables 

that addressed health care behavior for people with disabilities.435

B. Gaps in and Problems with Data Sources’ Ability or Utilization for 

Providing Information About the Health Care Experiences of People 

with Disabilities 

Even though the several datasets, if considered as a group, can provide useful and 

appropriate information, serious gaps remain. The following are the most significant 

gaps and problems. 

● Absence of data from patients about the delivery of care including physical 

access, programmatic access, and communication access 

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● Absence of data from providers about their ability and preparation to provide 

health care to people with disabilities that is structured for physical, 

programmatic, and communication access 

● Absence of information about providers’ disability cultural competence 

● Survey sampling frames that do not include persons living in group quarters, 

and samples that are too small to study the circumstance of subgroups of 

people with disabilities 

● Data collection methods that exclude people who are deaf, have other 

communication disabilities, or who do not have telephones 

● Regular agency reporting of health care utilization, health care experience, and 

health and wellness behavior that does not report on people with disabilities as 

a population group and does not report on these health care issues for people 

with disabilities crossed by other demographic characteristics (such as race or 

gender) 

● consistent, reliable, and valid indicator for disability that is a part of the core 

demographic questions in all surveys 

● Consistent, reliable, and valid survey questions to identify people with 

intellectual, cognitive, or psychiatric disabilities. 

1. Absence of Information About Physical Access, Programmatic Access, and 

Communication Access 

NHIS, MEPS, BRFSS, and ACS—the surveys with the best prospects of being usefully 

generalized nationwide—do not ask questions that can provide information about 

physical, programmatic, or communication access for people with disabilities. For 

example, a question in MEPS that asks why people go without or delay care is not 

structured to allow respondents to indicate that delay was due to problems of access. 

Respondents are offered a set of possible reasons (e.g., cost, insurance coverage, 

could not take time from work, or could not find child care), but the categories do not 

include a reason related to physical or programmatic access barriers. 

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The only survey that explicitly asks about physical, programmatic, and communication 

access to the provider’s office is CAHPS, and these questions are in optional CAHPS 

supplemental item sets. The set for People with Mobility Impairments includes questions 

about accessible exam tables, scales, and restrooms; coverage of mobility equipment 

and repair through a health plan; physician attention to pain and fatigue; and access to 

speech and physical therapy. Other adult supplemental items to CAHPS, beyond the 

three activity limitation questions similar to those in NHIS, include questions about 

access to mental health care, doctor’s understanding of how a chronic health condition 

affects day-to-day life, coverage for medical equipment and home health care, need for 

and availability of an interpreter (including a sign language interpreter), and willingness 

of the physician to engage in joint decision making. Two additional efforts are 

underway to develop and field test additional CAHPS survey items for coordination of 

care436 and to develop and test a version of CAHPS for use with people who are 

deaf.437 Other aspects of health care utilization and experience—such as the provider’s 

ability to offer alternative formats for people with vision impairment, willingness 

additional time, or efforts to provide other access—are not addressed by any of the 

major data sources. 

2. Absence of Data on the Nation’s Health Care Providers That Can Profile Their 

Ability and Preparation to Deliver Accessible Health Care 

There is no regularly conducted, nationally representative survey of health care 

providers that can provide information about the accessibility of the health care system 

to people with disabilities. Currently, there is no way to estimate from Federal data what 

percentage of physicians’ offices have height-adjustable exam tables. Surveys of 

patients with disabilities may allow estimates of the percentage who were examined on 

a table or received a mammogram, but surveys cannot determine the percentage of 

doctors who were able or willing to provide accessible care, since patients may all have 

seen the same few doctors who did provide accessibility. 

To date, accessibility surveys of physicians have been small or local.438 Mail surveys 

have suffered from low response rates. Iezzoni and O’Day report that their plan to 

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systematically interview physicians and visit practice sites in a large, multisite health 

care provider was aborted because they could not obtain cooperation from the 

provider.439 They were able to speak with a convenience sample of approximately 20 

people who were physicians, nurses, or office staff from a couple of practices. There 

have been some small-scale efforts to survey health plans and rate the accessibility of 

health care settings, using a site visit or self-administered instrument with assessment 

tools that include attention to architecture; equipment; office procedures for arranging, 

conducting, and completing medical encounters; and methods of communicating with 

patients.440 These efforts are important and worthy, and they can serve as models for 

larger, more nationally representative data collection efforts. However, such efforts are 

no substitute for a national profile of health care providers or for regular data collection 

to quantify current status and progress over time. 

3. Absence of Information About Providers’ Disability Cultural Competence 

The Surgeon General’s report “Call to Action To Improve the Health and Wellness of 

Persons with Disabilities” identifies the issue of disability cultural competence, noting 

that 

. . . many physicians have had limited experience during medical training in 

treating patients with disabilities. As a result, many are unable to meet the full 

range of health care needs presented by a person with a particular disabling 

condition, much less to evaluate and treat that individual in a culturally 

appropriate and sensitive manner.441

While the issue is defined, its prevalence is not empirically measured, nor is there 

detailed information to point out areas most in need of attention or to allow monitoring of 

change in response to remedial strategies. No survey explicitly collects information 

about a provider’s competence to provide care to someone with a disability. 

Several surveys (MEPS, CAHPS, and MCBS) regularly ask respondents whether they 

feel respected by their physicians, whether their health care providers provide 

information about care in an understandable manner, and whether the patient’s views 

are taken into consideration in the process of selecting a course of action for health 

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conditions. These questions, combined with the ability to determine which respondents 

are people with disabilities, provide indirect information about the disability cultural 

competence of health care providers. However, these questions do not tap the kinds of 

health care experiences described in qualitative interviews with people with 

disabilities442 or the problems described in the Washington Hospital Center lawsuit.443

4. Survey Sampling Frames That Do Not Include People Living in Group 

Quarters 

Most of the major health surveys do not include people living in institutional settings. 

Thus, information from people of all ages who reside in a group setting is missing from 

national assessments. And these individuals are more likely to have having disabilities. 

Among the group quarters usually not included in surveys are nursing homes, board 

and care homes, adult group homes, group foster homes, juvenile residential facilities, 

state schools or other residential settings for young people with intellectual disabilities, 

and prisons (data indicate that a substantial percentage of prisoners have psychiatric or 

cognitive disabilities).444 The sampling frames of NHIS, MEPS, and BRFSS are 

constructed to represent the noninstitutionalized U.S. population. The community 

sample of MCBS is a sample of Medicare beneficiaries living in noninstitutional settings. 

There is a sample of Medicare beneficiaries living in nursing homes; however, facility 

staff complete the survey on behalf of these individuals, thus limiting the range of 

information that can be collected. MCBS surveys only people who have health care 

coverage under Medicare, so people with private coverage, Medicaid, or no health care 

coverage are not included in the survey. 

Until recently, the American Community Survey (ACS) also sampled only people in 

noninstitutional settings. However, starting in 2006, ACS included people living in group 

quarters, including prison, in the sample. The ACS has implemented a data collection 

strategy that includes a self-administered interview, telephone interview, or in-person 

interview (including use of a proxy), offering the possibility that respondents whose 

disabilities might affect inclusion in a survey with a single data collection technique will 

be surveyed. The ACS does not, however, ask questions about health care; so its utility 

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is restricted as a means of monitoring the health care experience of people with 

disabilities. 

5. Sample Sizes Too Small To Allow Analysis of Subgroups of People with 

Disabilities 

The strength of several of the national datasets is that they have large samples and 

provide data that represent the U.S. population. NHIS and MEPS use a complex 

random sampling design with an oversample of racial and ethnic minority groups to 

facilitate analysis of population subgroups. Despite relatively large numbers of 

respondents, the samples are too small to allow detailed analysis of people with low 

prevalence impairments. Only the NHIS-D, conducted in 1994 as a special supplement 

to the NHIS survey, with a followback survey of people with disabilities who were 

identified via the main survey, offered a larger sample of people with disabilities in the 

context of a regular national survey. BRFSS and CAHPS depend on state and private 

sector partners, who decide to mount the survey and which questions to use. Several 

states have used the BRFSS supplemental questions regarding the health care 

experience of people with disabilities. However, the resulting information, is 

generalizable only at the state and not at the national level. 

CAHPS presents a sampling frame problem similar to that of BRFSS; samples may only 

represent the population for the location where the disability questions are utilized. 

While CAHPS has approximately 100,000 respondents each year, it does not offer a 

representative national sample. The CAHPS dataset is built from surveys conducted by 

state Medicaid plans, commercial insurance plans, and Medicare. The tie to the 

Healthcare Effectiveness Data and Information Set (HEDIS) means that a large number 

of the commercial plans are now using the CAHPS instrument and submitting the 

resulting data for inclusion in the national dataset. CAHPS contains a large number of 

surveys of people with some kind of health care coverage, but it is not a random sample 

of the U.S. population. 

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6. Data Collection Methods Exclude Some People with Disabilities 

Some of the large surveys are conducted in person, using computer-assisted personal 

interviewing (NHIS, MEPS, MCBS, ACS in part); some are telephone interviews 

(BRFSS, ACS in part, CAHPS in part); and some are self-administered forms, filled out 

by respondents (ACS, CAHPS). Each of these collection methods may work for some 

people with disabilities and not for others. A particular problem is the reliable collection 

of information from people who are deaf. While self-administered surveys do not 

exclude people who deaf who are English-literate, both telephone and in-person 

surveys are problematic. Not only is there the obvious exclusion of people who cannot 

hear and speak on the telephone, but there is also the problem of translation. ASL is not 

the same as English. Translating an in-person survey into ASL should receive care 

equal to that given to translating the survey into Spanish. To date, this has not been 

widely done. However, CDC has funded the National Center for Deaf Health Research 

at the University of Rochester Medical Center to adapt the BRFSS (and the Youth Risk 

Behavior Surveillance System, a school-based survey) to ASL and English-based sign 

language, add deaf-specific questions, and administer the survey.445

7. Agencies Do Not Include Disability As a Population Characteristic in Their 

Regular Reporting of Health Information, Health Care Utilization, or Health 

Care Experience 

Even where the datasets contain questions that allow researchers to identify people 

with disabilities, the sponsoring agency regularly reporting on such topics as health 

disparities, primary and preventive care received, and factors associated with 

problematic care do not report this information for people with disabilities. As a 

consequence, information is not readily available to state public health agencies or 

others interested in tracking the access to care and the quality of care received by 

people with disabilities. When agencies report about the health care experience of 

demographic groups across two categories (e.g., Hispanic men and Hispanic women), 

they do not use disability as one of the demographic subcategories. Other researchers 

have used the data for analyses using disability as a population characteristic and found 

health disparities for the benchmarks used for other groups (e.g., smoking, obesity, 

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alcohol dependence, lack of exercise). Disparities also have been found in delay or 

postponement of care, satisfaction with care, and receipt of some preventive care (e.g., 

mammograms and Pap tests). Despite the fact that people with disabilities are 

considered a priority population for AHRQ’s health disparities monitoring, disability is 

not included as a population demographic in either the annual NHIS report or the 

standard MEPS report. 

8. There Is No Consistent Definition of Disability Across All the Surveys 

All the major health surveys are now using an activity limitation framework that 

separates ability to work from the indicator of disability, but the way in which they 

implement this indicator varies. There is movement toward a single consistent set of 

questions based on the American Community Survey (ACS) disability questions. 

According to congressional testimony by Susan E. Dudley of the Office of Management 

and Budget, the ACS disability questions have been adopted by the Bureau of Labor 

Statistics for the Current Population Survey (CPS) and by the National Crime 

Victimization Survey (NCVS); work is also under way with NCHS to incorporate a 

version of the ACS questions into the NHIS.446 In a separate effort, AHRQ convened a 

work group to develop a question or brief set of questions that could be consistently 

used across surveys to indicate disability. The recommendation from this task force was 

a variable with three categories: no disability, basic actions difficulties, and complex 

activity limitations. This disability variable was built from several activity limitation 

questions, particularly those that use elements of ADL and IADL. The AHRQ “National 

Healthcare Disparities Report 2007”447 and “Disability and Health in the United States, 

2001–2005”448 by the National Center for Health Statistics use this disability variable. 

The three categories are defined as follows: 

● Basic actions difficulties: limitations in mobility or other basic person-level 

functioning 

● Complex activity limitations: limitations, in interaction with the environment, in 

ability to participate in community life 

● No disability: neither basic nor complex activity difficulties or limitations 

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Perhaps the joint project described by Dudley will bring further convergence for the 

indicator of disability. However, the two questions in BRFSS are not specific enough to 

allow the AHRQ formulation to be created from the BRFSS survey data, nor are the two 

questions similar to the set in ACS. Beyond that, when there is interest in studying 

subgroups of people with disabilities, the survey questions do a poor job of identifying and 

distinguishing people with intellectual disabilities and people with psychiatric disabilities. 

9. Availability and Accuracy of Federal Health Data Concerning Access to 

Wellness and Prevention Services and Their Relative Long-Term Costs and 

Benefits for Americans with Disabilities 

The wellness and prevention services tracked by the Federal Government as 

benchmarks for the general U.S. population include screening for conditions and 

behaviors that place people at risk for serious health problems and measures of the 

receipt of preventive medical services, screenings, and examinations. The indicators 

tracked for “Healthy People 2010,” along with several additional indicators collected 

regularly in the major health surveys include the following: 

● Health risk behaviors/indicators: smoking, obesity, excessive alcohol use, high 

cholesterol, hypertension, and lack of exercise 

● Preventive medical exams, screenings, and services: general physical exam, 

Pap test, mammogram, PSA test, flu shot, colonoscopy, cholesterol test, and 

doctor discussion and referral for services for smoking cessation, weight loss, 

exercise, alcohol treatment, and dietary and drug treatment for cholesterol 

“Healthy People 2010” includes objectives for people with disabilities for the top 10 health 

indicators. The top 10 list is health care access, immunization, overweight and obesity, 

physical activity, tobacco use, mental health, substance use, sexual behavior, injury, and 

environmental quality.449 Data are not regularly collected on sexual behavior, injury, and 

environmental quality for people with disabilities. However, health care access, 

immunization, physical activity, obesity, substance use, and tobacco use can be tracked 

using the NHIS, MEPS, and BRFSS datasets, all of which include a disability question in 

their cores. While the data collected using these three surveys can identify people with 

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disabilities (the exact wording of the disability questions vary), the regular reporting of 

health and wellness benchmarks by the sponsoring agency does not present the status of 

people with disabilities on these indicators. Thus, health and wellness can be tracked 

using some of the same indicators that are used for people without disabilities, but since 

this information is not regularly included in the agency reports, it is not easily available in 

public documents. (The impact of the data collection methodology on data quality and 

accuracy, and the manner in which sponsoring agencies use and report on the health and 

wellness indicators, is described in more depth in the previous section, as part of the 

discussion of variables and datasets, generally.) 

Beyond the examination of whether the standard health and wellness indicators are 

collected for people with and without disabilities is the issue of whether the indicators 

applicable to the general population are sufficient to track wellness and prevention for 

people with disabilities. Chapter 6 of “Healthy People 2010,” titled Disability and 

Secondary Conditions, lists additional objectives, including the following: 

● Objective 6-10: Increase the proportion of health and wellness and treatment 

programs and facilities that provide full access for people with disabilities. 

● Objective 6-11: Reduce the proportion of people with disabilities who report not 

having the assistive devices and technology needed. 

● Objective 6-12: Reduce the proportion of people with disabilities reporting 

environmental barriers to participation in home, school, work, or community 

activities. 

CAHPS has the potential to address objective 6-11 through its supplemental questions. 

The other two objectives cannot currently be tracked via the major datasets. 

Not only is there no regular measurement of facility characteristics associated with 

access, but there are no regular sources of data to measure participation in wellness 

programs such as exercise classes, smoking cessation programs, or self-help or 

AA-type groups for substance abuse. Surveys also do not ask people with disabilities 

199 
about their experiences with access or environmental barriers that may affect 

participation in wellness programs or activities at home, in school, or in the community. 

The potential to assess the long-term costs and benefits of access to wellness and 

prevention programs requires (1) consistent, appropriate measures over time and (2) 

research that documents costs and the link between wellness or prevention programs 

and health benefits for people with disabilities. 

Agreement on an indicator of disability, and use of that indicator in every major health 

survey over time will produce over time the ability to track for people with disabilities the 

prevalence of the wellness and prevention benchmarks used nationally for the 

noninstitutionalized population. As indicated above, no single indicator of disability is 

currently used in all surveys, but ongoing activities suggest progress toward this goal. Once 

a consistent definition is in place, it will require a number of years of data before it will be 

possible to assess long-term prevalence rates for the wellness and prevention benchmarks. 

In their discussion of methodology for assessing the long-term costs and benefits of 

health prevention interventions, Stone and colleagues450 note that intervention costs are 

commonly incurred at the beginning of an intervention, with the benefits spread out into 

the future. The financial costs of implementing the program are not difficult to identify; 

the economic costs (e.g., opportunity costs) are somewhat more difficult to calculate. 

However, the calculation of long-term benefits for people with disabilities from 

participation in wellness and prevention programs depends on the presence of studies 

that have measured outcomes. Currently, few studies measure the outcomes of 

interventions for smoking cessation, increased mammography screening, exercise, or 

other programs for people with disabilities. Nor do studies show whether the 

participation of people with disabilities in programs for broader populations were 

affected by access issues. If the outcomes of, for example, increasing exercise or 

reducing tobacco use are the same for people with disabilities as for people without 

disabilities, we can use the same estimates about increased longevity or fewer days of 

restricted activity that are used to estimate long-term benefits for the general population. 

However, if interactions with disabilities cause different outcome rates on these 

200 
indicators, separate long-term benefits should be calculated. A clear understanding of 

impact will require further research on the outcomes of health and wellness programs 

that include people with disabilities. 

C. Conclusion and Recommendations 

There is good news, but challenges remain with respect to the availability and accuracy 

of data to monitor the health status, health care utilization, and health care delivery 

experiences of people with disabilities. There appears to be progress in the 

development and use of a consistent indicator of disability, and there are a number of 

recent reports on health in which disability is used as a population variable. Attention 

and acknowledgement of the importance of collecting data about the health care 

experience of people with disabilities is growing, and some promising research is under 

way to develop survey questions that will gather previously unmeasured information 

about the health care experience of people with disabilities. Moreover, some surveys 

are developing and implementing data collection methods that will result in the inclusion 

of people with disabilities who were previously excluded from surveys. 

Important challenges remain, however. For example, questions about the health care 

delivery experience should be moved from the optional supplemental parts of surveys to 

the regularly asked core. The number of surveys that do not exclude people in group 

quarters or without telephones from samples should be expanded, and better survey 

indicators for people with cognitive, intellectual, and psychiatric disabilities should be 

developed. Methods should be designed to ensure that sponsoring agency reports 

include disability as a population variable in data analysis and the reporting of survey 

findings. Also, a means should be developed for collecting information about health care 

providers with respect to physical, programmatic, and communication access to health 

care, including information from the providers themselves. 

RECOMMENDATION:

A regularly conducted national survey of physicians and other health care providers 

should be developed. Such a survey could begin with Medicare and Medicaid 

201 
providers, because they receive Federal financing for their services. However, the 

ultimate goal would be to have a nationally representative sample of all providers. 

Information should be collected from providers on (1) demonstrated physical 

accessibility, (2) demonstrated capacity to provide programmatic accessibility, (3) 

level of knowledge and confidence in treating patients with disabilities, and (4) 

disability training and cultural competency of office staff. (See chapter 5.) 

RECOMMENDATION:

Ongoing research activities must continue to develop a valid and reliable set of 

survey questions that identify people with disabilities, and these questions must be 

included in all regularly conducted national surveys. The standardized questions 

should be included in the core of all surveys, but surveys that already contain 

additional data items should continue to use them, to permit more detailed and 

nuanced analyses. Specifically: 

• Behavioral Risk Factor Surveillance System (BRFSS) should include the 

standardized question set in its core (substituted for the two questions currently 

in its core). 

• The Consumer Assessment of Healthcare Providers and Systems (CAHPS) 

should add the standardized disability questions to its core. 

• The Medicare Beneficiary Survey (MCBS) has a number of disability indicator 

questions, but they should be part of the standardized set. 

RECOMMENDATION:

Reliable and valid questions that can identify people with intellectual and mental 

health disabilities should be developed and regularly used in major surveys. In 

addition, the major national surveys should develop and use, on a regular basis, 

questions that identify, in separate categories, people who are blind, visionimpaired, deaf, or hard of hearing. Such questions should be asked of all 

respondents, not just those over 40 years of age, as is currently the case for 

202 
questions concerning vision loss in Module 4 of the Behavioral Risk Factor 

Surveillance System (BRFSS). 

RECOMMENDATION:

Surveys that ask questions about access and utilization of care should provide 

answer options that enable respondents to indicate disability-related problems with 

access. For example, the reasons for delaying or going without care should include 

options about physician office equipment and other accessibility issues, and about 

physician disability competence and acceptance of patients with disabilities. 

Questions that can provide data with respect to policies for eligibility for use of 

public health programs and benefits are also needed. 

RECOMMENDATION:

The Agency for Healthcare Research and Quality (AHRQ) and the National Center 

for Health Statistics (NCHS) should include people with disabilities as one of the 

population groups in the tables that comprise the annual reports derived from the 

Medical Expenditure Panel Survey (MEPS) and National Health Interview Survey 

(NHIS) datasets. Data on people with disabilities should be crossed with the health 

care access indicators, and reporting should provide dual demographic status and 

access (e.g., access data for disability/gender; disability/race/ethnicity groupings). 

RECOMMENDATION:

Federal support is imperative for research to investigate the outcome of wellness 

and prevention programs and services for people with disabilities, and attention is 

needed in other wellness/prevention research to ensure that people with disabilities 

have access to such programs and services (with appropriate data collected about 

their experiences and outcomes).

RECOMMENDATION:

Incentives and directives are needed to increase the use of the existing optional 

disability modules or supplemental questions in the national surveys, especially for 

the Behavioral Risk Factor Surveillance System (BRFSS), the Medical Expenditure 

203 
Panel Survey (MEPS), the National Health Interview Survey (NHIS), and possibly 

the Consumer Assessment of Healthcare Providers and Systems (CAHPS). States 

should be directed to use the modules or questions on a periodic basis; funds as 

an incentive to implement should be offered to support their use. 

RECOMMENDATION:

Modules that ask about specific disability access issues should be developed. The 

Consumer Assessment of Healthcare Providers and Systems (CAHPS) Mobility 

Impairment module is a good example, but the module should be applicable more 

broadly and in more surveys. This would provide an alternative to mounting a 

national special survey. However, a survey such as the National Health Interview 

Survey-D (NHIS-D) should be conducted at a minimum once every 10 years. 

RECOMMENDATION:

Survey sampling and data collection should be designed to include people living in 

institutional settings and group quarters, especially in community-based group 

quarters. Surveys should be conducted in a manner that does not exclude people 

who do not communicate by telephone or do not have telephones. Translations for 

American Sign Language (ASL) should be made for the major surveys to ensure 

the inclusion of people who use ASL as their primary language. 

RECOMMENDATION:

Federal agencies that undertake health research for people with disabilities, such 

as the Agency for Healthcare Research and Quality (AHRQ), the Centers for 

Disease Control and Prevention (CDC), and the Administration for Children and 

Families (ACF), should undertake studies that document the extent to which the 

health care needs of women with disabilities, people who are deaf or hard of 

hearing, people with intellectual and developmental disabilities, and people who 

are blind or have vision impairments are being met. Such studies should use 

outcome-oriented approaches and will provide a foundation for developing 

crosscutting, universal quality-of-care guidelines. 

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CHAPTER 6. Summit on Health Care for People with 

Disabilities 

A. Overview 

NCD envisioned a summit on health care for people with disabilities as a critical 

component of the research effort on the state of health care for people with disabilities. 

Convened in Chicago April 7–8, 2008, the Summit on Health Care for People with 

Disabilities brought together health care experts, opinion leaders, Federal agency and 

disability community representatives, researchers, funders, and practitioners to discuss 

barriers to health and health care for people with disabilities and to create a strategic 

action plan that will begin to address the problems. 

The summit participants considered a series of recommendations for reform derived 

from seminal reports issued by the Institute of Medicine, the Surgeon General of the 

United States, and leading health policy researchers. They identified strategic actions 

that should be taken to move forward the reform agenda and ranked the 

recommendations based on the extent to which some goals are achievable in the near 

term. 

Summit participants identified overarching strategic principles for advancing reforms 

that included defining a vision of health care that will meet the needs of people with 

disabilities; riding the wave of health service and facility growth; driving system-level 

change; changing hearts and minds; reframing the issues to reflect patient-centered 

care and universal design solutions; and increasing health care professional capacity 

and competency. Specifically, participants identified the following strategic actions that 

hold significant potential to achieve meaningful results in the near term. 

● Securing Federal agency or congressional support to establish a Technical 

Assistance Center for Health Care Improvement for People with Disabilities 

● Gaining active support from the Joint Commission to bring accessibility and 

universal design principles into the medical facility survey accreditation process 

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● Gaining commitment and active engagement from a committed core group of 

people who will advocate for accreditation standards that require disability 

awareness and competence in the medical school curriculum 

Two top-tier recommendations were identified: 

● Health care facilities, services, and programs must be accessible according to 

Federal and state standards and guidelines, and should actively promote 

principles of universal design both in the built environment, for diagnostic, 

examination, and other medical equipment—in fact, for all aspects of care 

delivery. 

● Congress should establish a publicly funded system of technical assistance 

centers from which states, health plans, clinics, hospitals, diagnostic and 

treatment centers, individual medical practitioners, equipment manufacturers, 

people with disabilities, and others can easily obtain centralized information on 

defined standards of care and related practical resources for ensuring full 

access to health care services for people with disabilities. 

While important education took place among the participants—and themes, ideas, and 

strategic action plans that hold great potential emerged throughout the summit—the 

meeting was only a starting point. Ongoing discussion and the involvement of additional 

stakeholders is urgently needed. The summit outcomes can be used as a road map by 

the disability community, policymakers, and health care professionals and researchers 

to continue a focused dialogue that will influence the direction of reform and the 

substance of the policy discourse going forward. 

B. Planning Process 

Before the summit convened, a multidisciplinary organizing committee engaged in 

extensive discussion to develop summit objectives, process, and logistics. Planning 

focused on bringing together approximately 25 influential and strategic decision makers 

from across the health care system and the community of people with disabilities. The 

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summit was designed as a 11⁄2-day interactive working meeting to engage in a dialog 

with senior leadership from multiple relevant constituencies. 

The summit sought to include the shared wisdom of the public and private sectors, the 

health care provider community, Government agencies, disability rights and advocacy 

groups, and people with disabilities. Individuals representing each of these 

constituencies were invited to participate. Summit attendees represented a continuum 

of expertise on health care access issues faced by people with disabilities. The group 

included (1) experts deeply familiar with broad health and health care access issues for 

people with disabilities; (2) expert authorities on a focused access issue, such as 

architectural or communication access; and (3) those who were somewhat unfamiliar 

with disability access issues but held expertise in a sector highly relevant to the 

summit’s goals, such as health care organization accreditation or professional 

education. In some cases, participants represented more than one community. (See 

appendix B for a list of participants.) 

C. Structure 

Summit organizers opened the meeting with a discussion of the overall NCD research 

project and the summit’s purpose, goals, and rationale. Throughout the meeting, 

participants met in a mix of large and small discussion groups in which facilitation 

techniques were used to elicit their views and achieve consensus concerning priority 

recommendations and strategic action plans. 

A variety of experts provided high-level introductions to health care access issues 

affecting people with disabilities. Topics included (1) key health care access issues for 

people with disabilities in general and for specific populations, such as women with 

disabilities, people who are deaf or hard of hearing, people who are blind or who have 

vision impairments, and people who have intellectual and developmental disabilities; (2) 

universal design principles in health care; (3) the status of Federal directives on access, 

accommodation, and accountability; and (4) disability definitions, data collection, and 

disparity initiatives. 

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Before the summit, organizers defined five “Priority Recommendations for Reform and 

Stakeholder Actions” for discussion by the participants. The five recommendations were 

chosen from the 2007 Institute of Medicine (IOM) report “The Future of Disability in 

America,” the 2005 “Surgeon General’s Call to Action to Improve Health and Wellness 

of Persons with Disabilities,” and other reports and publications concerning health and 

health care for people with disabilities. Summit organizers considered the scope of 

recommendations made by these seminal reports and selected the recommendations 

that could potentially yield identifiable objectives and outcomes. The recommendations 

were selected on the basis of their projected impact, feasibility, and alignment with 

summit participants’ spheres of influence. Recommendations that were considered too 

broad or unwieldy were set aside in favor of more promising alternatives. The planning 

process and the summit itself emphasized identifying achievable goals. 

Priority recommendations: 

● Federal agencies should adopt a uniform disability monitoring system for 

identifying access barriers, quality measures and outcomes, and health and 

health care disparities. 

● Health care facilities, services, and programs must be accessible according to 

Federal and state standards and guidelines, and should actively promote 

principles of universal design in the built environment, for diagnostic, exam, and 

other medical equipment—in fact, for all aspects of care delivery. 

● All health care provider training programs should have a disability competency 

requirement that produces student comprehension and understanding of the 

principles of accessibility, accommodation, cultural competency, and awareness 

of community and other resources for people with disabilities. 

● Congress should establish a publicly funded system of technical assistance 

centers from which states, health plans, clinics, hospitals, diagnostic and 

treatment centers, individual medical practitioners, equipment manufacturers, 

people with disabilities, and others can easily obtain centralized information on 

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defined standards of care and related practical resources for ensuring full 

access to health care services for people with disabilities. 

● Key stakeholders must ensure that these and other critical issues concerning 

health and health care for people with disabilities are fully integrated into 

“Healthy People 2020” deliberations taking place during 2008 and 2009, and 

into the final publication. (See appendix E for additional recommendations and 

potential stakeholder actions.) 

Participants were organized into two facilitated roundtable discussion groups that 

identified three priority recommendations from the list of five. The full group reconvened, 

roundtables outlined their respective priorities and action plans, and ideas were merged. 

At the close of day 1, summit conveners prepared a synthesis of results and developed 

a single priority plan. On day 2, participants deliberated the priority plan, agreed to a set 

of final recommendations, and set priorities for action. Summit conveners closed the 

meeting by encouraging action and collective accountability, and they sought 

commitments from participants to begin working on specific tasks. Organizers sent a 

postsummit summary letter to participants in order to reinforce the work of the summit 

and maintain and direct momentum going forward. (For additional details on the summit 

process, see appendix F.) 

D. Summit Proceedings 

1. Charge and Goals 

Summit organizers set the stage for the meeting with impassioned opening remarks that 

described the dramatic life changes for people with disabilities that have been achieved 

since the enactment of the Americans with Disabilities Act (ADA). Although these 

changes are evident and effective in areas such as architectural accessibility, 

transportation, and telecommunications, similar advances are not yet apparent in health 

care. Issues of cultural competency, health disparity, and health literacy dominate the 

national health care agenda and reflect an appropriately placed concern for economic 

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and sociocultural barriers to care. However, issues of concern to people with disabilities, 

such as physical and communication barriers to care, remain unchanged for the most 

part. 

From the time the IOM released its first report on people with disabilities, in 1991, to its 

most recent publication in 2007, numerous high-profile reports have explicitly identified 

barriers to health care for people with disabilities and offered extensive 

recommendations for improvement.451 Yet for all the reports and recommendations, 

there has been little action and little change. 

Determined not to dispatch another report to the shelves, summit conveners challenged 

participants to lead a sea change forward. Participants were asked to examine the 

following questions: 

● Why haven’t we been successful in enacting the recommendations of past 

reports? 

● Why haven’t we witnessed a sea change? 

● What prevents us from moving forward? 

Summit conveners sought engagement and meaningful discussion from participants 

and encouraged them to identify practical implementation steps for the most promising 

and readily achievable recommendations. 

One of the charges of the summit, in addition to examining the health care status of the 

overall population of people with disabilities, was to examine specific groups within the 

larger population, specifically, women with disabilities, people who are deaf or hard of 

hearing, people who are blind or have vision impairments, people with other 

communication disabilities, and people with intellectual and developmental disabilities. 

Summit presentations and discussions specifically addressed these populations. 

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2. Framing the Issues: Content Presentations 

The content presentations provided introductory material on topics relevant to 

disparities in health and health care for people with disabilities. The four topical 

sessions addressed the following issues: 

a. Health Status of People with Disabilities and Key Health Care Access 

Issues 

b. Specific Health and Health Care Issues 

● Women with disabilities 

● People who are blind or have vision impairments 

● People with intellectual and developmental disabilities 

● People who are deaf or hard of hearing 

c. Universal Design Principles in Health Care 

d. Role of the Federal Government 

● Absence of Federal directives to states on access, accommodation, and 

accountability 

● Definitions, data collection, and disparity initiatives 

3. Forensic Inquiry 

Over the past few decades, significant strides have been made in improving the health 

status of Americans. Despite these improvements, people with disabilities continue to 

experience a disproportionate burden of poor health compared with the general 

population. Elimination of health disparities through improved access to care for 

underserved populations is a top priority on the nation’s health care agenda, yet people 

with disabilities remain disconnected from its fiery momentum. Why is this so? 

By leading participants through a form of failure analysis, summit conveners posed a 

series of thought-provoking questions, listed below, that spurred discussion about why 

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access to health care for people with disabilities had not improved to any significant 

extent. 

● Why aren’t more health care organizations breaking down the barriers to 

access for people with disabilities? 

● Why is it so difficult to get accessibility principles adopted in the health care 

setting? 

● Why are people with disabilities so difficult to get on the radar screen of health 

care organizations? 

● Why have all the existing reports and recommendations on health care access 

led to so few actions and results? 

While participants found no clear causal factors that accounted for these failures, a 

number of contributory and interrelated factors emerged that informed the group’s 

thinking and discussion. 

4. Contributing Factors 

a. Core Attitudes 

A participant from the disability community stated: 

Most people who do not have disabilities look at someone with a disability, and 

they don’t believe we can live a fulfilling, productive, and happy life. They don’t 

believe that. And that creates a gulf. And unless you can bridge that gulf, it will 

always be there. 

Misconceptions about people with disabilities impede access to health care services. 

Health needs are frequently interpreted only in reference to the individual’s disability 

and not in regard to broader health issues. This form of diagnostic myopia goes beyond 

stigma and stereotyping, and limits access to appropriate quality care. In particular, it 

can lead to underutilization of health promotion and preventive services. For example, 

several summit participants related stories about health care providers who did not 

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screen people with disabilities for nutritional status, tobacco or alcohol use, sexually 

transmitted disease, cancer, or domestic violence. 

Another participant said: 

My son is 25 years old, identified at 18 months old with muscular dystrophy. He 

is also legally blind, has signs of autism and depression. People can’t imagine 

he can do anything. And yet, I see him as a wonderful, loving person who 

makes an enormous contribution to my family and our community; that piece is 

almost never discussed when we talk about health care and developmental 

disability.

False assumptions and stereotypes about those who have a disability are often the root 

causes behind the pervasive and systemic barriers people with disabilities experience in 

the health care delivery system. One participant told a particularly wrenching story 

about a deaf patient who was waiting for the results of a biopsy, to learn whether he had 

prostate cancer. Before he was given a diagnosis, and without a sign language 

interpreter present, the physician handed him a note that said, “Prostate cancer—

testicles removed. Radiation if necessary. Depends on bone scan.” This note comprised 

the entire communication about this man’s medical condition, treatment options, and 

possible prognosis until family members intervened and insisted on appropriate 

communication. 

Summit participants discussed how basic health care needs are often neglected by 

health care practitioners because they operate in a culture that frequently devalues life 

with a disability and that finds it difficult to understand that people with disabilities can 

live lives that have meaning and quality. For example, many health professionals hold 

myths about the sexuality of people with intellectual disabilities. Not only do they 

sometimes mistakenly think that women with intellectual and developmental disabilities 

are asexual, but they subscribe to an attitudinal bias pervasive in the health care 

community that argues that such women should not be sexual. As a result, health care 

providers sometimes fail to consider reproductive needs or conduct basic health 

screenings. 

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Another participant told this story: 

I was three years old when I had polio. Throughout my life, and even today, it’s 

amazing how often people are amazed at what I do. We simply don’t have an 

image in this country of what disabled people can be. We are blazing a trail. 

Now, what’s too bad is that when we see a doctor, to this day we continue to 

blaze that trail over and over again. Even when things work, you come to the 

next person and you get to blaze it all over again. I guess I’ve gotten to the 

point where I accept the fact that to the end of my time I will be doing this. But 

sooner or later we’ve got to find a way to let people know what the 

expectations really ought to be. 

b. System Failure 

Patient-centered care—defined by the Institute of Medicine as care that is respectful of 

and responsive to individual patient preferences, needs, and values”452—is a key 

ingredient of health care quality. But looking at health care quality from the patient’s 

perspective is fairly new, and it is only recently that patient-centered principles have 

dominated health care conversations. 

Despite some progress, participants agreed that tremendous gaps exist in the adoption 

of patient-centered practices. The system remains focused on illness rather than people 

and on short-term fixes rather than long-term relationships. Neither strategy serves 

people well. The fundamental inability of the system to respond to individual needs and 

the fact that the system thrives on its very impersonal nature are primary cause of the 

failures of health care quality as a whole. The experiences of people with disabilities 

showcase the impact of these system weaknesses. 

c. System Complexity 

Various participants noted that the U.S. health care system is often called a nonsystem. 

It is characterized as complex, fragmented, entrenched, and deeply layered, and any 

form of transformation must cut across these diverse elements. Despite all the reports 

and recommendations, no sweeping change in access or quality of health care has 

taken place for people with disabilities. It is extraordinarily difficult to influence the 

complexity of forces that shape health care, how it is delivered, who gets it, and how 

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well it works. As long as the health care system continues to be layered in complexity, 

health disparities experienced by people with disabilities will also remain unchanged. 

d. Data Challenges 

Participants discussed the impact of poor disability data on funding and health care 

service delivery. No single operational definition of disability exists, nor does a 

consistent system for measuring the prevalence of disability or its impact on health. The 

current monitoring system is not sufficient to provide the basic data needed to measure 

and monitor disability. 

People with disabilities are represented in 207 of the 467 objectives that span 21 of the 

28 “Healthy People 2010” focus areas. However, data on people with disabilities are 

available for only 88 of those 207 objectives.453 In the absence of data, appropriate 

programs cannot be planned, outcomes cannot be evaluated, and the causes of 

disparities cannot be identified and reduced. 

As one participant observed: 

We know that people with disabilities experience disparities in health and 

health care. But we know nothing about why the disparity exists. Are people 

not receiving services because of a stigmatized attitude on the part of the 

physician or because the patient preferred not to have the service? Available 

data sets are not designed to capture such aspects of care. 

When women with disabilities under age 65 were diagnosed with early stage 

breast cancer, they were much less likely than the general population to 

receive breast-conserving cancer surgery. They were much more likely to be 

treated with mastectomies. It could be the patient’s preference, but it could be 

other factors as well. We just don’t know.

Several participants noted that current Federal data collection efforts amass a 

significant amount of information on impairment, activity, and participation limitations. 

However, national public health data sets do not collect information on environmental 

factors that have an impact on health, such as whether people use wheelchairs or 

augmentative communication devices, or whether they have access to public 

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transportation to get to the doctor. Further, data are not collected on access 

modifications or adaptations in private homes, or programmatic accessibility in health 

care settings. Little is known about the extent to which these and other environmental 

factors contribute to the overall health status of people with disabilities. 

e. Strategy Limitations 

Participants discussed the lack of impact of efforts, such as litigation, to bring about 

necessary systemic change in health care access for people with disabilities. One 

participant observed that some perceive the ADA as the only tool available to address 

the issues, when in fact it is only one instrument, and a blunt one at that. Several people 

questioned whether other strategies have been used effectively, such as standards 

setting and monitoring by private accreditation entities or better training of health care 

professionals. 

One person observed that significant gains had been made within the institutions by the 

milestone settlement of Metzler v. Kaiser Permanente (2001) and the Washington 

Hospital Center settlement with the Department of Justice (2005). She went on to ask, 

“Where are the others?” The ADA was an effective tool in these cases, but other 

institutions did not follow suit. The majority of health care delivery in the United States 

takes place in private offices and small clinics, where there is little or no ADA 

implementation or enforcement. Several people suggested that it is unlikely that the 

ADA can effectively reach the levels and layers of health care being provided in small 

offices and clinics around the nation. One participant questioned whether the ADA as a 

blunt tool is capable of “changing the hearts and minds of an entire sector of society.” 

f. Attention Overload 

Human attention is becoming a scarce resource in health care environments. Fiscal 

constraint, workforce shortages, pay-for-performance, and emergency department 

overcrowding are just a few of the current demands on the system. In an environment 

saturated with complexity, chaos, and time demands, issues vie for their share of 

216 
attention. One summit participant noted, “If it’s not on their radar as an important issue, 

then all other issues swamp it.” 

Another participant said: 

You’ve got to get people’s attention. The inertia of ignorance is more powerful 

than I ever suspected. People in health care are so focused on life and death 

issues, on overloaded caregivers, on limited resources with so many 

competing interests. Until that ignorance is overcome or you get their attention 

by a lawsuit or Department of Justice investigation, it’s tough to get these 

issues to the top of their to-do pile. It will always be “that’s a good thing to do” 

but it will never quite rise to the surface until there is some sort of 

accountability demanded. 

g. Culture and Curriculums 

One participant told the story of a recent mammogram. Through experience, she knows 

it takes two technicians to position her effectively, but only one was available that day. 

The single technician said, “I’ve been doing this for years. Let’s give it a try.” The 

participant replied, “No, let’s not!” There was general agreement that the stories people 

with disabilities can tell about providers who do not respect their wishes or trust them to 

know their own needs are virtually unlimited. Another participant said there are “really, 

really horrific stories out there about people with disabilities not getting their needs met.” 

And a third participant, a member of the medical community, asked, “Where is the 

culture of humility?” Provider training is key to changing attitudes and practices, and 

“cultural humility warrants greater emphasis in medical training.” 

All health care providers should be better educated about disability and appropriate 

health care, but current curriculums that address these issues are very limited in 

professional training programs. Physicians, nurses, and other providers therefore have 

little awareness of the challenges involved in living with a disability or knowledge about 

how to provide culturally appropriate care and accommodations. 

From a training perspective, health care professionals must understand that disability 

touches everyone’s life, through birth, accident, disease, or aging, or through 

217 
relationships with others. Health care providers, including physicians, nurses or allied 

health professionals, and others, are the heart of our health care system. However, 

when they have not been trained to address the needs of a major segment of the 

population, serious problems arise for people with disabilities. Providers should learn to 

recognize the knowledge gap and seek information from patients or from other sources. 

Historically, however, medicine is a profession that operates on the adage that “the 

doctor knows best,” which fosters a culture in which the physician leads and others 

dutifully follow. This scenario tends to be more pronounced when people with significant 

disabilities are involved. Quality experts have identified this mindset as a major barrier 

to reducing medical errors and improving the quality of medical care overall. 

Various participants acknowledged that common problems—including lack of 

awareness, indifference to informed consent, disregard for the patient’s best interest, 

and unwillingness to provide for accommodations—seriously undermined efforts to 

ensure quality care and eliminate health disparities for people with disabilities. 

h. Untapped Possibilities 

Many groups have a mutual interest in expanding health care access to underserved 

populations. However, several participants questioned whether the disability community 

has adequately leveraged these potential partners for a common cause. One individual 

encouraged the group to avoid treating disability issues as silos. “Your issues are 

shared by others. The more you can be seen as a part of a full-court press, the more 

likely you are to succeed.” This participant stressed, and others agreed, that 

collaboration is necessary to create win-win scenarios. 

Participants observed that other populations affected by health disparities have just as 

much stake in health care access as do people with disabilities, which suggests an 

opportunity to achieve critical mass. If disability issues are isolated and unique, 

however, they risk being viewed as nominal, making success more difficult to achieve. 

Various participants asked which partners the disability community had failed to 

embrace and which partners should be approached. 

218 
Some participants cautioned against this approach and questioned whether disability 

concerns might be either diluted or absorbed by aligning with other affinity groups. 

5. Priority Recommendations for Reform and Stakeholder Action 

Participants discussed the following five priority recommendations for reform, derived 

from leading reports on health care for people with disabilities. They identified the 

recommendations that they thought should be the highest priorities; eliminated those 

that were overly broad, overly ambitious, or too complex; revised or added to the 

recommendations; and generated specific action steps to advance the goals. 

● Federal agencies should adopt a uniform disability monitoring system to identify 

access barriers, quality measures and outcomes, and health and health care 

disparities. 

● Health care facilities, services, and programs must be accessible according to 

Federal and state standards and guidelines, and should actively promote 

principles of universal design in the built environment, for diagnostic, 

examination, and other medical equipment—in fact, for all aspects of care 

delivery. 

● All health care provider training programs must have a disability competency 

requirement that produces student comprehension and understanding of the 

principles of accessibility, accommodation, cultural competency, and awareness 

of community and other resources for people with disabilities. 

● Congress must establish a publicly funded system of technical assistance 

centers from which states, health plans, clinics, hospitals, diagnostic and 

treatment centers, individual medical practitioners, equipment manufacturers, 

people with disabilities, and others can easily obtain centralized information on 

universally defined standards of care and related practical resources for 

ensuring full access to health care services for people with disabilities. 

● Key stakeholders must ensure that these and other critical issues concerning 

health and health care for people with disabilities are fully integrated into the 

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The group concluded that all the recommendations were relevant and critical, and none 

of the five should be eliminated from the broader agenda. One participant compared the 

recommendation to a three-legged stool; no recommendations can be removed without 

the entire stool falling. While all five recommendations must be addressed, the 

participants focused on those that were most likely to be achieved sooner rather than 

later, referring to them as “low-hanging fruit.” Rather than trying to tackle the broad 

issues posed by the five recommendations, the group felt a more effective proposition 

would be to identify priorities, then narrow down and create action steps for two or three 

of them. 

After considerable discussion, the group came to a consensus on two top-tier and three 

second-tier recommendations. Two additional recommendations were identified and are 

reported as well. Because of time limitations, the group identified strategies and action 

steps only for the top-tier recommendations. 

a. Summit Participants’ Top-Tier Recommendation #1 

Health care facilities, services, and programs must be accessible according to Federal 

and state standards and guidelines, and must actively promote principles of universal 

design in the built environment—for diagnostic, exam, and other medical equipment—

and for all aspects of care delivery. 

• Rationale 

People with disabilities face numerous barriers to receiving adequate health care. 

Barriers can range from physically inaccessible health care provider locations, to exam 

and diagnostic equipment that cannot be adjusted for a range of patient function, to a 

failure to modify office policies or practices to accommodate the communication and 

accommodation needs of patients with various disabilities. 

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A participant related the following story illustrating the pervasive problems with 

programmatic access inherent in health care settings. The individual—an active, 

vigorous man who is functionally paraplegic and uses a wheelchair—experiences the 

effects of post-polio syndrome and uses a noninvasive ventilator when he lies supine. A 

computerized tomography (CT) scan showed an ill-defined pelvic lesion, and he was 

referred for an outpatient magnetic resonance imaging (MRI) followup. His internist 

ordered the MRI and noted that he must use his ventilator when lying flat. 

Unquestionably, this situation is novel and unique; further, the medical community is 

generally not familiar with the use of ventilators outside the acute care context. This 

individual’s MRI required that staff understand the problem and integrate and coordinate 

appropriate services, which unfortunately did not take place in a timely manner. Nine 

months later, the man finally had an MRI using an MRI-compatible ventilator. By that 

time, the lesion had more than doubled in size and was found to be malignant. The 

participant who shared the story, a member of the medical community, summed up the 

anecdote by saying, “What has happened here? This is much more than disability 

access. This is patient safety. This is quality of care. This is a delayed diagnosis.” 

While Federal laws, such as the ADA, as well as many state laws, prohibit 

discrimination on the basis of disability and clearly apply to health care facilities and 

services, enforcement efforts have failed to bring about needed systemic change in 

health care access for people with disabilities. 

• Accessibility and Universal Design 

Substantive discussion took place over how to make the best use of accessibility 

mandates and universal design principles in health care environments. Participants 

emphasized the importance of a two-pronged approach for achieving access to health 

care facilities. Facilities must first implement the legally mandated accessibility 

requirements in the ADA and relevant regulations. Health care facilities and programs 

should also adopt and promote universal design principles as a means of initiating 

systemic changes in institutional attitudes and behaviors. 

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Some participants saw the potential for universal design to move health care facilities 

beyond strict physical access and compliance with standards and guidelines to a 

values-based framework of inclusiveness. The potential exists to go far beyond just the 

letter to the spirit of the law and to create truly inclusive environments, but the will to do 

so must be present. Participants discussed the fact that compliance with universal 

design principles is not easily measured and is not regulated. ADA accessibility 

guidelines will likely represent the minimum requirement, or the floor of what must be 

provided, because adherence to the guidelines can be measured and evaluated. 

Universal design principles could subsequently be added. Several participants 

expressed concern that universal design would be interpreted as a one-size-fits-all 

approach rather than an adaptable solution to various accommodation and design 

challenges in the health care context. Participants discussed methods and strategies for 

working with health care facilities to get the best of universal design and the ADA. 

Participants also discussed current health care design movements. One participant 

encouraged efforts to conceptually meld three contemporary approaches—universal 

design, design for sustainability, and design for safety—into the design of health care 

facilities. Participants encouraged interaction with the American Institute of Architects 

(AIA) and its “Guidelines for Design and Construction of Health Care Facilities” (2006). 

The group expressed enthusiasm for hitching disability accessibility and 

accommodation onto the relatively new drive for social sustainability (which includes 

universal design). One person noted, “Green movement seminars are hot in the 

architectural world. Can we approach them and get onto their agenda? Can they include 

something on disabilities? To the extent that we can talk about ourselves in their terms, 

the door will be open for us.” 

A thoughtful dialogue took place on the challenge of balancing the prescriptive and 

measurable standards of the ADA and the broader vision and values of universal 

design. Participants offered the following: 

● When the Joint Commission required health care organizations to establish an 

ethics mechanism, the committee did not specify that an ethics committee or an 

222 
ethics consultant was required. Rather, the Joint Commission required an ethics 

mechanism; it was up to the organization to determine which mechanism. 

● ADA specifications for wheelchair lifts meet certain use requirements. However, 

in the spirit of inclusiveness, facilities should purchase the lift that is most useful 

to the greatest number of people. This would include newer lifts that can 

accommodate larger scooters and power wheelchairs, as well as conventional 

wheelchairs. 

Inaccessible medical equipment, a major barrier to quality health care for people with 

disabilities, was a consistent theme at the summit. Discussion focused on the 

development of technical criteria for such equipment. The merits of performance and 

technical standards were compared: a performance standard would specify, for 

example, that a patient room must be accessible or universally designed, whereas a 

technical standard would specify that the door must provide a 32-inch clearance 

opening. While the performance standard can be interpreted in different ways, the 

technical provision is without ambiguity and is measurable, but participants also 

questioned whether that is the best method for improving access and fostering 

meaningful inclusion. 

Participants observed that the rapid pace of change in health care is a major factor to 

consider in the debate between performance and technical standards. Technical 

standards can impede advancements in health care, as they are quickly outpaced by 

emerging technologies. By comparison, performance standards, which rely on laying a 

foundation of best practices, are potentially more durable. 

Alternatively, one participant suggested involving the Food and Drug Administration 

(FDA) in the issue of accessible medical equipment. Since the agency is responsible for 

approving and regulating medical equipment, exploring methods to incorporate 

accessibility standards into the FDA review process could advance the development of 

such standards. 

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• Changing Context 

In “Crossing the Quality Chasm” (2001), IOM advanced six aims for transforming the 

U.S. health care system. The values—safe, effective, patient-centered, timely, efficient, 

and equitable—mesh neatly with universal design principles. Merging the IOM aims with 

universal design principles would enable people with and without disabilities to benefit 

from the underlying values while experiencing person-centered health care. One 

participant said: 

We think of people with disabilities as a narrowly defined population when in 

fact they are not. Roughly 85 percent of people over the age of 85 experience 

age-related hearing loss, and arthritis is the single most disabling condition in 

adults, so when we talk about people with disabilities, the numbers are huge. 

And I would hate for the message to come out of our group that we’re talking 

about a narrow community of disabled people. . . . This really has to do with 

everyone. It’s all-inclusive. It’s everybody. It’s you. It’s your parent, if it’s not 

you yet. 

Another participant talked about the issue of universality. Communication is a significant 

issue for all patients, including people who are deaf or hard of hearing, and this issue 

intersects with issues of poverty, literacy, and ethnicity. The need for effective 

communication is not specific to people with disabilities but universal to all patients. 

Various participants discussed the fact that disability is a universal phenomenon. Most 

people will experience physical changes and challenges at some point in their lives, and 

almost certainly will as they age. The attraction of universal design is that it 

encompasses human variation and ability, thus helping to shift the view of people with 

disability from a narrow, specialized community with unique needs to a broader 

community with common needs and values. One participant said, “It is a mistake to 

think we can solve this whole problem each in our own little way.” 

• Role for the Joint Commission 

The Joint Commission (JC), through the provision of health care accreditation and 

related services that support performance improvement in health care organizations, is 

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in a key position to influence the pace at which health care facilities accept and adopt 

accessibility standards and principles of universal design. The JC employs numerous 

mechanisms to educate health care organizations about best practices, and it can bring 

about ADA compliance by developing accreditation standards for accessibility, patient 

accommodation, and universal design. 

The JC establishes standards for 96 percent of U.S. hospital beds and monitors 

compliance, thereby ensuring that it has an influential voice in the hospital industry. 

Because the majority of hospitals use JC accreditation to establish Medicare 

certification, hospitals readily engage in JC-sponsored educational programs and 

disseminate JC materials in order to maintain certification. JC accreditation penetration, 

however, is not as deep in long-term for ambulatory care settings, and therefore the 

commission has less influence in these markets. A participant from the medical 

community spoke of JC’s ripple effect. “It is a sea change any time JC endorses an 

issue. It doesn’t matter if JC’s influence is concentrated on hospitals, because 

physicians work in hospitals. And then they go to their outpatient settings, clinics, or 

long-term care facilities, and they bring the new practices with them. They don’t 

compartmentalize. When JC issued new pain standards for hospitals, pain management 

improved in every care setting.” 

Another participant advised against using standards as a first step. He suggested a 

process that begins by educating organizations and surveyors on deficiencies and best 

practices. In this approach, the JC could serve as a major communication vehicle. The 

adoption of a standard could follow and an agreement on technical content could be 

garnered. 

One participant made the point that 

[w]hether it is standards or the law, organizations will act in order to be in 

compliance. They will act without thinking. And we’re not going to have quality 

and safe care for everyone unless people think about what they’re doing. 

Health care is complex and requires thinking. Check-off sheets can’t substitute 

for thinking, and thinking is the key to patient-centered care. So what we’re 

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trying to do is get people to think about what they’re doing in the context of the 

values we’ve endorsed around health care. That’s bigger than a standard. 

Another participant from the medical community offered the following example: 

Consensus on adding cultural competency to medical school curriculums was 

percolating for a few years, and then the Liaison Committee on Medical Education 

(LCME) inserted a simple standard on cultural competency into the accreditation 

process.454 Suddenly there was an explosion of best practices, curriculums, seminars at 

meetings—all due to the new standard. From this participant’s view, standards are the 

catalysts that drive action, even in a landscape that is amenable to taking action but has 

not yet done so. 

• New Models of Health Care Delivery 

Participants discussed increasing use of models of care delivery, such as mobile 

mammography, telehealth monitoring and consultation, home dialysis and home 

chemotherapy, and a resurgence of house call medicine. On the positive side, home 

care environments effectively solve some of the routine barriers to health care faced by 

people with disabilities (e.g., transportation, fatigue, inaccessibility). On the cautionary 

side, disability communities must be involved in developing access guidelines and 

standards now, as these delivery models emerge. One participant warned that language 

in guidelines and standards must explicitly target equipment and devices used in the 

home. If the language says “all aspects of health care delivery,” it will inevitably be 

interpreted to mean hospitals and clinics but not the home. 

Others recommended laying the groundwork for Federal regulation of telehealth and 

telemedicine applications specifically. Various participants suggested that DOJ should 

define what “accessible” means in a telehealth environment, and the Access Board 

should develop technical criteria. DOJ might also need to address other civil rights 

issues now, before the technology becomes ubiquitous in mainstream medicine. 

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• Build the Business Case 

Participants noted that hospital leadership is generally receptive to hearing the business 

case on accessibility. When accessibility issues intersect with workplace or patient 

safety issues, and a positive return on investment can be projected, hospital 

administrators tend to be open and interested. 

Specific discussion took place about the attention that has been given to the health and 

safety risks among health care workers. For example, nursing staff, by the very nature 

of their work, are particularly vulnerable to the hazards of back injuries. It is estimated 

that annually 12 percent of nurses leave the profession because of back injuries, and 

more than 52 percent complain of chronic back pain.455 The extent of injury among the 

nursing workforce is particularly distressing in the context of the current nursing 

shortage. 

Several participants spoke about how providing appropriate patient lift and transfer 

equipment, along with processes to support their use, is an effective strategy hospitals 

can use to reduce the risk of injury. Not only does the equipment decrease injury to 

nurses (reducing work-related compensation claims, staff turnover, and lost 

productivity), it improves the safety and quality of patient care delivery.456 

In another example, hands-free paper towel dispensers create accessibility for a 

segment of the population with mobility limitations. At the same time, these dispensers 

reduce the chance of cross-contamination and thus facilitate improved infection control. 

• Involving People with Disabilities 

Several participants brought up the need for people with disabilities and their families to 

be involved in the design process of health care facilities and medical equipment. 

• Insurance Industry 

Participants considered the role of third-party payers. Dysfunctional reimbursement 

methods have a profound effect on the will or ability of providers to create accessible 

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environments of care. However, driving insurance industry change was beyond the 

scope of the summit. 

• Scope of the Problem 

Concerns were raised about the enduring and pervasive lack of implementation, 

monitoring, and enforcement of the ADA in health care delivery. One person described 

it this way: 

JC has not adopted the ADA standards or guidelines as a basis for 

accreditation of its facilities. CMS has not adopted the ADA or Section 504 of 

the 1973 Rehabilitation Act as a mechanism for determining allocation of 

Federal funds to the states. Although companies that contract with states to 

provide health care are required to comply with the ADA and other civil rights 

laws, as a practical matter there is no implementation and no monitoring and 

no enforcement. It’s a challenge to think about how to make that work. 

• Goal-Specific Strategies 

o Use ADA accessibility guidelines as a minimum standard but aspire to 

universal design principles in the spirit of the direction reform should take. 

o Align health care access for people with disabilities with the Institute of 

Medicine’s six aims for improving the health care system. 

o Begin to shift the context of disability away from an accessibility and civil 

rights issue toward a patient safety and quality of care issue. 

o Capitalize on the Joint Commission’s significant reach into health care 

organizations. 

o Partner closely with the Joint Commission in educating organizations and 

surveyors on accessibility and universal design principles. 

o Think and act systemically. 

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• Specific Action Steps 

o Develop a best practices guide to help providers (a) recognize that universal 

design goes beyond ADA requirements and (b) understand methods of 

implementing and evaluating universal design principles in health care 

settings. In this guide, profile organizations that have implemented best 

practices, including their methods and outcomes. 

o Submit a scholarly article to the Joint Commission Journal on Quality and 

Patient Safety that aligns health care access for people with disabilities with 

the six IOM aims for a transformed health care system. 

• Identified Stakeholders 

o Centers for Medicare & Medicaid Services (CMS) 

o Food and Drug Administration (FDA) 

o Joint Commission (JC) 

o Access Board 

o Department of Justice (DOJ) 

o Disability and health care policy advocates and researchers 

b. Summit Participants’ Top-Tier Recommendation #2 

Congress must establish a publicly funded system of technical assistance through 

which states, health plans, clinics, hospitals, diagnostic and treatment centers, 

individual medical practitioners, equipment manufacturers, people with disabilities, and 

others can easily obtain centralized information on defined standards of care and 

related practical resources for ensuring full access to health care services for people 

with disabilities. 

• Rationale 

The participants defined a number of barriers that prevent readily available, accessible 

equipment from being acquired and used in health care settings. Health care providers 

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sometimes hesitate to implement accessible solutions if they do not have knowledge 

about where to find resources, think it is too time-consuming to learn how to use an 

accommodation, or think that the accommodation is too complex to master. When 

sufficient information is not readily obtainable, providers often either give up or reinvent 

solutions rather than seek existing technologies and ideas. 

Substantial information is available on assistive technology, accessible medical 

equipment, accessible built environments, and universal design principles for health 

care settings. But the information is fragmented, poorly disseminated, and hard to find. 

Health care providers, the public, and people with disabilities need a better road map to 

access it. A technical assistance system would provide an expert road map to 

information and resources. 

A comprehensive center of technical assistance would improve access to health care by 

making this information readily and proactively available to health care providers, 

people with disabilities, and other key stakeholders. One participant from the disability 

community said, “I think a lot of people don’t know you can get better care and should 

get better care. If we had a repository, a technical assistance center for health care, 

people could find information, program access tips, policies, whatever.” 

• Structure and Function 

Summit participants fully endorsed the need to make some form of technical assistance 

available to health care providers who are seeking information on accessibility, 

accommodations such as sign language interpreters, best practices, or universal design 

principles. Participants considered various models for providing technical assistance 

and deliberated which would be most effective in serving the health care industry. 

A number of federally funded models of technical assistance exist. A national network of 

Disability and Business Technical Assistance Centers (DBTAC: ADA Centers) has been 

established to provide information, referral, resources, and training, with an emphasis 

on businesses and employers. The DBTAC Centers are set up as a regional model, 

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whereas the summit participants favored a national center that included a virtual 

approach for health care. 

The precise role and function of a national technical assistance center for health care 

Access requires refinement and stakeholder input; such a center could build on existing 

expertise and resources, but participants suggested a number of potential core 

activities: 

o Provision of national technical assistance through an interactive Web site and 

Webinars 

o Listserv, email, and toll-free telephone support 

o Provision of training at health care provider national conferences 

o Provision of onsite training at hospitals and clinics 

o Assistance to hospitals and clinics to identify and address barriers 

o Review and critique of accessible medical devices 

o Analysis of novel approaches 

o Development of model policies and procedures 

o Compilation of best practices 

o Assistance to patients and providers on the growing use of technology, 

software, Web services, and multimedia inpatient care programs 

o Development of materials that are important for increasing access to health 

care systems 

• Strategy 

The group agreed that any initiative to establish a technical assistance center for health 

care would require Federal support and that the center did not necessarily have to 

reside in the National Institute on Disability and Rehabilitation Research (NIDRR) but 

could fit well with any number of Federal disability programs. One person suggested 

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that the only way to elevate the center to an appropriate level of importance was 

through congressional legislation. This idea has yet to resonate with Congress, but “the 

fact is that information is exceedingly difficult to get and physicians, hospitals and other 

providers must have it if we’re going to deal with these issues.” 

One participant suggested investigating the possibility of establishing a Federal 

interagency agreement to initiate a model technology assistance program, which 

generated enthusiastic discussion. Another person advised investigating the possibility 

of expanding responsibilities of the DBTAC: ADA Centers to include a specific health 

care component. 

The physicians attending the summit suggested that providers’ willingness to make 

accessibility accommodations was positively influenced by access to technical support 

and professional allies. This fact underscores the importance of involving physicians as 

stakeholders and reaching out to providers through their professional networks. 

• Resource Anthology 

Participants discussed the breadth of stories that people with disabilities tell about trying 

to gain access to health care services and the barriers they experience. One participant 

said, “It seems pretty clear there are some really, really horrific stories of people who did 

not get care, did not get access. I’m not sure if those stories are widely available so that 

if you move forward on these issues–you have to be able to say there really is a need 

for this. There are an awful lot of people who don’t understand this. Not a report—a 

series of topical stories that people can look through.” 

The summit group agreed that an anthology of encounters in health care would make 

an excellent resource to have available through the technical assistance center. The 

anthology would serve as a means to educate health care providers and the public 

about the types and extent of barriers present in everyday health care encounters. An 

accompanying anthology of best practices in universal design was suggested as a way 

to offer solutions. 

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• Goal-Specific Strategies 

o Explore with appropriate Federal agencies the potential for developing an 

interagency memorandum of understanding to pursue funding for a Technical 

Assistance Center for Health Care Access, a model project to improve health 

care access for people with disabilities. The interagency initiative could be led 

by any of a number of different agencies such as the Centers for Disease 

Control and Prevention (CDC) or the Department of Health and Human 

Services (HHS). 

o Partner with organizations that have similar agendas, such as the Job 

Accommodations Network (JAN), Disability.gov, and the DBTAC national 

network. 

• Specific Action Steps 

o Define core functions and structure a model for a technical assistance center 

for health care access. The center will serve as a national clearinghouse and 

technical assistance center that provides comprehensive information 

resources and technical assistance services to health care providers, people 

with disabilities, and other key stakeholders. 

o Prepare the groundwork to seek a congressional mandate for a technical 

assistance center for health care access. 

o Gather stories of barriers to health care encountered by people with 

disabilities to be compiled into an ongoing anthology and made available 

through the Technical Assistance Center for Health Care Access. 

o Gather stories of best practices in universal design in health care settings to 

be compiled into an ongoing anthology and made available through the 

Technical Assistance Center for Health Care Access. 

• Identified Stakeholders 

o Centers for Disease Control and Prevention (CDC) 

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o Department of Health and Human Services (HHS) 

o Existing bodies with similar objectives, such as Disability.gov and the 

Disability and Business Technical Assistance Center (DBTAC) national 

network 

o The health care provider community, through professional associations and 

professional training programs 

o Joint Commission (JC) 

o Medical device manufacturers and trade associations 

o People with disabilities 

(See appendix E for a discussion of lower tier recommendations.) 

6. Overarching Strategies for Moving Forward 

Overarching strategies provide a general framework for moving forward and apply to all 

recommendations. They appear throughout the report and are summarized here to 

underscore their importance to the overall goal of improving health care access for 

people with disabilities. 

a. Define the Goal 

What defines accessible, effective, and culturally competent health care for people with 

disabilities? Stakeholders must articulate a clear, widely accepted vision of what such 

health care means. Only after hospitals, clinics, diagnostic services, physicians’ offices, 

and others understand the goal can they take steps toward making it a reality. When 

Donald M. Berwick, M.D., president of the Institute for Healthcare Improvement (IHI), 

described a transformed health care system, he imagined a “place with no needless 

deaths, pain, waits, helplessness and waste.”457 Similarly, the disability community must 

define an inclusive and accessible environment, and communicate that vision 

consistently and repeatedly. 

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b. Ride the Wave 

Hospital and medical office building construction is undergoing unprecedented growth. 

Aging buildings, the migration of procedures from hospital to outpatient settings, and 

most important, the aging baby boomer generation are just a few of the factors feeding 

this growth. Throughout, a new vision for health environments is emerging: patientcentered well-being is driving the design of services and buildings for the first time. As 

services and buildings evolve, disability communities must ride the wave by seeking 

every opportunity to influence best practice in inclusive and accessible designs. 

c. Drive System-Level Change 

Historically, people with disabilities have improved health care service quality primarily 

through programs established and managed locally; that is, with a project-by-project 

approach such as a center in Chicago for women with disabilities or a clinic in 

Washington, DC, for children who are deaf. Far-reaching, system-wide improvements of 

consequence to the larger community of people with disabilities have been much harder 

to achieve. James Reinertsen, M.D., a senior fellow at IHI, compares the challenge to 

that faced by WWII leaders considering the invasion of Normandy. 

It would be one thing to prove at a project level that you could land a boat on 

the coast of Normandy and unload some troops and weapons. It is quite 

another thing to commit to a full-scale invasion. We’ve proved over and over 

that we can do small projects—to land a boat on the coast. It’s now time that 

we mounted a concerted invasion on a large scale.458

d. Change Hearts and Minds 

The ADA guaranteed equality of opportunity for people with disabilities in most spheres 

of community life, yet health care settings and processes in the United States continue 

to regularly and systematically exclude people with disabilities from quality care. While 

buildings, medical equipment, and health care delivery processes must change in order 

to ensure equality of access, transformational change must also take place that obliges 

a fundamental reframing of core values, habits, and beliefs. As one summit participant 

explained, it is one thing to mandate access in building standards, but it is quite another 

235 
to make acceptance happen in hearts and minds: “You have to start by building 

sensitivity to the issues and literally create the will to take action.” 

e. Reframe the Issues 

As the population ages, people with disabilities make up one of the fastest growing 

segments of society. Examining the issue from a policy perspective, one participant 

suggested, “Couldn’t we get further faster by universalizing some of these needs rather 

than just talking from a disability perspective?” While disability rights laws are frequently 

perceived as focusing on a narrow range of people with specific disabilities, such as 

those who use wheelchairs or those who are blind or deaf, patient-centered care and 

patient safety should apply to and encompass everyone. Similarly, principles of 

universal design respond to the greatest possible range of human needs and 

characteristics. The athlete who is using crutches temporarily, the parent pushing a 

child in a stroller, and the older person with a vision impairment each benefits from 

universal design, which should be a foundational principle for patient-centered care. By 

reframing the goal from strict accessibility to patient-centered care built on the 

foundation of universal design, the long-term vision for meaningful reform of health care 

for people with disabilities comes into focus. 

f. Create Capacity 

Medical students; nursing, hospital, and clinic staff; and allied health professionals 

receive little education about the meaning and impact of disability on individuals and 

society. Most health professionals lack a basic understanding of the health issues 

people with disabilities face. Effective, accessible, high-quality health care for people 

with disabilities requires that providers have a deep understanding of disability issues 

and access to the resources required to accommodate the individual needs of patients, 

such as sign language interpreters, height-adjustable examination tables, and sufficient 

time to ensure that examinations and treatments can be carried out appropriately. 

Training at every level of professional education is an essential element to achieve the 

goal of such professional competency. Increasing the number of health care 

professionals in the workforce who possess the required knowledge and capacity to 

236 
care for people with disabilities will help spur the critical mass required to achieve the 

level of systemic change that must occur to improve the quality of care and reduce 

health disparities for people with disabilities. 

E. Conclusion and Recommendations 

The 2008 Summit on Health Care for People with Disabilities marks a significant 

milestone in the movement to improve health and health care for people with disabilities 

in the United States. Participants made it clear that they perceived the summit as a 

starting point. While important education took place, and themes, ideas, and strategic 

action plans that hold great potential emerged throughout the summit, time limitations 

made it impossible to discuss every issue that affects health care for people with 

disabilities. Therefore, further discussion and the involvement of additional stakeholders 

are urgently needed. Meanwhile the summit outcomes can be used as a road map by 

the disability community, policymakers, and health care professionals and researchers 

to continue a focused dialogue that will influence the direction and substance of the 

policy discourse going forward. 

The following specific recommendations emanated from the summit.

RECOMMENDATION:

Congress should establish a technical assistance system through which states, 

health plans, clinics, hospitals, diagnostic and treatment centers, individual medical 

practitioners, equipment manufacturers, people with disabilities, and others can 

easily obtain centralized information on universal standards of care and related 

practical resources for ensuring full access to culturally competent health care 

services for people with disabilities. 

RECOMMENDATION:

Health care accreditation organizations must play a principal role in ensuring that 

health care delivery provided to people with disabilities meets basic standards of 

cultural competency and accessibility. Accreditation bodies should evaluate health 

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care institutions based on the extent to which the institution meets minimum 

architectural accessibility in accordance with the ADA Architectural Guidelines 

(ADAAG); rewards the implementation of universal design principles in health care 

settings; has established mechanisms to ensuring that programmatic 

accommodations are provided (e.g., sign language interpreters, height-adjustable 

examination tables, wheelchair-accessible weight scales, lifting assistance, 

materials in alternative formats); and has established grievance procedures that 

ensure people with disabilities can resolve problems they encounter in a timely 

way. 

RECOMMENDATION:

The Association of American Medical Colleges (AAMC) and the Liaison Committee 

on Medical Education (LCME) should convene a workgroup charged with 

identifying specific disability competencies that should be required of health care 

professionals before graduation from medical and residency training programs, and 

translate these competencies into specific course recommendations that can be 

adopted by medical training programs. Competencies should include the core 

knowledge and skills required to provide developmentally appropriate health care 

transition services to young people with intellectual and developmental disabilities; 

awareness of language and cultural issues related to the Deaf community; and 

general awareness of health care issues and concerns of people who are blind or 

have vision impairments, women with disabilities, and others within the disability 

community. 

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CHAPTER 7. Examples of Effective Health Care, 

Research, and Related Programs for 

People with Disabilities 

The programs highlighted in this chapter emphasize health and mental health care and 

health education and promotion for people with disabilities, including women with 

disabilities, people with intellectual and developmental disabilities, people who are deaf 

or hard of hearing, and people who are blind or have vision impairments. Also included 

are several projects that involve structural innovations that hold some promise for 

improving health care and health outcomes for people with disabilities. 

Most of these programs serve either women or people with specific disabilities in 

settings where they are the primary beneficiaries, rather than including them in 

programs that serve a broader population. While some of these programs are located 

within hospital or medical rehabilitation settings and draw upon the resources of those 

organizations, in most cases services are still provided specifically for subgroups of 

people with disabilities rather than being integrated into programs meant for a more 

diverse population. Further, some programs serve relatively small numbers of people 

with disabilities, thereby raising the question of how the program or elements of the 

program can be expanded or replicated effectively in order to provide services to more 

people across more health care settings. It is likely that these programs serve small 

numbers of people because funding and staffing are limited. In any event, most people 

with disabilities do not have access to such services and instead must seek care from 

traditional providers. 

Various key informants and stakeholders have suggested that disability-specific 

programs represent the best approach to providing health care and related services to 

people with disabilities because of the extensive structural problems in the health care 

delivery system, the lack of professional training and awareness about the needs of 

people with certain disabilities, and other documented barriers to care.459 These 

observations suggest the need for further exploration of methods to apply what has 

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been learned from these and other programs to increase effective health care services 

for people with disabilities. 

A. People with Physical Disabilities—An Effective Program 

1. AXIS Healthcare, Greater Twin Cities Area, Minnesota 

Contracted by a Minnesota Department of Human Services program called Minnesota 

Disability Health Options (MnDHO) in 2001, AXIS Healthcare founded UCare Complete 

for Twin Cities area residents with physical disabilities who are between the ages of 18 

and 64. The program combines physician, hospital, home care, nursing home care, 

home- and community-based services, and other care into one coordinated care system 

that maximizes independence while providing person-centered and person-directed 

services. The plan was designed because people with disabilities who participated in 

the Medicaid program in the target counties were experiencing poor access to health 

care services, were unable to obtain accommodations in health care settings, and found 

that few health care providers understood their particular needs. This plan covers only 

people with physical or mobility disabilities—who are often unable to obtain appropriate 

services in conventional health care settings. 

UCare Complete applies the coordinated care approach by addressing the specific 

needs of more than 1,000 adults with physical disabilities who have voluntarily enrolled 

in the program, up from 200 in 2004. Each participant works one on one with a nurse to 

develop an individualized care plan. Examples of services designed to meet individual 

needs include prearranged personal assistance to undergo diagnostic procedures or to 

use an exam table, and home or work visits instead of office visits to avoid accessibility 

problems. A panel of people with disabilities provides ongoing feedback about the 

program’s design and implementation. 

Consumers report high levels of satisfaction with the program. In the first year following 

the switch from noncoordinated services to UCare Complete from noncoordinated 

services, 81.3 percent of consumers reported that UCare services provided better 

managed care than previous services, and 74.6 percent reported an improvement in the 

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availability of experts to answer their questions. These and other gains in consumer 

satisfaction saw additional increases over the following 2 years.460 One man, an AXIS 

member since 2001, says that AXIS is “like a family. We all know each other by name; 

we’re not just a number. You have a team—the nurse, the social worker, and the person 

who can approve what’s needed—and you’re all on the same page.”461 

After studying UCare Complete, researchers concluded that care coordination for 

people with disabilities can achieve the national health objectives expressed in “Healthy 

People 2010” to close the gap in access to care for people with severe disabilities. 

Access to disability-competent providers is enhanced through delivery system design, 

clinician support, self-management support, and clinical information systems. Enrollees 

become more knowledgeable about the importance of primary and preventive care, and 

report more productive interactions with their physicians.462

Further, UCare Complete holds the important promise of cost-effectiveness. 

Coordinated health care can be more efficient and effective than the piecemeal care 

that is typical of noncoordinated systems. AXIS and UCare anticipate cost savings by 

serving the comprehensive health needs of individuals.463

B. People with Developmental Disabilities—Effective Programs 

1. South Dakota Rosebud Developmental Clinic, Sioux Falls, South Dakota 

The South Dakota Rosebud Developmental Clinic operates in conjunction with the 

Sanford School of Medicine at the University of South Dakota in Sioux Falls, South 

Dakota. The program was organized 18 years ago to identify children from birth through 

5 years of age on the Rosebud Reservation who are at risk for developmental 

disabilities, provide immediate care through early intervention, and refer them to 

additional medical services provided by local agencies and facilities. 

Native Americans continue to experience significant health disparities compared with 

the general population.464 Before the clinic was established, children and parents on the 

Rosebud Reservation were without local specialists to diagnose and evaluate 

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developmental disabilities. The clinic operates by sending local staff to the reservation 

to perform developmental screenings. High-risk children who are identified are referred 

to the clinic for further evaluation and treatment. Once a month, a team of professionals 

(psychologist, physical/occupational therapist, speech therapist) and two or three 

graduate students perform full evaluations for children who are referred to the clinic. 

Staff members use specific, standardized evaluation methods (e.g., testing motor skills, 

communication skills, and cognitive/adaptive skills) that allow for flexibility and familial 

involvement. Children may also see a nutritionist, a developmental 

physician/pediatrician, and a geneticist at the clinic. After evaluation, an Individual 

Service Plan (ISP) is created and services are scheduled for eligible children.465

The Rosebud Clinic has been so successful that the model has been duplicated on both 

the Cheyenne River and Pine Ridge Reservations. Clinics at each of these locations 

provide services to approximately 8 to 10 children each month. Staff conduct monthly 

conference calls to prepare for the upcoming clinics.466

The Rosebud Developmental Clinic was initially funded with a 3-year pilot grant from the 

State Department of Education and the Bureau of Indian Affairs. Eventually, the 

Rosebud Tribe assumed funding responsibilities. Similar models are being used in the 

Cheyenne River and Pine Ridge clinics to achieve sustainability. The clinics use 

satisfaction surveys to gather and evaluate feedback about the quality and effectiveness 

of services from families and team members.467

2. Premier HealthCare—YAI/National Institute for People with Disabilities 

Network, New York 

Premier HealthCare, an agency in the YAI/NIPD (National Institute for People with 

Disabilities) network,468 provides specialty health care practices for individuals with 

developmental, physical, and learning disabilities throughout New York City. The 

medical facility provides an integrated medical home for its patients. Premier offers the 

advantages of both a small group practice and a large academic medical center.469 

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The 11-year-old agency is staffed by doctors and professionals who have extensive 

training in working with people with disabilities. Premier HealthCare sees 8,000 to 

10,000 patients each year, with an average of 100,000 patient visits. Because people 

with developmental disabilities experience higher rates of secondary conditions than the 

general population, Premier’s comprehensive care clinic practice provides for patients 

not only to be seen by a primary care physician but to have immediate access to 

specialists offering a variety of services (e.g., dental, social work, and nutrition). 

Premier also conducts various outreach projects, particularly with the Latino population. 

The agency holds an annual Latino Health Care conference conducted in Spanish that 

provides technical and emotional support to this traditionally underserved population. 

Overall, Premier HealthCare is empowering patients and family members by providing a 

community of support and understanding. 

Premier HealthCare receives funding predominantly through Medicaid and minimally 

through Medicare. Patient surveys are conducted to evaluate customer satisfaction, and 

quality improvement plans are an integral part of each discipline to ensure progressive 

growth and modification of outdated standards. 

3. Center for Development and Disability, University of New Mexico, 

Albuquerque 

A University Center for Excellence in Developmental Disabilities (UCEDD), the Center 

for Development and Disability (CDD) at the University of New Mexico in Albuquerque is 

a statewide organization established in 1990 that provides a variety of person- and 

family-centered health care services for individuals with disabilities, especially 

developmental disabilities. CDD works for the full community inclusion of people with 

disabilities and their families by engaging individuals in making life choices, partnering 

with communities to build resources, and improving systems of care. 

CDD’s approximately 140 employees serve people of all ages with developmental 

disabilities, autism, and physical and mental health disabilities throughout New Mexico. 

This work is guided by four central values: (1) cultural and linguistic diversity; 

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(2) inclusion and accessibility for all individuals; (3) partnerships and collaboration that 

encourage capacity-building; and (4) innovative, interdisciplinary, and research-based 

practice.470 These values are applied through CDD’s work in four areas: interdisciplinary 

training, information dissemination, direct service and technical assistance, and applied 

research. Many programs draw on more than one of these areas. CDD’s diverse work 

includes coordinating a statewide disability and health alliance, building community 

groups, running conferences and leadership trainings, and maintaining the most 

comprehensive disability resources collection in New Mexico. An array of technical 

assistance and trainings are offered, including at-home online trainings for people with 

disabilities. These initiatives strive to provide consumers with education that integrates 

the knowledge, skills, values, and methods of distinct disciplines such as medicine, 

nursing, physical and occupational therapy, speech therapy, social work, psychology, 

nutrition, family services, special education, and education administration.471

Preventive strategies are an important part of mental health, family support, and early 

childhood care efforts. Other direct services for children include care for youngsters who 

have deafness and blindness; autism screening and support; case management and 

service coordination for medically fragile children; family consultations; home visitations 

and trainings for families with children at risk for developmental delays; and trainings for 

health care professionals, educators, families, and people with disabilities about caring 

for patients, students, family members, and themselves. CDD also provides 

supplemental services to Native American children with developmental disabilities and 

special needs (motor, speech and language, cognitive, and medical), including 

evaluation, diagnosis, referral, and some therapy. 

In fiscal year 2008, CDD provided clinical services for 1,784 people, many of whom 

received services multiple times, for a total of 24,968 service visits. CDD also presented 

387 trainings on a range of topics related to developmental disabilities, with a total of 

17,314 participants, a number that represents more than a 100 percent increase from 

2007. The center also responded to 2,433 technical assistance requests to schools and 

agencies, reaching more than 17,300 participants. The CDD Resource Center 

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responded to more than 5,200 requests for information, and the Information Center 

provided referrals and answered questions for more than 2,862 individuals.472

As a University Center for Excellence in Developmental Disabilities Education, 

Research and Services, CDD receives its primary funding from the Administration on 

Developmental Disabilities. State, Federal, and private grants make up the rest of the 

funding. 

CDD evaluates its work through client satisfaction feedback and outcome measures, 

typically assessed with surveys. Oversight comes from state agencies and advocacy 

organizations, as well as an in-house Consumer Advisory Board that reviews programs 

and works to improve them. CDD submits annual evaluation data to the Administration 

on Developmental Disabilities. The following are examples from the 2008 annual report. 

● 88 percent of respondents to a survey on Self-Directed Family Support users—

a program that develops self-directed plans and budgets for families of children 

with developmental disabilities—indicated that they were satisfied with the 

program overall; 68 percent reported they were highly satisfied.

● 75 percent of pediatric residents reported increased knowledge and skills in 

disability-related issues. 

● 75 percent of Medicaid users and potential users reported increasing their 

understanding of how to access services.473 

4. Westchester Institute for Human Development, Valhalla, New York 

A University Center for Excellence in Developmental Disabilities Education, Research 

and Services (UCEDD), the Westchester Institute for Human Development (WIHD) is a 

UCEDD in Valhalla, New York. A former affiliate of the Westchester Medical Center, 

WIHD became an independent nonprofit organization in 2005. Today, the institute 

provides coordinated health care to people with disabilities; provides training and 

technical assistance for people with disabilities, caregivers, family members, and health 

care professionals; and undertakes research. Operational values include self245 
determination, family- and consumer-directed supports, community inclusion, and 

cultural competence.474 WIHD addresses the longstanding health care disparities faced 

by people with disabilities. 

One of WIHD’s major roles is the provision of specialized outpatient health care for 

children and adults with developmental and other disabilities living in the middle and 

lower Hudson Valley areas of New York State and adjacent regions of Connecticut and 

New Jersey. Currently, WIHD serves more than 6,000 with developmental and other 

disabilities in the region. WIHD’s health care role includes primary health care services 

for adults with severe disabilities and complex health problems, as well as specialty 

health care for both children and adults. WIHD offers a comprehensive, coordinated 

model of health care provision specifically designed to address the often intensive, 

complex, and chronic health problems of these individuals. The institute has played a 

lifelong role in health care for many of its patients and has often been a critical resource, 

supporting families’ ability to care for family members at home, as well as people’s 

successful integration into the community. In parallel with its longstanding specialized 

health care mission on behalf of children and adults with developmental disabilities and 

other special health care needs, WIHD has a major professional and community 

education agenda for professionals in these fields.475 

WIHD provides consumers with access to medical care, social work, speech pathology, 

occupational and physical therapies, psychological support, early childhood 

development, and autism expertise. In addition to formal professional training and 

experience, many staff members are personally familiar with disability as parents or 

siblings of people with disabilities. WIHD works to promote the concept that people with 

disabilities require primary care services and need to be included in health promotion 

activities. Preventive efforts include the development and dissemination of health 

promotion programs that highlight health self-management practices, including nutrition, 

exercise, hygiene, and smoking and drinking cessation. WIHD partners with the SelfAdvocacy Association of New York State to promote lifelong self-advocacy and 

autonomy, and assistive technology that allows people to age in place. 

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Westchester County contracts with WIHD to oversee child welfare services for 

approximately 600 children.476 The organization has pioneered an innovative, 

comprehensive program that serves foster, adoptive, and biological families. WIHD’s 

Children’s Advocacy Center is one of only two programs in New York State that 

provides forensic medical and psychosocial assessments of any child who may have 

experienced physical or sexual abuse. In addition, WIHD provides service coordination 

to more than 2,200 families with children up to 3 years of age who have developmental 

delays, and the institute’s Early Childhood Direction Center offers information and 

referral to families with children ages 3 through 5. 

The institute’s also offers services that reach communities across the seven-county 

Hudson Valley region. These include assistive technology programs for school districts 

and an array of programs for children and families, including the Hudson Valley 

Regional Center for Autism, applied behavior analysis, emergency preparedness, and 

transition services for youth entering adulthood. Finally, in conjunction with New York 

Medical College, WIHD provides training for a range of interdisciplinary professionals 

through its Leadership Education in Neurodevelopmental and Related Disabilities 

(LEND) and Leadership Education and Developmental Disabilities (LEADD) programs. 

Its distance learning initiatives reach trainees in the U.S. Virgin Islands and Puerto Rico. 

Institute programs are evidence based, and ongoing evaluations are conducted to 

ensure that high-quality services are provided. WIHD efforts have been featured in a 

number of publications and conferences.477 Further, WIHD has recently implemented 

an electronic health records system to standardize its data collection and evaluation. 

As a UCEDD, WIHD receives funding from the Federal Administration on 

Developmental Disabilities and the U.S. Bureau of Maternal and Child Health. The New 

York State Department of Education, Westchester County, and other sources provide 

additional funding.478

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C. Women with Disabilities—Effective Programs 

1. Disabled Women’s Health Center, University of Alabama, Spain Rehabilitation 

Center, Birmingham 

The country’s first gynecological clinic for women with disabilities, the Disabled 

Women’s Health Center at the University of Alabama’s Spain Rehabilitation Center, in 

Birmingham, was founded by Dr. Aimee Jackson in 1989 after several women with 

disabilities patients noted the lack of high-quality, accessible health care. The clinic has 

provided services to approximately 500 patients who range in age from 17 to 87 and 

reside in Alabama, Mississippi, Tennessee, and Florida. About 35 to 40 percent of the 

clinic’s patients are women with spinal cord injuries, and about 20 percent have spina 

bifida. Some of the women who are served also have other disabilities, including stroke, 

multiple sclerosis, rheumatism, dwarfism, and scoliosis. The clinic also serves deaf 

patients. 

The clinic operates two afternoons each month, and six appointments are scheduled 

during each clinic session. Appointments are about 2 hours in length, to allow for 

thorough examinations and ensure that patients do not have to return for multiple 

examinations. Examination facilities and equipment are accessible and include heightadjustable examination tables. Women are provided with any assistance they might 

require to get on and off the examination table, and with positioning to ensure comfort. 

Clinic staff members understand the impact of specific disabilities on reproductive 

capacity and other aspects of women health, and they ensure that the individual needs 

and requirements of each patient are taken into consideration. After examinations staff 

meet with patients to discuss health care issues and concerns, including sexual function 

and relationships, and to answer any questions patients may have. Annual screening 

and diagnostic tests are recommended, including mammograms, if appropriate. 

The clinic assesses its effectiveness and quality through annual patient satisfaction 

surveys that seek feedback from patients on issues such as their level of comfort, 

satisfaction with accommodations, whether or not they received the information they 

sought, and whether their questions were answered. The surveys are used to monitor 

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the clinic’s overall operation and to adjust or improve services. Patients are also 

encouraged to communicate with the clinic staff by phone and email if they have any 

questions, concerns, or problems. 

In addition to providing direct services, clinic staff members respond to questions from 

other practitioners treating patients with disabilities who are pregnant or have other 

women’s health issues. Staff encourage and assist women with disabilities to be active 

participants in their own health care. In addition, the center conducts research into 

health issues for women with disabilities, such as sexual and urological function and 

menopause. The clinic has recently incorporated a transition program for young adults 

with disabilities, to help them make the transition from child to adult health services. 

The clinic is supported by Medicare, Medicaid, and private health insurance 

reimbursements and grants for the development of educational materials and research. 

2. Breast Health Access for Women with Disabilities, Alta Bates Summit Medical 

Center, Berkeley, California 

Breast Health Access for Women with Disabilities (BHAWD) is the rehabilitation 

services program of the Alta Bates Summit Medical Center, in Berkeley, California. 

BHAWD offers an accessible clinic for free breast exams, breast self-examination 

training, general breast health management education, and mammogram referrals. The 

program was conceived in 1994, when a Susan G. Komen Breast Cancer Foundation 

grant funded a town hall meeting to explore the difficulties women with disabilities 

encounter in accessing breast health services. After the meeting and subsequent 

conferences, the program was initiated in 1995; clinical services began in 1997. Alta 

Bates staff, women with disabilities, and breast cancer survivors spearheaded BHAWD 

in response to a gap in women’s health services, including breast health. At the time, 

women with disabilities were ignored in cancer publications, breast health programs, 

and most public health research. In fact, staff members reported encounters with many 

women who had never had a mammogram or clinical breast exam.479

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The BHAWD staff includes a manager, administrative assistant, education/outreach 

specialist, and nurse practitioner. BHAWD provides clinic services twice a month and 

reports approximately 110 patient visits annually. The clinic provides accessible clinical 

breast exams, breast self-examination education, and mammogram referrals for women 

20 years of age and older who are blind or have vision impairments, who are deaf, or 

who have physical or developmental disabilities.480 Various accommodations are 

provided, including ASL interpreters, height-adjustable and accessible exam tables, and 

reimbursement for personal assistance services when women bring their own 

attendants to a clinic visit. 

Drawing on its clinical experience, BHAWD developed the country’s first protocols for 

adapted breast screening services and created trainings for physicians and other care 

providers, such as the Women Be Healthy program for women with cognitive 

disabilities. In addition, the group has produced several publications and a nationally 

distributed DVD on mammography training. These activities are in keeping with the 

organization’s long-term goal of empowering women to be their own advocates and 

encouraging other health care providers to adopts its clinical component. 

Within the Alta Bates Summit Medical Center, the group leads trainings for all staff. As a 

result, schedulers in that medical system now give women with disabilities additional 

appointment time, and everyone who calls for an appointment is asked if she requires 

accommodations. The program manager estimates that more than 2,500 members of 

the California Association of Radiology Technology and at least 700 mammography 

technicians have attended BHAWD trainings.481 BHAWD also distributes its materials to 

community medical centers and assisted living facilities, as well as at conferences. 

BHAWD administers client satisfaction surveys for all trainings, media materials, and 

clinical services. Clinic users and people who participate in trainings report high levels 

of satisfaction. In data collected from women with disabilities who used the breast health 

clinic in 2007, 100 percent of consumers rated the care they received during their visit 

as either “Good” (18 percent) or “Very Good” (82 percent).482 All said they were likely to 

recommend the clinic to others; the majority (77 percent) rated the likelihood as “Very 

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Good.” They rated BHAWD staff members either “Good” or “Very Good.” Surveys from 

mammography technicians who attended four of BHAWD’s continuing education 

conferences in 2006 and 2007 rated the conference as either “Very Good” or “Good,” 

with 67 percent rating their training as “Very Good” and almost one-third rating their 

training as “Good.”483

One client stated: 

I find all of them to be very approachable . . . ; my speech impairment is never 

a problem. I always have a good experience with the BHAWD clinic. They’re 

much more thorough than any other practitioner I’ve had. I like going—I feel 

that it’s one place where I can get the appropriate attention. They are more 

receptive, very professional yet very welcoming and warm. They know you by 

name. It’s very personalized. The care is personal and client-specific. They 

have wonderful disability awareness. They know the community that they 

serve.484 

BHAWD has been supported with grants from a dozen private foundations, and the Alta 

Bates Summit Medical Center also provides direct support in the form of rent, 

telephones, and development and graphic design assistance. 

3. Women with Disabilities Center, Rehabilitation Institute of Chicago 

Founded in 1991, the Women with Disabilities Center (WWDC) of the Rehabilitation 

Institute of Chicago (RIC) was the country’s first community-based health resource 

center for women with disabilities. WWDC shares staff and space with RIC, which is 

known nationally for its expertise in physical medicine. The center provides a variety of 

direct services to women with disabilities and also educates the medical community 

about the needs of this population. WWDC promotes the safety and dignity of women 

and girls with disabilities, with the aim of helping them practice self-determination in 

achieving lifelong physical and emotional wellness.485 The center was launched by a 

group of women with disabilities, including WWDC’s current director, who believed that 

they were not receiving necessary health care services. 

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Partnering with Northwestern University’s Prentice Hospital, WWDC refers women with 

disabilities to a team of physicians, nurses, and occupational therapists who are familiar 

with disabilities and who provide specialized care. This team provides basic 

reproductive services, including pelvic exams, mammograms, and family planning, 

which are frequently unavailable for women with disabilities from traditional health care 

providers. 

WWDC recognizes that health care for women with disabilities involves more than 

clinical services; other direct services are also sometimes needed. For example, 

WWDC offers free, confidential domestic violence support and information through 

RIC’s Domestic Violence Services Program. The Mentor Program pairs teenage girls 

and adult women with disabilities and funds regular activities. WWDC also offers a 

weekly support group that allows women with disabilities to discuss personal and health 

issues. This group encourages relationships that combat the danger of social isolation 

and fosters ongoing friendships. 

WWDC’s outreach component educates members of the area health care community 

about disability-specific issues and needs. This prong of WWDC’s program also 

partners with Northwestern University to improve the accessibility of mammography 

providers. In addition, WWDC organizes two free educational seminars each year for 

health care providers and others concerned with health care for people with disabilities; 

produces educational publications that are distributed to the broader medical 

community; and provides technical assistance, information, and advice on treatment 

and care for individuals with disabilities to diverse health care providers regionally and 

nationally. 

In 2007, 384 women with disabilities used WWDC’s clinical services. The center 

responded to 1,560 general requests for information, and the domestic violence 

program responded to 214 calls for assistance. Within the domestic violence program, 

36 women who are survivors of domestic violence volunteered with the program and 

helped provide 19 trainings for an estimated 620 shelter workers. Thirty young women 

and teens participated in the Mentor Program as either mentors or mentees, and the 

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support group, with 10 members, met 100 times. WWDC staff made 830 educational 

and advocacy presentations to service providers, clinicians, and students, and the 

center’s newsletter reached roughly 8,000 individuals and organizations.486

Today, the center is supported primarily by grants from the State of Illinois, which 

conducts quality monitoring; RIC provides in-kind support. WWDC conducts general 

satisfaction surveys for most of its programs. Pre- and postsurveys are conducted for 

the Mentor Program.487

4. Center for Women with Disabilities, Magee-Women’s Hospital, University of 

Pittsburgh Medical Center 

The Center for Women with Disabilities, Magee-Women’s Hospital, at the University of 

Pittsburgh Medical Center (UPMC), offers comprehensive, patient-centered care that 

integrates accessibility and accommodation for women with physical disabilities. The 

center provides preventive medical services for women with disabilities, and also refers 

patients to other culturally competent physicians who operate in accessible facilities and 

can provide appropriate accommodations. The center also offers educational programs 

for youth and their parents and caretakers, and works with the UPMC’s other centers to 

develop and improve system-wide accessibility and services. Founded in December 

2001, the program was pioneered by a group of 15 to 20 women with disabilities who 

recognized their community’s need for accessible, comprehensive, and respectful 

health care for women with disabilities. 

Staffed by an obstetrician/gynecologist and an internist, the center provides clinical care 

to women with disabilities two afternoons each week. The clinic conducts annual 

physical exams, Pap tests, and mammograms, as well as ultrasound tests, as needed. 

Four appointments are scheduled each afternoon when the clinic is open. The schedule 

allows ample time for staff to assist women to undress and dress, get onto and off of 

examination tables, and get positioned. The center uses accessible equipment, 

including wheelchair-accessible weight scales, height-adjustable and otherwise 

universally accessible exam tables, patient lifts, and padded hydraulic stirrups for 

comfort.488 The clinic provides services to 250 to 300 women with physical disabilities 

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each year. Patients range in age from 18 to more than 90 years, reside in diverse 

geographic locations, and have a variety of disabilities, including arthritis and 

osteoporosis. About 70 new patients are seen each year, according to data from 

2007.489

The center’s staff—nominated in 2008 for an “outstanding UPMC staff” award—have 

remained consistent over time, which is both a function and an outcome of high morale. 

Training and limited staff turnover ensure high-quality service. According to the center’s 

director of Ambulatory/Outpatient care, one of the clinicians noted that the center “never 

makes a patient feel like she is a burden.” The staff tries to make patients feel like “they 

have all the time in the world” for them.490

In addition to health care, the center offers educational programs about sexuality and 

disability, including a program on socialization for teens with disabilities: Social You, 

Sexual You. The center also works with the University of Pittsburgh’s hospital-wide 

Disability Resource Center and the university-wide Center for Assistive Technology. 

These groups aim to improve overall accessibility, expand clinical services for people 

with disabilities, and train staff to work with this population. 

The center relies on a continuous evaluation process to ensure the best quality of 

service. Patients and caretakers receive evaluation forms after each appointment. 

These evaluations include questions about the ease of making appointments, personal 

comfort, respect and dignity, staff communication, the clarity of take-home health 

instructions, and general satisfaction. The director reports that most evaluations are 

very positive.491 Additional evaluation comes from a small committee of the women who 

founded the center, who meet bimonthly to discuss general disability topics, and to 

identify and address any issues and problems. 

The center is funded primarily by the State of Pennsylvania, public and private insurers, 

and grants. Because insurance reimbursements often fall short of the cost of health for 

people with disabilities, grants and state funds are essential for sustaining the program. 

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5. Health Promotion Campaign for Women with Physical Limitations, Center for 

Research on Women with Disabilities, Baylor College of Medicine, Houston 

Between 2005 and 2007, members of the Center for Research on Women with 

Disabilities (CROWD) at Baylor College of Medicine in Houston, Texas, initiated the 

Health Promotion Campaign for Women with Physical Limitations. Funded by a grant 

from the Houston Endowment, this program was an outreach effort directed at women 

with physical disabilities, care providers, and friends and family members. In an effort to 

inform and “empower women with physical disabilities to improve their health and 

wellness,” CROWD staff and faculty developed educational materials and a website, 

and attended health fairs in the Houston region.492 CROWD’s efforts in the area of 

health promotion grew out of a recognition that disability adds another dimension to the 

problem of health disparities. People with disabilities face a number of disparities 

compared with the general population, including overall poor quality care, poor general 

health information, and low rates of health insurance.493 CROWD saw that such 

challenges are further compounded for women with disabilities, because their general 

reproductive health needs are often ignored by health care providers. 

Through its Health Promotion Campaign, CROWD engaged these challenges with a 

series of health promotion materials entitled “Removing Health Disparities for Women 

with Physical Disabilities.” Available in both Spanish and English, the promotion 

materials include topical newsletters (e.g., “Depression” and “Physical Activities”), 

motivational and inspirational posters, press releases, and other relevant data. The 

current CROWD Web site was designed to serve as a domestic and international 

clearinghouse for these materials, which can be downloaded and reproduced at no cost. 

CROWD staff and faculty distributed the promotion materials to 13 health fairs in the 

Houston area. CROWD staff estimate that they reached 14,913 women with physical 

disabilities, care providers, and others using this tactic.494

While the initial funding for the project has ended, project staff think that the impact of 

CROWD’s Health Promotion Campaign is ongoing. The Web site continues to receive 

roughly 7,000 visits each month, and it is being maintained and updated.495 The center 

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uses the promotion materials to supplement other programs. For example, revised 

versions of the original materials have been used to train volunteers in the Department 

of Health and Human Services (HHS) projects and in Christopher Reeve Foundation 

workshops for women with paralysis. One person who regularly uses these materials to 

facilitate workshops said: 

I thought it was great information in a format easy to understand and follow for 

the participants. The material was grouped together very well. . . . It told the 

women that every woman is the expert on her own body. . . . It is about 

acknowledging your disability, honoring it, and being an advocate for 

yourself.496

Finally, the campaign has helped CROWD staff and faculty develop a better 

understanding of the health care service gaps that women with disabilities face. As a 

result, they are now working toward the creation of a wellness counseling center that 

would use the information on the Web site in workshops, counseling, and new Internet 

applications.

D. People Who Are Blind or Have Vision Impairments—Effective 

Programs 

1. Blindness Support Services, Inc., Riverside, California 

Blindness Support Services (BSS), in Riverside, California, was established in 1992 to 

provide innovative approaches to assist residents who are blind or have vision 

impairments in Riverside, San Bernardino, Orange, San Diego, and Los Angeles 

counties in southern California to achieve independence and self-reliance.497 BSS 

provides services to approximately 600 clients a year in three age ranges: children 

(birth–5), adults (18–55), and seniors (55+).498

BSS creates an Individual Service Plan (ISP) for each client to maximize his or her 

ability to take advantage of the agency’s services. Specifically, the agency offers vision 

rehabilitation, which includes orientation and mobility, independent living skills, and 

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acquisition and use of adaptive technology. BSS also provides talking watches, clocks, 

scales, and other devices that help people live independently. 

In addition to vision rehabilitation, BSS provides various health care services. The 

Health and Wellness Plan was designed to address the problems that arise from the 

lack of healthy eating habits among individuals with blindness and vision impairments. 

BSS offers exercise plans tailored to the needs of the community and presents lectures 

on healthy eating. BSS’s partnership with Riverside County Regional Medical Center 

provides a family practice resident with the opportunity to work with BSS to learn how to 

address the various needs of patients who have vision impairments. 

BSS also specializes in working with child care centers to include children who are blind 

or have vision impairments. The overall goal of this initiative is to ensure that each child 

care center or facility possesses the capacity to serve children with vision 

impairments.499

BSS receives funding through public and private agencies, and city and county 

governments. 

2. LightHouse for the Blind and Visually Impaired, San Francisco 

The LightHouse for the Blind and Visually Impaired, San Francisco, is the largest 

agency providing direct service, advocacy, and information to the blind and visually 

impaired community of northern California.500 Since 1902, the LightHouse has offered 

solutions to living with vision loss. 

Through the LightHouse Client Services Program, individuals who are blind or have 

vision impairments receive orientation to LightHouse services, assessment of their 

rehabilitation needs, enrollment as a client, support services, and case management. 

Social workers and low vision specialists staff the program in San Francisco and in 

Marin and Humboldt/Del Norte Counties. 

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The LightHouse provides a wide variety of services, including vision rehabilitation—a 

process whereby people who have experienced vision loss learn new ways to approach 

tasks. Rehabilitation may include orientation and mobility, adaptive technology, and 

independent living. The agency’s comprehensive intake process ensures that clients 

people will not only receive appropriate services from the LightHouse, but will be 

referred to any additional services in the community that might be beneficial. 

The Vision Loss Resource Center (VLRC) provides information to individuals 

experiencing vision loss, their families and friends, and professionals in the field. Among 

the resources available through VLRC is an adaptive technology and health seminar, 

which provides an audio transcript and information handouts of presentations on 

adaptive equipment, including accessible tools for glucose monitoring, weight 

management, healthy food preparation, and exercise equipment that aids in maintaining 

health. 

The LightHouse’s Low Vision Clinic operates in collaboration with the University of 

California, Berkeley School of Optometry, which offers low vision evaluations. The clinic 

assists clients by recommending various strategies and techniques that will maximize 

residual functional vision. The clinic prescribes appropriate adaptive devices that will 

help them to regain functional independent living skills.501 

After they have received services, clients fill out a customer satisfaction survey to 

determine outcomes and areas for improvement. In 2007, 209 clients identified specific 

goals and participated in programs and services that assisted them to reach those 

goals. Over 90 percent of them reached their vision rehabilitation goals, according to 

customer satisfaction surveys.502 

The LightHouse supports programs through individual and corporate donations, 

including bequests, LightHouse Enterprises, return on investments, and Government 

grants and contracts. 

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E. People Who Are Deaf or Hard of Hearing—Effective Programs 

1. Deaf Access Program, Mt. Sinai Hospital, Sinai Health Systems, Chicago 

The Deaf Access Program (DAP) of Mt. Sinai Hospital, in Chicago, offers a 

comprehensive program of medical and mental health services for children and adults 

who are deaf. DAP is sensitive to both the language and culture of the Deaf community 

and is strengthened by a program manager who is deaf, three physicians who are fluent 

in American Sign Language (ASL), three ASL staff interpreters, and three mental health 

therapists who are also fluent in ASL. This program meets a specific and critical need 

within the Chicago Deaf community, because people who are deaf have historically 

found it difficult to obtain appropriate health and mental health care because of 

substantial communication barriers.503

An estimated 50,000 people who are deaf or hard of hearing live in the metropolitan 

Chicago area. DAP currently serves approximately 1,300 patients and provides full 

communication access to medical, mental health, and support services. In addition to 

interpreting for patients in clinical settings, ASL interpreters travel to affiliated clinics in 

the Chicago area and provide interpreter services. DAP also coordinates the 

deployment of outside interpreters, as needed, to ensure that deaf patients have access 

to effective and appropriate communication during health care visits.504 

Sinai offers a wide range of psychiatric and behavioral health services for adults and 

children who are deaf or hard of hearing. These services include diagnostic interviews, 

psychiatric evaluations, psychological testing, crisis intervention, individual and family 

therapy, parenting support and intervention services, and consultations. DAP’s 

psychiatry and behavioral health staff, including two clinical therapists and a 

psychologist, are fluent in ASL and well versed in Deaf culture. Sinai Health Systems 

pay for the cost of Sinai’s staff ASL interpreters. 

DAP is using innovative techniques to address problem areas in the field. After many 

certified interpreters left hospitals to join Video Relay Service interpreter call centers, 

the Deaf Access Program began experimenting with the use of video remote 

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interpreters (VRIs) to provide interpreting services to patients in after-hours emergency 

situations. DAP staff think that patient wait time for interpreter services will be cut 

substantially and satisfaction will improve with the use of VRIs. Ultimately, DAP hopes 

to share its interpreters with hospitals throughout the Chicago area, using the VRI 

service.505

Sinai was the first hospital in the United States to offer a videophone booth in the lobby 

for deaf or hard-of-hearing patients who use ASL. The videophone booths enable 

communication between these patients and the hearing community by connecting the 

caller to a nationwide network of live ASL interpreters who facilitate conversations with 

hearing individuals. 

The DAP has undertaken significant research in collaboration with Advocate Illinois 

Masonic Medical Center. With a grant from the Michael Reese Health Trust, DAP 

undertook a face-to-face survey of the Deaf community on issues such as doctor visits, 

communication problems, barriers to access, and physician and staff knowledge of the 

Deaf community.506 

2. Deaf and Hard-of-Hearing Program, Advocate Illinois Masonic Medical Center, 

Chicago 

The Deaf and Hard-of-Hearing Program at Advocate Illinois Masonic Medical Center, in 

Chicago, began more than 25 years ago. The program provides mental health services 

and prevention education, and reaches more than 500 people who are deaf in 

Chicago’s six-county region and beyond. During 2007, approximately 100 patients 

received mental health services each month; the annual total of contacts was 3,400. 

Some of these contacts were made through telepsychiatry services using interactive 

videoconferencing, which allows deaf patients to take advantage of certain specialized 

services that are otherwise inaccessible. In 2007, video technology linked the program’s 

culturally and linguistically competent providers with patients from geographically 

dispersed points of access in a total of 500 telepsychiatry encounters. 

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In addition to mental health services, the program engages in prevention education that is 

understandable and usable by people who are deaf. Since most people who are deaf are 

not fluent in English, they may find it difficult to understand certain written materials and 

spoken presentations. Signed videotape or digitalized information is an effective 

alternative to convey health promotion information. Therefore, the program team is 

developing a library of video pamphlets featuring deaf actors, who present signed 

narration as well as vignettes and graphics, and apply a storytelling approach that reflects 

the information-sharing style common in ASL. These videos have been incorporated into 

various education initiatives that are available on the program’s Web site.507 The program 

features health education pamphlets presented in streaming video on a variety of topics, 

including HIV/AIDS, sexually transmitted diseases, breast health, and diabetes. Also 

available are interactive screenings for depression, anxiety, and risk of heart attack, as 

well as programs for smoking cessation and depression management. 

3. Metropolitan Hospital Consortium, Communication Services for the Deaf of 

Minnesota, Minneapolis 

The Metropolitan Hospital Consortium, one of the Communication Services for the Deaf 

of Minnesota, in Minneapolis, was established in November 2005 to provide the 26 

member health facilities located in the greater Twin Cities area ASL interpreter services 

in emergency situations.508

The consortium was created to provide interpreter services for members of the Deaf 

community who have traditionally faced significant problems gaining access to health 

care when unplanned situations arise and prescheduling of an interpreter has not been 

possible. Interpreters must meet certain qualification requirements.509 Under the 

consortium’s operational contract, ASL interpreters are paid to be listed on a reserved 

24/7 on-call schedule, allowing them to respond immediately when a need arises at a 

member facility. The consortium operates three shifts per day with three interpreters on 

call for each shift. The consortium guarantees that an interpreter will arrive at a facility 

within 2 hours; 95 percent of the time, the consortium is able to send an interpreter 

within 1 hour.510

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The consortium monitors and conducts quality improvement of its services by 

maintaining daily printouts containing all call information to ensure adequate arrival 

times. Consortium representatives meet monthly to discuss any issues that may have 

arisen and to identify methods for improvement. Monthly meetings include a joint 

session with members of the Deaf or hard-of-hearing community to ensure that their 

feedback is incorporated into the evaluation and quality improvement process. Members 

of the interpreter pool also meet monthly, to discuss pertinent issues and identify any 

solutions. This communication process allows all stakeholders to have an ongoing voice 

in the system. As a result, hospital representatives are less concerned about the 

potential for litigation if a patient who is deaf comes to the emergency room for service; 

members of the Deaf community know they will have an interpreter in an emergency; 

and interpreters have a manageable workload and receive fair compensation.511 

The consortium’s monthly operating costs are about $22,500. Each of the 26 members 

pays $433 a month to ensure that emergency interpreting services will be available. The 

remaining cost is divided proportionately among the members on the basis of the actual 

services they use in a given month.512

4. CATIE Center, the College of St. Catherine Interpreter Education Program, St. 

Paul/Minneapolis 

The Collaboration for the Advancement of Teaching Interpreter Excellence, known as 

the CATIE Center, is one of six centers working in partnership as the National 

Consortium of Interpreter Education Centers (NCIEC).513 Created in 2005, the CATIE 

Center serves a 10-state region and has a primary focus of identifying effective 

practices in interpreting in the health care field.514

The center’s goal is to significantly increase the number of qualified interpreters in the 

field, while providing resources and opportunities that are accessible to interpreters of 

all backgrounds and experiences. Program members plan to create an online 

curriculum that can be used by both interpreter education programs and individuals who 

want to update their skills. The CATIE Center and NCIEC have developed a Web site, 

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www.medicalinterpreting.org, that provides a variety of useful resources, including CDROMs, DVDs, and links to relevant information.515

The CATIE Center has helped define some boundaries for interpreters in the health 

care setting, and these boundaries have to illuminate the role that interpreters can and 

should play in these settings. The center’s work has revealed a lack of interpreter 

education for Spanish-speakers.516 Additional research has revealed that interpreters 

often lack a common medical vocabulary and medical knowledge, which can hamper 

their ability to function adequately in medical situations.517

The CATIE Center and NCIEC are funded through 2010 by a Department of Education 

Rehabilitation Services Administration grant. 

5. Deaf Wellness Center, University of Rochester Medical Center, Rochester, 

New York 

The Deaf Wellness Center (DWC) is a program of the Department of Psychiatry at the 

University of Rochester Medical Center, Rochester, New York. The DWC has five fulltime staff members who are fluent in ASL and a number of trainees who engage in 

clinical services, teaching, and research activities that pertain to mental health, health 

care, sign language interpreting, and other topics that affect the lives of people who are 

deaf or hard of hearing.518 The center seeks to improve the quality of life of persons for 

whom hearing loss is a significant aspect of their identity or experience in the world.519

In the area of clinical services, DWC physicians perform individual and group psychiatric 

assessments. The center conducts 2,000 to 3,000 units of service annually; 

approximately 100 patients are actively participating in care at a given time. The DWC 

provides evaluation and psychotherapy services to individuals of any age, couples, and 

families. Several psychotherapy groups conducted by the DWC are composed entirely 

of people who are deaf, and meetings are conducted by therapists who are fluent in 

ASL. The DWC also conducts psychiatric evaluations and provides consultation and 

forensic evaluation services to courts and Government on topics related to deafness, 

mental health, and health care. 

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The DWC seeks to play a leading role in advancing scholarship in the identification, 

manifestations, and treatment of psychological and medical disorders that affect people 

who are deaf or hard of hearing. The center has undertaken a variety of federally funded 

research projects, including “Toward Equity,” a multiproject mental health research program 

funded by the National Institute on Disability and Rehabilitation Research; “Optimization 

and Dissemination of Proven Reforms in Interpreter Education,” sponsored by the National 

Center for Deaf Health Research; and “Strong Connections,” a videoconference-based sign 

language interpreter service for remote health care settings. 

The DWC’s teaching program covers general topics relating to deafness and mental 

health. The Program for Deaf Trainees recruits medical interns who are deaf to work 

with both deaf and hearing patients (in partnership with sign language interpreters as 

necessary) at Strong Behavioral Health and Rochester Psychiatric Center. By the time 

they graduate, these students acquired skills and experience in providing mental health 

services to deaf and hearing patients. 

6. National Technical Institute for the Deaf, Rochester Institute of Technology, 

Rochester, New York 

The National Technical Institute for the Deaf (NTID) in Rochester, New York, is one of 

eight colleges of the Rochester Institute of Technology. The mission of NTID is to 

provide deaf students with outstanding technical training. The student body consists of 

1,350 undergraduate students who are deaf or hard of hearing, approximately 130 

hearing students who are taking ASL courses, and approximately 110 students enrolled 

in master’s degree programs preparing them to be teachers of children and adults who 

are deaf.520

NTID provides a variety of medical and counseling services for students. Students have 

access to doctors and nurses who are familiar with basic ASL and to a full-time 

interpreter. NTIS offers mental health counseling, and three ASL interpreters work with 

staff psychologists. The school offers a monthly eye clinic, a hearing aid shop, and oncampus audiology and hearing aid services.521 Mental health services are available 24 

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hours a day. In 2007, 148 deaf or hard-of-hearing students were seen for these 

services, with responses to 57 emergency calls.522

Additionally, NTID offers services to the greater Rochester community. A substance and 

alcohol intervention program offers support groups and communicates with the judicial 

system on behalf of people who are deaf who face legal, medical, or mental health 

problems. 

The International Center for Hearing & Speech Research (ICHSR) is a collaboration of 

NTID and other universities that focuses on age-related hearing loss, with the ultimate 

goal of preventing and reversing hearing loss at any age.523 The center received its 

third 5-year competitive program project grant from the National Institute on Aging (NIA

of the National Institutes of Health (NIH

) 

). 

F. Children with Disabilities—A Practice with Potential 

1. State Buy-In: The Family Opportunity Act 

The Family Opportunity Act (FOA) allows families with a child who meets the 

Supplemental Security Income (SSI) disability criteria and have an income under 

300 percent of the Federal poverty level (FPL) to buy in to Medicaid for that child. Since 

the enactment of FOA in 2006, Illinois, Iowa, Louisiana, North Dakota, Ohio, 

Pennsylvania, and Vermont have established buy-in programs. 

This program serves as a national model for innovative policies that can contribute to 

reducing the number of children with disabilities who still receive inadequate health care. 

G. Professional Education—A Practice with Potential 

1. Disability Standardized Patient Exercise for Medical Students, Tufts 

University Medical School, Medford, Massachusetts 

The Tufts University Medical School: Disability Standardized Patient Exercise for Medical 

Students, begun in 2001 with a grant from the Massachusetts State Developmental 

265 
Disabilities Council, targets third- and fourth-year medical students. The program is now 

required, and about 170 students participate. The goal of the program is to introduce an 

individual with a mobility disability who is seeking care for a health problem that is not 

disability-related. For example, a paid patient-educator who is a wheelchair user 

discusses her health concern, shoulder pain. She reports living an active life with family 

and friends. The goals of the exercise are to help students develop a comfort level 

working with a patient with a disability, dispel stereotypes about disability, and encourage 

students to learn how to differentiate between disability-related and other medical 

problems. The program is fully embedded in the medical school. 

H. Conclusion and Recommendations 

On examining the programs presented in this chapter, it becomes evident that the 

people with disabilities do not need extraordinary health care services or settings. In 

fact, these programs embody basic characteristics that all people hope will be available 

to them when they need health care services. These include health care providers who 

are familiar with the specific issues and needs of the individuals they care for, adequate 

time for thorough examinations and discussions between physician and patient, access 

to appropriate equipment and support services, and provider capacity to coordinate care 

and consult with specialty services when they are needed. 

Advancing these principles presents many of the same challenges health policy 

advocates have encountered in broader national health care reform discussions. The 

universally important elements of exemplary health care—defined by IOM as safe, 

effective, patient-centered, timely, efficient, and equitable—should be available for 

everyone, including people with disabilities. 

In serving people with disabilities, the basic challenge is to find ways to achieve these 

universal elements within the current fragmented system of health care delivery. As a 

practical matter, individuals within the disability population require specific 

accommodations in health care settings. However, the accommodations are not 

necessarily defined by primary diagnosis. For example, children with developmental 

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disabilities may also have mobility impairments and use wheelchairs, and people who 

are blind may also have arthritis or fibromyalgia. To avoid oversimplification by 

compartmentalizing the care needs of people according to diagnostic category, some 

health policy researchers argue that identifying universal crosscutting areas of quality of 

care and provider competency should be the starting point. As one leading health 

researcher put it, “At the core, the global dimensions of health care, if not patients’ 

particular experiences, are universal.”524

The health programs identified in this report provide high-quality services for the 

relatively small number of people who have access to them. The majority of people with 

disabilities, however, receive primary health care from providers who are not 

necessarily well equipped to provide culturally competent care. The appeal of 

developing and disseminating crosscutting guidelines is that they hold some promise for 

improving care not only for greater numbers of people with disabilities, who may never 

have access to the kind of specialized care featured in this chapter, but for everyone. 

This strategy builds on the experiences of these programs to bring information about the 

elements of culturally competent care to a wider practitioner audience. 

Federal agencies, including AHRQ, are well situated to lead an effort to develop such 

guidelines in concert with knowledgeable health policy researchers, people with 

disabilities, and health care providers. Other agencies within HHS, such as CDC, could 

provide leadership on developing methods to advertise, promote, and widely 

disseminate the guidelines to the public health and health care community. Resources 

should be identified that will pay for, or help defray costs of, certain services and 

equipment (for example, ASL interpreters and height-adjustable examination tables), 

and strategies should be identified for resolving key issues such as additional provider 

payment for extra time spent caring for patients with disabilities. 

In addition to the guidelines project, certain discrete, well-developed components of 

some of the reported programs lend themselves to being replicated and disseminated. 

Federal agencies involved in health care for people with disabilities should follow the 

lead of these programs and disseminate information their efficacy. 

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RECOMMENDATION:

Federal agencies improving access to appropriate and effective health care for 

people with disabilities—including the Agency for Healthcare Research and Quality 

(AHRQ), the National Institute on Disability and Rehabilitation Research (NIDRR), 

the Administration for Children and Families (ACF), and the Centers for Disease 

Control and Prevention (CDC)—should establish an interagency collaboration to 

produce guidelines that identify universal and crosscutting elements of quality 

measures that will drive delivery of health care in general and also for diverse 

people with disabilities. This endeavor should be undertaken in collaboration with 

agency experts, other disability and health policy researchers, leading disability 

and health practitioners (e.g., physicians who specialize in caring for women with 

disabilities, people who are deaf or hard of hearing, people with intellectual and 

developmental disabilities, as well as vision rehabilitation experts), and people with 

disabilities. The guidelines should be disseminated widely and promoted in medical 

education programs and among practitioners. 

RECOMMENDATION:

Federal agencies—including the Centers for Disease Control and Prevention 

(CDC), the Agency for Healthcare Research and Quality (AHRQ), and the 

Department of Health and Human Services (HHS) Office of Disability—should 

collect and disseminate information about models for improving access to care for 

people with disabilities. 

RECOMMENDATION:

The Centers for Medicare & Medicaid Services (CMS) should identify and support 

methods for providing coordinated primary health care to people with certain 

disabilities or multiple disabilities (e.g., mobility and developmental disabilities) in 

home or community settings rather than the offices of health care providers, in 

order to resolve some of the most pressing accessibility, accommodation, and 

transportation problems identified as barriers to care. The Minnesota UCARE 

Complete program could serve as a model to guide these deliberations. 

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RECOMMENDATION:

Federal agencies concerned with health care quality for people with disabilities—

including the Agency for Healthcare Research and Quality (AHRQ), the National 

Institute on Disability and Rehabilitation Research (NIDRR), and the Access 

Board—should develop a best practices guide to help providers (a) recognize that 

universal design goes beyond Americans with Disabilities Act (ADA) requirements 

and (b) understand methods of implementing and evaluating universal design 

principles in health care settings. This guide should also profile organizations that 

have implemented best practices, including their methods and outcomes. 

RECOMMENDATION:

The Registry of Interpreters for the Deaf should consider creating a specialist 

certification for medical and mental health interpreting. Such a certification should 

be developed in collaboration with the organizations that are currently providing 

medical training for interpreters, organizations of people who are deaf, and 

individuals who are deaf or hard of hearing. 

RECOMMENDATION:

Radiology technician training and certification programs should adopt key elements 

of the training program that the Breast Health Access for Women with Disabilities 

(BHAWD) has created and implemented for helping radiology technicians learn 

techniques for performing mammograms on women with diverse disabilities. All 

training programs should incorporate these key elements into training curriculums 

and licensing examinations. 

269 
270 
CHAPTER 8. Findings and Recommendations 

A. Findings Responding to the Research Questions 

1. What are the key Federal efforts that promote health care for Americans with 

disabilities, including wellness and prevention services? How effective are 

these efforts? 

The extensive network of Federal programs that provide health care and prevention 

services to people with disabilities—including Medicare, Medicaid, the State Children’s 

Health Insurance Program (SCHIP), and Title V of the Social Security Act—serve as a 

critically important safety net. Medicaid serves 8 million people with disabilities who lack 

any other source of care and 6 million low-income Medicare beneficiaries who are 

elderly and have disabilities. The program has become the “largest single source of 

health insurance and long-term care and the largest source of public financial support 

for people with disabilities.”525 SCHIP provides critical assistance to eligible families that 

include children with disabilities, yet it is difficult to say how many children with 

disabilities are covered under SCHIP because there is no requirement that state 

programs collect or maintain such information. Title V of the Social Security Act 

establishes federally funded public health programs intended to provide comprehensive 

services for mothers and children. Title V is the only Federal program that consistently 

provides all four possible levels of services: (1) direct health care; (2) enabling services 

such as transportation, translation, and health education; (3) preventive services such 

as newborn screening, immunization, and oral health; and (4) infrastructure-building 

services such as needs assessment, policy development, and information systems 

support.526 States must document how many children have special health needs in the 

state and how services will be received, along with infant mortality and child and 

maternal health statistics according to such categories as county, race, and ethnic 

group.527

The Developmental Disabilities Assistance and Bill of Rights Act528 (DD Act) established 

the University Centers for Excellence in Developmental Disabilities (UCEDDs). The 

UCEDDs have a broad research mandate to conduct basic or applied research, 

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evaluation, or public policy analyses in “areas that affect or could affect, either positively 

or negatively, individuals with developmental disabilities and their families.”529 The 

UCEDDs also provide coordinated and multidisciplinary direct health care. In 2006, 

more than 524,000 people in the community gained knowledge and skills related to the 

health care needs of individuals with disabilities, and more than 665,000 people with 

disabilities benefited from health-related activities supported by UCEDDs.530 

The UCEDDs serve as models because they have been consistently funded over a 

period of more than 4 decades and thoughtfully embedded within an entire network of 

grant programs. Accessible health care is recognized as one of the key elements 

through which people with developmental disabilities will achieve independence, 

inclusion, and community integration. 

Health care insurance availability, affordability, and coverage for important benefits—

including medications, long-term care, durable medical equipment, mental health, 

rehabilitative and specialty care, and care coordination—are key issues for people with 

disabilities. Access to appropriate, affordable care and required equipment, 

medications, and supports affects the health status of people with disabilities, as well as 

their participation in disease prevention and health promotion programs. Both Medicare 

and Medicaid beneficiaries have reported difficulties obtaining the care and services 

they require. With higher copayments, Medicare beneficiaries with disabilities report 

significant cost-related problems, including forgoing needed equipment, postponing 

care, and paying for long-term care. Further, Medicare imposes a 2-year waiting period 

for coverage for individuals who are under age 65 who become eligible for the program 

when they receive Social Security Disability Insurance (SSDI). While cost-sharing is 

lower under Medicaid, people with disabilities who are covered by the program report, 

among a number of problems, difficulties finding physicians who will accept Medicaid 

payments, and this compromise access to care for people who have low incomes. 

Seventy-eight percent of Medicaid beneficiaries with disabilities qualify for Medicaid 

because they meet the income and asset limitations required to be eligible for 

Supplemental Security Income (SSI).531 For many of these low-income beneficiaries, 

272 
however, essential health care services—including dental and vision care, medical 

supplies, and durable medical equipment—may be out of reach financially, even with 

low cost-sharing under Medicaid. 

2. Are accurate health data available concerning Americans with disabilities? 

Although no dataset currently meets all information needs, several surveys have either 

the current ability or the strong potential to provide many of the data necessary to 

assess health care utilization and the treatment experience. The sponsoring agencies 

have used the data for some evaluation of health care utilization by people with 

disabilities, but they have not produced analyses to the fullest extent possible. Some 

progress is apparent in the development and use of a consistent indicator of disability, 

and a number of recent reports on health include disability as a population variable. 

Public acknowledgement of, and attention to, the importance of collecting data about 

the health care experiences of people with disabilities is growing, and some promising 

research is under way to develop survey questions that will gather information not 

previously measured about these experiences. Moreover, some surveys are being 

developed that will collect data on people with disabilities, who were previously 

excluded. 

Important challenges remain, however, that currently limit the availability of accurate 

health data concerning Americans with disabilities. For example, questions about the 

health care delivery experience should be moved from the optional supplemental parts 

of surveys to the regularly asked core in order to ensure that this information is 

collected. The number of surveys that do not exclude people in group quarters or 

without telephones from samples should be expanded, and better survey indicators for 

people with cognitive, intellectual, and psychiatric disabilities should be developed. 

Methods should be designed to ensure that sponsoring agency reports include disability 

as a population variable in data analysis and the reporting of survey findings. Also, a 

means should be developed for collecting information about health care providers with 

respect to physical, programmatic, and communication access to health care, including 

information from the providers themselves. 

273 
3. What are the access barriers to health care for people with disabilities, 

including barriers to wellness and prevention services? 

Many people with disabilities have some type of health insurance, and publicly financed 

health insurance provides an important safety net. However, a significant number of 

individuals with chronic health conditions remain uninsured. Lack of health insurance 

coverage is one of the most critical barriers to health care for people with disabilities. 

During the period 2001–2005, about 19 percent of adults with a basic actions difficulty 

and 17 percent of those with a complex activity limitation reported being uninsured. 

Twenty-eight percent of people with emotional disabilities reported being uninsured, the 

highest rate among people with disabilities, followed by 20 percent of people who are 

blind or have vision impairments or who are deaf or hard of hearing.532 One notable 

administrative barrier to coverage is Medicare’s 2-year waiting period for coverage for 

individuals who are under age 65 and become eligible for the program when they 

receive SSDI. Nearly half of all uninsured nonelderly adults report having a chronic 

condition, and of these, almost half forgo medical care or prescription drugs because of 

the cost.533 

Among barriers that affect the quality of care that people with disabilities receive, lack of 

disability competency and awareness among health care providers ranks high among 

focus group participants and in other participatory research.534 Without appropriate 

training and awareness, health care providers hold incorrect assumptions and 

stereotypes about people with various disabilities, which can affect every aspect of care 

and result in inadequate and inappropriate care. Research has revealed, for example, 

that some providers incorrectly assume that people with disabilities do not have a good 

quality of life; that people with developmental disabilities do not feel pain and, therefore, 

do not require anesthesia; that people who are deaf have cognitive deficits because 

they may not be fluent in standard English; and that women with disabilities do not 

require reproductive counseling and care because they are not sexually active. Beyond 

undermining quality of care, such humiliating and frustrating encounters with health care 

providers can damage patient-provider trust and deter people with disabilities from 

seeking care. 

274 
People with disabilities also encounter structural barriers to health care, including 

inadequate transportation, lack of architectural accessibility in the facilities and offices of 

health care providers, and lack of accessible exam and diagnostic equipment. For many 

people with mobility disabilities, access to examination and diagnostic equipment such 

as mammogram machines can be difficult or impossible if the equipment is not heightadjustable. Medical office staff members often are not trained to provide lifting 

assistance and are unwilling to lift patients onto inaccessible examination tables. Some 

patients do not wish to be lifted, out of fear that they will be dropped or injured. 

Communication barriers, including a lack of sign language interpreters for people who 

are deaf or significantly hard of hearing are frequently cited as problems that prevent 

access to care or reduce the quality of care. People who are blind or have vision 

impairments report that medical providers sometimes do not speak to them directly and 

do not provide prescription information, return-appointment dates, or other health care 

instructions in formats that are accessible; nor do they offer to read the information. 

Diabetes care training can be difficult to obtain for people who are blind or have vision 

disabilities, because some diabetes care professionals are not aware of blood glucose 

testing and other equipment that provides an audio output of readings. People with 

developmental disabilities also report difficulty communicating with some health care 

providers: during standard office visits, too little time may be available for discussion of 

complex health issues or the appropriate presentation of information so that people with 

developmental disabilities can understand what is being said, participate in their health 

care decisions, and become informed about wellness and prevention. 

In general, research is limited that identifies barriers to participation in wellness and 

prevention services by people with disabilities. However, factors such as having both 

health insurance and a regular source of health care predicted whether or not women 

with disabilities received all types of clinical preventive services.535 Similarly, in a study 

comparing prevention procedure rates of Medicare beneficiaries with disabilities, level of 

disability played an important role: Women with the most significant disabilities reported 

fewer Pap tests and mammograms compared with those who did not have disabilities. 

275 
Research suggests that measurement of weight, electrocardiograms, and inquiries 

about smoking habits occurred less frequently for women with disabilities than for 

women of similar age without disabilities. Although it is not clear why someone with a 

more significant disability might participate less in wellness and prevention services and 

programs, factors such as inadequate transportation, inaccessible medical facilities and 

diagnostic equipment, inaccessible exercise equipment, and lack of disability cultural 

competency on the part of health care providers likely play a part. 

Studies suggest that people who are deaf or hard of hearing experience specific 

barriers to participating in prevention programs, may have limited access to appropriate 

and accessible information about health promotion activities, and may not understand 

why such programs and activities are important. In particular, adults who are deaf tend 

to have less health literacy compared with the hearing population. Focus group

research has shown that women who are deaf have unique linguistic and cultural issues 

that affect their health and their health care experiences. Participants were unaware of 

the need to assess health risks through prevention and diagnostic screening 

procedures, including those for cardiovascular disease. Some participants also lacked 

knowledge and information about screening and diagnostic procedures for breast and 

cervical cancer, as well as the purpose and importance of treatments such as 

surgery.536 However, when people who are deaf or hard of hearing have access to 

deaf-friendly medical organizations (i.e., organizations in which methods for effec

communication such as ASL interpreters and assistive listening devices are readily 

available and providers understand cultural aspects of deafness), screening rates for 

colorectal, cervical, and breast cancer were similar to rates for the general 

population.

tive 

537 

Although people who are blind or have vision impairments experience overweight and 

obesity at a higher rate than the general population, most health maintenance programs 

emphasizing weight management and fitness are not structured to accommodate them. 

Likewise, diabetes education and care management do not always reach people who 

have vision impairments and diabetes. People who have vision impairments are less 

276 
physically active and are generally in poorer physical condition than people who do not 

have vision impairments538 Various factors contribute to inactivity and overweight 

among people who have vision impairments, including difficulties obtaining and 

preparing fresh foods, lack of transportation, inaccessible exercise equipment, and the 

inaccessibility of the pedestrian environment.539 However, little effort has been made to 

promote health and weight management for people who are blind or have vision 

impairments. The lack of tailored programs and accessible exercise equipment prevents 

people who have vision impairments from participating in exercise programs that could 

lead to weight loss.540 People who are blind or have vision impairments encounter 

numerous problems using standard exercise equipment, including inaccessible display 

screens, tactile buttons, and control labels. Recreation facilities are also often 

inaccessible. 

Adults with intellectual and developmental disabilities are more likely to lead sedentary 

lives, and more often report being in fair or poor health than adults without 

disabilities.541 However, research is limited on issues related to health promotion fo

people with intellectual and developmental disabilities.

r 

 not 

 and 

542 In one national study, family 

practice and internal medicine physicians indicated that they conduct fewer health

promotion activities for patients with physical disabilities than for patients who do

have disabilities.543 It is therefore particularly difficult for people with intellectual

developmental disabilities who also have physical disabilities to gain access to health 

promotion services. 

4. What are the unique access barriers to health care for women with 

disabilities, people who are deaf or hard of hearing, people who are blind or 

have vision impairments, and people with intellectual and developmental 

disabilities? 

Women with disabilities report that financial concerns and inadequate health insurance 

are the primary reasons they cannot obtain needed services.544 Among women who do 

not have disabilities, slightly over 75 percent had private insurance, compared with 

almost 62 percent of women with basic actions difficulty and only about 49 percent of 

women with complex activity limitations.545 Depending on level of disability, between 15 

277 
and 18 percent of women with disabilities between the ages of 18 and 64 years have no 

health care coverage at all.546

Even when a woman with disabilities has health insurance, her plan may not adequately 

cover required prescriptions, physical or occupational therapy, durable and expendable 

medical equipment and supplies, assistive devices, or personal assistance services. 

Women with disabilities that included three or more functional limitations were more 

likely to report being unable to get general medical and dental care, prescriptions, or 

eyeglasses, regardless of age group, compared with women who do not have 

disabilities. Women with disabilities also report problems with access to prevention 

services.547

Social misperceptions and stereotypes about disability can make it difficult for women 

with disabilities to obtain information, medical care, and services to ensure that their 

reproductive needs are met. Structural barriers to receiving adequate and informed 

reproductive care include limited professional training and competency of primary care 

and reproductive care specialists; inadequate or no health insurance coverage for visits 

to specialists; poor physical access to usable and adapted or specialized examination 

and diagnostic equipment; and negative or discriminatory provider attitudes.548 

Communicating effectively in health care settings presents complex challenges for 

people who are deaf or hard of hearing. Research has revealed that deaf and hard-ofhearing patients identify similar problems related to communication that compromise 

health care, including “medication errors and misdiagnoses, problems during surgery 

and anesthesia, missed and delayed appointments, and less complete and accurate 

information than other patients receive.”549 Most health care practitioners have little 

understanding of how people with hearing loss communicate or how to communicate 

effectively with them. This lack of awareness directly affects the quality of health care 

these practitioners are able to provide. People who are deaf or hard of hearing 

frequently report that health care providers rarely use appropriate and effective methods 

of communication. Problems begin when an individual attempts to schedule an 

appointment with a health care provider and continue during office visits, diagnostic 

278 
procedures, emergency room visits, hospitalizations, and even in hospice care. Most 

health care practitioners are unaware that many people who are deaf or significantly 

hard of hearing communicate using technologies including text messaging, faxing, 

email, and TTY devices, and some practitioners are uncomfortable using these 

technologies to communicate with patients. Further, most practitioners have complex 

menu-driven voice message systems that make it difficult for relay operators to type the 

options to the caller before the connection times out.550 Thus, people who are deaf or 

hard of hearing are sometimes unable to make appointments with their health care 

providers or communicate directly with them. Deaf focus group participants indicated 

that communication is most effective when they have the opportunity to work with 

medically experienced, certified ASL interpreters. However, these interpreters are often 

not available.551

Participants in one focus group reported that health care providers and their staff did not 

know how to relate appropriately to people who are blind or have vision impairments. 

They indicated that some health care providers are uncomfortable communicating with 

such patients. For example, providers frequently speak to a companion who is sighted 

rather than speaking directly to the person who is seeking medical care. 

Other barriers to care include lack of public transportation in suburban and rural areas, 

difficulty scheduling rides, and difficulty relying on paratransit to get to appointments on 

time. Barriers in the facilities of health care providers include lack of appropriate, 

accessible signage using Braille and raised letters. Many people who are blind or have 

vision impairments and who also have diabetes report that diabetes care professionals 

are poorly equipped to serve them appropriately. Professionals rarely understand the 

need for information in an accessible format. Health care providers are generally 

unaware of speech-output devices that enable people who have vision impairments to 

measure their blood sugar and blood pressure and read prescription dose instructions 

independently. 

For people who are blind or have vision impairments, access to vision rehabilitation 

services is limited, in part because of eligibility definitions. Even people who are eligible 

279 
for services may not know that they are available or may find the cost of these services 

prohibitive. Further, too few vision care specialists, including ophthalmologists and 

optometrists, refer eligible people who have vision impairments to vision rehabilitation 

services. 

Studies have shown that people with intellectual and developmental disabilities—as well 

as the families, caregivers, and advocates who help them to get care—face 

extraordinary barriers to preserving health and getting health care when they need it. 

They feel excluded from public campaigns to promote wellness. They describe 

shortages of health care professionals who are willing to accept them as 

patients and who know how to meet their specialized needs. They struggle with 

unwieldy payment structures that were designed decades ago when people 

with [intellectual and developmental disabilities] often died in childhood or lived 

out their lives in residential institutions.552

About 70 percent of Medicare beneficiaries with intellectual and developmental 

disabilities are also enrolled in Medicaid.553 Because Medicaid includes both mandatory 

and optional services, certain critical services such as dental care and certain 

prescription drug coverage may not be available to people with intellectual and 

developmental disabilities.554 Medicaid managed care programs can be poorly 

equipped to meet the needs of people with disabilities, including people with intellec

and developmental disabilities.

tual 

are 555 Potential problem areas include inadequate c

coordination, limited access to specialists, limited consumer choice, and inadequate risk 

adjustment for capitation rates.556 Medical providers lack training and experience in 

treating individuals with intellectual and developmental disabilities. Some providers are 

uncomfortable providing care or are unwilling to serve patients with these disabilities. 

Patient education materials are often written in ways that people with intellectual 

disabilities cannot understand, making follow-through less likely. Incorrect assumptions 

and stereotypes about people with intellectual and developmental disabilities, coupled 

with limited scientific knowledge about appropriate standards of care, further contribute 

to ongoing health problems. Negative experiences with health care providers deter 

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people with intellectual and developmental disabilities, along with their families and 

caregivers, from seeking care. 

Many children with intellectual and developmental disabilities receive medical care 

managed through an interdependent and complicated system that may include the 

involvement of medical, educational, vocational, and social services. The transition from 

this multilayered system to adult health care is fraught with difficulties for many. At a 

minimum, people with intellectual and developmental disabilities require a primary care 

physician who can focus on providing adult care. Even at this stage, health systems 

may fail to support the transition process, and young adults and their families can find 

themselves without appropriate care. Problems include primary care physicians who are 

not trained to provide needed care and insurance schemes that do not adequately 

compensate health care providers for the time required to provide care and care 

coordination. Further, insurance plans can limit access to the few specialty providers 

who are familiar with the care needs of young adults with intellectual and developmental 

disabilities. Finally, environmental factors such as poverty, inadequate and inaccessible 

housing, unemployment, and poor transportation contribute to the poor health status of 

people with intellectual and developmental disabilities and limit access to necessary 

medical care and mental health services for them and their families.557 

5. What programs initiated by the public and private sectors have improved 

access to coverage and care for Americans with disabilities? 

The following are examples of such programs. 

a. AXIS Healthcare, Twin Cities area, Minnesota 

Contracted by a Minnesota Department of Human Services program called Minnesota 

Disability Health Options (MnDHO) in 2001, AXIS Healthcare founded UCare Complete 

for people with physical disabilities, ages 18 to 64, who reside in the Greater Twin Cities 

area. The program combines physician, hospital, home care, nursing home care, homeand community-based services, and other care into one coordinated care system that 

maximizes independence while providing person-centered and person-directed 

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services. The plan was designed because people with disabilities who participated in 

the Medicaid program in the target counties were experiencing poor access to health 

care services, were unable to obtain accommodations in health care settings, and found 

that few health care providers understood their particular needs. 

b. South Dakota Rosebud Developmental Clinic, Sioux Falls 

The South Dakota Rosebud Developmental Clinic operates in conjunction with the 

Sanford School of Medicine at the University of South Dakota in Sioux Falls, South 

Dakota. The program was organized 18 years ago to identify children from birth through 

5 years of age on the Rosebud Reservation who are at risk for developmental 

disabilities, provide immediate care through early intervention, and refer them to 

additional medical services provided by local agencies and facilities. 

Native Americans continue to experience significant health disparities compared with 

the general population.558 Before the clinic was established, children and parents on the 

Rosebud Reservation were without local specialists to diagnose and evaluate 

developmental disabilities. The clinic operates by sending local staff to the reservation 

to perform developmental screenings. High-risk children are referred to the clinic for 

further evaluation and treatment. Once a month, a team of professionals (psychologist, 

physical/occupational therapist, speech therapist) and two or three graduate students 

performs full evaluations for children who are referred to the clinic. Staff members use 

specific, standardized evaluation methods (e.g., testing motor skills, communication 

skills, and cognitive/adaptive skills) that allow for flexibility and familial involvement. The 

children can also see a nutritionist, a developmental physician/pediatrician, and a 

geneticist. After evaluation, an Individual Service Plan (ISP) is created, and services are 

scheduled for eligible children.559

c. Premier HealthCare—YAI/National Institute for People with Disabilities Network, 

New York 

Premier HealthCare, an agency in the YAI/National Institute for People with Disabilities 

(NIPD) network,560 provides specialty health care for individuals with developmental, 

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physical, and learning disabilities in New York City. The medical facility provides an 

integrated medical home for its patients. Premier offers the advantages of both a small 

group practice and a large academic medical center.561 

d. Center for Development and Disability—University of New Mexico, 

Albuquerque 

A University Center for Excellence in Developmental Disabilities, the Center for 

Development and Disability (CDD) at the University of New Mexico in Albuquerque is a 

statewide organization established in 1990 that provides a variety of person- and familycentered health care services for individuals with disabilities, especially developmental 

disabilities. CDD works for the full community inclusion of people with disabilities and 

their families by engaging individuals in making life choices, partnering with 

communities to build resources, and improving systems of care. 

e. Westchester Institute for Human Development, Valhalla, New York 

A University Center for Excellence in Developmental Disabilities Education, Research 

and Services (UCEDD), the Westchester Institute for Human Development (WIHD) is 

located in Valhalla, New York. A former affiliate of the Westchester Medical Center, 

WIHD became an independent nonprofit organization in 2005. Today, the institute 

provides coordinated health care to people with disabilities; provides training and 

technical assistance for people with disabilities, caregivers, family members, and health 

care professionals; and undertakes research. Operational values include selfdetermination, family- and consumer-directed supports, community inclusion, and 

cultural competence.562 WIHD works to address the longstanding health care disparities 

faced by people with disabilities. 

f. Disabled Women’s Health Center, University of Alabama, Spain 

Rehabilitation Center, Birmingham, Alabama 

The country’s first gynecological clinic for women with disabilities, the Disabled 

Women’s Health Center at the University of Alabama, Spain Rehabilitation Center, in 

Birmingham, Alabama, was founded by Dr. Aimee Jackson in 1989, after several 

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women with disabilities who were patients at the Spain Rehabilitation Center noted the 

lack of high-quality, accessible health care. The clinic has provided services to 

approximately 500 patients who range in age from 17 to 87 years and reside in 

Alabama, Mississippi, Tennessee, and Florida. About 35 to 40 percent of the clinic’s 

patients are women with spinal cord injuries, and about 20 percent have spina bifida. 

Women who are served also have other disabilities, including stroke, multiple sclerosis, 

rheumatism, dwarfism, and scoliosis. The clinic also serves patients who are deaf. 

g. Breast Health Access for Women with Disabilities, Alta Bates Summit 

Medical Center, Berkeley, California 

A program of rehabilitation services of the Alta Bates Summit Medical Center in 

Berkeley, California, Breast Health Access for Women with Disabilities (BHAWD) offers 

an accessible clinic for free breast exams, breast self-examination training, general 

breast health management education, and mammogram referrals. The program was 

initiated in 1995, and clinical services began in 1997. Alta Bates staff, women with 

disabilities, and breast cancer survivors spearheaded BHAWD because they recognized 

the gap in women’s health services, including breast health. At the time, women with 

disabilities were ignored in cancer publications, breast health programs, and most public 

health research. 

Drawing on its clinical experience, BHAWD developed the country’s first protocols for 

adapted breast screening services and created trainings for physicians and other care 

providers, such as a Women Be Healthy program for women with cognitive disabilities. 

In addition, the group has produced several publications and a nationally distributed 

DVD on mammography training. 

h. Women with Disabilities Center, Rehabilitation Institute of Chicago 

Founded in 1991, the Women with Disabilities Center (WWDC) of the Rehabilitation 

Institute of Chicago (RIC) was the country’s first community-based health resource 

center for women with disabilities. WWDC shares staff and space with RIC, which is 

known nationally for its expertise in physical medicine. The center provides a variety of 

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direct services to women with disabilities and also educates the medical community 

about the needs of this population. WWDC promotes the safety and dignity of women 

and girls with disabilities, with the aim of helping them practice self-determination in 

achieving lifelong physical and emotional wellness.563 

Partnering with Northwestern University’s Prentice Hospital, WWDC refers women with 

disabilities to a team of physicians, nurses, and occupational therapists who are familiar 

with disabilities and can provide specialized care. The team provides basic reproductive 

services—including pelvic exams, mammograms, and family planning—which are 

traditionally unavailable for women with disabilities. WWDC also offers free, confidential 

domestic violence support and information through RIC’s Domestic Violence Services 

Program. 

i. Center for Women with Disabilities, Magee-Women’s Hospital, University of 

Pittsburgh Medical Center 

Founded in December 2001, the Center for Women with Disabilities, Magee-Women’s 

Hospital, University of Pittsburgh Medical Center (UPMC) offers comprehensive, 

patient-centered care that integrates accessibility and accommodation for women with 

physical disabilities. The center provides preventive medical services for women with 

disabilities and also refers patients to other culturally competent physicians who operate 

in accessible facilities and can provide appropriate accommodations. The center also 

offers educational programs for youth and their parents and caretakers, and works with 

UPMC’s other centers to develop and improve system-wide accessibility and services. 

j. Health Promotion Campaign for Women with Physical Limitations, Center 

for Research on Women with Disabilities, Baylor College of Medicine, Houston, 

Texas 

Between 2005 and 2007, members of the Center for Research on Women with 

Disabilities (CROWD) at Baylor College of Medicine in Houston, Texas, initiated the 

Health Promotion Campaign for Women with Physical Limitations. Funded by a grant 

from the Houston Endowment, this program was an outreach effort directed at women 

with physical disabilities, care providers, and friends and family members. In an effort to 

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inform and “empower women with physical disabilities to improve their health and 

wellness,” CROWD staff and faculty developed educational materials and a website, 

and attended health fairs in the Houston region.564 CROWD’s efforts in the area of 

health promotion grew out of the recognition that disability adds a new dimension to the 

problem of health disparities. People with disabilities face a number of disparities 

relative to the general population, including overall poor quality care, poor general 

health information, and low rates of health insurance.565 CROWD saw that such 

challenges are further compounded for women with disabilities because their general 

reproductive health needs are often ignored by health care providers. 

k. Blindness Support Services, Inc., Riverside, California 

Blindness Support Services (BSS), in Riverside, California, was established in 1992 to 

provide innovative approaches to assist people who are blind or have vision 

impairments and who are residents of Riverside, San Bernardino, Orange, San Diego, 

and Los Angeles counties in southern California to achieve independence and selfreliance.566 In addition to vision rehabilitation, BSS provides various health care 

services. The Health and Wellness Plan was designed to address the problems that 

arise from the lack of healthy eating habits among individuals with blindness and vision 

impairments. BSS offers exercise plans tailored to the needs of the community and 

presents lectures on healthy eating. BSS’s partnership with Riverside County Regional 

Medical Center provides a family practices resident the opportunity to work with BSS to 

learn how to address the various needs of patients with vision impairments. 

l. LightHouse for the Blind and Visually Impaired, San Francisco 

The LightHouse for the Blind and Visually Impaired, in San Francisco, is the largest 

agency providing direct services, advocacy, and information to the blind and visually 

impaired community of northern California.567 The Vision Loss Resource Center (VLRC) 

of the LightHouse offers an adaptive technology and health seminar that provides an 

audio transcript and information handouts of presentations on adaptive equipment, 

including accessible tools for glucose monitoring, weight management, healthy food 

preparation, and exercise equipment that aids in maintaining health. 

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The LightHouse’s Low Vision Clinic operates in collaboration with the University of 

California, Berkeley, School of Optometry, which offers low vision evaluations. The clinic 

assists clients by recommending various strategies and techniques for maximizing 

residual functional vision and by prescribing appropriate adaptive devices that will assist 

them to regain functional independent living skills.568 

m. Deaf Access Program, Mt. Sinai Hospital, Sinai Health Systems, Chicago 

The Deaf Access Program (DAP) of Mt. Sinai Hospital, in Chicago, offers a 

comprehensive program that provides medical and mental health services for children 

and adults who are deaf. DAP is sensitive to the language and culture of the Deaf 

community and is strengthened by having a program manager who is deaf, in addition 

to three physicians who are fluent in ASL, three ASL interpreters on staff, and three 

mental health therapists who are also fluent in ASL. This program meets a specific and 

critical need within the Chicago Deaf community, where historically, people who are 

deaf have found it difficult to obtain appropriate health and mental health care because 

of substantial communication barriers.569

With an estimated 50,000 people who are deaf or hard of hearing living in the 

metropolitan Chicago area, the DAP serves approximately 1,300 patients and provides 

full communication access to medical, mental health, and support services. In addition 

to interpreting for patients in clinical settings, ASL interpreters travel to affiliated clinics 

in the Chicago area and provide interpreter services. DAP also coordinates the 

deployment of outside interpreters, as needed, to ensure that deaf patients have access 

to effective and appropriate communication during health care visits. 

n. Deaf and Hard-of-Hearing Program, Advocate Illinois Masonic Medical 

Center, Chicago 

The Deaf and Hard-of-Hearing Program at Advocate Illinois Masonic Medical Center, in 

Chicago, was established more than 25 years ago. The program provides mental health 

services and prevention education, and reaches more than 500 people who are deaf in 

Chicago’s six-county region and beyond. During 2007, approximately 100 patients 

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received mental health services each month, with a total of 3,400 contacts for the year. 

In addition to mental health services, the program engages in prevention education that 

is understandable and usable by people who are deaf. The program features health 

education pamphlets presented in streaming video on a variety of topics, including 

HIV/AIDS, sexually transmitted diseases, breast health, and diabetes. Also available are 

interactive screenings for depression, anxiety, and risk of heart attack, as well as 

programs for smoking cessation and depression management. 

o. Metropolitan Hospital Consortium, Communication Services for the Deaf of 

Minnesota, Minneapolis 

The Metropolitan Hospital Consortium, one of the Communication Services for the Deaf 

of Minnesota, in Minneapolis, was established in November 2005 to provide the 26 

member health facilities in the greater Twin Cities area with ASL interpreter services in 

emergency situations. Under the consortium’s operational contract, ASL interpreters are 

paid to be listed on a reserved 24/7 on-call schedule, allowing them to respond 

immediately when a need arises at a member facility. The consortium operates three 

shifts per day, with three interpreters on call for each shift. The consortium guarantees 

that an interpreter will arrive at a facility within 2 hours; 95 percent of the time, the 

consortium is able to send an interpreter arrives within 1 hour. 

p. CATIE Center, the College of St. Catherine Interpreter Education Program, 

St. Paul/Minneapolis 

The Collaboration for the Advancement of Teaching Interpreter Excellence, known as 

the CATIE Center, is one of six centers working in partnership as the National 

Consortium of Interpreter Education Centers (NCIEC).570 Created in 2005, the CATIE 

Center serves a 10-state region and has a primary focus of identifying effective 

practices in interpreting in the health care field.571 The center’s goal is to significantly 

increase the number of qualified interpreters in the field, while providing resources and 

opportunities that are accessible to interpreters of all backgrounds and experiences. 

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q. Deaf Wellness Center, University of Rochester Medical Center, Rochester, 

New York 

The Deaf Wellness Center (DWC) is a program of the Department of Psychiatry at the 

University of Rochester Medical Center, University of Rochester, Rochester, New York. 

DWC physicians perform individual and group psychiatric assessments. The center 

conducts 2,000 to 3,000 units of service annually, and approximately 100 patients are 

actively participating in care at a given time. DWC provides evaluation and 

psychotherapy services to individuals of any age, couples, and families. DWC has five 

full-time staff members who are fluent in ASL and a number of trainees who engage in 

clinical services, teaching, and research activities that pertain to mental health, health 

care, sign language interpreting, and other topics that affect the lives of people who are 

deaf or hard of hearing.572 

r. State Buy-In: The Family Opportunity Act 

The Family Opportunity Act (FOA) allows families with a child who meets the 

Supplemental Security Income (SSI) disability criteria and that have an income under 

300 percent of the Federal poverty level (FPL) to buy in to Medicaid for that child. Since 

the enactment of FOA in 2006, Illinois, Iowa, Louisiana, North Dakota, Ohio, 

Pennsylvania, and Vermont have established buy-in programs. These programs serve 

as a national model for innovative policies that can contribute to reducing the number of 

children with disabilities who still receive inadequate health care. 

s. Disability Standardized Patient Exercise for Medical Students, Tufts 

University Medical School, Medford, Massachusetts 

The Disability Standardized Patient Exercise for Medical Students, at Tufts University 

Medical School, in Meford, Massachusetts, targets third- and fourth-year medical 

students. The program is now required, and about 170 students participate. The goal of 

the program is to introduce an individual with a mobility disability who is seeking care for 

a health problem that is not disability-related. For example, a paid patient-educator who 

is a wheelchair user discusses her health concern, shoulder pain. She reports living an 

active life with family and friends. The goals of the exercise are to help students develop 

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a comfort level working with a patient with a disability, dispel stereotypes about 

disability, and encourage students to learn how to differentiate between disabilityrelated and other medical problems. The program is fully embedded in the medical 

school. 

6. What are key disparities and gaps in third-party coverage of the types of 

programs and services most needed by Americans with disabilities, 

particularly women with disabilities, people who are deaf or hard of hearing, 

people who are blind or have vision impairments, and people with intellectual 

and developmental disabilities? 

Lack of comprehensive insurance coverage and excessive out-of-pocket costs rank 

high among disparities and gaps in third-party coverage for the types of services and 

programs most needed by Americans with disabilities. For example, Medicare contains 

significant gaps in coverage benefits for items or services that can be both expensive 

and particularly important for maintaining function and independence. Medicare does 

not pay for long-term care services at home or in an institution, routine dental care and 

dentures, routine vision care or eyeglasses, and hearing exams and hearing aids. 

These notable gaps in coverage may result in significant out-of-pocket expenses to 

meet medical, equipment, and long-term care needs for some people with 

disabilities.573 Both Medicare and Medicaid beneficiaries have reported difficulties 

obtaining the care and services they require. With higher copayments, Medicare 

beneficiaries with disabilities report significant cost-related problems, including

needed equipment, postponing care, and paying for long-term care. While cost-sharing 

is lower under Medicaid, people with disabilities covered by the program report, among 

various problems, difficulties finding physicians who will accept Medicaid payments,

which compromise access to care for people who have low incomes. One national 

survey found that health insurance is inadequate for more than one in three peopl

disabilities; these individuals reported delaying care, skipping medication, or going 

without needed equipment because of cost.

 forgoing 

e with 

574 Further, neither private nor public 

insurance plans reimburse health care providers for ASL interpreters or cover the cost 

of vision rehabilitation for people who are blind or who have vision impairments. 

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For those who have employer-sponsored group health insurance, plans often do not 

provide adequate benefits for people with disabilities.575 For example, private insurance 

plans increasingly limit annual payments for durable medical equipment such as 

wheelchairs, crutches, braces, and ventilators, regardless of medical necessity, and at a 

level that makes the individual’s out-of-pocket costs for higher priced items such as 

motorized wheelchairs prohibitively expensive.576 Many private insurance plans limit 

mental health services and prescription drugs, which are generally restricted to 

medications on approved lists, or formularies.577 For families who have a child with 

intellectual and developmental disabilities and complex medical problems, private 

insurance does not provide for adequate reimbursement to health care providers for key 

services such as specialty care and care coordination.578 

Purchasing individual private insurance is rarely an option for people with disabilities 

because it is unaffordable or because they are denied coverage outright on the basis of 

disability. While group plans may not exclude an individual with a disability from 

coverage, no such prohibition exists for individual private insurance.579 In addition to 

paying more for an individual plan than they would for a group plan, purchasers are 

often charged premiums that are higher than those charged to individuals without 

disabilities.580 One study examined the availability of individual health insurance 

coverage for hypothetical individuals with minor and major health problems. The study 

found that these hypothetical individuals were unable to obtain coverage at the standard 

rate 90 percent of the time, and benefit restrictions and premium surcharges were 

imposed on the applications that were accepted.581 

7. How can the extensive recommendations identified in studies conducted by 

the Institute of Medicine and others be advanced? 

Participants in NCD’s Health Care Summit for People with Disabilities considered a 

series of recommendations for reform derived from seminal reports issued by the 

Institute of Medicine (IOM), the Surgeon General of the United States, and leading 

health policy researchers. The summit participants undertook a failure analysis 

exercise, identified strategic actions that should be taken, and ranked the 

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recommendations according to the extent to which some goals are achievable in the 

near term. 

Participants identified the following factors that interrelate and contribute to the failure of 

health care institutions. 

● Core attitudes—misconceptions that impede access by people with disabilities 

to health care services

● System failure—despite some progress, tremendous gaps in the adoption of 

patient-centered practices

● System complexity—a health care system that is overly complex, fragmented, 

entrenched, and deeply layered, requiring any form of transformation to cut 

across multiple diverse elements

● Data challenges—a monitoring system that is insufficient to provide the basic 

data needed to measure and monitor disability

● Strategy limitations—lack of systemic impact of efforts, such as litigation, to 

bring about needed change; limited attempts to use standards setting and 

monitoring by private accreditation entities; and inadequate training of health 

care professionals 

● Attention overload—an environment saturated with complexity, chaos, and time 

demands, forcing issues to vie for their share of attention 

● Culture and curriculums—lack of health care providers’ awareness of the 

challenges involved in living with a disability or knowledge about how to provide 

culturally appropriate care and accommodations

● Untapped possibilities—lack of partnering with other groups that share a mutual 

interest in expanding health care access to underserved populations

Summit participants identified the following strategic actions that hold significant 

potential to achieve meaningful results in the near future. 

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● Securing Federal agency or congressional support to establish a Technical 

Assistance Center for Health Care Improvement for People with Disabilities 

● Gaining active support from the Joint Commission to bring accessibility and 

universal design principles into the medical facility survey accreditation process 

● Gaining commitment and active engagement from a core of committed 

individuals who will advocate for accreditation standards that require disability 

awareness and competence in the medical school curriculum 

8. Are accurate health data available concerning access to wellness and 

prevention services and their relative long-term costs and benefits for 

Americans with disabilities? 

The wellness and prevention services tracked by the Federal Government as 

benchmarks for the general U.S. population include screening for conditions and 

behaviors that place people at risk for serious health problems and measures of the 

delivery of preventive medical services, screenings, and examinations. The indicators 

tracked for “Healthy People 2010,” along with several additional indicators collected 

regularly in the major health surveys, include the following: 

● Health risk behaviors/indicators: smoking, obesity, excessive alcohol use, high 

cholesterol, hypertension, and lack of exercise 

● Preventive medical exams, screenings, and services: general physical exam, 

Pap test, mammogram, PSA test, flu shot, colonoscopy, cholesterol test, and 

doctor discussion and referral for services for smoking cessation, weight loss, 

exercise, alcohol treatment, and dietary and drug treatment for cholesterol 

“Healthy People 2010” includes objectives for people with disabilities for the top 10 

health indicators. The top 10 list is health care access, immunization, overweight and 

obesity, physical activity, tobacco use, mental health, substance use, sexual behavior, 

injury, and environmental quality. Data are not regularly collected on sexual behavior, 

injury, or environmental quality for people with disabilities. However, health care access, 

immunization, physical activity, obesity, substance use, and tobacco use can be tracked 

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using the National Health Interview Survey (NHIS), Medical Expenditure Panel Survey 

(MEPS), and Behavioral Risk Factor Surveillance System (BRFSS) datasets, all of 

which have disability questions in their cores. While the data collected using these three 

surveys can identify people with disabilities (the exact wording of the disability questions 

varies), the regular reporting of health and wellness benchmarks by the sponsoring 

agency does not present the status of people with disabilities on these indicators. Thus, 

health and wellness can be tracked using some of the same indicators that are used for 

people without disabilities, but since this information is not regularly included in the 

agency reports, it is not easily available in public documents. 

Beyond the examination of whether the standard health and wellness indicators are 

collected (for people with and without disabilities) is the issue of whether the indicators 

applicable to the general population are sufficient to track wellness and prevention for 

people with disabilities. Chapter 6 of “Healthy People 2010,” entitled “Disability and 

Secondary Conditions,” lists additional objectives, among them the following three: 

● Objective 6-10: Increase the proportion of health and wellness and treatment 

programs and facilities that provide full access for people with disabilities. 

● Objective 6-11: Reduce the proportion of people with disabilities who report not 

having the assistive devices and technology needed. 

● Objective 6-12: Reduce the proportion of people with disabilities reporting 

environmental barriers to participation in home, school, work, or community 

activities. 

The Consumer Assessment of Health Providers and Systems (CAHPS) survey has the 

potential to address Objective 6-11 through its supplemental questions. The other two 

objectives, 6-10 and 6-12, cannot currently be tracked via the major datasets. 

There is no regular measurement of facility characteristics associated with access; 

neither are there regular sources of data to measure participation in wellness programs 

such as exercise classes, smoking cessation programs, or self-help or AA-type groups 

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for substance abuse. Surveys do not ask people with disabilities about their experiences 

with access or environmental barriers that may affect participation in wellness programs 

or activities at home, in school, or in the community. 

Assessing long-term costs and benefits of access to wellness and prevention programs 

requires (1) consistent appropriate measures over time and (2) research that 

documents costs and the link between wellness or prevention programs and health 

benefits for people with disabilities. Agreement on an indicator of disability and use of 

that indicator in every major health survey will produce over time the ability to track for 

people with disabilities the prevalence of the wellness and prevention benchmarks used 

nationally for the noninstitutionalized population. Currently, no single indicator of 

disability is used in all surveys, but ongoing activities suggest progress toward this goal. 

Once a consistent definition is in place, data will have to be collected for a number of 

years before it will be possible to assess long-term prevalence rates for wellness and 

prevention measures. 

Intervention costs are commonly incurred at the beginning of an intervention, with the 

benefits spread out into the future.582 The financial costs of implementing a program are 

not difficult to identify; the economic costs (e.g., opportunity costs) are somewhat more 

difficult to calculate. The calculation of long-term benefits for people with disabilities 

from participation in wellness and prevention programs depends on the existence of 

studies that have measured outcomes. Currently, few studies measure the outcomes of 

interventions for smoking cessation, increased mammography screening, exercise, or 

other programs for people with disabilities. Nor do studies show whether the 

participation of people with disabilities in programs for broader populations were 

affected by access issues. If the outcomes of, for example, increasing exercise or 

reducing tobacco use are the same for people with disabilities as for people without 

disabilities, we can use the same estimates about increased longevity or fewer days of 

restricted activity that are used to estimate long-term benefits for the general population. 

However, if interactions with disabilities cause different outcome rates on these 

indicators, separate long-term benefits should be calculated. A clear understanding of 

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impact will require further research on the outcomes of health and wellness programs 

that include people with disabilities. 

9. How effective are Federal efforts at health promotion and disease prevention 

(public health) as they affect Americans with disabilities, particularly women 

with disabilities, and people who are blind or have vision impairments, people 

who are deaf or hard of hearing, and people with intellectual and 

developmental disabilities? 

Although it is difficult to determine with any certainty the effectiveness of Federal efforts 

at disease prevention and health promotion for people with disabilities, particularly in 

terms of reduced health disparities or improved health status, the midcourse review for 

“Healthy People 2010” reported some related progress. At that time, new data had 

become available on several key indicators since “Healthy People 2010” was launched 

in 2000. People with disabilities are currently represented in 207 of the 467 objectives 

that span 21 of 28 “Healthy People 2010” focus areas. However, when “Healthy People 

2010” was implemented, data on people with disabilities were available for only 88 of 

those 207 objectives. “Healthy People 2010” undertook a midcourse review that 

revealed some preliminary information on the extent to which objectives are being met. 

For example, in Focus Area 6, “Promote the health of people with disabilities, prevent 

secondary conditions, and eliminate disparities between people with and without 

disabilities in the US population,” the midcourse review provides new data comparing 

populations within the disability community that address both quality of life and health 

disparities. Disparities are documented between people who have disabilities and those 

who do not, as well as among subgroups based on education, income, gender, and 

ethnicity. Improvements are shown in several areas, including an increase in inclusion 

of people with disabilities in national and state surveillance, a reduction of the number of 

adults with disabilities living in congregate care facilities, and an increase in the number 

of children with disabilities included in regular education programs. However, according 

to the midcourse review, the explanation for this improvement cannot be attributed to 

any particular programmatic intervention. The review suggests that implementation and 

enforcement of Federal disability rights laws, improved public awareness of disability, 

and increased accessibility, including public transportation, may be contributing factors. 

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At the same time, some relatively recent Federal efforts at health promotion and 

disease prevention for people with disabilities may produce results that can be 

measured in the future. For example, the Agency for Healthcare Research and Quality 

(AHRQ), the Centers for Disease Control and Prevention (CDC), the National Cancer 

Institute (NCI), and the National Institute of Mental Health (NIMH) have undertaken or 

supported research related to health promotion and disease prevention as they apply to 

women with disabilities. CDC has undertaken a qualitative study to explore the barriers 

to breast cancer screening for women with disabilities, and has developed and is testing 

the Right to Know campaign. NCI supported research for a pilot study to develop and 

test methods of identifying women of screening age with physical and sensory 

disabilities, as well as a questionnaire to identify barriers in screening mammography for 

these women. NCI also funded a study on the effects of disability on the diagnosis of 

breast cancer. NIMH has funded HIV/AIDS prevention curriculums for women with 

intellectual disabilities. 

AHRQ has supported research on methods to improve the health care experiences of 

people who are blind or have vision impairments and efforts to create an evidence base 

for vision rehabilitation. The National Eye Institute (NEI) supported a randomized clinical 

trial on the effectiveness of low vision rehabilitation services for adults who have vision 

impairments. One goal of the project was to provide information that could assist the 

Centers for Medicare & Medicaid Services (CMS) in formulating policy on coverage of 

these services, which help people with vision loss to follow disease prevention and 

health promotion regimens. 

AHRQ, NCI, and CDC have supported research projects related to people who are deaf 

or hard of hearing. AHRQ has supported research on translating and adapting the 

Consumer Assessment of Healthcare Providers and Systems (CAHPS) ambulatory care 

survey to collect information in ASL about health care experiences from people who are 

deaf. NCI has funded a program to expand the number of cancer education training 

videos available to the Deaf community in San Diego, California, and an immersion 

project to train 10 medical students from the University of California, San Diego, in basic 

297 
ASL, Deaf culture awareness, and medical terminology in ASL, with a focus on cancerrelated issues. CDC has provided funding for the Rochester Prevention Research 

Center (RPRC) at the University of Rochester, which is developing a national center of 

excellence for health promotion and disease prevention research in persons who are 

deaf or hard of hearing. 

In addition to programs of the Administration for Children and Families (ACF) and the 

Health Resources and Services Administration (HRSA) (e.g., UCEDDs and LENDs), the 

following Federal initiatives also promote health for people with intellectual and 

developmental disabilities. The National Institute of Dental and Craniofacial Research 

(NIDCR) has identified people with disabilities as a disparities population, has 

developed and published a series of important booklets on providing oral disease 

prevention and routine dental care for people with developmental disabilities, and has 

funded an oral health disparities research project at the University of California, San 

Francisco. The National Institute of Diabetes and Digestive and Kidney Diseases 

(NIDDKD) has funded projects to test the reliability and validity of various methods to 

assess the dietary intake of adults with significant cognitive impairments living in the 

community. The National Institute of Child Health and Human Development (NICHHD) 

has supported Oregon Health and Science University to test the efficacy of a health 

promotion intervention for people with intellectual disabilities. 

10. What are the long-term costs and benefits of third-party coverage of 

programs and services most needed by Americans with disabilities? 

The payment structure for health care services in the United States is based on thirdparty payers, either through private insurance or through public programs, including 

Medicare, Medicaid, SCHIP, and Title V of the Social Security Act. Health care services 

are so costly that it is not feasible to assume that those without a third-party payer can 

afford to pay out of pocket. For the 45.7 million Americans without health insurance, this 

means mostly going without care until health problems are urgent.583 In these 

circumstances, providers may never be adequately compensated for the care provided, 

and individuals may find themselves struggling with large health care-related debt.584

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For people with disabilities, as for most Americans, assessments about the impact of 

the third-party payment structure on long-term costs and benefits are wrapped up with 

the larger national policy debate about how best to finance health care so that it meets 

the two objectives of enabling everyone to access appropriate quality care and 

controlling the rapid rise of health care expenditures. 

People with disabilities rely heavily on health insurance. However, data from the 2001–

2005 NHIS indicate that about 19 percent of adults with a basic actions difficulties and 

17 percent of those with a complex activity limitations reported being uninsured. 

Twenty-eight percent of people with emotional disabilities reported being uninsured, the 

highest rate among people with disabilities, followed by 20 percent of people who are 

blind or have vision impairments or who are deaf or hard of hearing.585 Those who are 

without insurance or who are inadequately insured often delay care or go without care. 

Both circumstances can raise costs in the long run, both to the health care system and 

to individual patients. While not intrinsic to the concept of third-party payment, the 

current structure permits the denial of coverage on the basis of health status or prior 

health events. This structure also has developed a reimbursement system geared to the 

expenses of acute medical care, which leaves people with chronic conditions and the 

costs of chronic care less well covered. The costs of durable medical equipment and 

other assistive devices—which often are not considered “medical”—sometimes fall 

outside the insurance coverage umbrella. 

For people with disabilities to realize health insurance benefits that are similar to those 

for people without disabilities, third-party coverage will have to include some specific 

services and supports, such as care coordination, access to specialty providers, 

rehabilitative services, prescription drugs, durable medical equipment, and assistive 

technologies. Third-party reimbursement also should be able to accommodate the need 

for longer appointments, assistance with communication (e.g., sign language 

interpreters), and other modifications to ensure equitable quality in health care for 

people with disabilities. 

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Currently, no body of research demonstrates with any certainty the long-term costs and 

benefits of third-party health care coverage that incorporates the services most needed 

by people with disabilities. The best that can be offered is a hypothesis for future 

research: Better third-party coverage of people with disabilities and the services they 

need will result in longer, healthier lives; improved overall health status; greater 

productivity and community participation; and decreased utilization of high-cost care for 

conditions that benefit from earlier intervention. 

B. Required Elements for Access to Health Care for People with 

Disabilities 

The extensive network of Federal programs that provide health care and prevention 

services to people with disabilities (e.g., Medicare, Medicaid, SCHIP, and Title V) 

serves as a critically important safety net, but many people with disabilities still do not 

have health insurance, and for many who do, coverage, services, and benefits are often 

inadequate. These problems have been extensively documented, discussed, and 

debated among health policy research institutions, in the disability community, and 

among policymakers. Many of the structural problems are an artifact of the historical 

and political evolution of health care policy in the United States and lie at the heart of 

the ongoing national debate about health care reform. However, little attention has been 

paid to the role these agencies should play to ensure that the Federally supported 

health care for people with disabilities is provided in a culturally competent manner, in 

accessible facilities, and with appropriate accommodations. 

For people with disabilities, access to health care includes critical dimensions in addition 

to health care insurance and payment for services. While coverage is one fundamental 

component of access, another dimension has to do with barriers people with disabilities 

encounter when they seek health care services and with the capacity of health care 

systems to ensure accessibility and provide accommodations. 

While little research documents the barriers that people with disabilities encounter when 

they seek care, sufficient evidence has been collected through focus groups and other 

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forms of participatory research to conclude that problems such as poor architectural 

accessibility, lack of accessible examination equipment, and limited accommodations in 

health care settings deter some people from seeking care and can result in inadequate 

and ineffective care. 

Section 504 of the 1973 Rehabilitation Act prohibits discrimination on the basis of 

disability by recipients of Federal financial assistance. The law requires recipients to 

evaluate their programs and services to ensure that people with disabilities have 

adequate access and receive appropriate accommodations so they can participate in and 

benefit from the program or service. Yet the largest Federal programs that provide health 

insurance or pay for health care services for people with disabilities through transfer of 

Federal funds to the states have done little to ensure that states take steps to protect the 

rights of people with disabilities who receive such federally funded health care. Although 

Federal agencies may require written assurances that states do not enter into contracts 

with entities that violate disability rights laws, the agencies do not require that procedures 

be established for collecting information on the extent of compliance in the systems that 

provide care. In the absence of such Federal requirements as a condition of receiving 

funds, states simply pass on their nondiscrimination obligations in contracts with health 

care organizations, which, in turn, pass the obligations on to the health care providers 

with whom they contract for services. 

Nowhere along the way is a recipient of Federal funds required to report to the entity 

that provides funding the extent of accessibility of health provider facilities or institutional 

capacity to accommodate patients with disabilities. Without such a monitoring 

mechanism, recipients of Federal funds along the health care delivery chain may be 

unaware of what is required or may have little motivation to remove barriers and provide 

accommodations. In the absence of a requirement to show their level of accessibility 

and capacity to accommodate patients with disabilities, it is unlikely that health care 

providers will seek out or receive information about tax credits available for purchasing 

accessible equipment or removing architectural barriers.586

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HHS has provided guidance to states on implementation and enforcement of the ADA and 

Section 504 but has not established any mechanisms for monitoring states’ actions. 

Funding is not tied to any requirement that states report on progress to ensure compliance 

by health care providers.587 This weakness in Federal health care oversight for people with 

disabilities has received little public attention and does not appear to be a priority of any 

Federal agency that has a substantial role in researching, assessing, or directly providing 

health care for people with disabilities.588 For some people with disabilities, the twin 

dimensions of health care access—adequate insurance coverage and benefits, and health 

care facility and programmatic accessibility—are inextricably entwined. Yet Federal 

agencies involved with health care for people with disabilities have not acted affirmatively to 

elevate attention to, and spur action on, the architectural and programmatic elements. 

C. Health and Health Disparities Research 

Like Federal health care policy, the health research landscape reflects the legacy of 

historical priorities and perceptions of disability. Dissonance is evident in the research 

goals and objectives of key agencies of HHS and NIH, between the longstanding public 

health goal of eliminating disability and disease and the emerging view fostered by the 

Surgeon General’s report “Call to Action” and Focus Area 6 in “Healthy People 2010.” 

The emerging view, for the first time in public health parlance, defines disability as a 

demographic characteristic. Much of the Federal effort remains focused on disability 

and disease prevention rather than on improving access to and quality of health care for 

people with disabilities, reducing their incidence of secondary health problems, and 

promoting healthy living. Further, it is very difficult to accurately determine the extent of 

the overall Federal research effort aimed at addressing health disparities and promoting 

health and wellness for people with disabilities. This problem stems from the fact that no 

single Federal agency collects and catalogues health, health disparities, and health 

promotion research for people with disabilities conducted across all the agencies that 

have a role in health. The research that can be identified appears poorly integrated into 

overall health disparities and health promotion research, and too little funding is 

available to spur a coherent investigative strategy. 

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In its 2007 report “The Future of Disability in America,” IOM supports this observation 

with respect to disability research. According to IOM, since its report “Enabling America” 

was published in 1997, 

. . . many of the same problems of limited visibility and poor coordination 

continue to characterize the organization and funding of federal disability 

research. The enterprise is still substantially underfunded, given the individual 

and population impact of disability in America, which will grow as the population 

of those most at risk of disability increases substantially in the next 30 years.589 

As evidenced by the disability-specific research topics supported by various agencies 

(summarized in chapter 4), little attention has been devoted to conducting research on 

the environmental barriers to health care people with disabilities encounter, the capacity 

of health care providers to accommodate people with diverse disabilities, the barriers 

health care providers perceive in providing such care, and the development of 

successful models for addressing these deficiencies. 

D. Federal Agency Political and Structural Issues 

The IOM has noted specific structural problems in Federal agency disability research that 

NCD has also observed in its study of health-related research for people with disabilities. 

These problems functionally impede the development of a unified, coherent plan for 

research and program development. Specifically, the level of funding and research is 

wholly inadequate to inform policy and planning for the growing number of people who will 

acquire disabilities with age and for the overall future impact of disability on society. Within 

the Federal research community, commitment to disability health disparities and health 

promotion research is lacking and coordination mechanisms are weak. The ICDR is 

underfunded and lacks the authority and gravitas to carry out its coordination functions 

adequately. CDC’s Disability and Health Team, which has been a leader in health 

promotion and disease prevention for people with disabilities, is embedded in the National 

Center on Birth Defects and Developmental Disabilities (NCBDDD), rather than residing at 

a level within CDC that would vest the unit with more authority and potentially generate 

greater funding. AHRQ is one of the few agencies with a congressional mandate to conduct 

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health research and disseminate research findings for people with disabilities, who are 

included in the agency’s focus on priority populations, but so far its level of effort on 

disability topics other than treatment for specific impairments has been modest. In part, this 

may be attributable to its exceptionally broad and ambitious mission and limited funding, 

but it is also likely to be a function of internal priority setting. Further, the agency has no 

authority to require adoption of recommendations or standards that are identified through 

sponsored research, which dilutes its practical capacity to influence the actions, policies, 

and practices of various target audiences. The HHS Office on Disability performs a useful 

crosscutting educational and collaborative role but appears to be underfunded and is not 

vested with any tools that could enhance its capacity for impact. Finally, the limited 

research recently supported by some NIH centers and institutes, while valuable and even 

groundbreaking in some instances, lacks coordination and a coherent unifying vision. 

E. Professional Training and Education 

The absence of professional training on disability competency issues is one of the most 

significant barriers that prevent people with disabilities from receiving appropriate and 

effective health care. This deficit is widely acknowledged in numerous studies, focus 

groups, and journal articles (see chapter 1), and by the Surgeon General in the “Closing 

the Gap” and “Call to Action” reports. NCD’s study of Federal efforts to promote health, 

health care, wellness, and disease prevention identified very few initiatives that 

acknowledge and attempt to address the absence of professional training on disability 

competence. The training opportunities in the field of developmental disabilities, 

established by the DD Act, are notable. However, researchers and advocates note that 

most people with developmental disabilities receive care from practitioners who have 

not had such training and who are often unaware of the related issues and needs. Such 

knowledge deficits among practitioners are the result of the lack of disability 

competency training by medical and other professional and allied health institutions. 

While disability awareness courses are increasing in medical schools, these courses 

are often optional and lack stable funding.590 Moreover, disability competency is not a 

core requirement for accreditation for most professional training institutions, and 

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disability competency training is not required for hospitals that receive Federal funds for 

student internships and residency programs. Such knowledge is generally not required 

of applicants who seek a medical or other professional license.591 

Federal agencies, including HRSA and many of the NIH centers and institutes, offer 

medical and other professional health education loan forgiveness programs when a 

young health care professional agrees to work with designated underserved populations 

or in underserved geographic areas. However, these agencies have not identified 

people with disabilities or subgroups of people with disabilities as underserved health 

care populations. Therefore, recent health care graduates cannot benefit from the loan 

forgiveness program if they work in health care settings that serve substantial numbers 

of people with disabilities. 

Acknowledging the dearth of professional education, the HHS Office on Disability 

convened a meeting in spring 2008 that brought together experts to discuss strategies for 

solutions. Examples of Federal grant making in this area include an award by the National 

Cancer Institute to increase medical students’ awareness of health issues of people who 

are deaf or hard of hearing and a National Eye Institute (NEI) grant for a project to 

educate eye health care professionals about the issues of vision rehabilitation. A few 

previous Federal grants, including some from NIDRR, have addressed the problem. 

However, these limited Federal efforts do not constitute a coherent or committed 

response to the need for student training by medical and other professional schools. 

F. Federal Legislative Mandates and Funding 

Disability programs—either specifically mandated and adequately funded by Federal 

legislation, or adequately funded by specific appropriations and carried out by Federal 

agencies—are most likely to foster awareness on a given subject, gain enough leverage 

to achieve some of the desired outcomes, and ensure long-term continuity. One example 

is the combined impact of the 67 University Centers of Excellence on Developmental 

Disabilities (UCEDDs) and the 35 Leadership Education in Neurodevelopmental and 

Related Disabilities (LEND) programs. The national network of UCEDDs is authorized 

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under the DD Act, and their core funding is administered by the Administration on 

Developmental Disabilities (ADD). Each state has at least one UCEDD, and there are 

LENDs operating in 29 states. The impact of such a sustained and ongoing operation is 

reflected in a given year in the number of clinical services provided to individuals with 

disabilities and their families. For example, in 2006, the UCEDDs and LENDs provided 

clinical services for 146,484 people with developmental disabilities. Among those, 

minority populations who are typically underserved received services at a higher rate than 

their proportion of the national population.592 While it is likely that individuals who 

received these services benefited from a high standard of interdisciplinary care a

coordination, most people with intellectual and developmental disabilities continue to 

experience significant health and health care problems, and difficulty obtaining 

appropriate care. The UCEDD infrastructure, however, provides an important foundation 

on which future models of knowledge, capacity-building, and care can be designed. 

nd care 

Unlike the UCEDDs, LENDs, and other programs operating with a legislative mandate, 

much of the remaining disability and health research (including health disparities 

research undertaken by agencies such as NIDRR) has been supported with 1- to 

5-year grants that have little or no long-term continuity. Although disability health care is 

a core research area for NIDRR, specific research in this area is subject to fluctuating 

internal priorities. For example, in 2007, a 5-year NIDRR grant ended for the 

Rehabilitation Engineering Research Center on Accessible Medical Instrumentation, 

undertaken by Marquette University and partners—and a continuation project is not 

planned.593 Inaccessible diagnostic and medical examination equipment is a primary 

barrier to health care for people with certain disabilities, and this Marquette project 

identified preliminary metrics that could inform accessible design for medical equipment. 

However, according to its draft strategic plan for 2010–2014, NIDRR intends to 

emphasize employment research; this indicates that funding may not be available for 

Marquette’s to continue its unique research.594 Unfortunately, changing agency 

interests, among other factors, can disrupt and dilute the impact of work undertaken 

during initial funding cycles and ensure that problems remain unsolved. 

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The Minority Health and Health Disparities Research Act, which established the Center 

on Minority Health and Health Disparities (NCMHD) sets forth specific conditions that 

must be met for a group to be considered a disparity population. The legislation that 

established the center specifies that minority groups are to be given priority 

consideration, thus directing the focus of health disparities research toward racial and 

ethnic minority populations, and only to a lesser extent on the other demographic 

groups. Thus far, people with disabilities have not been included in the work of the 

NCMHD. Consequently, people with disabilities are in a Catch-22 situation. The 2004–

2006 report of the Interagency Committee on Disability Research (ICDR) states, “Little 

is known about health disparities within and across disability conditions or between 

people with disabilities and those without, and support for further exploration is 

needed.”595 More research evidence is clearly required to show the extent of health 

disparities that people with disabilities experience, but they are not fully included as a 

population category in the nation’s primary research effort. 

In 2003, NIH and other Federal agency partners established eight Centers for Population 

Health and Health Disparities. For the purpose of the centers, “health disparity” is defined 

as “differences in the incidence, prevalence, mortality, and burden of diseases, and other 

adverse health conditions that exist among specific population groups in the United 

States.”596 Initially, study populations included only low-income whites, African 

Americans, Latinos, and older people, and people with disabilities were not explicitly 

included. This created additional hurdles to their inclusion in the disparities research 

being undertaken by some of the nation’s most renowned research institutions. 

While NCMHD and other Federal agencies do not recognize disability status as a 

population demographic, several Federal agencies explicitly include disability status, 

along with other population groups, in their definitions of disparity populations, either in 

accordance with their mission statements or in response to legislative directives. For 

example, the National Institute of Dental and Craniofacial Research (NIDCR) interprets 

health disparities expansively, acknowledging disability as a population subgroup defined 

by demographic factors; NIDCR also accounts for social and environmental influences.597

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Other agencies have either a legislative directive or a funding appropriation that 

explains their involvement. For example, the Health Care Research and Quality Act of 

1999, which established AHRQ, defines health care research priority populations to 

include low-income groups, minority groups, women, children, the elderly, and 

individuals with special health care needs, including individuals with disabilities and 

individuals who need chronic care or end-of-life health care. 

While these agencies unquestionably have undertaken important initiatives that 

include people with disabilities, the overall effort is very modest relative to the need 

and compared with the level of Federal research on behalf of other disparity groups. 

There is no assurance that agencies without an express mandate will continue to 

conduct disability health disparities research in the future. Realistically, research 

continuity exists only for Federal agencies and programs that have a congressional 

mandate and funding. In the absence of a legislative directive and an ongoing source 

of program funds, people with disabilities must depend on champions within the 

various agencies and centers. 

The lack of consistency in defining health disparity populations creates some confusion 

and sends mixed messages about whether disability status should be acknowledged as 

a bona fide population demographic, and impedes a unified research approach to 

disability health disparities. Faced with this dilemma, the disability community, for the 

most part, has been forced to argue its own case for acceptance as a legitimate health 

disparities population worthy of research resources, whereas the health disparities 

experiences of other groups and populations have been widely acknowledged and are 

benefiting from the ongoing investment in research. 

G. Interagency Collaborations 

Against this complex backdrop, several interagency collaborations hold promise for 

increasing Federal agency attention to health disparities research for people with 

disabilities. For example, CDC produced a 2006 report, “Advancing the Nation’s Health: 

A Guide to Public Health Research Needs, 2006–2015,” which identifies research areas 

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that should be addressed during the next decade by CDC and its numerous partners. 

The report includes a chapter on health disparities experienced by people with 

disabilities. This chapter states: 

An estimated 24 million persons experience significant disabilities due to 

impairments, including cerebral palsy, rheumatoid arthritis, spina bifida, 

developmental disorders, inherited blood disorders, vision loss, and spinal cord 

injury. . . . Information is lacking regarding the course of these disabling 

conditions and related secondary conditions (e.g., obesity and depression 

resulting from loss of mobility and independence) as persons move through 

different stages of life; the 24 million persons currently affected by severe 

disabilities represent the first generation of such persons to have lived into 

middle or old age. Understanding and preventing poor health in this population 

and identifying comprehensive health care practices will have a significant 

impact on health-care resources. Knowledge of the course and impact of 

illness on disabled populations will help in the development of health promotion 

interventions and the reduction of health disparities.598 

The Federal Collaboration on Health Disparities Research (FCHDR), a collaboration of 

Federal agencies working to eliminate health disparities through research, began 

operations in 2006 to explore, coordinate, and support innovative health disparities 

research and identify priorities for cross-agency collaboration. The Interagency 

Committee on Disability Research (ICDR) is co-leading the FCHDR. The ICDR, led by 

NIDRR, promotes coordination and cooperation among Federal departments and 

agencies conducting rehabilitation research programs. As co-leader, ICDR is positioned 

to influence the direction of the work undertaken by the coalition and to encourage 

inclusion of health disparities concerns of people with disabilities.599 Unfortunately, 

limited funding and staffing have prevented ICDR from fulfilling its research coordination 

role in the past and may hamper it from exerting sufficient influence on this process to 

generate the desired outcomes.600

H. List of Recommendations 

The recommendations presented in previous chapters have been organized into four 

primary subject matter categories and are listed in this section. This organizational 

structure facilitates the presentation of recommendations as they relate to specific 

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problems identified by the study. The categories are (1) research; (2) professional 

education, training, and technical assistance; (3) monitoring, oversight, and 

accountability; and (4) improving systemic access to health care services and programs. 

Recommendations are directed to Congress, the Administration, professional medical 

and accreditation organizations, states, standards-setting bodies, health care 

organizations, the health and disability policy and research community, the disability 

community, and others. Each recommendation is followed by a reference to the chapter 

in which it first appears. 

1. Research 

RECOMMENDATION #1.1:

Congress should amend the Minority Health and Health Disparities Research and 

Education Act to broaden the definition of “health disparity population” found in 42 

U.S.C. § 287c-31(d) to encompass “populations for which there is a significant 

disparity in the quality, outcomes, cost, or use of health care services or access to 

or satisfaction with such services as compared to the general population,” as 

specified in 42 U.S.C. § 299a-1(d). This will enable people with disabilities to be 

included in the health and health care disparities research, program development, 

professional training, health promotion, and clinical interventions conducted and 

supported by the National Center on Minority Health and Health Disparities, as well 

as other Federal agencies that are currently engaged in health disparities research 

and activities on behalf of racial and ethnic minorities and other geographic and 

population groups. (See chapter 4.)

RECOMMENDATION #1.2:

Congress should increase funding for the Interagency Committee on Disability 

Research of the National Institute on Disability and Rehabilitation Research in 

order to (1) vest it with sufficient resources and authority to fulfill its mandated 

research coordination role and (2) expand its role to include collaboration with 

other agencies, including Centers for Disease Control and Prevention (CDC), 

Agency for Healthcare Research and Quality (AHRQ), and the Department of 

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Health and Human Services (HHS) Office on Disability, to identify research areas 

related to health, health care, and health disparities that lend themselves to 

interagency collaboration. (See chapter 4.) 

RECOMMENDATION #1.3:

The Director of the National Institutes of Health (NIH) should require that institutes 

and centers within NIH that conduct health disparities research include people with 

disabilities as a demographic population for the purpose of such research. The 

Director should also request that the Scientific Management Review Board 

determine how best to integrate disability and health disparity research into the 

portfolios of the institutes and centers, and recommend any organizational changes 

that might be required to achieve this goal. (See chapter 3.) 

RECOMMENDATION #1.4:

The Agency for Healthcare Research and Quality (AHRQ), within its mandate to 

undertake research on priority populations, should promote research that clearly 

identifies the various barriers encountered by people with disabilities when seeking 

health care. Such research would help disability health policy researchers and other 

stakeholders to assemble an accurate picture of, for example, the extent to which 

health care technologies, facilities, and equipment remain inaccessible to people with 

various disabilities, and bolster efforts to effect change. (See chapter 3.) 

RECOMMENDATION #1.5:

Federal agencies concerned with disability and health—including the Department 

of Health and Human Services (HHS), the Agency for Healthcare Research and 

Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), the 

National Institute for Disability and Rehabilitation Research (NIDRR), and the 

Access Board—should develop mechanisms to undertake research that 

investigates the economic and systemic implications, as well as the impact of 

barriers to health care access, on people with disabilities, and the potential for 

enhanced efficiency and cost savings through improved access. (See chapter 4.) 

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Recommendation #1.6:

The U.S. Surgeon General should lead an effort with other Federal agencies 

concerned with health care quality for people with disabilities—including the 

Department of Health and Human Services (HHS) Office of Disability, the Centers 

for Medicare & Medicaid Services (CMS), the National Institute on Disability and 

Rehabilitation Research (NIDRR), the Agency for Healthcare Research and Quality 

(AHRQ), the Access Board, and the Administration for Children and Families 

(ACF)—in a joint project that will establish principles of universal design for health 

care facilities and programs. Goals and objectives should be established and key 

stakeholder actions identified. Drawing on the well-established principles of 

universal design for the built environment, this collaboration should bring together 

Federal agency experts, disability and health policy researchers, leading disability 

and health practitioners (e.g., physicians who specialize in caring for women with 

disabilities, people who are deaf or hard of hearing, and people with intellectual 

and developmental disabilities, as well as vision rehabilitation experts), and people 

with disabilities to participate in the process. The Surgeon General should publish 

a report of findings that builds on previous publications, such as “Call to Action To 

Improve the Health and Wellness of Persons with Disabilities,” “Closing the Gap: A 

National Blueprint To Improve the Health of Persons with Mental Retardation,” and 

“Report of the Surgeon General’s Conference on Health Disparities and Mental 

Retardation.” (See chapter 4.) 

Recommendation #1.7:

Federal agencies that undertake health research for people with disabilities, such 

as the Agency for Healthcare Research and Quality (AHRQ), the Centers for 

Disease Control and Prevention (CDC), and the Administration for Children and 

Families (ACF), should undertake studies that document the extent to which the 

health care needs of women with disabilities, people who are deaf or hard of 

hearing, people with intellectual and developmental disabilities, and people who 

are blind or have vision impairments are being met. Such studies should use 

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outcome-oriented approaches and will provide a foundation for developing 

crosscutting, universal quality-of-care guidelines. (See chapter 5.) 

Recommendation #1.8:

A regularly conducted national survey of physicians and other health care providers 

should be developed. Such a survey could begin with Medicare and Medicaid 

providers, because they receive Federal financing for their services. However, the 

ultimate goal would be to have a nationally representative sample of all providers. 

Information should be collected from providers on (1) demonstrated physical 

accessibility, (2) demonstrated capacity to provide programmatic accessibility, (3) level 

of knowledge and confidence in treating patients with disabilities, and (4) disability 

training and cultural competency of office staff. (See chapter 5.) 

Recommendation #1.9:

Ongoing research activities must continue to develop a valid and reliable set of 

survey questions that identify people with disabilities, and these questions must be 

included in all regularly conducted national surveys. The standardized questions 

should be included in the core of all surveys, but surveys that already contain 

additional data items should continue to use them, to permit more detailed and 

nuanced analyses. Specifically: 

• Behavioral Risk Factor Surveillance System (BRFSS) should include the 

standardized question set in its core (substituted for the two questions currently 

in its core). 

• The Consumer Assessment of Healthcare Providers and Systems (CAHPS) 

should add the standardized disability questions to its core. 

• The Medicare Beneficiary Survey (MCBS) has a number of disability indicator 

questions, but they should be part of the standardized set. (See chapter 5.) 

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Recommendation #1.10:

Reliable and valid questions that can identify people with intellectual and mental 

health disabilities should be developed and regularly used in major surveys. In 

addition, the major national surveys should develop and use, on a regular basis, 

questions that identify, in separate categories, people who are blind, visionimpaired, deaf, or hard of hearing. Such questions should be asked of all 

respondents, not just those over 40 years of age, as is currently the case for 

questions concerning vision loss in Module 4 of the Behavioral Risk Factor 

Surveillance System (BRFSS). (See chapter 5.) 

Recommendation #1.11: 

Surveys that ask questions about access and utilization of care should provide 

answer options that enable respondents to indicate disability-related problems with 

access. For example, the reasons for delaying or going without care should include 

options about physician office equipment and other accessibility issues, and about 

physician disability competence and acceptance of patients with disabilities. 

Questions that can provide data with respect to policies for eligibility for use of 

public health programs and benefits are also needed. (See chapter 6.) 

Recommendation #1.12: 

The Agency for Healthcare Research and Quality (AHRQ) and the National Center 

for Health Statistics (NCHS) should include people with disabilities as one of the 

population groups in the tables that comprise the annual reports derived from the 

Medical Expenditure Panel Survey (MEPS) and National Health Interview Survey 

(NHIS) datasets. Data on people with disabilities should be crossed with the health 

care access indicators, and reporting should provide dual demographic status and 

access (e.g., access data for disability/gender; disability/race/ethnicity groupings). 

(See chapter 5.) 

Recommendation #1.13: 

Federal support is imperative for research to investigate the outcome of wellness 

and prevention programs and services for people with disabilities, and attention is 

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needed in other wellness/prevention research to ensure that people with disabilities 

have access to such programs and services (with appropriate data collected about 

their experiences and outcomes). (See chapter 5.)

Recommendation #1.14: 

Incentives and directives are needed to increase the use of the existing optional 

disability modules or supplemental questions in the national surveys, especially for 

the Behavioral Risk Factor Surveillance System (BRFSS), the Medical Expenditure 

Panel Survey (MEPS), the National Health Interview Survey (NHIS), and possibly 

the Consumer Assessment of Healthcare Providers and Systems (CAHPS). States 

should be directed to use the modules or questions on a periodic basis; funds as 

an incentive to implement should be offered to support their use. (See chapter 5.) 

Recommendation #1.15: 

Modules that ask about specific disability access issues should be developed. The 

Consumer Assessment of Healthcare Providers and Systems (CAHPS) Mobility 

Impairment module is a good example, but the module should be applicable more 

broadly and in more surveys. This would provide an alternative to mounting a national 

special survey. However, a survey such as the National Health Interview Survey-D 

(NHIS-D) should be conducted at a minimum once every 10 years. (See chapter 5.) 

Recommendation #1.16: 

Survey sampling and data collection should be designed to include people living in 

institutional settings and group quarters, especially in community-based group 

quarters. Surveys should be conducted in a manner that does not exclude people 

who do not communicate by telephone or do not have telephones. Translations for 

American Sign Language (ASL) should be made for the major surveys to ensure 

the inclusion of people who use ASL as their primary language. (See chapter 5.) 

Recommendation #1.17: 

Federal agencies concerned with improving access to appropriate and effective 

health care for people with disabilities—including the Agency for Healthcare 

315 
Research and Quality (AHRQ), the National Institute on Disability and Rehabilitation 

Research (NIDRR), the Administration for Children and Families (ACF), and the 

Centers for Disease Control and Prevention (CDC)—should establish an interagency 

collaboration to produce guidelines that identify universal and crosscutting elements 

of quality measures that will drive delivery of health care in general and also for 

diverse people with disabilities. This endeavor should be undertaken in collaboration 

with agency experts, disability and health policy researchers, leading disability and 

health practitioners (e.g., physicians who specialize in caring for women with 

disabilities, people who are deaf or hard of hearing, or people with intellectual and 

developmental disabilities, as well as vision rehabilitation experts), and people with 

disabilities. The guidelines should be disseminated widely and promoted in medical 

education programs and among practitioners. (See chapter 7.) 

Recommendation #1.18: 

The Institute of Medicine (IOM) of the National Academies of Science should 

include the topic of health disparities experienced by people with disabilities in its 

workshops and roundtables on health disparities. IOM should expand on 

recommendations presented in its 2006 report critiquing the National Institutes of 

Health (NIH) interagency disparity activities to include a recommendation that 

disability health disparities be acknowledged as a national problem. IOM should 

also urge the development of programs and strategies to reduce health disparities 

for people with disabilities. (See chapter 4.) 

2. Professional Education, Training, and Technical Assistance 

Recommendation #2.1: 

Congress should establish a technical assistance system through which states, 

health plans, clinics, hospitals, diagnostic and treatment centers, individual medical 

practitioners, equipment manufacturers, people with disabilities, and others can 

easily obtain centralized information on universal standards of care and related 

practical resources for ensuring full access to culturally competent health care 

services for people with disabilities. (See chapter 6.) 

316 
Recommendation #2.2: 

Agencies of the Federal Government, including the institutes and centers of the 

National Institutes of Health (NIH) that are involved in providing Federal grants and 

Federal loans, including loan forgiveness programs for medical education, should 

require that medical training institutions whose students receive support include in 

their training curriculums material that ensures that graduates will possess 

disability knowledge, cultural competency, and a basic capacity to work effectively 

with people with disabilities. (See chapter 1.) 

Recommendation #2.3: 

The Health Resources and Services Administration (HRSA) should designate 

people with disabilities or subgroups of the population as medically underserved 

populations. Such a designation will open opportunities for physicians, physician 

assistants, and dentists who choose to provide health care services for a 

significant number of patients with disabilities in their practices to apply for Federal 

student loan forgiveness. (See chapter 4.) 

Recommendation #2.4: 

Federal agencies concerned with health care quality for people with disabilities—

including the Agency for Healthcare Research and Quality (AHRQ), the National 

Institute on Disability and Rehabilitation Research (NIDRR), and the Access Board—

should develop a best practices guide to help providers (a) recognize that universal 

design goes beyond Americans with Disabilities Act (ADA) requirements and (b) 

understand methods of implementing and evaluating universal design principles in 

health care settings. This guide should also profile organizations that have 

implemented best practices, including their methods and outcomes. (See chapter 7.) 

Recommendation #2.5: 

Federal agencies—including the Centers for Disease Control and Prevention 

(CDC), the Agency for Healthcare Research and Quality (AHRQ), and the 

Department of Health and Human Services (HHS) Office of Disability—should 

317 
collect and disseminate information about models for improving access to care for 

people with disabilities. (See chapter 7.) 

Recommendation #2.6: 

The Association of American Medical Colleges (AAMC) and the Liaison Committee 

on Medical Education (LCME) should convene a workgroup charged with 

identifying specific disability competencies that should be required of health care 

professionals before graduation from medical and residency training programs, and 

translate these competencies into specific course recommendations that can be 

adopted by medical training programs. Competencies should include the core 

knowledge and skills required to provide developmentally appropriate health care 

transition services to young people with intellectual and developmental disabilities; 

awareness of language and cultural issues related to the Deaf community; and 

general awareness of health care issues and concerns of people who are blind or 

have vision impairments, women with disabilities, and others within the disability 

community. (See chapter 6.) 

Recommendation #2.7: 

The Registry of Interpreters for the Deaf should consider creating a specialist 

certification for medical and mental health interpreting. Such a certification should 

be developed in collaboration with the organizations that are currently providing 

medical training for interpreters, with organizations of people who are deaf, and 

with individuals who are deaf or hard of hearing. (See chapter 7.) 

Recommendation #2.8: 

Radiology technician training and certification programs should adopt key elements 

of the training program that the Breast Health Access for Women with Disabilities 

(BHAWD) has created and implemented for helping radiology technicians learn 

techniques for performing mammograms on women with diverse disabilities. All 

training programs should incorporate these key elements into training curriculums 

and licensing examinations. (See chapter 7.)

318 
3. Monitoring, Oversight, and Accountability 

Recommendation #3.1: 

The U.S. Department of Justice (DOJ) must step up monitoring and enforcement of 

the Americans with Disabilities Act (ADA) and Section 504 of the 1973 

Rehabilitation Act for health care facilities and programs. DOJ must focus 

additional resources on compliance monitoring and investigation of Title III 

complaints concerning programmatic access violations of the ADA and Section 504 

by health care providers. (See chapter 1.) 

Recommendation #3.2: 

Congress should direct the Department of Health and Human Services (HHS) to 

identify performance standards that must be included as a condition of receiving 

Federal financial assistance to ensure that states, health plans, managed care 

organizations, and health care providers who receive Federal health care funds 

under Medicaid, the State Children’s Health Insurance Program (SCHIP), and 

other Federal programs that pay for health care for people with disabilities meet the 

minimum requirements of the Americans with Disabilities Act (ADA) and Section 

504 of the Rehabilitation Act, and that they possess sufficient cultural competency 

to provide effective health care to people with disabilities. (See chapter 1.) 

Recommendation #3.3: 

Congress should create and fund an Office of Disability and Health in the Office of 

the Director at the Centers for Disease Control and Prevention (CDC) to mandate 

and oversee integration of disability issues into all CDC programs. (See chapter 4.) 

Recommendation #3.4: 

The Secretary of the U.S. Department of Health and Human Services (HHS) should 

require substantive evidence of compliance with Title V of the Social Security Act’s 

Section 504 nondiscrimination provision from every state that receives funding under 

the Maternal and Child Health Services (MCH) Block Grant program. 

319 
States that receive Maternal and Child Health Services Block Grant (MCH Block 

Grant) funding should link their responsibility for ensuring disability 

nondiscrimination in Title V programs, as expressly incorporated in the statute, with 

their existing reporting requirements. For example, currently required information 

on the number of maternal and child-health-related providers licensed in the state 

in a year should incorporate information on the degree to which those providers 

have received training in the accessibility needs of children with disabilities. 

Currently required information on the proportion of women who did not receive 

prenatal care during the first trimester of pregnancy should include information on 

whether the mother had a disability along with currently collected information about 

her racial and ethnic group. Moreover, indicators specific to the structural and 

programmatic accessibility of maternal and child care providers in Title V programs 

should be systematically incorporated in the annual audits. (See chapter 3.) 

Recommendation #3.5: 

The Department of Health and Human Services (HHS), the U.S. Department of 

Justice (DOJ), the Centers for Medicare & Medicaid Services (CMS), and the U.S. 

Access Board should enter into an interagency agreement to identify and adopt 

performance standards to ensure that states, health plans, managed care 

organizations, and health care providers who receive Federal health care funds 

under Medicaid, the State Children’s Health Insurance Program (SCHIP), and 

other federally funded health care programs meet the minimum requirements of the 

Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, 

and that they possess sufficient cultural competency to provide effective health 

care for people with disabilities. Such methods could include a Federal contractual 

requirement that states, health plans, and providers collect and submit data 

concerning architectural and programmatic accessibility, capacity to accommodate 

patients with disabilities, and a showing of cultural competency and disability 

awareness. Such a contractual obligation should also include regular monitoring 

mechanisms. (See chapter 1.) 

320 
Recommendation #3.6: 

State Medicaid agencies that accept matching Federal monies must ensure that all 

Medicaid enrollees, including enrollees with disabilities, receive equal access to all 

aspects of the health care delivery system. Regulations enacted under Title XIX of 

the Social Security Act place ultimate responsibility for access to health care with 

the states. Each state is required to have a state Medicaid plan that “must ensure 

that all services covered under the State plan are available and accessible to 

enrollees of MCOs [managed care organizations], PIHPs [prepaid inpatient health 

plans], and PAHPs [prepaid ambulatory health plans].” The plans must include 

mechanisms to monitor and collect information about the extent of structural and 

programmatic access problems. 

The continuing presence of structural and programmatic barriers within the multiple 

levels of a state’s Medicaid health care system is an ongoing violation of the 

Medicaid program regulations and greatly contributes to the health care disparities 

experienced by people with disabilities. The state system may begin with Medicaid 

enrollment and extend to making health care appointments, as well as to actual 

health care examinations and treatment. (See chapter 3.) 

Recommendation #3.7: 

State Medicaid agencies and health maintenance organizations (HMOs) should 

notify enrollees with disabilities of their Federal accessibility rights, as well as the 

right to auxiliary aids where necessary, either for effective notice or to provide equal 

benefit from the service in question, as established in Section 504. State Medicaid 

agencies and HMOs that receive Federal financial assistance must acknowledge 

and act on their own generally greater financial and administrative capacity 

(compared with individual health care providers) to set policies and procedures that 

will inform, provide incentives, monitor, and enforce accessibility requirements 

among the providers that deliver health care services. (See chapter 3.) 

State Medicaid agencies and health maintenance organizations (HMOs) should 

notify enrollees with disabilities of their Federal accessibility rights, as well as the 

321 
right to auxiliary aids where necessary, either for effective notice or to provide 

equal benefit from the service in question, as established in Section 504. State 

Medicaid agencies and HMOs that receive Federal financial assistance must 

acknowledge and act on their own generally greater financial and administrative 

capacity (compared with individual health care providers) to set policies and 

procedures that will inform, provide incentives, monitor, and enforce accessibility 

requirements among the providers that deliver health care services. (See 

chapter 3.) 

Recommendation #3.8: 

States should develop mechanisms whereby health insurers, managed care 

organizations, and other health plans provide assurances that the health care 

providers (e.g., hospitals, clinics, diagnostic centers, provider offices, and 

laboratories) with whom they contract for Medicaid and other federally funded 

health care services provide physical and programmatic access for people with 

disabilities. Such mechanisms could include annual physical and programmatic 

access surveys of providers and adherence to other performance standards by 

health care providers that would be required to renew health service delivery 

contracts. Failure to provide the required information to appropriate state agencies 

should result in contract termination. (See chapter 1.) 

Recommendation #3.9: 

Health care accreditation organizations must play a primary role in ensuring that 

health care delivery provided to people with disabilities meets basic standards of 

cultural competency and accessibility. Accreditation bodies should evaluate health 

care institutions on the basis of the extent to which they meet minimum 

architectural accessibility in accordance with the Americans with Disabilities Act 

(ADA) Architectural Guidelines (ADAAG); reward the implementation of universal 

design principles in health care settings; have established mechanisms for 

ensuring that programmatic accommodations are provided (e.g., sign language 

interpreters, height-adjustable examination tables, wheelchair-accessible weight 

322 
scales, lifting assistance, and materials in alternative formats); and have 

established grievance procedures that ensure that people with disabilities can 

resolve problems in a timely way. (See chapter 6.)

4. Improving Systemic Access to Health Care Services and Programs 

Recommendation #4.1: 

Congress should ensure that reform of the health care system in the United States 

responds to the basic needs of people with disabilities by making certain that 

health care coverage is available and affordable to all people with disabilities 

without pre-existing condition limitations. Benefits made available through either 

private or public coverage, or a combination, must include access to appropriate 

prescription medications, specialty care, care coordination, durable medical 

equipment and assistive devices, and long-term care services. Any co-insurance 

payments must be affordable and annual or lifetime limits on these key benefits 

must not be permitted. Health care reform efforts must also take into account the 

fact that achieving health care equity for people with disabilities also includes the 

additional dimensions of physical and programmatic accessibility and health 

provider disability cultural competency. Some key elements of these additional 

dimensions can include the need for more time for medical visits for some people 

with disabilities, methods that ensure effective communication including provision 

of sign language interpreters and educational and instructional materials in 

accessible formats, and accessible diagnostic and other common medical office 

equipment such as height-adjustable exam tables and wheelchair accessible 

weight scales. To the extent possible, methods must be established to ensure that 

these essential elements are readily available when health care is delivered. 

Examples of possible methods to ensure they are provided include reimbursement 

for sign language interpreters by public and private insurers, new tax credits or 

other tax benefits that help offset costs, equipment sharing, and other schemes 

that create incentives for health care providers to acquire necessary equipment 

and services that are needed by patients with disabilities. (See chapter 1.) 

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Recommendation #4.2 : 

Congress should direct the Centers for Medicare & Medicaid Services (CMS) to 

establish a mechanism to pay for American Sign Language (ASL) interpreters 

when they are required for deaf or hard-of-hearing beneficiaries of Medicare, 

Medicaid, the State Children’s Health Insurance Program (SCHIP), and other 

federally funded health care to ensure that people who are deaf or hard of hearing 

who use sign language receive effective services from health care providers—

including mental health providers, clinics, hospitals, diagnostic centers, and 

laboratories—and in other health care settings. (See chapter 1.) 

Recommendation #4.3: 

Congress should direct the Centers for Medicare & Medicaid Services to identify 

and implement mechanisms to pay for vision rehabilitation services and assistive 

devices for people who are blind or have vision impairments who are beneficiaries 

of the Medicaid and Medicare programs or other federally subsidized health care. 

(See chapter 1.) 

Recommendation #4.4: 

Congress should amend the Public Health Service Act, which established the 

Substance Abuse and Mental Health Services Administration (SAMHSA) to include 

an emphasis on people with disabilities through the following changes: 

• Add a directive that identifies people with disabilities. Such a directive could be 

modeled after the existing directive to work with the National Institutes of Aging, 

Drug Abuse, Alcohol Abuse and Alcoholism, and Mental Health to “promote and 

evaluate substance abuse services for older Americans in need of such 

services, and mental health services for older Americans who are seriously 

mentally ill.” 

• Amend the specific provision that ensures “that services provided with amounts 

appropriated under this subchapter are provided bilingually, if appropriate” to 

324 
include the provision of effective methods of communication for people who are 

deaf or hard of hearing, including sign language interpreters. 

• Include mental health and substance abuse issues of concern to women with 

disabilities among the identified duties of the associate administrator and the 

Advisory Committee for Women’s Services, which ensure that “the unique 

needs of minority women, including Native American, Hispanic, African 

American, and Asian women, are recognized and addressed” in SAMHSA’s 

activities. This should include aspects of substance abuse and mental illness 

that are (a) unique to or more prevalent among women, or (b) characterized by 

insufficient services or data involving women. (See chapter 3.) 

Recommendation #4.5: 

The Centers for Medicare & Medicaid Services (CMS) should establish a 

mechanism to pay for sign language interpreters when they are required for 

beneficiaries of Medicare, Medicaid, the State Children’s Health Insurance 

Program (SCHIP), and other federally funded health care, to ensure that people 

who are deaf or hard of hearing who use sign language receive effective services 

from health care providers, including mental health providers, clinics, hospitals, 

diagnostic centers, and laboratories. (See chapter 1.) 

Recommendation #4.6: 

The Centers for Medicare & Medicaid Services (CMS) should identify and 

implement mechanisms to pay for vision rehabilitation services and assistive 

devices for people who are blind or have vision impairments who are beneficiaries 

of the Medicaid and Medicare programs. (See chapter 1.) 

Recommendation #4.7: 

The U.S. Department of Health and Human Services (HHS) should direct key 

Federal agencies charged with health promotion and disease prevention to 

collaborate and implement methods that ensure that people with disabilities are 

fully included in health promotion and disease prevention research, program 

325 
development, public education, and development of best practices. (See 

chapter 1.) 

Recommendation #4.8: 

The Centers for Medicare & Medicaid Services (CMS) should identify and support 

methods for providing coordinated primary health care to people with certain 

disabilities and multiple disabilities (for example, mobility or developmental 

disabilities) in home or community settings rather than the offices of health care 

providers to resolve some of the most pressing accessibility, accommodation, and 

transportation problems identified as barriers to care. The Minnesota UCARE 

Complete program could serve as a model to guide these deliberations. (See 

chapter 7.) 

Recommendation #4.9: 

The Centers for Medicare & Medicaid Services (CMS) should update their current 

definitions of durable medical equipment and medical necessity, which are 

outdated and give little consideration to increasing an individual’s functional status. 

The current patchwork of both Federal and state health care and private insurance 

coverage contains barriers and gaps that leave many people with disabilities 

unable to obtain needed assistive technology. As a starting point, more consistent 

and coherent Federal eligibility and reimbursement policies are needed. New 

definitions of medical necessity are needed to ensure that effective assistive 

technology will be deemed eligible for coverage and reimbursement. (See 

chapter 1.) 

Recommendation #4.10: 

States should enact legislation that requires health insurers either to pay for sign 

language interpreters through employer-based group health insurance plans or to 

pay directly into a state fund or another mechanism established specifically to 

cover ASL interpreter expenses for people who are deaf who receive health care 

services through a private insurance plan. (See chapter 1.) 

326 
I. Conclusion 

People with disabilities bear a disproportionate burden of poor health compared with the 

general population and use preventive services at a lower rate than people who do not 

have disabilities. For many, health care in the United States is not always available or 

affordable, and gaps in coverage can present insurmountable obstacles to obtaining 

appropriate care and maintaining good health. Lack of health care provider education 

and disability cultural awareness and competency also creates significant barriers for 

people with disabilities when they try to access care. Other common and pervasive 

barriers to care include health care provider misperceptions and disability stereotypes 

that can lead to ineffective and inappropriate care, lack of accessible equipment such as 

common office exam tables, lack of written information provided in accessible 

alternative formats, and ineffective provider-patient communication when sign language 

interpreters are not provided or there is not enough time to communicate adequately 

with a patient who has a speech or cognitive disability. At the same time, social, 

economic, and cultural factors such as poverty, lack of transportation, and fragmented 

support services further contribute to poor health and health outcomes for some people 

with disabilities. 

The root causes of these longstanding health and health care inequities involve 

multiple, complex factors that are embedded in the historical evolution of the nation’s 

health care structure, and the parallel research and public health emphasis on disability 

prevention and cure. One especially serious outcome of this evolutionary process is a 

highly fragmented health care delivery system, which is unable to reconcile the 

competing interests of cost containment and patient-centered care, which is an 

important tool for achieving culturally competent care for people with disabilities. 

Another current manifestation of the historic public health emphasis on disability 

prevention is the slow pace at which the research community has moved in 

acknowledging disability as a demographic indicator that should be considered in health 

disparities research. Disability is slowly gaining acceptance and recognition as a bona 

fide population demographic, thanks in part to the Surgeon General’s reports and the 

leadership of “Healthy People 2010.” The Federal Government, however, has yet to 

327 
328 

identify disability health disparities as a high research priority or call for a robust, 

coordinated, multiagency effort to identify the reasons such disparities exist. Although 

more than a dozen bills on research and funding strategies to improve the health status 

of groups experiencing health disparities were introduced in the 110th Congress in 2007, 

not one identified people with disabilities as a group experiencing health disparities 

rather than as a group whose diagnosis is to be avoided or prevented. 

As with any other identifiable minority group whose basic health care needs are not 

being met, the impact of physical, financial, cultural, socioeconomic, and other 

environmental barriers on the ability of people with disabilities to obtain needed care 

must be acknowledged and identified. The health inequities that people with disabilities 

experience must not be reduced to a matter of individual genetics as researchers 

continue to explore the interconnections between economic, social, and other 

environmental factors and individual or minority group health. 

Immediate action must be taken where existing research reveals the clear need for such 

strategies as enhanced health care provider education, greater clinical research, 

enhanced payment systems, and the removal of policy and procedural barriers and 

other physical barriers to receiving quality health care services. It is equally critical that 

accurate and integrated data be collected for people with disabilities to ensure 

continuing progress in addressing health and health care inequities. 

There is no simple solution to the complex and entrenched problems people with 

disabilities experience when they seek health care. Key elements of any move toward 

reform must include action by Congress and Federal agencies that have a role in health 

care. Professional medical associations, organizations of medical educators, 

accreditation organizations, and the public health community must also turn their 

attention to the issues. The disability community must continue in its leadership, 

advocacy, and watchdog roles, and must participate in state and national discussions 

about health care reform. 
APPENDIX A. Key Informant Interviewees and 

Informational Interviewees 

Key Informant Interviewees 

Anita Aaron 

Executive Director 

LightHouse for the Blind and Visually 

Impaired 

214 Van Ness Ave. 

San Francisco, CA 94102 

415–694–7348 

415–431–1481 

Barbara Altman, Ph.D. 

Formerly, Special Assistant on Disability 

Statistics 

National Center for Health Statistics 

Centers for Disease Control and Prevention 

14608 Mellinda Lane 

Rockville, MD 20853 

301–460–5963 

Brian Armour 

Health Scientist 

Division of Human Development and 

Disability 

Centers for Disease Control and Prevention 

1600 Clifton Rd. 

Atlanta, GA 30333 

800–232–4636 

Steven Barnett, M.D. 

Department of Community & Preventive 

Medicine 

National Center for Deaf Health Research 

University of Rochester 

P.O. Box 278990 

Rochester, NY 14627–8990 

866–901–0727 (voice/VRS) 

Vincent Campbell, Ph.D. 

Associate Director for Science 

Disability and Health Team 

Division of Human Development and 

Disability 

CDC/National Center on Birth Defects and 

Developmental Disabilities 

1600 Clifton Rd. 

Mail Stop E–88 

Atlanta, GA 30333 

404–498–3012 

Leighton Chan, M.D., M.P.H. 

Chief 

Rehabilitation Medicine Department

NIH Clinical Center 

National Institutes of Health 

Bethesda, MD 

301–496–4733 

Tracie Harrison, Ph.D. 

Assistant Professor 

School of Nursing 

The University of Texas at Austin 

1700 Red River St. 

Austin, TX 78701 

512–471–7311 

512–471–7913 

Teri Hedding 

Manager, Deaf Access Program 

Sinai Health Systems 

1501 S. California Ave. 

Chicago, IL 60608 

TTY/VP: 773–257–6289 

773–257–5125 

773–257–2124 

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Gary Kauffman, M.D. 

Director, Deaf Access Program 

Mt. Sinai Hospital 

1500 S California Ave. 

Chicago, IL 60608 

773–542–2000 

Gloria Krahn, Ph.D., M.P.H. 

Director, OIDD 

Child Development and Rehabilitation 

Center 

Oregon Health & Science University 

503–494–7410 

(Subsequent to her interview, Dr. Krahn 

became the Director of the Division of 

Human Development and Disability 

(DHDD) at the National Center for Birth 

Defects and Developmental Disabilities 

(NCBDDD) within the Centers for Disease 

Control and Prevention.) 

Clarissa Kripke, M.D., FAAFP 

Associate Clinical Professor 

Department of Family and Community 

Medicine 

University of California, San Francisco 

UCSF Family Medical Center, Lakeshore 

500 Parnassus Ave. 

MU3E, Box 0900 

San Francisco, CA 94143 

415–353–3253 

Linda M. Long, Esq. 

Adjunct Clinical Instructor 

University of Massachusetts Medical 

School 

Center for Health Policy Research 

222 Maple St. 

Shrewsbury, MA 01545 

617–686–3054 

Bonnie O’Day, Ph.D. 

Mathematica Policy Research, Inc. 

600 Maryland Ave., SW, Suite 550 

Washington, DC 20024–2512 

202–484–9220 

Janet O’Keefe, Dr. P.H., R.N. 

Senior Researcher and Policy Analyst 

Aging, Disability and Long-Term Care 

RTI International 

1278 N Robinson Dr. 

Macon, NC 27551 

252–257–2433 

Susan L. Parish, M.S.W., Ph.D. 

Associate Professor School of Social Work 

University of North Carolina 

Tate-Turner-Kuralt Building 

325 Pittsboro St. 

CB 3550 

Chapel Hill, NC 27599–3550 

919–962–6434 

Constance Pledger 

Executive Director 

Interagency Committee on Disability 

Research (ICDR) 

U.S. Department of Education 

550 12th Street, SW., Room 6039, 

Potomac Center Plaza (PCP) 

Washington, DC 20202–2700 

202–245–7480 

Brenda Premo 

Executive Director 

Center on Disability Issues and the Health 

Professions 

Western University of Health Sciences 

309 E. Second St. 

Pomona, CA 91766–1854 

909–469–5441 

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331

Elizabeth Rasch 

Staff Scientist 

NIH – Mark O. Hatfield Clinical Research 

Center 

Rehabilitation Medicine Department 

Bethesda, MD 

301–594–3090 

Amy E. Rauworth, M.S., R.C.E.P. 

Associate Director, National Center on 

Physical Activity and Disability 

University of Illinois at Chicago (M/C 626) 

1640 W. Roosevelt Rd., Room 607 

Chicago, IL 60608 

312–355–1584 

Harvey A. Schwartz, Ph.D., M.B.A. 

Senior Advisor, Priority Populations 

Agency for Healthcare Research and 

Quality 

540 Gaither Rd. 

Suite 2050 

Rockville, MD 20850 

301–427–1552 

Arthur M. Sherwood 

Science and Technology Director 

National Institute on Disability and 

Rehabilitation Research (NIDRR) 

Office of Special Education and 

Rehabilitative Services 

400 Maryland Ave., SW. 

Washington, DC 20202 

202–245–7522 

Steven J. Taylor, Ph.D. 

Co-Director 

Professor of Cultural Foundations of 

Education 

Director of the Center on Human Policy 

Coordinator of Disability Studies 

School of Education 

Syracuse University 

Syracuse, NY 13244–2280 

315–443–3851 

JoAnn M. Thierry 

Scientific Program Officer 

Centers for Disease Control and Prevention 

Coordinating Center for Health Promotion 

Extramural Research Program Office 

4770 Buford Hwy. N.E. 

Mailstop K–92 

Atlanta, GA 30341 

770–488–8253 

Kris Vertiz 

Director, Deaf Access Program and 

Extended Services Dept. 

Schwab Rehabilitation Hospital 

1401 S. California Blvd. 

Chicago, IL 

773–522–5869 

Informational Interviewees 

Marty Barnum 

Director, Interpreting Operations 

Communication Service for the Deaf of 

Minnesota 

Metropolitan Hospital Consortium 

2055 Rice St. 

St. Paul, MN 55113 

651–487–8879 

Shelby Benton 

Case Coordinator 

Blindness Support Services 

3696 Beatty Dr., Suite A 

Riverside, CA 92506 

951–341–6333 
Lynn U. Berman 

Senior Media Relations Manager 

Premier HealthCare 

YAI/National Institute for People with 

Disabilities Network 

460 West 34th St. 

New York, NY 10001–2382 

212–273–6199 

203–981–6938 

Allan Brenner 

Executive Director/CEO 

The Earle Baum Center 

4539 Occidental Rd. 

Santa Rosa, CA 95401 

707–523–3222 

Marco Damiani 

Director, Clinical and Family Services 

YAI/National Institute for People with 

Disabilities 

YAI/NIPD Network 

460 West 34th St. 

New York, NY 10001–2382 

212–273–6182 

Pam Dodge 

Director of Ambulatory/Outpatient Care 

University of Pittsburgh Medical Center 

Magee Hospital 

Center for Women with Disabilities 

300 Halket St. 

Pittsburgh, PA 15213–3180 

412–641–1011 

Kenneth Frasse 

CEO/Executive Director 

Santa Clara Valley Blind Center 

101 North Bascom Ave. 

San Jose, CA 95128 

408–295–4016, ext. 201 

Wendy Geringer 

Director, Research and Program 

Development 

Westchester Institute for Human 

Development 

Cedarwood Hall 

Valhalla, NY 10595 

914–493–8150 

Joyce A. Hunter, Ph.D. 

Deputy Director 

National Center on Minority Health and 

Health Disparities 

National Institutes of Health 

6707 Democracy Blvd., Suite 800 

Bethesda, MD 20892–5465 

301–402–1366 

Amie Jackson, M.D. 

Spain Rehabilitation Center 

Disabled Women’s Health Center 

Chairman, Physical Medicine &

Rehabilitation, University of Alabama 

UAB Health System 

1802 6th Ave. South 

Birmingham, AL 35249 

205–934–3330 

Richard Laurion 

External Liaison and Project Manager 

CATIE Center 

The College of St. Catherine 

2004 Randolph Avenue, #4280 

St. Paul, MN 55105 

651–690–6973 

651–690–6727 

Videophone: 140–225–24–13 

Jessie Lorenz 

Director, Public Policy and Information 

LightHouse for the Blind and Visually 

Impaired 

214 Van Ness Ave. 

San Francisco, CA 94102 

415–694–7361 

332
333

Florita Toveg Maiki 

Alta Bates Summit Medical Center 

(ABSMC) 

Manager 

Breast Health Access for Women with 

Disabilities (BHAWD) 

Berkeley, CA 94704 

510–204–4522 

Cate McClain, M.D. 

Director, Center for Development and 

Disability 

Health Sciences Center 

University of New Mexico 

2300 Menaul Blvd. NE. 

Albuquerque, NM 87107 

505–272–3000 

Margaret Nosek, Ph.D. 

Executive Director 

Center on Research on Women with 

Disabilities (CROWD) 

Department of Physical Medicine and 

Rehabilitation 

Baylor Medical College 

3440 Richmond, Suite B 

Houston, TX 77046 

1–800–442–7693 

Robert Pollard, M.D.

Director, Deaf Wellness Center 

University of Rochester Medical Center 

300 Crittenden Blvd. 

Rochester, NY 14642 

585–275–3544 

Judith Panko Reis 

Director, Women with Disabilities Center (WWDC) 

Rehabilitation Institute of Chicago 

345 E. Superior St. 

Chicago, IL 60611 

1–800–883–3931 

Dr. Eleanor Rosenfield 

Associate Dean, Student & Academic 

Services 

National Technical Institute for the Deaf 

Rochester Institute of Technology 

52 Lomb Memorial Dr. 

Rochester, NY 14623 

TTY/VP: 585–475–6202 

Judy Struck, Executive Director 

Center for Disabilities 

South Dakota Rosebud Developmental 

Clinic 

Sanford School of Medicine 

University of South Dakota 

Vermillion, SD 57069 

605–357–1468 

Kris Vertiz 

Director 

Deaf Access Program 

Schwab Rehabilitation Hospital 

1401 S. California Blvd. 

Chicago, IL 60608 

773–522–5869 
334
335

APPENDIX B. NCD Health Care Summit Participant 

List, April 2008 

1. James A. Bostrom 

Deputy Chief, Disability Rights Section 

Civil Rights Division 

U.S. Department of Justice 

950 Pennsylvania Ave., NW. 

Washington, DC 20530 

Jim.bostrom@usdoj.gov

2. L. Irene Bowen 

Deputy Chief 

Disability Rights Section 

U.S. Department of Justice 

9 Montvale Ct. 

Silver Springs, MD 20904 

l.irene.bowen@usdoj.gov 

3. Rebecca Brashler, L.C.S.W. 

Clinical Educator, The Donnelley Family 

Disability Ethics Program 

Director of Inpatient Care Management 

and Family Support 

The Rehabilitation Institute of Chicago 

345 East Superior St., Room 1378 

Chicago, IL 60611 

rbrashler@ric.org

4. Mary Lou Breslin 

Senior Policy Advisor 

Disability Rights Education and Defense 

Fund (DREDF) 

2212 Sixth St. 

Berkeley, CA 94710 

www.dredf.org

5. Victoria Ray Carlson 

Council Member, National Council on 

Disability 

Naperville, IL 60564 

Victoria79@wowway.com

6. John H. Catlin, FAIA 

Partner, LCM Architects 

819 South Wabash Ave., Suite 509 

Chicago, IL 60605 

jcatlin@lcmarchitects.com

7. Carmen A. Cicchetti, M.Ed., M.A. 

Business Support Manager 

The Donnelley Family Disability Ethics 

Program 

The Rehabilitation Institute of Chicago 

345 East Superior St., Room 1374 

Chicago, IL 60611 

ccicchetti@ric.org

8. Raymond H. Curry, M.D. 

Dean of Education 

Northwestern University Feinberg 

School of Medicine 

303 East Chicago Ave., Ward 4–161 

Chicago, IL 60611–3008 

rcurry@northwestern.edu 

9. Kaylan M. Dunlap 

Evan Terry Associates, P.C. 

1 Perimeter Park South, Suite 200S 

Birmingham, AL 35243 

kdunlap@evanterry.com

10. Julia Epstein, Ph.D. 

Director, Development and 

Communications 

Disability Rights Education and Defense 

Fund 

2212 Sixth St. 

Berkeley, CA 94710 

jepstein@dredf.org 
11. Rick Erdtmann, M.D., M.P.H. 

Director, Board on Military and Veterans 

Health & the Medical Follow-up 

Agency 

Institute of Medicine, National 

Academies 

500 Fifth St., NW. 

Washington, DC 20001 

rerdtmann@nas.edu

12. Amy Freeland 

Consultant, American Foundation for the 

Blind 

Portage, MI 49024 

Amy.L.Freeland@wmich.edu 

13. Margaret Giannini, M.D., F.A.A.P. 

Director 

Health and Human Services Office on 

Disability 

200 Independence Avenue, SW 

Suite 637D 

Washington, DC 20201 

Lee.watson@hhs.gov 

14. Janice Ford Griffin 

National Program Director 

Community Health Leaders 

Robert Wood Johnson Foundation 

P.O. Box 2316 

Route 1 and College Rd. East 

Princeton, NJ 08543 

jgriffin@rwjf.org

15. Susan Henderson 

Executive Director 

Disability Rights Education and Defense 

Fund 

2212 Sixth St. 

Berkeley, CA 94710 

shenderson@dredf.org

16. Rosemary B. Hughes, Ph.D. 

Senior Research Scientist 

Rural Institute—Corbin 52 

The University of Montana 

Missoula, MT 59802 

rhughes@ruralinstitute.umt.edu

17. Lisa I. Iezzoni, M.D., M.Sc. 

Professor of Medicine 

Harvard Medical School 

Associate Director 

Institute for Health Policy 

Massachusetts General Hospital 

50 Staniford St., Room 901B 

Boston, MA 02114 

liezzoni@partners.org

18. June Isaacson Kailes, M.S.W., L.C.S.W. 

Associate Director and Adjunct 

Associate Professor 

Center for Disability Issues and the 

Health Professions 

Western University of Health Sciences 

309 E. Second St. 

Pomona, CA 91766 

jik@pacbell.net 

19. Kristi L. Kirschner, M.D.

Coleman Foundation Chair in 

Rehabilitation Medicine 

Director 

The Donnelley Family Disability Ethics 

Program 

The Rehabilitation Institute of Chicago 

345 East Superior St., Room 1136 

Chicago, IL 60611 

kkirschner@ric.org 

20. Mitchell Loeb, M.Sc. 

Research Fellow 

Office of Analysis and Epidemiology 

National Center for Health Statistics 

3311 Toledo Rd. 

Hyattsville, MD 20782 

gze1@cdc.gov 

336
21. Nancy Mudrick, Ph.D. 

Professor 

School of Social Work 

College of Human Ecology 

Sims Hall, 4th Floor 

Syracuse University 

Syracuse, NY 13244–1230 

mudrick@syr.edu

22. Debjani Mukherjee, Ph.D. 

Associate Director 

The Donnelley Family Disability Ethics 

Program 

The Rehabilitation Institute of Chicago 

345 East Superior Street, Room 1376 

dmukherjee@ric.org

23. Judy Panko Reis, M.A., M.S.

Director 

Women with Disabilities Center 

The Rehabilitation Institute of Chicago 

345 East Superior St., Room 164 

Chicago, IL 60611 

jreis@ric.org 

24. Mark Richert, Esq. 

Director, Public Policy 

American Foundation for the Blind 

Public Policy Center 

1660 L Street, NW. 

Suite 513 

Washington, DC 20036 

blemoine@afb.net 

25. Teresa Savage, Ph.D., R.N. 

Consultant 

The Donnelley Family Disability Ethics 

Program 

The Rehabilitation Institute of Chicago 

345 East Superior St., Room 1374 

Chicago, IL 60611 

tsavage@ric.org

26. Harvey A. Schwartz, Ph.D., M.B.A. 

Senior Advisor, Priority Populations 

Agency for Healthcare Research and 

Quality 

540 Gaither Rd. 

Suite 2050 

Rockville, MD 20850 

Harvey.Schwartz@ahrq.hhs.gov

27. Paul M. Schyve, M.D. 

Senior Vice President 

The Joint Commission 

1 Renaissance Boulevard 

Oakbrook Terrace, IL 60181 

pschyve@jointcommission.org

jbradley@jointcommission.org

28. MaryMargaret Sharp-Pucci, Ph.D., 

M.P.H. 

Sharp Health Strategies, LLC 

1120 Crestview Dr. 

Batavia, IL 60510 

mmsp@sharpstrat.com

29. Carolyn Stern, M.D. 

CEO, DeafDOC.org 

Physician, Rochester School for the 

Deaf 

Physician, Gallaudet University 

58 Eastland Ave. 

Rochester, NY 14618 

deafdoc@aol.com

30. Sue Swenson 

Former Executive Director 

ARC of the United States 

Bethesda, MD 

sue.swenson@gmail.com

31. James L. E. Terry, AIA 

CEO, Evan Terry Associates, P.C. 

1 Perimeter Park South 

Suite 200S 

Birmingham, AL 35243 

jterry@evanterry.com

337
338

32. JoAnn M. Thierry 

Scientific Program Officer 

Centers for Disease Control and 

Prevention 

Coordinating Center for Health 

Promotion 

Extramural Research Program Office 

4770 Buford Highway NE. 

Mailstop K–92 

Atlanta, GA 30341 

jxt4@cdc.gov 

33. Cynthia Wainscott 

Council Member 

National Council on Disability 

Cartersville, GA 30121 

wainscott1@bellsouth.net 

34. Silvia Yee 

Staff Attorney 

Disability Rights Education and Defense 

Fund 

2212 Sixth St. 

Berkeley, CA 94710 

SYee@dredf.org

Biographical Sketches: NCD Health Care Summit Participants 

Jim Bostrom is a deputy section chief in the Disability Rights Section of the Civil Rights 

Division, U.S. Department of Justice. For more than 30 years Mr. Bostrom has focused 

on accessibility and accessible design, design and human factors research, design 

consulting, publication development, and technical assistance. 

Mr. Bostrom manages the ADA Design Unit and supervises a team of architects, code 

specialists, and other professional staff. This unit provides key technical expertise for 

the Section’s Americans with Disabilities Act (ADA) enforcement and technical 

assistance activities and works closely with attorneys, investigators, and information 

specialists as well as with businesses and state and local governments. Mr. Bostrom’s 

responsibilities also include managing the popular ADA Web site http://www.ada.gov,

developing technical assistance materials on accessible design and ADA requirements, 

and serving as senior technical resource to the Division. 

Irene Bowen is deputy chief of the Disability Rights Section, in the Civil Rights Division 

of the U.S. Department of Justice (DOJ), where she supervises litigation and 

investigations involving both private and public entities under the Americans with 

Disabilities Act. She has overseen cases in a variety of areas including physical access, 

higher education, health care, transportation, and effective communication. She 

spearheaded the Division’s litigation against Laurel Hospital, which established criteria 
for video relay services and other approaches to effective communication in hospitals; 

the settlement agreement with Washington Hospital Center, which addressed physical 

access to buildings as well as equipment such as exam tables; and settlement 

agreements with several clinics concerning access to equipment. Ms. Bowen was 

actively involved in the development of the Americans with Disabilities Act and was a 

member of the task force that developed DOJ’s regulations implementing the statute. As 

the Assistant Attorney General’s representative to the Architectural and Transportation 

Barriers Compliance Board, she was also a key member of the task force charged with 

developing the Board’s ADA Accessibility Guidelines. Ms. Bowen received her J.D. 

degree from George Washington University. While in law school, she cofounded the 

National Center for Law and the Deaf, a legal services and advocacy organization for 

persons with hearing impairments. 

Rebecca Brashler, L.C.S.W., is a clinical educator in the Donnelley Family Disability 

Ethics Program and the director of Inpatient Care Management and Family Support at 

The Rehabilitation Institute of Chicago. She received her undergraduate degree from 

the University of Michigan and her M.S.W. from the University of Maryland with a joint 

certificate in habilitation from the University of Maryland and Johns Hopkins Medical 

School/Kennedy Institute. Ms. Brashler is a clinical assistant professor at the Feinberg 

School of Medicine at Northwestern University with appointments in the Department of 

Physical Medicine and Rehabilitation and the Department of Medical Humanities and 

Bioethics. She is also an adjunct faculty member at the University of Chicago’s School 

of Social Service Administration.

Mary Lou Breslin has been a disability rights law and policy advocate for more than 35 

years. In 1979 she cofounded the Disability Rights Education and Defense Fund 

(DREDF), a leading national disability rights law and policy center, and presently serves 

as senior policy advisor with DREDF, directing the organization’s special projects. 

She has served as a policy consultant, trainer, and lecturer on disability and related civil 

rights topics. Ms. Breslin taught graduate and undergraduate courses at the University 

of San Francisco, McLaren School of Business, and the University of California at 

339
Berkeley. For 8 years she served as editor and researcher with the Disability Rights and 

Independent Living Project of the Regional Oral History Office of the Bancroft Library, 

UC Berkeley. She has written and published on various disability rights topics, most 

recently on health care and disability. In 2007 Ms. Breslin was honored for her work to 

improve health care access for people with disabilities by the Independent Living 

Resource Center, San Francisco, and the San Francisco Mayor’s Office on Disability. 

She received the prestigious Henry B. Betts award in 2002 for improving the lives of 

people with disabilities and the Paul A. Hearne Award from the Physical and Mental 

Disability Rights Committee of the American Bar Association in 2000. Ms. Breslin 

received her undergraduate degree from the University of Illinois and a graduate degree 

from the University of San Francisco. 

Victoria Ray Carlson is a member of the National Council on Disability. Ms. Carlson is 

a homemaker with three young girls. She was the executive director of the National 

Multiple Sclerosis Society, Iowa Chapter. She has worked at the U.S. Departments of 

Energy and Housing and Urban Development and for Senator Robert Dole in the 

Republican Leader’s Office. In addition, Ms. Carlson was the Iowa Organization 

Coordinator for Branstad for Governor and worked in the Iowa House of 

Representatives. Ms. Carlson was also a member of the Iowa Persons with Disabilities 

Commission. 

Jack Catlin is a partner at LCM Architects, Chicago. Mr. Catlin has over 20 years of 

personal and professional experience with disability-related issues. This expertise has 

led to his involvement in the development of accessibility codes and standards for city, 

state, and federal agencies; national and international speaking engagements on 

accessibility compliance issues; and the development of accessibility compliance plans 

and consultation for many private and public entities. A licensed architect and member 

of the American Institute of Architects, Mr. Catlin is the first practicing architect to serve 

as chair of the U.S. Architectural and Transportation Barriers Compliance Board 

(Access Board). Mr. Catlin’s numerous accessibility presentations include national and 

340
international venues. He has also provided training and accessibility consulting to 

various private and public entities. 

Carmen A. Cicchetti, M.Ed., M.A., is the business support manager for the Donnelley 

Family Disability Ethics Program at the Rehabilitation Institute of Chicago. Previously, 

he was the director of research for the Office of the Commissioner of Probation in 

Boston, Massachusetts. Under his leadership, the department became nationally 

recognized for its innovation in criminal justice research. It was among the first in the 

nation to develop a valid and reliable risk/needs assessment tool providing objective 

data on over 260,000 individuals under supervision, an assessment of their relative risk, 

and an identification of their specific criminogenic needs, which translated into targeted 

program development. It was the first to systematically develop a wide spectrum of 

databases, which provided a rich source for numerous studies, influenced significant 

evidence-based public policy and legislation, led to innovative supervision techniques, 

and resulted in the first-in-the-nation scientifically valid court staffing formula. Mr. 

Cicchetti received his undergraduate degree in classics from Loyola University, 

Chicago, an M.Ed. in counseling from Xavier University in Cincinnati, an M.Div. from the 

Jesuit School of Theology, Chicago, and an M.A. in community social psychology from 

Boston College. 

Raymond H. Curry, M.D., F.A.C.P., is Dean for Education and Professor of Medicine 

and Medical Education at Northwestern University Feinberg School of Medicine. Dr. 

Curry oversees all aspects of undergraduate, graduate, and continuing medical 

education at Northwestern. In directing graduate medical education throughout the 

Northwestern system he also serves as president of the McGaw Medical Center of 

Northwestern University. 

A native of Lexington, Kentucky, he is a graduate of the University of Kentucky and of 

the Washington University School of Medicine in St. Louis. He completed residency 

training in internal medicine at Northwestern McGaw. A general internist, Dr. Curry is 

board certified in internal medicine and is currently included in Woodward and White’s 

“Best Doctors in America.” 

341
Kaylan Dunlap has served as accessibility specialist specializing in health care with 

Evan Terry Associates, P.C. for the past 5 years. She is a licensed physical therapist 

assistant with over 9 years of health care experience in the outpatient rehabilitation and 

acute care settings, where she was involved with patient care and program 

development for breast cancer patients and student athletes. Her primary 

responsibilities with ETA include surveying facilities to identify barriers, preparing 

reports, quality assurance, project coordination, surveyor training, survey form 

development, and seminars for organizations such as Kaiser Permanente, Sears/Kmart, 

Pacific Gas & Electric, J. Paul Getty Museums, and others. Kaylan has developed a 

special interest in access to health care through her experience as a practitioner as well 

as her experience with Kaiser Permanente’s California facilities. 

Julia Epstein is director of communications and development for DREDF and the 

parent of a child with a disability. Prior to her work with the disability community, Ms. 

Epstein was a technical writer and editor at PeopleSoft and at Gene Logic. She 

received a Diplôme Supérieure d’Études Françaises from the Université de Strasbourg, 

France, in 1972, a B.A. summa cum laude from Washington University in St. Louis in 

1973, and M.A. (1976) and Ph.D. (1977) degrees in comparative literature from Cornell 

University. She has been on the faculties of the College of William and Mary, Drexel 

University, and Haverford College. At Haverford, where she taught beginning in 1986, 

she was Barbara Riley Levin Professor of Comparative Literature from 1992 to 1997. 

Ms. Epstein is the author of “The Iron Pen: Frances Burney and the Politics of Women’s 

Writing” (University of Wisconsin Press, 1989) and “Altered Conditions: Disease, 

Medicine, and Storytelling” (Routledge, 1995). She is also the coeditor of “Body Guards: 

The Cultural Politics of Gender Ambiguity” (Routledge, 1991) and “Shaping Losses: 

Cultural Memory and the Holocaust” (University of Illinois Press, 2001). She has also 

published several dozen articles on 18th-century literature, legal and medical 

humanities, and cultural studies. 

Frederick (Rick) Erdtmann, M.D., is a graduate of Bucknell University where he 

received a bachelor of science degree in biology. He attended medical school in 

342
Philadelphia ,where he earned his doctor of medicine degree from Temple University 

School of Medicine. After completing his internship at the Allentown General Hospital in 

Allentown, Pennsylvania, he was drafted into the Army and served at Fitzsimons Army 

Medical Center. He elected to remain on active duty and completed a residency 

program in General Preventive Medicine at Walter Reed Army Institute of Research in 

1975. He is board certified in that medical specialty. 

Dr. Erdtmann has had a variety of assignments with the Army Medical Department, 

including assignments as Chief of the Preventive Medicine Services at Fitzsimons Army 

Medical Center, Frankfurt Army Medical Center in Germany, and Madigan Army 

Medical Center. He also served as division surgeon for the Second Infantry Director of 

the Medical Follow-up Agency and as Office of the Surgeon General, including 

assignments as chief of the Preventive Medicine Consultant’s Division and as director of 

Health Services. Dr. Erdtmann served as commander of Evans Army Community 

Hospital from 1995–1997 and as TRICARE lead agent for the Department of Defense 

Health Service Region 8 from 1996–1997. He later served as deputy chief of staff for 

clinical operations within DOD’s TRICARE Region 1, prior to assuming Hospital 

Command at Walter Reed Army Medical Center in March 1998. Following that he was 

assigned to the Office of the Surgeon General as the Deputy Assistant Surgeon 

General for Force Development. 

He holds a master’s degree in public health from the University of California at Berkeley 

and is a graduate of the Industrial College of the Armed Forces. Dr. Erdtmann’s special 

interests include deployment-related medical issues, tropical medicine, and the 

prevention of communicable diseases. In 2001, following 30 years of commissioned 

military service, Dr. Erdtmann joined the Institute of Medicine at the National Academies 

and now serves as director of the Board on Military and Veterans Health and director of 

the Medical Follow-up Agency. 

Amy L. Freeland, M.A., is a certified vision rehabilitation therapist and certified 

orientation and mobility specialist who is completing coursework for her Ph.D. 

in Interdisciplinary health sciences at Western Michigan University. Freeland is a fellow 

343
of the National Center for Leadership in Visual Impairment and participates in research, 

policy, and higher education activities both locally and nationally. Her doctoral studies 

have allowed her to study health policy economics at the Harvard School of Public 

Health, and research/program evaluation at Johns Hopkins University’s Bloomberg 

School of Public Health. She has also worked with Pennsylvania College of Optometry 

in Philadelphia, PA, in the development of a master of pubic health degree program for 

blindness clinicians and is currently working as a consultant to the American Foundation 

for the Blind Public Policy Center in Washington, DC, as a research and policy analyst. 

Her interests include public health policy; program and training assessments and 

outcomes; and research to support vision rehabilitation as an integral part of 

environmental access and healthy living. 

Honorable Margaret J. Giannini, M.D., F.A.A.P. was appointed October 1, 2002, as 

Director of the U.S. Department of Health and Human Service’s (HHS) Office on 

Disability by Secretary Tommy G. Thompson. She serves as advisor to the Secretary on 

HHS activities relating to disabilities. Prior to becoming Director of the Office on 

Disability, Dr. Giannini was appointed by President George W. Bush as the Principal 

Deputy Assistant Secretary for Aging at the HHS. From 1981to1992, Dr. Giannini was 

Deputy Assistant Chief Medical Director for Rehabilitation and Prosthetics at the 

Department of Veterans Affairs, Washington, DC. There her work focused on 

technology transfer and assistive technology involving all disabilities. In 1979, President 

Jimmy Carter appointed Dr. Giannini as the first Director of the National Institute of 

Handicapped Research, and she was confirmed by the Senate in January of 1980. In 

1950, Dr. Giannini created the largest facility for people who have mental retardation 

and development disability in the United States and the world, which became the first 

University Center of Excellence on Developmental Disabilities. 

Dr. Giannini is the recipient of many national and international awards from various 

organizations in recognition of her professional and humanitarian services and 

achievements. Among these, she was saluted by the Association for Pediatric 

Research; selected “Woman of the Year” for Achievement in Medicine and “Woman344
Doer” by President and Mrs. Lyndon B. Johnson; presented the First Honorary Degree 

by Mercy College Doctor of Humane Letters; Seton Award from Seton Hall College, 

Pittsburgh, PA; the First Presidential Award for Design Excellence from President 

Reagan; President Reagan’s Distinguished Service Award, Committee on Employment 

of the Handicapped; was honored by the naming of the “Hon. Margaret J. Giannini, M.D. 

Physical Rehabilitation Pavilion” in 1997 at Westchester Special School, NY, and the 

First International Leadership Scholars Award by the University of Maryland, Baltimore, 

in recognition of her work in “International Programs in Rehabilitation and Disability.” Dr. 

Giannini has served on numerous national and international boards and chaired more 

than 61 international conferences on rehabilitation and developmental disabilities in 

many countries, including Israel, Italy, Spain, China, Russia, Argentina, India, and 

Egypt. She has published extensively and lectured nationally and internationally. Dr. 

Giannini is also a member of the Institute of Medicine of the National Academy of 

Sciences and fellow of the American Academy of Pediatrics, and is on the Editorial 

Board of the American Association on Health and Disability (AAHD) “Disability and 

Health Journal.” In February 2007, Dr. Giannini received the American Medical 

Association’s highest award for a public official when she was named “Outstanding 

Member of the Federal Executive Branch by Presidential Appointment.” 

Janice Ford Griffin is the national director of the Robert Wood Johnson Foundation 

(RWJF) Community Health Leaders (CHL). In this capacity she works to provide 

recognition for the contributions community health leaders make toward achieving 

RWJF’s mission and goals, and to enhance their capacity to have more permanent and 

widespread impact on health problems. CHL conducts a competitive nomination and 

selection process to identify 10 leaders each year. In addition to enhanced recognition 

and other support, each leader receives a financial award of $125,000 to acknowledge 

their personal accomplishment and to further his/her work. Prior to coming to RWJF, 

Ms. Griffin was the director of The Compass Project, LLC, a consulting practice that 

provided technical assistance to a range of clients in the public and private sectors. 

From 1993 to 2005 Ms. Griffin served as the deputy director of Join Together at Boston 

University SPH, a national RWJF ad hoc program that is a national resource for 

345
communities working to address substance abuse prevention and treatment. Ms. Griffin 

also served as the director of drug policy for the City of Houston for Mayor Kathy 

Whitmire and Mayor Bob Lanier. Ms. Griffin received a B.A. in economics from Fisk 

University in Nashville, TN. 

Susan Henderson is the executive director of the Disability Rights Education and 

Defense Fund, Inc. (DREDF), a leading national law and policy center dedicated to 

protecting and furthering the civil rights of people with disabilities. Ms. Henderson has 

served with DREDF since1997. Prior to joining DREDF, she was the administrative 

director at Adams & Broadwell, a public interest law firm specializing in environmental 

law. For the past 20 years Ms. Henderson has specialized in law firm management and 

finance. 

Ms. Henderson is a member of the Ed Roberts Campus Board, a coalition of seven 

organizations that came together to develop a universally designed, transit-oriented 

center to be the home of organizations dedicated to furthering the independent living 

and disability civil rights movement in the San Francisco Bay Area. She is the president 

of the board of directors of Community Resources for Science and is the cochair of the 

Berkeley High School Development Group. Ms. Henderson received her undergraduate 

degree in anthropology from the University of California at Davis and an MBA degree 

from California State University, Hayward. 

Rosemary B. Hughes, Ph.D., is senior research scientist at the Rural Institute on 

Disabilities, research associate professor in the Department of Psychology, and faculty 

affiliate in the Department of Public and Community Health at The University of 

Montana (UM) in Missoula. She holds a Ph.D. in counseling psychology from the 

University of Houston. Dr. Hughes is a licensed psychologist with clinical, teaching, and 

research experience in the field of disability. She has served as principal 

investigator/co-investigator on more than 15 federally funded research projects 

addressing the health and well-being of people with disabilities. Dr. Hughes is highly 

published and has presented nationally and internationally on issues of people with 

disabilities. 

346
Lisa I. Iezzoni, M.D., M.Sc., is professor of medicine at Harvard Medical School and 

associate director of the Institute for Health Policy (IHP), Massachusetts General 

Hospital. She received her degrees in medicine and health policy and management 

from Harvard University and spent 16 years in the Division of General Medicine and 

Primary Care at Boston’s Beth Israel Deaconess Medical Center before joining the IHP 

in 2006. Dr. Iezzoni has conducted numerous studies for the Agency for Healthcare 

Research and Quality, the National Institutes of Health, the Centers for Medicare & 

Medicaid Services, and private foundations on a variety of topics, including evaluating 

methods for predicting costs, clinical outcomes, and substandard quality of care. She 

has published and spoken widely on risk adjustment and has edited Risk Adjustment for 

Measuring Health Care Outcomes, now in its third edition (2003). With a 1996 

Investigator Award in Health Policy Research from The Robert Wood Johnson 

Foundation, Dr. Iezzoni began studying health care quality and health policy issues 

relating to persons with disabilities. Her book “When Walking Fails” was published in 

2003, and “More Than Ramps: A Guide to Improving Health Care Quality and Access 

for People with Disabilities,” coauthored with Bonnie L. O’Day, appeared in 2006. Dr. 

Iezzoni serves on the editorial boards of major medical and health services research 

journals and in 2008 was appointed to the U.S. Department of Health and Human 

Services Secretary’s Advisory Committee on Health Promotion and Disease Prevention 

Objectives for 2020. She is a member of the Institute of Medicine of the National 

Academy of Sciences. 

June Isaacson Kailes, M.S.W., L.C.S.W., is associate director and adjunct associate 

professor of the Center for Disability Issues in the Health Professions, Western 

University of Health Sciences, Pomona, CA, where she teaches, supervises 

development of research tools, and designs implementation of research projects and 

reports. Recognized nationally and internationally, Ms. Kailes is one of the original 

leaders in the national Independent Living Movement. She consults, writes, and trains 

on Americans with Disabilities Act (ADA) implementation, advocacy training and skills 

building, developing and analyzing disability-related public policy, planning barrier free 

meetings, disability diversity training, reaching the disability market, customer service 

347
and product design, accessible telecommunication, disaster preparedness for people 

with disabilities, and incorporating universal design and usability principles into existing 

and new environments. 

Ms. Kailes also works as a trainer, writer, researcher, and policy analyst for projects, 

including the Rehabilitation Research and Training Centers on Aging with a Disability, 

Managed Care and Disability, Health and Wellness and Disability, and National Center 

of Physical Activity and Disability. Her extensive writings and publications include 

“Emergency Evacuation Preparedness: Taking Responsibility For Your Safety,” “A 

Guide For People with Disabilities and Other Activity Limitations,” “Living and Lasting on 

Shaky Ground: An Earthquake Preparedness Guide for People with Disabilities” 

(distributed by California Office of Emergency and Safety), “Be a Savvy Health Care 

Consumer—Your Life May Depend on It!” “Health, Wellness, and Aging with Disability,” 

“A Guide to Planning Accessible Meetings,” and “Creating a Disaster-Resistant 

Infrastructure for People at Risk Including People with Disabilities.” She has also 

delivered hundreds of keynote addresses, workshops, and seminars. For the last 7 

years Ms. Kailes has held a presidential appointment to the United States Access 

Board. Ms. Kailes earned an M.S.W. from the University of Southern California, Los 

Angeles, and a B.A. in Psychology from Hofstra University, Hempstead, NY. 

Kristi L. Kirschner, M.D., is an attending physician at the Rehabilitation Institute of 

Chicago (RIC), and associate professor of Physical Medicine and Rehabilitation, and of 

Medical Humanities and Bioethics at the Northwestern University Feinberg School of 

Medicine. She is also the medical director for the RIC Women with Disabilities Center 

(formally the Health Resource Center for Women with Disabilities) and the director of 

the Donnelley Family Disability Ethics Program. Dr. Kirschner is a graduate of Carleton 

College and of the University of Chicago Pritzker School of Medicine. She completed 

her residency in physical medicine and rehabilitation at the Rehabilitation Institute of 

Chicago/Northwestern McGaw Center for Graduate Medical Education in 1990. She 

also completed a fellowship in clinical medical ethics at the MacLean Center for Clinical 

Medical Ethics at the University of Chicago in 1995. She was named RIC’s Coleman 

348
Chair of Rehabilitation Medicine in February of 1996. This chair supports her work in 

women’s health and disability, as well as in disability ethics. 

Mitchell Loeb, M.Sc., is a research fellow in the Office of Analysis and Epidemiology at 

the National Center for Health Statistics (NCHS), Centers for Disease Control and 

Prevention. His research experience includes work in Canada, Norway, and several 

developing countries in sub-Saharan Africa and Southeast Asia. Prior to arriving at 

NCHS last fall, he spent 20 years in Norway working at SINTEF, an independent 

research foundation. While at SINTEF he assisted in carrying out a series of surveys of 

living conditions among people with disabilities in the southern African region (South 

Africa, Namibia, Zimbabwe, Malawi, Zambia, and Mozambique). He has also acted as 

disability data consultant for the Medical Committee Netherlands Vietnam (MCNV) in 

2006, where he facilitated workshops intended to formalize a common understanding of 

disability and harmonize the collection and management of disability data in Vietnam. In 

2005 he consulted for the World Bank in Indonesia to supervise disability data 

collections in support of the Indonesia Poverty Analysis Program. He is currently 

involved with the Washington Group on Disability Statistics, whose Secretariat is 

located at NCHS, and the analysis of disability data from a variety of U.S. surveys and 

linked databases. 

Nancy R. Mudrick, Ph.D., M.S.W., is professor in the School of Social Work, College of 

Human Ecology at Syracuse University. Her Ph.D. is in social policy from the Florence 

Heller School for Advanced Studies in Social Welfare, Brandeis University. Dr. Mudrick 

teaches courses in U.S. social welfare policy, workplace policy, mental health policy, 

research methodology, and program evaluation. Her research focuses on disability 

policy in the areas of employment, civil rights, and health. Over the past decade, she 

has worked with the Disability Rights Education and Defense Fund (DREDF) on several 

projects, among them an evaluation of federal agency enforcement of disability civil 

rights laws for the National Council on Disability. She is currently working with DREDF 

on the NCD-funded project on the current state of health care for Americans with 

disabilities. Dr. Mudrick has published on disability issues, discrimination and civil rights, 

349
and childhood disability. In addition to her work on disability topics, she has directed 

federally funded child welfare training grants and evaluated demonstration projects of 

child welfare services. Dr. Mudrick served on the board of directors of the Society for 

Disability Studies, is a longstanding member of the American Public Health Association 

Disability Section, and a member of several social work professional organizations. She 

serves on the editorial board of several journals, some focused on disability and others 

on social work. 

Debjani Mukherjee, Ph.D., is the associate director of the Donnelley Family Disability 

Ethics Program at the Rehabilitation Institute of Chicago and an assistant professor of 

Physical Medicine and Rehabilitation and of Medical Humanities and Bioethics at 

Northwestern University Feinberg School of Medicine. She received her bachelor’s 

degree from Cornell University, and her master’s and doctorate in Clinical/Community 

Psychology from the University of Illinois at Urbana-Champaign. Dr. Mukherjee 

completed 2 years of postdoctoral fellowship training in Clinical Medical Ethics at the 

University of Chicago and after her fellowship, she was invited to spend a year in Paris 

to help start the first center for Clinical Ethics in France, the Centre D’Ethique Clinique 

at Cochin teaching hospital. For the 2006-2007 academic year, she was a Fulbright 

Senior Research Scholar affiliated with Calcutta University’s Department of Applied 

Psychology in Kolkata, India. Her research interests include psychosocial adjustment to 

traumatic brain injury and the cultural contexts of medical decisions and ethical 

dilemmas posed by neurological impairments. 

Judy Panko Reis, M.A., M.S., became head-injured due to a random violent attack 

while camping in Hawaii. Since then, Ms. Panko Reis has become a wife, mother, and 

the cofounder and director of the Rehabilitation Institute of Chicago’s Women with 

Disabilities Center (WWDC), the first comprehensive health center in the country run by 

and for women with disabilities. In 1993, Ms. Panko Reis received $100,000 as a Robert 

Wood Johnson Foundation Community Health Leadership awardee in recognition of her 

education and advocacy work on behalf of disabled women’s health issues. She is also 

editor of “Resourceful Woman,” an award-winning newsletter written by, for, and about 

350
women and girls with disabilities. She has published several articles and book chapters 

on disabled women’s issues, including articles on women and traumatic brain injury, as 

well as sexuality and women with disabilities. She also coauthored “It Takes More than 

Ramps To Solve the Crisis in Healthcare for People with Disabilities,” a report detailing 

the challenges people with disabilities face in their efforts to access disability-competent 

health services. 

Throughout the past 15 years, Ms. Panko Reis has spoken to local and national 

audiences about disability, violence, and health care issues. She is a trained domestic 

violence services advocate and has written articles on the subject and conducted 

trainings on disability and domestic violence for policymakers and service providers. Ms. 

Panko Reis earned a B.A. in philosophy from the State University of New York in 

Geneseo, an M.A. in philosophy from the University of Chicago, and an M.S. in 

managerial communication from Northwestern University. 

Mark Richert, Esq., is an attorney with more than 13 years of public policy and 

governmental relations experience in the vision loss and disability policy field. Mr. 

Richert serves as the director of the American Foundation of the Blind’s (AFB) Public 

Policy Center, located in Washington, DC, overseeing the Center’s management and 

the implementation of AFB’s public policy and policy research agendas. In addition, he 

is AFB’s primary representative to the U.S. Congress and to federal agencies with 

responsibility for programs, services, and enforcement of rights of interest to individuals 

with vision loss. Mr. Richert also plays a key leadership role in the wider disability policy 

community, serving as a cochair of the Civil Rights and Technology/ 

Telecommunications Task Forces of the 100-plus organizational-member Consortium 

for Citizens with Disabilities (CCD). He is also a member of the steering committee of 

the 70-member Independence Through Enhancement of Medicare and Medicaid (ITEM) 

coalition, an alliance of organizations advocating appropriate coverage for durable 

medical equipment and related assistive technologies. Prior to joining AFB in July 2005, 

Mr. Richert served for nearly 4 years as the executive director of the Association for 

Education and Rehabilitation of the Blind and Visually Impaired, the professional 

351
association in the field of vision loss. He has previously served with AFB in the capacity 

of Governmental Relations Representative, with the American Council of the Blind as 

ACB’s director of Advocacy Services, and in the legislative affairs arena with National 

Industries for the Blind. Mr. Richert earned his B.A. in both philosophy and political 

science from Stetson University, DeLand, FL, and his J.D. from the George Washington 

University National Law Center. He has been a member of the Florida Bar since 1993. 

Teresa Savage, Ph.D., R.N., is a consultant to and former associate director of the 

Donnelley Family Disability Ethics Program at the Rehabilitation Institute of Chicago. 

She is also an ethics consultant on the Ethics Consultation Service at RIC. She has 

worked as a staff nurse in neonatal intensive care at three different medical centers, has 

been a clinical nurse specialist in pediatric neurology, and has worked for various 

agencies serving adults and children with disabilities. She was a member of the 

landmark committee, the Illinois State’s Attorney’s Task Force on Removal of Lifesustaining Treatment. She also has served on pediatric ethics committees and 

Institutional Review Boards at the University of Illinois at Chicago (UIC). She was an 

ethics consultant at Rush-Presbyterian-St. Luke’s Medical Center and Misericordia 

Homes. She earned her Ph.D. in nursing sciences from the University of Illinois at 

Chicago College of Nursing and completed a 3-year postdoctoral fellowship in primary 

health care/social ethics through the World Health Organization’s Global Health 

Leadership Office at the UIC College of Nursing. She is a research assistant professor 

at UIC College of Nursing and is currently co-investigator on a National Institute of 

Nursing Research-funded study entitled “Life Support Decisions for Extremely 

Premature Infants.” She has conducted studies on informed consent in people with 

intellectual disabilities and factors affecting parental decision-making regarding lifesustaining treatment for children with severe and profound disabilities. She is also 

conducting an oral history of the field of nursing ethics. In March, 2006, her book, coauthored with Marcia D. Bosek, “The Ethical Component of Nursing Education: 

Integrating Ethics into Clinical Experience,” was published by Lippincott, Williams, & 

Wilkins. 

352
Harvey A. Schwartz, Ph.D., M.B.A., is senior advisor for priority populations, Agency 

for Healthcare Research and Quality (AHRQ). He works with other agency senior 

advisors to disseminate accomplishments of funded agency projects emphasizing 

priority populations, collaborates with intramural researchers on projects focused on 

priority populations, serves as a grant reviewer for the AHRQ Small Grant Program for 

Conference Support, enhances communications and coordination across the Agency in 

the area of disabilities activities, and conducts outreach efforts to enhance the success 

of minority and minority-serving institutions in conducting research on health care 

disparities. Prior to his service as senior advisor for priority populations, Dr. Schwartz 

has had a career contributing in various positions at AHRQ, including serving as the 

agency evaluation officer and deputy director of the past Center for Information 

Technology. He earned his doctor of philosophy in economics, a master’s degree in 

business administration, and a master’s degree in statistics from Columbia University. 

Paul M. Schyve, M.D., is the senior vice president of The Joint Commission. From 

1989 until 1993, Dr. Schyve was vice president for research and standards, and from 

1986 until 1989, he was the director of standards at The Joint Commission. Prior to 

joining The Joint Commission, Dr. Schyve was the clinical director of the State of Illinois 

Department of Mental Health and Developmental Disabilities. Dr. Schyve received his 

undergraduate degree from the University of Rochester, where he was elected to Phi 

Beta Kappa. He completed his medical education and residency in psychiatry at the 

University of Rochester, and has subsequently held a variety of professional and 

academic appointments in the areas of mental health and hospital administration, 

including director of the Illinois State Psychiatric Institute and Clinical Associate 

Professor of Psychiatry at the University of Chicago. Dr. Schyve is certified in psychiatry 

by the American Board of Psychiatry and Neurology and is a Distinguished Life Fellow 

of the American Psychiatric Association. He is a member of the board of directors of the 

National Alliance for Health Information Technology, a founding advisor of Consumers 

Advancing Patient Safety, the chair of the Ethical Force Oversight Body of the Institute 

of Ethics at the American Medical Association, and a former trustee of the United States 

Pharmacopeial Convention. He has served on numerous advisory panels for the 

353
Centers for Medicare & Medicaid Services, the Agency for Healthcare Research and 

Quality, and the Institute of Medicine. Dr. Schyve has published in the areas of 

psychiatric treatment and research, psychopharmacology, quality assurance, 

continuous quality improvement, health care accreditation, patient safety, and health 

care ethics. 

MaryMargaret Sharp-Pucci, Ph.D., M.P.H., is the managing member of Sharp Health 

Strategies LLC, which provides a line of clinical research and analytic services to the 

health care industry. Dr. Sharp-Pucci is an epidemiologist and senior health care 

analyst with over 25 years of health care experience. Dr. Sharp-Pucci established and 

served as executive director of the Center on Clinical Effectiveness at Loyola University 

Medical Center (LUMC) in Maywood, IL. In this role, she directed the outcomes 

research program and benchmarking strategy that supported clinical quality 

improvement. Also at LUMC, she served as associate director of the Burn & Shock 

Trauma Institute, where she conducted research in rehabilitation outcomes and health 

services utilization. Dr. Sharp-Pucci is also the former associate director of the 

Technology Evaluation Center at Blue Cross Blue Shield Association. Her work focused 

on trauma, wound healing and rehabilitation, and the development of research initiatives 

in disease management. 

She is currently on the faculty of the Niehoff School of Nursing at Loyola University 

Chicago. Her academic background has included research and teaching affiliations with 

the Burn and Shock Trauma Institute at Loyola University Medical Center, the University 

of Virginia Medical College, and the Rehabilitation Institute of Chicago. She is a 

scientific peer reviewer for the Journal of Burn Care & Research and has served as a 

peer reviewer for a number of federal granting agencies, such as the National Institute 

of Disability and Rehabilitation Research, the Administration on Developmental 

Disabilities, and the Rehabilitation Services Administration. 

She is an appointee of President George W. Bush to the President’s Committee on 

People with Intellectual Disabilities. She also serves as an appointee of the Medicare 

Coverage Advisory Panel, and locally she is a member of the Central DuPage Hospital 

354
Institutional Review Board (IRB) in Winfield, IL, a board member for CNS Home Health 

and Hospice in Carol Stream, IL, a consultant with Home Care Physicians, and is the 

current president of the board of directors and chairs the Planning & Quality 

Improvement committee for the Anixter Center, one of the largest providers of 

rehabilitation and community integration services for people with disabilities in Illinois. 

Carolyn Stern, M.D., is a family physician. Deaf from birth, she received her medical 

degree from Northwestern University. Currently, she teaches medical interpreting to 

senior level interpreting students and is a physician at Student Health Services at 

Gallaudet University; a consultant physician at Rochester School for the Deaf; and CEO 

of www.deafdoc.org, a partnership developed to improve health literacy for the 

Deaf/Hard of Hearing community. DeafDOC.org provides health-related workshops for 

the Deaf/Hard of Hearing community and professional development for interpreters to 

improve their practice in the medical setting, and also consults with health care 

providers and systems to improve communication access and improve patientinterpreter-physician relationships. She also serves as a role model and consultant to 

Federal, state, and local organizations, including the National Board of Medical 

Examiners, The National Center for Deaf Health Research, State Associations of the 

Deaf, and the Rochester Institute of Technology/ National Technical Institute for the 

Deaf. 

Internationally, she testified before the Ministry of Health and Welfare in Japan, 

advocating for the rights of Japanese Deaf to become licensed health care 

professionals. She presented at the Tianjin University of Technology/Pen International: 

All-China Higher Education Conference on “Healthcare and the Deaf Postsecondary 

Student: Observations and Educational Impact.” Dr. Stern is actively involved in the 

Rochester, NY, Community Interpreter Grant Project, providing monthly workshops on 

human body systems. 

Sue Swenson, M.B.A., is the former executive director of The Arc of the United States, 

the oldest and largest advocacy and service organization for people with intellectual and 

developmental disabilities. Ms. Swenson has served as The Arc’s assistant executive 

355
director for Membership and Program Services; the executive director of the Joseph P. 

Kennedy Jr. Foundation; the commissioner of the U.S. Administration on Developmental 

Disabilities; and education specialist at the University of Minnesota Institute on 

Community Integration in Minneapolis. She has also served on the Minnesota 

Governor’s Council on Developmental Disabilities and national task forces for the State 

of Minnesota, Pew Center, and Robert Wood Johnson Foundation (both nationally and 

in Hennepin County). 

As a teacher and trainer on disability policy issues, Ms. Swenson has worked on 

strategies to form viable and productive partnerships between parents, organizations, 

professionals, and people with developmental disabilities, specifically in analyzing and 

developing public policy affecting people with developmental disabilities and in 

developing organizational strategies. Ms. Swenson is a graduate of the University of 

Chicago and the University of Minnesota. 

James L. E. Terry is CEO of Evan Terry Associates, P.C. (ETA), architecture and 

planning firm, where he oversees all ADA and access consulting services. He is a 

licensed architect in AL, AZ, CA, FL, MI, NC, and NY. Evan Terry has performed ADA 

surveys, architectural access plan reviews, training, and consulting services for all of 

Kaiser Permanente’s California facilities, and medical centers for Stanford University, 

UCLA, the University of Florida, Tenet Healthcare, HealthSouth, and others. He has 

also consulted with the U.S. Department of Justice, The U.S. Access Board (ATBCB), 

The Administrative Office of the U.S. Courts, and The U.S. Congressional Office of 

Compliance. He has served for 14 years as an instructor on ADA compliance and 

universal design in the Harvard Graduate School of Design’s Executive Education 

program, and has conducted over 150 seminars and lectures nationwide for corporate 

and public entities, disability rights groups, AIA national conventions, college and 

universities, professional organizations, and architectural firms. Mr. Terry serves on the 

board of directors of the National Association of ADA Coordinators, where he teaches 

its members how to apply the Title II and III requirements of the ADA. He has written or 

coauthored 10 books and software programs on ADA facilities compliance and universal 

356
design. He coauthored the book “Beautiful Universal Design” with Cynthia Leibrock, 

ASID, which has been used by many university programs as a textbook. Currently, he is 

working with NC State University’s Center for Universal Design to develop a free, Webbased training program for architects and design professionals: “Avoiding the 100 Most 

Common ADA Errors with Universal Design Solutions.” Also, under his direction, ETA 

has developed the most efficient and effective facility survey and access barrier removal 

management systems in use today. 

JoAnn M. Thierry, Ph.D., M.S., M.S.W., is a behavioral scientist with the National 

Center on Birth Defects and Developmental Disabilities at the Centers for Disease 

Control and Prevention (CDC). She is the scientific advisor for several state health 

departments and research projects focusing on health promotion and the prevention of 

secondary conditions. She is responsible for coordinating the health and wellness 

activities for women with disabilities within the CDC’s Disability and Health program. 

Dr. Thierry has been working with people with disabilities for 20 years. After earning her 

degree in psychology at the State University of New York at Oswego, she completed a 

master’s degree in counseling and psychological services at the same institution, as 

well as a master’s degree in social work at Syracuse University. She worked for the 

Onondaga County Health Department in Syracuse for 7 years, where she provided both 

direct and indirect social work services to persons with disabilities and initiated 

programs to prevent secondary conditions. Ms. Thierry obtained her Ph.D. in social 

work at the University of Georgia. She joined the CDC in 1991. Her research emphasis 

is on health promotion for women with disabilities. 

Cynthia Wainscott is a member of the National Council on Disability. Ms. Wainscott is 

the immediate past chair of Mental Health America, formerly known as the National 

Mental Health Association. She was acting president and CEO of Mental Health 

America in 2006. She served as a member of the Institute of Medicine committee that 

recently released “Improving the Quality of Health Care for Mental and Substance-Use 

Conditions,” and is a founding board member of the Campaign for America’s Mental 

Health. 

357
Silvia Yee is a staff attorney with the Disability Rights Education and Defense Fund 

(DREDF), a leading national disability rights law and policy center. She was DREDF’s 

first international law fellow and co-editor of “Disability Rights Law and Policy: 

International and National Perspectives,” published by Transnational Publishers in 

2002. She is active in DREDF’s domestic national litigation and policy areas, including 

health care reform for people with disabilities. She has worked in private commercial 

practice and with the Health Law Institute at the University of Alberta in Canada, where 

she published on the topics of Canadian Health Care Standards and the extent of the 

nursing profession’s legal authority. She received her LL.B. from the University of 

Alberta, and clerked with the Honorable Justice William Stevenson at the Alberta Court 

of Appeal. She is particularly interested in issues raised by the comparison of different 

models of equality and justice underlying disability anti-discrimination laws, and in the 

applicability to disability discrimination of historically evolving social-psychological 

theories of prejudice. Ms. Yee came to the United States to pursue graduate studies in 

musicology at the University of California, Berkeley, after receiving her B.Mus. and M.A. 

at the University of Alberta.

358
NCD Health Care Summit 

Represented Constituencies 

Constituency Number of Participants

Advocate/Content Expert— Architectural Access 3 

Advocate/Content Expert—Communicative & Sensory Access 4 

Advocate/Content Expert—Women’s Health Access 5 

Disability Rights Organization 6 

Federal Sector Policy Development 1 

Federal Sector Disability & Health Care Research 3 

Federal Sector Disability Rights Enforcement 2 

Funding Organization 1 

Graduate Medical Education & Clinical Training 5 

Health Care Accreditation Organization 1 

Health Care Provider 4 

Health Policy Development 4 

Health Services Research 4 

359
360
APPENDIX C. List of Methods Related to Data 

Collection Assessment and Matrix of 

Selected Studies and Datasets 

Data Availability Assessment 

Instrument Content Elements Considered 

● Whether people with disabilities could be identified from variables in the 

dataset, and the indicators used to identify disability 

● Whether the dataset made it possible to use the disability variable as a 

population characteristic (like race or gender), and whether the disability 

variable could be crossed with demographic and other health and health 

behavior variables 

● Whether the dataset included data about health behaviors and wellness-related 

activities, such as exercise, tobacco use, regular medical exams, preventive 

care such as mammograms, pap tests, prostate tests, or flu shots, and whether 

a medical provider talked to the patient about health risks from such problems 

as obesity or alcohol abuse 

● Whether the dataset included variables to indicate satisfaction with the health 

care provider or the health care delivery experience, on the basis of indicators 

of whether the provider was respectful, gave sufficient time, listened to the 

patient, provided information that the patient could understand 

● Whether the dataset included, in reasons for not getting care or postponing or 

delaying care, options to indicate that physical, programmatic, or 

communication access was present or not present 

● Whether the dataset asked if respondent had a usual source of care and health 

insurance coverage for care 

361
362

Sampling Frame Elements Considered 

● Population eligible for the sample, and the impact of stated exclusions on 

adequate representation of people with disabilities 

● Size of the sample, and the impact of size on the ability to study the 

circumstances of population subgroups, such as people who are deaf or people 

with disabilities, from racial or ethnic subgroups within the U.S. population 

Data Collection Methods Considered 

● Method of data collection (telephone, mail, the Web, or in-person interview) and 

the potential impact of the method on the response rate and inclusion of people 

with disabilities 

● Whether/how data are collected from people with cognitive disabilities or from 

those who may not be able to communicate via the method utilized with the 

survey’s other respondents 

● The time frame for data collection, for example, annually, quarterly, one time 

only 

● The process used to develop the survey instrument, including cognitive testing 

and field testing 

How Dataset Findings Are Reported or Made Available for Public Use 

● The types of regular reports issued by the sponsoring agency, with attention to 

whether disability variables are a part of regular reporting and whether they are 

used as population characteristics or outcome variables 

● The arrangements for other researchers to use the dataset for analysis beyond 

what the sponsoring agency regularly reports 
Table 1. 

Matrix of Selected Studies and Datasets Used To Assess Healthcare Access 

and Health Disparities of People with Disabilities 

Authors 

(full citations follow) MEPS NHIS** MCBS BRFSS CAHPS Other Survey Qualitative 

AHRQ (2008) 2004 Altman and Taylor (2001) 1996 DeJong et al. (2002) 1996 Liu et al. (2005) 1996 Newacheck and Kim (2005) 2000 Olin and Dougherty (2006) 1997–2002Parish and Savile (2006) 2000, 2002Rasch et al., Part I (2008) 

363 1996–1997

Rasch et al., Part II (2008) 1996–1997Shin and Moon (2008) 2002 Altman and Bernstein (2008) 2001–2005Schoenborn and Heyman (2008) 

2000–2006

Smith (2008) 2006 Iezzoni et al. (2007) 2001 Iezzoni et al. (2002) 1996 Iezzoni et al. (2004) 1996,1997Iezzoni et al. (2003) 1996 
364 

NHIS** MCBS BRFSS CAHPS Other Survey Qualitative 

Authors 

(full citations follow) MEPS 

Jha et al. (2002) 1998 Armour et al. (2007) 2004 Armour et al. (2008) 2004 Drum et al. (2008) 2004 Fouts et al. (2000) MO:1995–1997Jamoom et al. (2008) 2000, 2001 

(25 states) 

Kinne (2008) WA:2001, 2003Palsbo and Ho (2007) 2001–2004Cohen and CFILC (2006) CA health plans, 

n=10 

Corbin et al. (2005) Special 

Olympics Healthy Athletes Screening Data

Downs et al. (2004) Physicians, 

n=417 

Grabois et al. (1999) Mail survey of 

practitioners 

Hanson et al. (2003) Survey nonelderly, n=1505 Parish and Ellison-Martin (2007) 

NSAF 

1997,1999 
365 

NHIS** MCBS BRFSS CAHPS Other Survey Qualitative 

Authors 

(full citations follow) MEPS 

Parish and Huh (2006) NSAF 

1997,1999 

Drainoni et al. (2006) Focus groups 

in MA, n=87 

Neri and Kroll (2003) n=30, ms; cp, 

spinal cord 

Scheer et al. (2003) n=30, ms; cp, 

spinal cord 

Dataset names: MEPS = Medical Expenditure Panel Survey; NHIS = National Health Interview Survey; MCBS = Medicare Current Beneficiary Survey; BRFSS = Behavioral Risk Factor Surveillance System; CAHPS = Consumer Assessment of Healthcare Providers and Systems (with additions for adults with physical disabilities); NSAF = National Survey of American Families. **Note re: NHIS: Citations are to regular NHIS only. Papers using 1994 NHIS-D are not included because this is not a continuing source of new information. 
Table 1 Full Citations 

Agency for Healthcare Research and Quality (2008). National Healthcare Disparities 

Report 2007. AHRQ publication No. 08-0041. Rockville, MD: AHRQ, February. 

(MEPS 2004). 

Altman, B., and Bernstein, A. 2008. Disability and health in the United States, 2001–

2005. Hyattsville, MD: National Center for Health Statistics. (NHIS 2001–2005). 

Altman, B.M., and Taylor, A.K. 2001. Women in the health care system: Health status, 

insurance, and access to care. MEPS Research Findings No. 17, AHRQ Pub. 

No. 02-0004. Rockville, MD: Agency for Healthcare Research and Quality. 

(MEPS 1996). 

Armour, B.S., Campbell, V.A., Crews, J.E., Malarcher, A., Maurice, E., and Richard, 

R.A. 2007. State-level prevalence of cigarette smoking and treatment advice, by 

disability status, United States, 2004. Preventing Chronic Disease 4(4) (October): 

1–11, at http://www.cdc.gov/pcd/issues/2007/oct/06_0179.htm. (BRFSS 2004). 

Armour, B.S., Swanson, M., Waldman, H.B., and Perlman, S.P. 2008. A profile of statelevel differences in the oral health of people with and without disabilities, in the 

U.S., in 2004. Public Health Reports 123 (January–February):67–76. (BRFSS 

2004). 

Cohen, A., and California Foundation for Independent Living Centers. 2006. Executive 

summary: 2006 pilot survey of disability access services provided by California 

health plans, prepared for the California Office of the Patient Advocate, at 

http://www.cfilc.org/site/pp.aspx?c=ghKRI0PDIoE&b=1860909&printmode=1. 

(own survey of health plans). 

Corbin, S.B., Malina, K., and Shepherd, S. 2005. Special Olympics World Summer 

Games 2003—Healthy athletes screening data. Washington, DC: Special 

Olympics, February. (own survey). 

DeJong, G., Palsbo, S.W., Beatty, P.W., Jones, G.C., Kroll, T., and Neri, M.T. 2002. 

The organization and financing of health services for persons with disabilities. 

The Milbank Quarterly 80(2):261–301. (MEPS 1996). 

Downs, A., Wile, N., Krahn, G., and Turner, A. 2004. Wellness promotion in persons 

with disabilities: Physicians’ personal behaviors, attitudes, and practices. 

Rehabilitation Psychology 49(4): 303–8. (survey of physicians). 

Drainoni, Mari-Lynn, Lee-Hood, Elizabeth, Tobia, Carol, Bachman, Sara S., Andrew, 

Jennifer, and Maisels, Lisa. 2006. Cross-disability experiences of barriers to 

health-care access. Journal of Disability Policy Studies 17(2):101–15. 

(qualitative). 

366 
Drum, C.E., Horner-Johnson, W., and Krahn, G.L. 2008. Self-rated health and healthy 

days: Examining the “disability paradox.” Disability and Health Journal 1:71–8. 

(BRFSS 2004). 

Founts, B.S., Andersen, E., and Hagglund, K. 2000. Disability and satisfaction with 

access to health care. Journal of Epidemiology and Community Health 54:770–1. 

(BRFSS 1995, 97). 

Grabois, E.W., Nosek, M.A., and Rossi, D. 1999. Accessibility of primary care 

physicians’ offices for people with disabilities: An analysis of compliance with the 

Americans with Disabilities Act. Archives of Family Medicine 8 

(January/February):44–51. (qualitative). 

Hanson, K.W., Neuman, P., Dutwin, D., and Kasper, J.D. 2003. Uncovering the health 

challenges facing people with disabilities: The role of health insurance. Health 

Affairs, Web exclusive, 19 (November):W3-552–W3-565. (own survey). 

Iezzoni, L.I., Soukup, J.R., and Leveille, S.G. 2007. How do Medicare beneficiaries with 

physical and sensory disabilities feel about their health care? NBER working 

paper. Retrieved August 1, 2008, from 

http://www.nber.org/books_in_progress/disability/iezzoni-et-al7-18-07.pdf. 

(MCBS 2001). 

Iezzoni, L.I., Davis, R.B., Soukup, J., and O’Day, B. 2002. Satisfaction with quality and 

access to health care among people with disabling conditions., International 

Journal for Quality Health Care 14(5):369–81. (MCBS 1996). 

———. 2003. Quality dimensions that most concern people with physical and sensory 

disabilities. Archives of Internal Medicine 163 (September 22):2085–92. (MCBS, 

1996). 

———. 2004. Physical and sensory functioning over time and satisfaction with care: 

The implications of getting better or getting worse. Health Services Research

39(6) (December) Part I:1635–51. (MCBS, 1996, 1997). 

Jamoom, E.W., Andresen, E.M., Neugaard, B., and McKune, S.L. 2008. The effect of 

caregiving on preventive care for people with disabilities. Disability and Health 

Journal 1:51–7. (BRFSS 2000-2001, 25 states). 

Jha, A., Patrick, D.L., MacLehose, R.F., Doctor, J.N., and Chan, L. 2002. Dissatisfaction 

with medical services among Medicare beneficiaries with disabilities. Archives of 

Physical Medicine and Rehabilitation 83 (October):1335–41. (MCBS, 1998). 

Kinne, S. 2008. Distribution of secondary medical problems, impairments, and 

participation limitations among adults with disabilities and their relationship to 

health and other outcomes. Disability and Health Journal 1:42–50. (BRFSS 2001, 

2003 WA). 

367 
Liu, C.L., Zaslavsky, A.M., Ganz, M.L., Perrin, J., Gortmaker, S., and McCormick, M.C. 

2005. Continuity of health insurance coverage for children with special health 

care needs. Maternal and Child Health Journal 4 (December):363–75. (MEPS 

1996). 

Neri, M.T., and Kroll, T. 2003. Understanding the consequences of access barriers to 

health care: Experiences of adults with disability. Disability and Rehabilitation

25(2):85–96. (qualitative). 

Newacheck, P.W., and Kim, S.E. 2005. A national profile of health care utilization and 

expenditures for children with special health care needs. Archives of Pediatrics 

and Adolescent Medicine 159(1) (January):10–17. (MEPS 2000). 

Olin, G., and Dougherty, D.D. 2006. Characteristics and medical expenses of adults 18 

to 64 years old with functional limitations, combined years 1997–2002. Agency 

for Healthcare Research and Quality Work Paper No. 06002, March, at 

http://gold.ahrq.gov. (MEPS 1997-2002). 

Palsbo, S.E., and Ho, P-S. 2007. Consumer evaluation of a disability care coordination 

organization. Journal of Health Care for the Poor and Underserved 18:887–901. 

(CAHPS 2001–2004). 

Parish, S.L., and Ellison-Martin, M.J. 2007. Health-care access of women Medicaid 

recipients: Evidence of disability-based disparities. Journal of Disability Policy 

Studies 18(2) (Fall):109–16. (NSAF 1997, 1999). 

Parish, S.L., and Huh, J. 2006. Health care for women with disabilities: Populationbased evidence of disparities. Health and Social Work 31(1) (February):7–15. 

(NSAF1997, 1999). 

Parish, S.L., and Savile, A.W. 2006. Women with cognitive limitations living in the 

community: Evidence of disability-based disparities in health care. Mental 

Retardation 44(4) (August):249–59. (MEPS 2000, 2002). 

Premo, B., Carrothers, L., and Larson-McNeal M. 2002. Providing primary health care 

for people with physical disabilities: A survey of California physicians. Pomona, 

CA: Center for Disability Issues and the Health Professions, Western University 

Health Sciences, at http://www.cdihp.org/pdf/ProvPrimeCare.pdf. (own physician 

survey). [[not in the table]]

Ramirez, A., Farmer, G.C., Grant, D., and Papachristou, T. 2005. Disability and 

preventive screening: Results from the 2001 California Health Interview Survey. 

American Journal of Public Health 95(11):2057–64. (other survey). 

Rasch, E.K., Hochberg, M.C., Magder, L., Magaziner, J., and Altman, B.M. 2008. Health 

of community-dwelling adults with mobility limitations in the United States: 

Incidence of secondary health conditions. Part I. Archives of Physical Medicine 

and Rehabilitation 89(2) (February):210–18. (MEPS 1996-97). 

368 
Rasch, E.K., Magder, L., Hochberg, M.C., Magaziner, J., and Altman, B.M. 2008. Health 

of community-dwelling adults with mobility limitations in the United States: 

Incidence of secondary health conditions. Part II. Archives of Physical Medicine 

and Rehabilitation 89(2) (February):219–30. (MEPS 1996–97). 

Scheer, J., Kroll, T., Neri, M.T., and Beatty, P. 2003. Access barriers for persons with 

disabilities. Journal of Disability Policy Studies 13(4):221–30. (qualitative). 

Schoenborn, C.A., and Heyman, K. 2008. Health disparities among adults with hearing 

loss: United States, 2000–2006. NCHS Health E-Stats, CDC. Retrieved July 10, 

2008, from http://www.cdc.gov/nchs/products/pubs/pubd/hestats/hearing00-

06/hearing00-06.pdf. (NHIS 2000–2006). 

Shin, Jaeun, and Moon, Sangho. 2008. Quality of care and role of health insurance 

among non-elderly women with disabilities. Women’s Health Issues 18:238–48. 

(MEPS 2002). 

Smith, D.L. 2008. Disparities in health care access for women with disabilities in the 

United States from the 2006 National Health Interview Survey. Disability and 

Health Journal 1:79–88. (NHIS 2006). 

369 
370 
APPENDIX D. Key Federal Agency Definitions of 

Health Disparity

Health disparity is formally defined by several federal agencies. Two prominent 

definitions that also have influence on public funding streams come from the Minority 

Health and Health Disparities Research and Education Act of 2000 (P.L. 106-525) and 

from the definition used by the CDC for “Healthy People 2010.” The definition in the 

Minority Health and Health Disparities Research and Education Act does not explicitly 

name people with disabilities among the targeted groups; the “Healthy People 2010” 

statement specifically includes people with disabilities. 

From the Minority Health and Health Disparities Research and Education Act, P.L. 106-

525, Sect. 101: 

(a) In General.—The general purpose of the National Center on Minority Health 

and Health Disparities (in this subpart referred to as the ‘Center’) is the conduct 

and support of research, training, dissemination of information, and other 

programs with respect to minority health conditions and other populations with 

health disparities. 

(c) (3) The term ‘minority group’ has the meaning given the term ‘racial and 

ethnic minority group’ in section 1707. 

(d) Health Disparity Populations.—For purposes of this subpart: 

(1) A population is a health disparity population if, as determined by the 

Director of the Center after consultation with the Director of the Agency for 

Healthcare Research and Quality, there is a significant disparity in the overall 

rate of disease incidence, prevalence, morbidity, mortality, or survival rates in 

the population as compared to the health status of the general population. 

The definition above does not exclude people with disabilities as a health disparity 

population; however, the focus of most of the projects associated with this initiative has 

been disparities experienced by racial or ethnic population groups. 

“Healthy People 2010” states that Goal 2 is to— 

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eliminate health disparities among segments of the population, including 

differences that occur by gender, race or ethnicity, education or income, 

disability, geographic location, or sexual orientation. 

Implied in the “Healthy People 2010” definition above is that differences in health 

outcomes and health care access are in comparison to the general population. 

Much of the research, whether federally supported or through private foundations or 

other avenues, examines disparities in the prevalence of selected health conditions (for 

example, cancers and obesity); the prevalence of risk behaviors (for example, tobacco 

and alcohol use); the receipt of preventive care (for example, flu shots, mammograms, 

and annual physical exams); prevalence of coverage for the costs of care; the presence 

of a usual provider of care; and reasons why needed care was delayed, postponed, or 

not received. In some cases, disability prevalence—defined by Activities of Daily Living 

(ADLs) or quality of life measures—has been used as one of the indicators of health 

disparity, making disability not a population group but an outcome measure. 

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APPENDIX E. NCD Health Care Summit Additional 

Recommendations for Reform and 

Stakeholder Actions 

Recommendation #1: 

Federal agencies engaged in population and health research must include 

disability measures in every survey that identify not only activity limitations 

but also environmental barriers to and disparate outcomes in health and 

health care. 

Stakeholder Actions 

Congress 

Congress should direct and fund the Agency for Healthcare Research and Quality so 

that it may take the lead in 

● Evaluating the evidence base to support the development of clinical practice 

guidelines, quality goals, and monitoring standards for the prevention and 

management of secondary health conditions among people with disabilities and 

for the monitoring and management of people aging with disability 

● Evaluating the evidence base about environmental contributors to secondary 

health conditions 

● Identifying research gaps and directions for further research on secondary 

health conditions and aging with disability 

In order to support a program of disability research that is commensurate with the need 

for better knowledge about all aspects of disability at the individual and the societal 

levels by increasing the total amount of public funding provided for disability research, 

Congress should 

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● Elevate the National Center for Medical Rehabilitation Research to the status of 

a full institute or freestanding center within the National Institutes of Health with 

its own budget 

● Create an Office of Disability and Health in the Office of the Director at the 

Centers for Disease Control and Prevention (CDC) to promote the integration of 

disability issues into all CDC programs and direct development of clinical 

practice guidelines and standards of care 

● Direct the U.S. Department of Education to support the National Institute on 

Disability and Rehabilitation Research in continuing to upgrade its research 

review process and grants program administration

The National Center for Health Statistics, the U.S. Census Bureau, and Bureau of 

Labor Statistics 

Federal agencies must adopt a uniform disability monitoring system for identifying 

access barriers, quality measures and outcomes, and health and health care disparities. 

● Government agencies involved in disability monitoring should adopt the 

International Classification of Functioning, Health and Disability (ICF) as their 

conceptual framework and should actively promote continued refinements to 

improve the framework’s scope and utility for disability monitoring and research. 

● The Interagency Subcommittee on Disability Statistics of the Interagency 

Committee on Disability Research should coordinate the work of these 

agencies to develop, test, validate, and implement new measures of disability 

that correspond to the components of the ICF, consistent with public policy 

priorities. 

● The National Center for Health Statistics, in collaboration with other relevant 

federal agencies, should continue to improve the scope and quality of data—

including longitudinal or panel data—on disability, its causes, and its 

consequences. These improved data sources should serve as the cornerstone 

of a new national disability monitoring system. 

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Recommendation #2: 

Health care facilities, services, and programs must be accessible according 

to Federal and state standards and guidelines and should actively promote 

principles of universal design in the built environment; for diagnostic, exam, 

and other medical equipment—in fact, for all aspects of care delivery. 

Stakeholder Actions 

Congress 

Congress must require HHS to ensure that every entity involved in the delivery of health 

care services meets architectural and programmatic accessibility requirements and fund 

HHS to 

● Develop robust monitoring and oversight mechanisms to ensure that entities 

including states, professional medical education programs, health plans, 

managed care organizations, and medical facilities and services that receive 

federal funding to provide health care services, training, research and that 

engage in other health-related activities meet minimum architectural and 

programmatic accessibility standards and guidelines 

● Document evidence of accessibility and capacity to provide programmatic 

access through systematic assessments and reporting between and among 

contractees and contractors 

● Develop incentives and penalties related to achieving the goals

The Joint Commission and Other Accreditation Bodies 

● The Joint Commission and other accreditation organizations must require that 

facilities be accessible according to federal and state standards and guidelines 

and must actively promote principles of universal design both in the built 

environment and for diagnostic, exam and other medical equipment. 

● Accreditation bodies either should provide ongoing technical assistance to 

institutions seeking accreditation or contract for training with qualified 

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organizations. (The CARF standards and the Kaiser Permanente and 

Washington Hospital settlement policies and training materials and procedures 

could be used as a starting point.) 

● Accreditation bodies should reward the implementation of “universal design” 

principles in health care settings. 

U.S. Department of Justice 

The Department of Justice must 

● Continue to vigorously pursue and publicize effective settlements and litigation 

of complaints of accessibility and accommodation violations in major health 

care institutions 

● Issue and widely disseminate guidelines for health care providers that describe 

expectations for compliance with the accessibility provisions of the Act 

● Revisit the applicable ADA regulations and ADA Architectural Guidelines in 

order to identify gaps where compliance with the law does not ensure 

accessible health care (for example, the absence of requirements for provision 

of available useable/accessible medical equipment such as height-adjustable 

exam tables or limited guidance on what constitutes effective communication in 

the health care context) 

Health Care Professional Organizations 

Health care professional organizations must

● Design specific hospital and health care provider standards on disability access 

in concert with the disability community 

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State Governments 

States must ensure that entities with whom they contract for medical care are 

accessible and culturally competent to serve people with disabilities. Suggested 

methods include 

● Developing and adopting performance standards for health insurers in order to 

receive Medicaid reimbursement for providing services to people with 

disabilities. (One model is “Performance Standards for Medi-Cal Managed Care 

Organizations Serving People with Disabilities and Chronic Conditions: 

Recommendations Report,” published by the California Health Care 

Foundation.) 

● Adopting the recommendations found in “Key Approaches to the Use of 

Managed Care Systems for Persons with Special Health Care Needs,” created 

and published by the U.S. Department of Health and Human Services, the 

Health Care Financing Administration, and the Center for Medicaid and State 

Operations 

● Adopting the state of New York’s “Guidelines for Medicaid MCO [Managed Care 

Organization] Compliance with the Americans with Disabilities Act (ADA)” 

Recommendation #3: 

All health care provider training programs must have a disability competency 

requirement that produces student comprehension and understanding of the 

principles of accessibility, accommodation, cultural competency, and 

awareness of community and other resources for people with disabilities. 

Stakeholder Actions 

Medical and Other Professional Schools 

Institutions that train physicians, surgeons, dentists, therapists, nurses, and others in 

the health care field must establish disability competency requirements and take steps 

to ensure that disability-related information is fully integrated into all aspects of training. 

377 
Such steps should 

● Include and integrate clinical training and resources about disability concerns 

throughout the educational process 

● Provide clinical training about disability accommodations and the role and value 

of screening and preventive care for persons with disabilities 

● Provide clinical resources and tools for addressing specialized disability issues; 

such information could be developed, deployed, and updated on a Web site, for 

example 

Health Care Professional Organizations 

Health care professional organizations must 

● Take the lead to design and implement disability curricula in collaboration with 

the disability community and educational institutions 

● Work with educational institutions to integrate disability curricula into training 

programs 

● Educate professional membership using newsletters, journals, and Web sites 

Recommendation #4: 

Congress must establish a publicly funded system of technical assistance 

centers where states, health plans, clinics, hospitals, diagnostic and 

treatment centers, individual medical practitioners, equipment 

manufacturers, people with disabilities, and others can easily obtain 

centralized information on defined standards of care and related practical 

resources for ensuring full access to health care services for people with 

disabilities. 

378 
Stakeholder Actions 

Congress 

Congress must take steps to identify and set priorities for intervention by 

● Conducting oversight hearings concerning health and health care access, 

accommodation, cultural competency, and standards of care for individuals with 

disabilities in order to set priorities for technical assistance 

● Enacting legislation that mandates and funds technical assistance and charges 

appropriate federal agencies with carrying out implementation 

Recommendation #5: 

Key stakeholders must ensure that these and other critical issues 

concerning health and health care for people with disabilities are fully 

integrated into “Healthy People 2020” deliberations taking place during 2008 

and 2009, and into the final publication. 

Possible specific recommendations for inclusion are timely access to appropriate 

screening for secondary conditions such as osteoporosis, sleep disorders, 

hypertension, and lipidemia; assurance of accessible health care facilities and services; 

readily available methods to ensure effective communication; and coordination of care. 

379 
380 
APPENDIX F. Additional NCD Health Care Summit 

Information: Summit Agenda, Summary 

of Oral Content Presentations, and 

Summit Planning Committee List 

Summit Agenda 

2008 Summit on Health Care for People with Disabilities 

Rehabilitation Institute of Chicago & Disability Rights Education and Defense Fund 

On Behalf of the National Council on Disability 

Rehabilitation Institute of Chicago 

345 East Superior Street 

Chicago, IL 60611 

Monday, April 7, 2008 

8:00 a.m. – 9:00 a.m. Continental Breakfast Heyworth 

9:00 a.m. – 10:00 a.m. Greetings and Introductions Heyworth 

• Kristi Kirschner, M.D., Coleman Foundation Chair in 

Rehabilitation Medicine, RIC 

• Judy Panko Reis, Director, Women with Disabilities 

Center, RIC 

• Joanne Smith, M.D., CEO, RIC 

• Victoria Carlson, Council Member, NCD 

• Cynthia Wainscott, Council Member, NCD 

Background and Rationale for the Project 

• Mary Lou Breslin, Senior Policy Advisor, DREDF 

Participant Introductions 

Business and Logistics 

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10:00 a.m. – 10:30 a.m. Overview of Health Status of People with Disabilities and 

Key Health Care Access Issues and Concerns 

• Kristi Kirschner and Judy Panko Reis 

- Coverage 

- Accessibility 

- Programmatic Access 

- Cultural Competency 

- Coordination of Care 

• Video Presentation – “Learning to Act in Partnership: 

Women with Disabilities Speak to Health Professionals”

• Question and Discussion

10:30 a.m. – 10:45 a.m. Break 

10:45 a.m. – 11:30 a.m. Overview of Specific Health and Health Care Issues 

Women with Disabilities 

• Rosemary Hughes, University of Montana 

• JoAnn M. Thierry, Centers for Disease Control and 

Prevention 

People with Communications Disabilities 

• June Isaacson Kailes, Center for Disability Issues and the 

Health Professions 

People with Developmental Disabilities 

• Sue Swensen, former Executive Director, The ARC of the 

United States 

382 
People Who Are Deaf 

• Carolyn Stern, MD, Rochester School for the Deaf and 

Gallaudet University 

Questions and Discussion 

1:30 a.m. – 12:15 p.m. Facilitated Group Discussion 

12:15 p.m. – 1:15 p.m. Lunch 

1:15 p.m. – 1:45 p.m. Universal Design Principles in Health Care 

Universal Design Principles 

• Jim Terry, Evan Terry Associates 

Questions and Discussion 

1:45 p.m. – 2:15 p.m. Role of Federal Government 

Absence of Federal Directives to States on Access, 

Accommodation, and Accountability 

• Silvia Yee, DREDF 

Definitions, Data Collection, Disparity Initiatives 

• Lisa Iezzoni, MD, Institute for Health Policy, 

Massachusetts General Hospital and Harvard Medical 

School 

Questions and Discussion 

2:15 p.m. – 3:15 p.m. Introduction: Priority Recommendations 

Facilitated Group Discussion 

3:15 p.m. – 3:30 p.m. Break 

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3:30 p.m. – 4:30 p.m. Specific Priority Recommendations 

Small Group Discussion 

4:30 p.m. – 5:00 p.m. Report Back and Discussion 

5:00 p.m. Wrap-up/Adjourn 

6:00 p.m. Welcome Dinner 

Viand Restaurant

Marriott Hotel

Tuesday, April 8, 2008 

8:00 a.m. – 9:00 a.m. Continental Breakfast 

Heyworth

9:00 a.m. – 9:15 a.m. Reconvene and Check-in 

• Kristi Kirschner 

9:15 a.m. – 10:30 a.m. Develop Action Plans 

10:30 a.m. – 10:45 a.m. Break 

10:45 a.m. – 12:00 p.m. Develop Action Plans, continued 

12:00 p.m. – 1:00 p.m. Lunch 

1:00 p.m. – 2:00 p.m. Reconvene: Participant Feedback and Discussion 

2:00 p.m. Adjourn 

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NCD Health Care Summit 

Framing the Issues: Summary of Oral Content Presentations 

Health Status of People with Disabilities and Key Health Care Access Issues 

Judy Panko Reis, M.A., M.S., Rehabilitation Institute of Chicago 

Kristi Kirschner, M.D., Rehabilitation Institute of Chicago 

Dr. Kirschner began by relating a case story illustrating the pervasive problems with 

programmatic access inherent in health care settings. Problems arise not from physical 

accessibility barriers alone but from layers of access. Programmatic access involves the 

way in which services are delivered. It requires the coordination of services, an 

accessibility plan, and a road map for recognizing and accommodating a range of 

disabilities and issues. 

Mike is 60 years old, and had polio as a child. Functionally a paraplegic, he uses a 

wheelchair. He has been an active, vigorous man who graduated from college, married, 

and has a son and four grandchildren. He works full-time at a university. 

About 10 years ago, he began to experience the effects of post-polio syndrome. He 

began to use a noninvasive ventilator when he lies flat or sleeps, and he 

accommodated readily to this change. 

This is not a scenario that the health care system embraces; we’re comfortable with the 

acute care use of ventilators and tracheostomies, but not the noninvasive side. 

Mike went to a community hospital for a CT which showed an ill-defined pelvic lesion. 

He was discharged and referred for outpatient MRI followup. His internist orders the 

MRI, noting he must use his ventilator when lying flat. 

This situation is novel; it’s unique. It requires integrating and coordinating services, and 

that didn’t happen in a timely manner. Nine months later, he had his MRI with an MRI385 
compatible vent. This required having a respiratory therapist present, but he got the 

scan. By this time, the lesion had more than doubled in size, and a serious malignancy 

was found. 

What has happened here? This is about much more than disability access. This is about 

patient safety. This is quality of care. This is a delayed diagnosis. 

Mike’s second MRI wouldn’t be a problem because we already worked through the 

scenario, right? Well, guess what? It was like reinventing the wheel. He came in for his 

MRI and was sent home. Different staff were on duty, and they decided that an 

anesthesiologist had to be present. Mike couldn’t eat breakfast, in case they had to 

intubate him, and the anesthesiologist ended up leaving because he wasn’t needed. He 

was treated as if he were an acute care patient, not as someone who chronically uses a 

ventilator to breathe on his own. These uses are not the same, but health care just 

doesn’t have an in-depth, nuanced understanding of that.

Here’s a person dealing with cancer, going through the health care system to get his 

needs met. It’s onerous to begin with. And to have to advocate, fight, and deal with 

access issues is simply overwhelming. 

And it’s not just simply a civil rights issue. It is a quality of care issue. It is a patient 

safety issue. There are so many layers to access that we, in the health care profession, 

must learn to embrace. 

And yet, the population of people with disabilities is not small. Depending on the 

definition used, it includes 20 percent of the population at any given time. Disability is 

prevalent among our aging population and people are surviving and growing old with 

disabilities. We have uncharted territory as the first generation of adults with spina bifida 

and other disabilities grows old. 

Disability is challenging in the sense that it is heterogeneous. It involves acquired, 

congenital, progressive, static, and invisible disabilities. Some people have physical, 

386 
sensory, cognitive, or psychiatric disabilities; some are temporary, and others are 

permanent. But what they have in common is some limitation in the major activities of 

daily living resulting from physical or mental impairment. 

People with disabilities are not necessarily sick, though many of them are, and they’re 

high users of the health care system. As a rule, they are just as likely to have health 

insurance as their nondisabled counterparts. It is, however, more likely to be publicly 

funded insurance, Medicare and Medicaid. 

We know there are significant holes in the system. For instance, if you become ill or 

disabled while you are employed, and need to leave your employment, you are eligible 

for COBRA. But COBRA is very, very expensive. And the requirements to access 

Medicare and Medicaid are extensive; there are spend-downs and waiting periods. Preexisting conditions prevent coverage in many cases, and much needed care—eye-care, 

assistive technology, or augmentative communication—falls under out-of-pocket 

expense. 

 We know that people with disabilities as a rule are poor, employed at lower rates, and 

more likely to be socially isolated. There are racial disparities, with African Americans 

and Native Americans having higher rates of disability than other groups. Families 

report postponing care, skipping or splitting medication doses, and spending less on 

basics like food and heat in order to pay for health care. 

People with disabilities report experiencing significant difficulties with providers. 

Physician offices and physician attitudes prevent access to needed care. Knowledge of 

disability is rare. Transportation services are lacking. The barriers are broad and the 

issues are layered and complex. 

Judy Panko Reis was reminded of a comment from a user of the Rehabilitation Institute 

of Chicago’s (RIC) Women with Disabilities Center: “We will know if we have achieved 

accessibility when people with disabilities do not have to pick up the phone before they 

387 
go into the hospital, before they go into the restaurant and ask whether or not we can be 

accommodated.” 

Panko Reis described fish tales, a genre of health care access stories among people 

with disabilities, originated by summit participant, Lisa Iezzoni, M.D. Fish tales are the 

stories people tell about the health care barriers they’ve experienced, each story 

topping the one before. The big fish and small fish tales raise two questions: (1) How do 

we define the barriers that block us, as people with disabilities, from getting safe, quality 

patient-centered health care in U.S. medical offices and hospitals? What are the real 

barriers? (2) What can we, as health care stakeholders, do about removing these 

barriers? 

Panko-Reis introduced “Learning to Act in Partnership: Women with Disabilities Speak 

to Health Professionals,” a thought-provoking video produced in partnership between 

the RIC and Carol Gill, Ph.D., of the University of Illinois at Chicago. The video, an 

Award in Excellence winner at the 2002 International Disability Film Festival, was 

conceived by women with disabilities working in partnership with health care providers. 

The message is grounded in the voices of the women telling their personal health care 

stories. The video is organized into five sections: access barriers, sexuality and 

reproductive health, mental health and domestic violence, aging, and public policy. 

“Learning to Act in Partnership” introduced the role of cultural competency in disability 

access, and Dr. Kirschner emphasized that many of the access issues embedded in the 

health care system relate to understanding disability from a social, medical and cultural 

context. How do we train health care providers to work with, communicate with, and talk 

to people with disabilities to know what resources are appropriate and available? 

Disability is not integrated into medical, nursing, or allied health education curricula. As 

a result, health care providers lack basic knowledge about disability as a construct, the 

environmental and medical components of disability, and the range of solutions and 

approaches that exist. 

388 
Dr. Kirschner closed by challenging the group to look deeper into the layered issues of 

cultural competency, patient safety and coordination of care, while at the same time 

tackling the barriers posed by the bricks and mortar of the built environment. 

Women with Disabilities 

Rosemary Hughes, Ph.D., University of Montana 

JoAnn M. Thierry, Ph.D., M.S.W., Centers for Disease Control and Prevention 

Rosemary Hughes introduced the population of women with disabilities. Of 137 million 

noninstitutionalized civilian women in the United States, 15.4 percent are reported to 

have some type of disability. Women with disabilities face compounded barriers to 

health care stemming from environmental, psychosocial, socioeconomic, and 

informational contexts. 

Hughes focused remarks on two specific and critical areas: depression and 

interpersonal violence. She described the prevalence of depression among women with 

disabilities; 51 percent of women interviewed in Hughes’ research were found to have 

clinically significant symptoms of depression. Up to 37 percent of women interviewed 

reported not having received current treatment (treatment within the past three months), 

and this was especially true for Latinas with disabilities. 

Approximately one in five women with disabilities reside in rural American, and the 

likelihood of receiving treatment for depression is reduced even further for this 

population. Rural women with disabilities have been termed “the poorest of the poor” 

according to an American Psychological Association (APA) task force on rural mental 

health. Rural women are more likely to lack access to timely and appropriate health 

care; an ongoing source of care; or access to a female, minority, or specialty physician. 

Hughes presented interpersonal violence as a critical public health problem for people 

with disabilities, and discussed her current project work on the screening and 

intervention needs of both men and women with disabilities—a complex issue that 

involves access to health care, domestic violence, and sexual assault services. Hughes 

389 
is developing screening methods for people with disabilities that will include questions 

on physical and sexual abuse, as well as disability-related abuse queries, such as a 

caretaker refusing support with activities of daily living or withdrawing assistive devices. 

Jo Ann Thierry focused her discussion on a series of three studies conducted at the 

Centers for Disease Control and Prevention (CDC) looking at breast cancer screening, 

breast and cervical cancer screening for women with disabilities, and health promotion 

programs for women with disabilities. 

All members of the disability community should have access to health promotion, 

disease prevention, and the direct medical services they need to optimize good health. 

Yet women with disabilities continue to face substantial barriers that contribute to lack of 

screening. These include physical, attitudinal, and policy barriers; lack of information 

about how disability affects health; financial limitations; and inadequate personal 

assistance. 

Attitudinal barriers include both participant and provider attitudes. Interviews and focus 

groups conducted by the CDC in over seven regions of the United States revealed that 

many women with disabilities do not realize they are at risk of cancer. Although all 

women have similar risk factors cancer regardless of disability, not all women 

disabilities are aware of this fact. In the CDC studies, women believed they did not need 

breast or cervical cancer screening because of their disability. In other words, lightning 

would not strike twice. Thierry described hearing this belief stated over and over again. 

The CDC’s studies also found that women with disabilities lack the basic knowledge 

about preventive health care that women in general have. In one study, women with 

disabilities identified 18 different risk factors for breast cancer, yet in fact only three 

were established risk factors in the literature. For instance, many women believed that 

engaging in physical activity caused cancer. These results lead Thierry to conclude that 

prevention information in the public domain does not effectively reach women with 

disabilities. 

390 
Another problem identified by the CDC’s research is that women with disabilities are 

often so preoccupied with competing health issues that preventive health care is not a 

priority. In these cases, preventive services represented an additional weight that 

women could not shoulder at the moment. 

During the interviews and focus groups conducted by CDC, Thierry spoke with more 

than 250 women with a variety of physical disabilities across the United States. Provider 

attitude and behavior played a prominent role in these discussions. Many women with 

disabilities find the attitudes of health care providers a barrier to health care. In general, 

providers are reported to lack sensitivity and understanding of disability and make 

erroneous assumptions based on disability. 

The CDC also conducted focus groups with health care providers, asking them to 

identify barriers to providing care to women with disabilities. The two most frequent 

responses were lack of training and lack of reimbursement and time. Physicians felt 

they did not have sufficient time to provide care and were not appropriately reimbursed 

for services they did provide. 

Women who participated in the CDC studies identified several more barriers to health 

care. Facilities and equipment were cited as a frequent problem; inaccessible entry 

doors, examination rooms, restrooms and dressing rooms were not uncommon. 

Transportation was a significant issue, although the problem was not necessarily a lack 

of availability but instead an absence of service quality and reliability among paratransit 

systems. Cancelled rides, late pick-ups, and missed medical appointments were 

widespread occurrences. Deficiencies in personal assistance posed barriers as well. 

Resources were often unavailable at the time of the medical appointment, leaving 

women to fill out forms, dress, or transfer without adequate assistance. And financial 

limitations did not allow women to purchase needed medication, services, or equipment. 

Thierry highlighted effective methods for creating and delivering health promotion 

messages to women with disabilities. Women with disabilities do not see themselves in 

the general health promotion materials developed and distributed by the CDC; they 

391 
couldn’t see themselves in the message. In response, the CDC has developed a new 

health promotion program encouraging women with disabilities to receive breast cancer 

screening. The program features four women with disabilities who have survived breast 

cancer and agreed to share their stories. Summit participant June Isaacson Kailes 

appears in the campaign, and the RIC Women with Disabilities Center served as the 

pilot site for the new program, which will launch soon. 

Strategies to place good materials into the hands of women with disabilities must be 

evaluated. Some accounts mentioned that materials designed specifically for women 

with disabilities, distributed through disability service organizations, still failed to reach 

the target population. Communication approaches must be assessed, and tactics 

designed to enhance the effectiveness of dissemination efforts. 

Thierry believes the problems can be solved; good preventive health care for people 

with disabilities can be achieved. She cited three things needed to make this happen. 

First, women must understand they are at risk for cancer and other health conditions. 

Secondly, we must have better provider training and education. Physicians must know 

that women with disabilities should be referred for screening. Third, overall access and 

accessibility must improve. If women understand they are at risk, and physicians refer, 

then facilities that are fully accessible are essential. According to Thierry, “We must 

address the issues from these fronts and we must do it simultaneously in order to be 

successful.” 

People with Communication Disabilities 

June Isaacson Kailes, M.S.W., L.C.S.W., Western University of Health Sciences 

June Isaacson Kailes framed her remarks around universal and overarching issues that 

affect all disability groups. In reality, the subsets of speech and vision disabilities do not 

exist cleanly alone. People live with multiple disabilities. 

There are specific needs for people with speech disabilities: longer appointments to 

enhance communication access, staff trained to know how to work with people who use 

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communication devices, and staff who understand how to use speech-to-speech relay 

services. In terms of visual issues, alternate formats of printed material are needed that 

can include Braille, large print, or audio translation. Assistance with orientation to 

facilities and way-finding is needed. A major concern relates to privacy when printed 

forms need to be completed in the waiting area. Kailes told of people with visual 

impairments being asked out loud in a waiting room full of people, “Have you had any 

sexually transmitted diseases?” 

Overarching issues comprise physical, equipment, communication, and attitudinal 

access. In terms of policy fixes, Kailes suggested, “Couldn’t we get further faster by 

universalizing some of these needs? And not just talking from a disability perspective.” 

For example, communication access goes beyond disability groups. It’s a major issue 

for those with low literacy and other language issues. Surveys that Kailes conducted for 

managed care organizations indicated that people want information in more than one 

format—large print, audio. It goes beyond disability accommodation. Medical errors are 

not solely on the provider side but also due to the lack of good communication access. 

People with visual disabilities, and others, need medication information in formats they 

can access—pictures, audio, whatever works. 

Kailes told the story of a man who was blind and who was taking the cholesterol 

medication Zocor. He had pharmacy counseling at the window when he collected his 

prescription, but was not given access to the patient prescription information, which only 

came in printed format. This man loved grapefruit and ate a lot of grapefruit every day. 

People who take certain cholesterol medicines are advised against eating grapefruit or 

drinking grapefruit juice. He had not received this warning because the information was 

not available to him in an accessible format, and as a result he developed cirrhosis of 

the liver. His cirrhosis was not a result of alcohol use; this man only had one drink in his 

life, and that was at his wedding. His death was completely preventable. 

Understanding how attitudes get in the way of health care is important. Sometimes, 

health care providers come into the room with predetermined attitudes. They make 

assumptions about the quality of the lives of people with disabilities by assuming that 

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smoking cigarettes, drinking, and eating poorly, for example, are disability-coping 

mechanisms. Consequently, they can fail to provide information about the importance of 

exercise or diet. She also noted that she has observed providers who think that 

wheelchair users do not require HIV testing, thus assuming incorrectly that they do not 

engage in behaviors that expose them to the risk of HIV infection. 

Critical issues are both clinical and attitudinal, so the focus must be on competency 

development and training that includes processes, policies and procedures. Much of the 

problem relates to equipment access, not only how specific equipment should be used, 

but also the procurement process and information that is needed of patients ahead of a 

visit or scheduled procedure. More attention also must be paid to the importance of 

policies that call for the acquisition of health information and education materials in 

accessible formats; most are not captioned or audio described. 

Kailes used the term “quality service accommodation alerts” to describe a method for 

alerting providers that a scheduled patient requires specific accommodations. She 

posed the hypothetical questions: “How many times do I have to go to the same 

provider office where they take me to the exam room without a height-adjustable exam 

table? I say no, I need an accessible table, then they say they do not have one. I say 

yes, yes you do . . . in exam rooms 3, 4, and 15! The fatigue that goes on every time we 

have to remind someone that I need an accessible weight scale, or I am not able to 

stand, or I need two technicians for a mammogram, or I need transfer assistance.” With 

the right policies, procedures, and awareness, these problems could be solved. 

The biggest sea change in health care, according to Kailes, has emanated from 

disability rights litigation in health care by the Department of Justice (DOJ) and private 

attorneys. However, she said, “But you know, in the big picture, the impact has still been 

pretty small. So, how do we escalate this?” 

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People with Developmental Disabilities 

Sue Swensen, Former Exective Director, ARC of the United States 

What is the value of the person with a disability in the community if they have profound 

or multiple developmental disabilities? Too often in health care, the system teaches us 

to assess the value of the person being treated before they are ever seen. The CEO 

with the very best health care plan is allowed access to any specialist in the world. Is it 

because that person has more value? Sue Swensen said we must question this as a 

society. Do we really think health care can be distributed according to economic 

capabilities of the person? 

“My son Charlie is 25 years old. He was identified at 18 months old with muscular 

dystrophy, quadriplegia, legal blindness, and with signs of autism and depression. If I 

describe him accurately, people can’t imagine he can do anything. I see him as a 

wonderful, loving person who makes an enormous contribution to my family and our 

community, yet that piece is almost never discussed when we talk about health care 

and developmental disability.”

One of the major problems we have in looking at health care and people with disabilities 

is the insistence on a two-part dichotomous model—the social and medical models of 

disability. Giving credit to Richard McKeon at the University of Chicago, there are at 

least four models concerning disability. 

First is the medical model, which is how families are introduced to developmental 

disability. The focus is on “cure” and fixing errors inherent in the individual. Families with 

autism are now experiencing this judgment much as families with a label of mental 

retardation did in the 1950s. It runs counter to any concept of disability cultural 

competence. Medical professionals are not trained to be culturally competent with 

people with disabilities and disability culture; therefore, a family’s first introduction to 

disability is medically-oriented. 

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A second approach is to accommodate an individual’s lack of function through a 

rehabilitation model. Basic functions might be achieved through the rehabilitation model; 

these might include dressing, feeding, self-care, or communication. The role of 

rehabilitation often falls short, as families of people with intellectual and developmental 

disabilities have experienced. Accommodations in support of an individual’s innate right 

to become an adult, make decisions, and direct their own life are often truncated and 

unavailable. This is a serious issue. 

A third outlook on disability is the civil rights approach. Instead of aligning 

accommodations and supports solely with societal expectations, the rights method asks 

people what they want to accomplish in their lives and how society can assist. Health 

care makes a significant contribution and work in support of people’s rights. 

Tremendous health care resources are spent supporting the right of people to redefine 

and reinvent themselves. Yet this is rarely so for people with disabilities. How much 

cosmetic or bariatric surgery do the wealthy have the right to purchase? Is that a 

resource that might otherwise be directed to a person with a disability? Does a person 

who is born with Down syndrome have a right to unlimited cosmetic surgery because 

we live in a society where image is more important than anything else? This is a serious 

question that we do not even consider. 

As Swenson said, “Medicaid doesn’t allow the recognition of modifiers in its billing 

structure. This means the person can only be treated for one presenting problem at a 

time. I assure you when my son goes to any doctor; he has six or seven presenting 

problems. I frequently have to make other appointments to come back so that each can 

be addressed. It’s easy for me to come back. I have staff and a car. For a mother taking 

her son on three buses across the city of Chicago, those other five problems are just 

never going to be treated. And that’s a deep flaw in the system.” 

The fourth method to consider is the social model, where we think not only about the 

individual and which therapeutic interventions might be given, or the accommodations 

that could be made, or the rights that are necessary, but we think about the social 

impact of health care and the social requirements. 

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Questions are continually generated between the methods or models. For example, 

between medicine and rehabilitation, I might ask, “Am I provided with accommodations 

that I need to use health care resources?” Conversely, between rehabilitation and 

medicine, I might say “Do I have the right health care so that I can optimize the 

accommodations that are available to me?” Is this even considered a goal of health 

care? Then on the medicine to rights dimension, you might ask, “Does my health care 

provider have the right to treat me the way his profession requires him to treat me?” 

Medical professionals have ethics and requirements, and yet, the way the payment 

system is structured, these professionals are deeply restrained in what they can do. The 

problem is inherent in private insurance as well as Medicaid. 

The key question is “Is there a system to create a system?” Do we depend on meetings 

like this to bring together people of good will and great intelligence on an occasional 

basis to deal with very significant issues that affect millions of Americans? Or do we 

create a system where focusing on moving forward and addressing common problems 

from different disciplinary platforms is done on an ongoing basis? 

The importance of marketing channels was stressed. Swenson described her market 

research study of Social Security, which involved analyzing more than 2 million Social 

Security data points via market segmentation databases. The databases that corporate 

America, including health care companies, used to design new services were found not 

to contain any data on people with disabilities. Swenson upheld that Social Security has 

a responsibility to put that information into the marketing databases, and CDC can make 

a significant contribution as well. 

Swenson encouraged summit participants to use available tools such as the “Montreal 

Declaration on Intellectual Disability,” created under the auspices of the Pan American 

Health Organization and now adopted by the World Health Organization (WHO). The 

language is very clear about supported decision making and limited guardianship and 

their effects on health care for people with developmental and intellectual disabilities. 

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People Who Are Deaf 

Carolyn Stern M.D., Rochester School for the Deaf and Gallaudet University 

Dr. Carolyn Stern shared available statistics about the deaf and hard-of-hearing 

populations, but pointed to limitations in data and called for better collection efforts. 

Universal newborn hearing screening programs have helped gather better data but 

without followup they cannot account for hearing loss developed in later months or 

years. 

According to the best data, roughly 1 in 10, or 30 million, Americans have some degree 

of hearing loss. In the 2000 census, about 1 in 100 was found to have a profound loss. 

We clearly know the prevalence of hearing loss increases with age, and more than half 

of people with hearing loss are over the age of 85 years. The Deaf community, those 

who use sign language to participate in community life, is estimated between 40,000 

and 1.5 million people. Accurate estimates are difficult given the lack of precise data. 

The health care status of people who were born deaf or became deaf before acquiring 

language is very similar to other language minority groups. Not unlike new immigrants, 

people who are deaf experience poorer health status and fewer physician visits, 

primarily related to language barriers. In contrast, the health care status of people who 

are deafened later in life tends to mirror those with chronic disabilities. This group is 

also in poorer health, has more frequent physician visits due to aging, and yet does not 

necessarily receive preventive services. 

People who are deaf and hard-of-hearing tend to be of lower socioeconomic and 

educational status. Literacy levels, including health literacy, are lower than the general 

population. Employment opportunities are limited and often inadequate. The language 

barrier is critical in the work environment, and preconceived attitudes and prejudice is 

common. Stern noted, “I can’t tell you how many times children who have Deaf parents 

have been told, ‘Oh, it’s so wonderful you can interpret for your Mom and Dad so you 

can take care of them.’ And Mom and Dad are 40 and 50 years old and they’ve been 

getting along just fine, thank you. It’s a critical issue.” 

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For the most part, people who use only sign language as their means of communication 

tend to have limited contact with hearing culture. Many socialize within Deaf clubs, Deaf 

organizations, or schools for the Deaf and hard of hearing. People who are deaf have 

their own norms and culture, different from both the medical model of deafness and the 

social cultural model of someone who is deafened (but not Deaf). The implication is that 

people who are deaf tend not to be seen in the general population unless they are 

mainstreamed into the general population. 

Teaching the participants about the nuances of Deaf culture, Dr. Stern described 

learning about acceptable speaking volume differences between waiting room, 

physician office, and community voices. Stern learned about out-in-public voices from 

her sister-in-law who was stunned when her father, who is deaf, used his public 

speaking voice in the doctor’s waiting room. Fellow patients responded with audible 

surprise when hearing the volume of his voice. These are the cultural things you don’t 

necessarily think about. 

A high risk of miscommunication exists when deaf patients must rely on writing back 

and forth with their health care providers. By signing the simple sentence “he bought a 

house,” Dr. Stern showed the difficulty involved in translating American Sign Language 

(ASL) into the written word. The complexity of the English language adds even greater 

challenges, as evident in the word “run.” You can run to get something, run up a bill, 

have a run in your stockings, run out of milk, or have a runny nose. The single word 

“run” has multiple different signs based on intended meaning. 

The intricacies of language are amplified further during medical encounters. “Discharge” 

is a common word in the health care setting, but is that vaginal discharge, discharge 

from a wound, or discharge from the hospital? Dr. Stern related the time an interpreter 

interpreted “cervical” not in relation to the spine (as the doctor had intended), but in 

relation to female anatomy. The nuances of ASL, the challenges inherent in the English 

language, and the distinctiveness of medical vocabulary must be considered in every 

medical situation. 

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Tremendous diversity exists within the deaf and hard-of-hearing population. Some Deaf 

people rely more on oral communication or cued speech and tend to belong to 

organizations such as the Alexander Graham Bell Association, while culturally Deaf 

people communicate with ASL and gravitate toward the National Association of the Deaf 

(NAD). People who are late-deafened or hard of hearing tend to be more difficult to 

define because many do not self-identify as deaf or hard of hearing. They likely were 

hearing at one time, but lost their hearing as they grew older. As a group, they use a 

wide range of communication methods. 

We cannot limit our discussion to the person with a disability; the whole family is 

affected by disability. The familial effect is evident in organizations such as Children of 

Deaf Adults (CODA). Children of deaf adults have both practical and cultural issues. 

Caught in a cultural middle land, they are not really respected by the hearing community 

because their parents are deaf and they are not necessarily thought of as deaf by the 

Deaf community. 

The Deaf community can be categorized further by ethnic and foreign language 

modifiers. Black, Asian, Latino, and Russian people who are deaf are just a few 

examples of the subset populations. Dr. Stern related the story of a patient who was 

married, pregnant, a Latina with a strong family and Latino culture. The family issues, 

Deaf cultural issues, Latino cultural issues, and communication issues came together to 

create quite a complex encounter. 

The primary barrier for people who are deaf and hard of hearing in the health care 

setting is a given: communication is a barrier. Physicians with deaf patients do not 

understand communication needs, communication methods, Americans with Disabilities 

Act (ADA) requirements, cultural competency, or cultural humility. Where is the 

willingness to ask, “What is it that you need so I can communicate with you best?” 

rather than expecting that it is possible to know and understand each different culture 

that crosses your door. 

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Stern added, “Deaf patients do not understand health information. They are told to get a 

prescription, take this medication or put a patch on every week. This patient came in 

with, like, ten patches on him. They told him to put a patch on every week. You’re 

supposed to remove the first patch before placing the next one, only he didn’t know that. 

And so, these communication errors continue.” 

Often health care providers do not understand the roles of deaf and hearing family 

members. Family members are frequently called upon to act as Sign Language 

interpreters in areas where they are clearly not trained or qualified; they do not know 

medical vocabulary, the medical community, or the structure. Stern has heard of 5- and 

6-year-old children asked to interpret that their mom needs a mastectomy. Even when 

sign language interpreters are present, physicians and sometimes deaf patients 

themselves do not know how to work effectively with interpreters. 

Unfortunately, interpreter costs typically exceed the amount a physician receives in 

reimbursement for an office visit. Moreover, unlike installing a one-time ramp, 

interpreting costs are a recurrent expense. Costs can escalate easily even with 

allowable tax credits. The reimbursement issue plus additional time needed in the 

appointment represent two strong disincentives for physicians to provide care for deaf 

and hard-of-hearing patients. 

Deaf patients experience multiple barriers to accessing and understanding health 

information. Ambient knowledge—the type of health information you hear on the radio 

or overhear in conversation—is not accessible to people who are deaf or hard of 

hearing. As a result of communication barriers, Deaf patients do not receive health 

information from their health care providers, either. It is not known where people who 

are deaf or hard-of-hearing obtain their major health information. Often, they simply do 

not. 

These are systemic problems and challenges, and they require systemic solutions. One 

element of the solution is education. If we educate now, then we can hopefully prevent 

problems in the future. 

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In response to participant queries, Dr. Stern provided information on deaf and hard-ofhearing physicians and allied health providers. Although no one has precise numbers, 

Stern estimates 30 to 40 physicians who use sign language are in practice in the United 

States. Additionally, there are physicians who are former Sign Language interpreters. 

Still, primary care, wellness and mental health resources are all very limited, even in 

communities like Rochester, NY, which is home to many deaf services. Nationally, very 

few physicians with disabilities are practicing medicine. Our ability to progress toward 

more accessible and culturally competent care for people with disabilities depends in 

part on changing this reality. 

Stern’s presentation prompted participant discussion on the issue of universality. 

Communication is a significant issue for all patients, deaf and hearing, and it intersects 

with issues of poverty, literacy and ethnicity. The need for effective communication is 

not specific to people with disabilities, but universal to all patients. At the same time, we 

must be careful to properly frame the meaning of universality or universal design; it 

cannot work if seen as one size fits all. However, the role of universal design in 

improving health care access is realistic when defined as adapting the environment or 

equipment or communication around individual needs. 

Universal design principles intersect with the Institute on Medicine’s (IOM) strategy on 

person-centered care. The IOM has identified person-centered care as one of the six 

aims for improving the health care system. According to the IOM, the individual patient’s 

culture, social context, and specific needs deserve respect, and patients should play an 

active role in making decisions about their care. The IOM context provides a helpful 

strategy for improving health care access for people with disabilities. Person-centered 

care is based on health care providers understanding the individual needs of patients 

and families, a concept which interlinks well with the principles of adaptable design. 

“Definitely, you want to ask the person, what’s the best way for me to communicate with 

you?” Stern said.

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Universal Design Principles in Health Care 

Jim Terry, A.I.A., Evan Terry & Associates 

Jim Terry provided a detailed examination of the seven principles of universal design. 

The first principle is equitable use, meaning the design must be useful and marketable 

to any group of users. User groups in the health care setting include everyone from 

patients to nursing students, visitors, and hospital volunteers. Moreover, not only does 

this principle address use from the perspective of functional role in the health care 

environment, but also considers need throughout the life span. Equitable use means the 

environment is available to people with variable abilities and disabilities. Terry said, 

“The design is seamless. It doesn’t call attention to disability. It just works.” 

For example, we have exam tables that drop down to 18 inches. The table articulates 

directly with the wheelchair, allowing the user to transfer directly from chair to table. This 

design reduces risk of injury to patient as well as the caregiver involved in patient 

transfers. Terry estimates that musculoskeletal injuries incurred while transferring 

patients account for as much as 50 percent of workers’ compensation cases in health 

care. While an adaptable exam table does much for the dignity, safety, and quality of 

care delivered to the patient, it also contributes significantly to workplace safety and 

organizational productivity and reduces nursing turnover. 

The second principle of universal design is flexibility of use. The question is whether the 

design accommodates a wide range of preferences and abilities. A good design will 

accomplish this flexibility through choice. Universal design is not coming up with a 

single solution for everyone; the best design offers choices. For instance, one of the 

facilities designed by Terry’s architectural firm featured height-adjustable employee 

work stations and a work counter with two heights distributed along the length of the 

counter. Employees can choose to work at either the lower or higher section depending 

on their unique needs or those of the customer on the opposite side of the counter. The 

design is functional, ergonomic, comfortable, and adaptable. 

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The concept of choice and flexible use has positive impact on patient safety. We now 

have adaptable magnetic resonance imaging (MRI) scanners. The patient can walk in, 

sit, stand, or recline during the procedure. The imaging procedure adapts to the 

patient’s individual need, instead of the patient adapting to the scanner’s fixed 

capability. We have wheelchair weight scales that fold up against the wall, taking up 

little space when not in use. The patient can be weighed in the chair and the empty 

chair weighed once the person transfers to the exam table. Through use of this design, 

the physician can accurately prescribe medication based on the true weight of the 

individual versus an estimate. These innovations, which support patient safety and 

quality of care, are available but used little. 

Principle three says the design must be simple and intuitive. Use must be easy to 

understand regardless of the user’s experience, knowledge, language skills, or current 

concentration level. Principle four is perceptible information. The design must 

communicate the necessary information effectively to the user regardless of the ambient 

conditions or user’s sensory abilities. For example, patients can be alerted in a 

pharmacy or waiting room environment with a verbal announcement plus light-emitting 

diode (LED) signage. The benefits of perceptible information are certainly not limited to 

people with disabilities; people who are distracted or attending to small children benefit 

from overlapping audible and visual alerts alongside people who are deaf, hard of 

hearing, or visually impaired. 

The fifth principle of universal design addresses tolerance for error. Does the design 

minimize the hazards and adverse consequences of accidental or unintended actions? 

A tolerance for error minimizes any surprise to the user. For example, in California 

hospital facilities, which must be reinforced with seismic bracing capabilities, the 

protruding bracing can present a hazard to a person with a vision impairment or to 

someone who is simply inattentive. Installing a rail along the bracing allows a cane to 

pick up the presence of the bracing, and also alerts the inattentive individual to the 

hazard well before he or she reaches it. 

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Principle six emphases low physical effort. The design needs to be efficient and 

comfortable, causing a minimum of fatigue. Automatic door opening devices and 

distance from parking to entrance are key examples. Principle seven says to design 

size and space for approach and use. This principle is met when an individual can 

approach, reach, manipulate, and use the environment regardless of body size, posture, 

or mobility. 

Responding to questions from participants, Terry noted that the universal design 

movement is in its very beginning stages, even though the concept initially emerged in 

1978 or 1979. Currently, the hospital client response to incorporating universal design 

principles remains mixed. Generally, motivation such as a civil lawsuit, Department of 

Justice investigation, or Joint Commission survey is required before a hospital will focus 

on issues of equitable use. Or an internal champion chooses to lead the movement from 

within, either because he or she has a disability or because he or she has a relationship 

with someone with a disability. 

Hospitals are somewhat resistant to incorporating universal design principles into new 

construction, although the issue is generally not one of cost. There is little cost 

difference between building a facility with universal design features and one without. Not 

surprisingly, much of the resistance from hospital administrators is directed toward costs 

related to modifications of existing facilities. Terry sees the issue as one of perspective. 

“It’s more an issue of people wanting to do it, people seeing it as a customer service 

issue and a civil rights issue, and saying this is what we need to be doing and just going 

in that direction.” 

Absence of Federal Directives to States on Access, Accommodation, and 

Accountability 

Sylvia Yee J.D., Disability Rights Education & Defense Fund (DREDF) 

Sylvia Yee spoke broadly about federal mandates on access, accommodation, and 

accountability. Looking back to 1990, when the ADA was enacted, health care 

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accessibility was really a rallying point. We truly expected the ADA to achieve health 

care access. So the question is, “why are these problems still here?” 

Yee related an analogy to help answer the question. Let’s suppose someone brought in 

a truckload of gravel, sand, and spread it over the carpet in this room. They gave us 

each a pair of chopsticks and asked us to clear the floor. How far would we get with this 

task? What can we do but start picking up the biggest pieces first? Eventually we get to 

the smallest pieces, the sand and the gravel deeply embedded in the carpet now, and 

we realize we have the wrong tool. We can’t reach in. 

In our health care delivery system, we have entities like Kaiser Permanente in 

California. They represent the large entities that have hospitals, group clinics, and 

employed physicians. But then we also have solo physician practices and small group 

clinics. The majority of outpatient visits—89.3 percent, in fact—take place not in the 

large Kaiser Permanentes, but in private offices around the nation. These small 

practitioners are like the pebbles and grains of sand we’re trying to pick up with our 

chopsticks. 

Metzler v. Kaiser Permanente was groundbreaking litigation that challenged the level of 

health access at Kaiser Permanente facilities throughout California. It was a sweeping 

settlement that required the removal of architectural barriers, the installation of 

accessible medical equipment, and the implementation of policies and procedures to 

improve health access for people with disabilities. 

The Kaiser Permanente settlement propelled an unprecedented economy of scale for 

the entire health care system. As related earlier in Jim Terry’s presentation, accessible 

exam tables were priced at a premium—roughly $12,000 each—due to low sales 

volume. When Kaiser expressed interest in thousands of tables, the price dropped by 

75 percent to $3,000 to $4,000 a piece. As a result, small practitioners were able to 

enjoy the cost advantages made possible by Kaiser’s buying power. Yee added, “This is 

no small thing. This is a great thing.” 

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The 2001 Kaiser Permanente settlement and the 2005 Washington Hospital Center 

agreement with the Department of Justice are two innovative cases. But where are the 

others? How many of these significant lawsuits have there been? You see, we are 

picking up the biggest pebbles, the big rocks. We are not reaching down to that level of 

health care where the private visits—the majority of health care visits—are taking place. 

“The law is just a blunt tool for reaching this level,” Yee noted, “for changing the hearts 

and minds of an entire sector of society.” 

There’s another reason why the ADA has not met our expectation of health care 

access, and this aspect concerns the complexity of health care itself. U.S. health care is 

really a system of multiple and deep layers. While each of these layers—professional 

education, accreditation, coordination of care to name a few—in some way has an 

obligation under Titles II and III of the ADA to provide accommodation to people with 

disabilities, the law is really most explicit about physical standards. 

Programmatic access does not enjoy the same degree of clarity. We cannot expect the 

law to specify layers of detail on how a health care facility should receive a person with 

a disability, communicate information or engage in clinical practice. The law cannot and 

should not give us these details, but it can be an incentive for system change. Yee 

concluded, “While this presentation was billed as the absence of federal mandates, I 

believe there is a federal mandate. It is just that it’s a clearly limited one.” 

Definitions, Data Collection, and Disparity Initiatives 

Lisa Iezzoni, M.D., M.Sc., Harvard Medical School and Institute for Health Policy 

Dr. Lisa Iezzoni affirmed that we have not defined disability. We have no accepted 

definition of disability and no consistent system for measuring how many people have a 

disability or what the impact of disability is on health. The current monitoring system is 

insufficient in providing the basic data we need to measure and monitor disability. And 

we cannot change what we cannot measure. 

407 
The World Health Organization (WHO) worked on a definition of disability for more than 

10 years. At one point, WHO eliminated the word “disability” entirely, but eventually 

compromised by formulating the International Classification of Functioning, Disability 

and Health (ICF). The ICF uses disability as an umbrella term, which encompasses 

traditional concepts such as disease, disorder, activity, and participation levels. One of 

the very innovative pieces of the ICF, however, is the addition of environmental factors. 

The physical, social, and attitudinal environments are considered in the context of 

disability and disabling condition. For example, assistive devices like a wheelchair are 

included in the physical environment, and although the ICF did not define aspects such 

as poverty and education, these dynamics are included in social factors. 

A number of available databases use some but not all constructs found in the ICF. Dr. 

Iezzoni reviewed these national data sets. 

The U.S. Census Bureau captures considerable demographic information, data on 

physical and sensory impairments, and limitations in activity and participation, such as 

self-care or working outside the home. Regrettably, census data set falls short with 

regard to health care information. None of the data on physical impairment or limitation 

in activity, for instance, can be linked to health care. 

Two major data sources are administered through the National Center for Health 

Statistics—the National Health Interview Survey (NHIS) and the CDC’s Behavioral Risk 

Factors Surveillance System (BRFSS). Both the NHIS and BRFSS collect considerable 

data on difficulties in hearing, seeing, lifting, and so on, as well as activities of daily 

living, such as preparing meals or shopping. Additionally, health services utilization data 

is captured, particularly data relating to U.S. Preventive Services Taskforce 

recommendations. These data fall under the Federal Government’s Healthy People 

decennial health initiatives (e.g., “Healthy People 2010”). 

The Medical Expenditure Panel Survey (MEPS) is administered by the Agency on 

Healthcare Research and Quality (AHRQ). MEPS is a national longitudinal survey that 

enrolls and tracks individuals and families for a period of 2 years. Data are collected on 

408 
specific health services used by survey participants, frequency of use, cost, and payer 

sources, as well as on cost and scope of health insurance and satisfaction with health 

care experiences. 

The Centers for Medicare & Medicaid Services (CMS) have various mechanisms to 

collect significant amounts of beneficiary data. Aged beneficiaries represent the greatest 

share of the Medicare population (85 percent), followed by people under the age of 65 

who are eligible due to disability (14 percent) or end-stage renal disease (less than 

1 percent). The Medicare Provider Analysis & Review (MEDPAR) file contains claims 

data for inpatient hospital and skilled nursing facility services. MEDPAR is based on 

diagnostic and procedural codes, and can track inpatient history and patterns of care 

over time. A beneficiary panel survey is also conducted annually. The Medicare Current 

Beneficiary Survey (MCBS) is a nationally representative sample of aged, disabled, and 

institutionalized beneficiaries. This CMS data set is the most comprehensive source of 

information on health status, health care use and expenditures, and socioeconomic and 

demographic characteristics of the entire spectrum of Medicare beneficiaries. MCBS 

also tracks information about activities of daily living (ADLs), functional status and 

preventive services. 

Taken together, the current data collection efforts amass a significant amount of data on 

impairment, activity, and participation limitations. But data are limited to one slice of the 

ICF framework—impairment. We have no information on environmental factors. 

Whether someone uses a wheelchair or an augmentative communication device, or has 

low vision, is not collected. We have no systematic data on the physical or 

programmatic accessibility of homes or health care settings. We have not captured the 

attributes that really get to the social model of disability. 

Dr. Iezzoni summarized her lengthy record of health services research by saying that 

there are disparities in health care for people with disabilities—but we know nothing 

about why the disparity exists. Are people not receiving services because of a 

stigmatized attitude on the part of the physician, or because the patient preferred not to 

have the service? Available data sets are not designed to capture such aspects of care. 

409 
Dr. Iezzoni observed, “When women with disabilities under age 65 were diagnosed with 

early-stage breast cancer, they were much less likely than the general population to 

receive breast-conserving cancer surgery. They were much more likely to be treated 

with mastectomies. It could be the patient’s preference, but it could be other factors as 

well. We just don’t know.” 

In 1999, AHRQ received a congressional mandate to produce annual reports to the 

nation on prevailing disparities in health care delivery. The annual National Health Care 

Disparities Report (NHDR) describes disparities in health care associated with race, 

ethnicity, gender, age, income, geography, and the existence of disability and chronic 

illness. The report serves a number of purposes, such as demonstrating the validity of 

concerns regarding disparities in health and documenting whether disparities in care are 

stable, improving, or declining over time. The 2007 NHDR was recently released and 

included reports on exercise counseling for obese adults, inappropriate medication use 

by the elderly, delays in necessary care, and delays in illness and injury care for 

children with special health care needs. 

Dr. Iezzoni expressed her amazement at the relative dearth of information in the 2007 

report, considering the scale of priority populations and disparities in existence. But 

NHDR, which relies on the very databases just described (particularly MEPS and 

NHIS), is limited by the confines of the available data systems. Aside from inadequate 

definitions of disability, few reporting measures get at the relationship between 

individuals and their surrounding environments (i.e., cultural, social, natural, and 

architectural). 

The 2007 IOM report, “The Future of Disability in America”, recommends that all national 

data collection efforts adopt ICF conceptual framework for defining disability. Additional 

recommendations advise the National Center for Health Statistics to “improve scope and 

quality of data on disability and its causes and consequences” and note the need for a 

national disability monitoring system. The latter two recommendations are nearly identical 

to those made in the IOM’s 1991 report “Disability in America.” Dr. Iezzoni concluded, 

“We haven’t gotten far since that time. So little has happened. Unfortunately.” 

410 
411 

NCD Health Care Summit Planning Committee, October 2007–April 2008 

Mary Lou Breslin 

Senior Policy Advisor 

Disability Rights Education and Defense 

Fund (DREDF) 

2212 Sixth Street 

Berkeley, CA 94710 

510.644.2555 

Carmen A. Cicchetti, M.Ed., M.A. 

Business Support Manager 

The Donnelley Family Disability Ethics 

Program 

The Rehabilitation Institute of Chicago 

345 East Superior Street, Room 1374 

Chicago, IL 60611 

312.238.1119 

ccicchetti@ric.org

Susan Henderson 

Executive Director 

Disability Rights Education and Defense 

Fund (DREDF) 

2212 Sixth Street 

Berkeley, CA 94710 

510.644.2555, ext. 225 

shenderson@dredf.org

Lisa I. Iezzoni, M.D., M.Sc. 

Professor of Medicine, Harvard Medical 

School 

Associate Director, Institute for Health 

Policy 

Massachusetts General Hospital 

50 Staniford Street, Room 901B 

Boston, MA 02114 

617.643.0657 

liezzoni@partners.org

Kristi L. Kirschner, M.D. 

Coleman Foundation Chair in Rehabilitation 

Medicine 

Director, The Donnelley Family Disability 

Ethics Program 

The Rehabilitation Institute of Chicago 

 345 East Superior Street, Room 1136 

Chicago, IL 60611 

312.238.4742 

kkirschner@ric.org 

Nancy Mudrick, Ph.D. 

Professor, School of Social Work 

College of Human Ecology 

Sims Hall, 4th Floor 

Syracuse University 

Syracuse, NY 13244-1230 

315.443.5564 

kkirschner@ric.org

Judy Panko Reis, M.A., M.S. 

Director, Women with Disabilities Center 

The Rehabilitation Institute of Chicago 

345 East Superior Street, Room 164 

Chicago, IL 60611 

312.238.1051 

jreis@ric.org 

Mary Margaret Sharp-Pucci, Ph.D., M.P.H. 

Managing Member 

Sharp Health Strategies, LLC 

1120 Crestview Drive 

Batavia, IL 60510 

630.667.8365 

mmsp@sharpstrat.com

Silvia Yee, J.D 

Staff Attorney 

Disability Rights Education and Defense Fund 

2212 Sixth Street 

Berkeley, CA 94710 

510.644.2555, ext. 234 

mmsp@sharpstrat.com
412 
APPENDIX G. Mission of the National Council on 

Disability 

Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency, composed 

of 15 members appointed by the President, by and with the consent of the U.S. Senate. 

The purpose of the NCD is to promote policies, programs, practices, and procedures 

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 carry out this mandate we gather public and stakeholder input, including that 

received at our public meetings held around the country; review and evaluate federal 

programs and legislation; and provide the President, Congress and federal agencies 

with advice and recommendations. 

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. 

413 
● 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 

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. 

414 
415 

● Providing advice regarding priorities for the activities of the Interagency 

Disability Coordinating Council and reviewing the recommendations of this 

council for legislative and administrative changes to ensure that such 

recommendations are consistent with NCD’s purpose of promoting the full 

integration, independence, and productivity of individuals with disabilities. 

● Preparing and submitting to the President and Congress an annual report titled 

National Disability Policy: A Progress Report. 

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. 
416 
417 

Endnotes 

1

 Matthew Brault, “Americans with Disabilities: 2005,” Current Population Reports

(Washington, DC: U.S. Census Bureau, 2008), p. 3. 

2

 Ibid., p. 5. 

3

 C. Boult, M. Altmann, D. Gilbertson, C. Yu, and R. L. Kane, “Decreasing Disability in 

the 21st Century: The Future Effect of Controlling Six Fatal and Nonfatal Conditions,” 

American Journal of Public Health 86, no.10 (1996), pp. 1388–1393. 

4

 J. Waldrop and S. M. Stern, Disability Status: 2000—Census 2000 Brief (Washington, 

DC: U.S. Bureau of the Census), p. 2. 

5

 Centers for Disease Control and Prevention, “Public Health and Aging: Projected 

Prevalence of Self-Reported Arthritis or Chronic Joint Symptoms Among Persons Aged 

> 65 Years—United States, 2005–2030,” Morbidity and Mortality Weekly Report 52, no. 

21 (2003), p. 489. 

6

 L. I. Iezzoni and V. A. Freedman, “Turning the Disability Tide: the Importance of 

Definitions,” Journal of the American Medical Association 299(3), (2008), pp. 332–334. 

7

 Kaiser Family Foundation, “Health Care for Americans with Disabilities,” 

<www.kff.org/medicaid/7202.cfm> (accessed April 19, 2008). 

8

 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), p. 3. 

9

 M. T. Neri and T. Kroll, “Understanding the Consequences of Access Barriers to 

Health Care: Experiences of Adults with Disabilities,” Disability and Rehabilitation, 25, 

no. 2 (2003), pp. 85–96. 

10 Included are eight agencies within the Department of Health and Human Services 

(HHS), the lead Federal agency for health care, health research, professional training, 

and health promotion and disease prevention. These are the Administration for Children 

and Families (ACF), the Administration on Aging (AoA), the Agency for Healthcare 

Research and Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), 

the Centers for Medicare & Medicaid Services (CMS), the Health Resources and 

Services Administration (HRSA), the National Institutes of Health (NIH), and the 

Substance Abuse and Mental Health Services Administration (SAMHSA). NCD also 

reviewed the 33 institutes and centers that comprise NIH, and examined the activities of 

the Office of the Surgeon General and the Office on Disability, which reside within the 

Office of the Secretary of HHS. NCD reviewed the activities of the National Institute on 

Disability and Rehabilitation Research (NIDRR), an agency of the Department of 

Education, as well as the non-Federal Institute of Medicine of the National Academies of 

Science, whose mission is to serve as adviser to the nation to improve health. 

11 Activities included (1) a review of the mission statement, strategic plan, annual and 

other significant reports, and major program goals and objectives for each agency to 
418 

determine whether health care disparities for people with disabilities had been identified 

as an area in which activities would be undertaken; (2) a keyword search of the agency 

Web sites to identify documents or other information that would reveal an agency’s 

involvement in health care disparity research or other health or health care activities on 

behalf of people with disabilities that might not be readily apparent in the agency’s 

priority program areas, goals, or objectives; and (3) key informant and informational 

interviews with certain agency representatives. 

12 The datasets selected for examination were those listed as primary sources for the 

benchmarks in “Healthy People 2010” and those that contained a large number of 

health care questions. For these datasets, NCD examined the questionnaires, the 

documentation, and recent published works that used these datasets. NCD also 

reviewed reports by others who assessed the potential of Federal datasets, 

congressional testimony, Government Accountability Office reports, and some Webinar 

transcripts. Two key assessments are the NCD Indicators Report (2008) and the 

University of California, San Francisco Disability Data Inventory (2005). Nine 

researchers were interviewed who had published papers on health disparities and 

people with disabilities or other aspects of health care utilization, satisfaction with care, 

or the health care experience of people with disabilities. 

13 One or more key leaders in each program were interviewed to determine how the 

program came into being; what community need is being met; the extent to which the 

program is stable and fully integrated into a broader organization, if applicable; and how 

program beneficiaries rate the service they receive. Written evaluations and other 

related documentation were also obtained for each program that is reported as an 

effective practice, and in some cases NCD conducted client interviews to gain more 

insight into the program. Programs that do not meet all these criteria but appear to offer 

innovative or noteworthy services that meet specific health care needs of people with 

disabilities or a subgroup of people with disabilities are reported as “practices with 

potential.” 

14 World Health Organization, International Classification of Functioning, Disability and 

Health (ICF) (Geneva: World Health Organization, 2001). 

15 Brault, “Americans with Disabilities: 2005,” 2008, p. 14. 

16 A. Stratton, M. Hynes, and A. Nepaul, “Issue Brief–Defining Health Disparities,” 

Connecticut Health Disparities Project, Connecticut Department of Public Health, 

Summer 2007, <www.ct.gov/dph/lib/dph/hisr/pdf/defining_health_disparities.pdf> 

(accessed August 20, 2008); R.B. Warnecke et al., “Approaching Health Disparities 

from a Population Perspective: The National Institutes of Health Centers for Population 

Health and Health Disparities,” American Journal of Public Health, 98, no. 9 (2008), pp. 

1608–1615; and O. Carter-Pokras and C. Baque, “What Is a ‘Health Disparity’?” Public 

Health Reports, 117 (October 2002), pp. 30–90. 

17 B. Altman and A. Bernstein, Disability and Health in the United States, 2001–2005, 

(Hyattsville, MD: National Center for Health Statistics, 2008). 
419 

18 Please note that the study’s methods for defining disability differ somewhat from the 

methods used by the 2000 U.S. Census. For more information about the disability 

questions from the 2000 Census, see <www.census.gov/prod/2003pubs/c2kbr-17.pdf>. 

19 Altman and Bernstein, in Disability and Health in the United States, say, “Basic 

actions difficulty captures limitations or difficulties in movement and sensory, emotional, 

or mental functioning that are associated with some health problem. NHIS data do not 

cover the full range of functional levels for all classes of basic actions..., but the 

available questions can identify [the following] range of difficulty levels in core areas of 

functioning: [1] movement (walking, standing, bending or kneeling, reaching overhead, 

and using the hands and fingers); [2] sensory functioning (the ability of a person to see 

and hear what is going on around him or her); [3] selected elements of emotional 

functioning—in particular, feelings that interfere with accomplishing daily activities; [4] 

Important elements in cognitive functioning, specifically difficulties with remembering or 

experiencing confusion.” p. 5. 

20 Altman and Bernstein, in Disability and Health in the United States, say, “Complex 

activity limitation describes limitations or restrictions in a person’s ability to participate 

fully in social role activities such as working or maintaining a household. 

Complex activity consists of the tasks and organized activities that, when executed, 

make up numerous social roles. Complex activity performance requires the execution of 

a combination of more than one of the basic actions. NHIS obtains information on many 

(but not all) complex activities that comprise participation in social roles, including the 

following: [1] difficulties experienced with social and leisure activities, represented in 

these data by questions about attending movies or sporting events, visiting with friends, 

pursuing hobbies, or engaging in relaxation activities; [2] perceived ability to work, which 

is a core aspect of social participation for the majority of the U.S. population and is 

represented by respondents’ self-defined limitations in the kind or amount of work they 

can do or their inability to work at a job or business; [3] maintaining independence, 

including self-care and the ability to carry out activities associated with maintaining a 

household, such as shopping, cooking, and taking care of bills (measures are based on 

questions concerning ADL and IADL). These are the simplest of the complex activities, 

but limitations in doing them usually reflect the most severe difficulties in basic actions.” 

p. 8. 

21 Ibid., p. 27. 

22 Ibid., p. 34. 

23 Ibid, p. 37. 

24 Ibid. 

25 Ibid. 

26 Ibid., p. 47. 

27 Ibid., p. 44. 

28 Ibid., p. 56. 

29 Ibid. 
420 

30 Mari-Lynn Drainoni et al., “Cross-Disability Experiences of Barriers of Health-Care 

Access,” Journal of Disability Policy Studies 17, no. 2 (2006), p. 102. 

31 “Understanding the Health Care Needs and Experiences of People with Disabilities: 

Findings from a 2003 Survey,” Henry J. Kaiser Family Foundation, 

<http://www.kff.org/medicare/upload/Understanding-the-Health-Care-Needs-andExperiences-of-People-with-Disabilities-Findings-from-a-2003-Survey.pdf> (accessed 

July 6, 2009) 

32 “Medicaid: A Primer—Key Information on the Health Program for Low-Income 

Americans,” Henry J. Kaiser Family Foundation, Kaiser Commission on Medicaid and 

the Uninsured, March 2007, <www.kff.org/medicaid/upload/Medicaid-A-Primer-pdf.pdf> 

(accessed September 3, 2008), p. 8. 

33 Ibid., p.6. 

34 Jeffrey S. Crowley and Risa Elias, “Medicaid’s Role for People with Disabilities,” 

Henry J. Kaiser Foundation, Kaiser Commission on Medicaid and the Uninsured 

(August 2003), p. 12, <http://aging.senate.gov/minority/_files/hr144jc.pdf>.

35 “Uninsured Americans with Chronic Health Conditions: Key Findings from the 

National Health Interview Survey,” Robert Wood Johnson Foundation, May 2005, p. 4., 

<www.urban.org/UploadedPDF/411161_uninsured_americans.pdf>.

36 H. Stephen Kaye, Disability Watch: The Status of People with Disabilities in the 

United States, vol. 2 (San Francisco: Disability Rights Advocates, Inc., 2001) p. 9. 

37 “The Uninsured and the Difference Health Insurance Makes,” Henry J. Kaiser 

Foundation, Kaiser Commission on Medicaid and the Uninsured, September 2008, 

<www.kff.org/uninsured/upload/1420-10.pdf> (accessed October 2, 2008). 

38 Crowley and Elias, “Medicaid’s Role for People with Disabilities,” p. 11. 

39 “California Health Insurance Plans–DME Coverage by 214 Health Plans As of 

February 2007,” Disability Rights Education and Defense Fund, 

<http://dredf.org/healthcare/CADME07_survey_update_mlb.pdf> (accessed August 

2003). 

40 National Council on Disability, Implementation of the Americans with Disabilities Act: 

Challenges, Best Practices, and New Opportunities for Success (Washington, DC: 

NCD, July 26, 2007), p. 30. 

41 Marty Wyngaarden Krauss, Stephen Gulley, Mark Sciegaj, and Nora Wells, “Access 

to Specialty Medical Care for Children with Mental Retardation, Autism, and Other 

Special Health Care Needs,” Mental Retardation 41, no. 5 (2003). 

42 Kaye, Disability Watch, pp. 7–9, 11–12. 

43 Ibid., p. 13. 

44 Crowley and Elias, “Medicaid’s Role for People with Disabilities,” p. 11. 

45 Carmen DeNavas-Walt, Bernadette D. Proctor, and Jessica C. Smith, “U.S. Census 

Bureau, Current Population Reports, P60-235,” Income, Poverty, and Health Insurance 
421 

Coverage in the United States: 2007 (Washington, DC: U.S. Government Printing 

Office, 2008), p. 19. <www.census.gov/prod/2008pubs/p60-235.pdf> (accessed April 4, 

2009). 

46 “The Uninsured: A Primer: Key Facts About Americans Without Health Insurance,” 

Kaiser Commission on Medicaid and the Uninsured, Henry J. Kaiser Family Foundation, 

October 2008. <www.kff.org/uninsured/upload/7451-04.pdf> (accessed April 4, 2009). 

47 Ibid. 

48 Gloria L. Krahn and Charles E. Drumm, “Translating Policy Principles into Practice to 

Improve Health Care Access for Adults with Intellectual Disabilities: A Research Review 

of the Past Decade,” Mental Retardation and Developmental Disabilities Research 

Reviews 13 (2007), pp. 160–168. 

49 J. M. Glionna, “Suit Faults Kaiser’s Care for Disabled; Courts, Advocates Say 

Provider Fails to Give Equal and Adequate Treatment to the Handicapped. Chain Says 

It Complies with Disabilities Act,” Los Angeles Times (record edition), July 27 2000, p. 3. 

50 One Degree of Separation: Paralysis and Spinal Cord Injury in the United States

(Short Hills, NJ: Christopher and Dana Reeve Foundation, April 2008). 

51 Centers for Disease Control and Prevention, “Women with Disabilities,” 

<http://www.cdc.gov/ncbddd/women/default.htm> (accessed April 3, 2008); Office on 

Disability and Office on Women’s Health, Breaking Down Barriers to Health Care for 

Women with Disabilities: A White Paper from a National Summit (Washington, DC: 

Department of Health and Human Services, 2004). 

52 “Health Care for Minority Women,” Agency for Healthcare Research and Quality, 

Department of Health and Human Services, <www.ahrq.gov/research/minority.htm> 

(accessed September 17, 2008). 

53 Brault, “Americans with Disabilities: 2005,” 2008, p. 5. 

54 M. Lethbridge-Çejku, J. S. Schiller, and L. Bernadel, “Summary Health Statistics for 

U.S. Adults: National Health Interview Survey, 2002,” National Center for Health 

Statistics. Vital Health Statistics 10, no. 222 (2004). 

55 U.S. Census Bureau. Characteristics of the Civilian Non-institutionalized Population 

by Age, Disability Status, and Type of Disability 2000. (Washington, DC: 2003). 

56 Brault, “Americans with Disabilities: 2005,” 2008, p. 5. 

57 “Improving the Health and Wellness of Women with Disabilities: A Symposium to 

Establish a Research Agenda,” Executive Summary, Center for Research on Women with 

Disabilities (CROWD), Baylor College of Medicine, <www.bcm.edu/crowd/?pmid=6107> 

(accessed March 22, 2008). 

58 Susan L. Parish and M. Jennifer Ellison-Martin, “Health-Care Access of Women 

Medicaid Recipients: Evidence of Disability-based Disparities,” Journal of Disability 

Policy Studies 18, no. 2 (2007), pp. 109–116.\ 

59 Margaret A. Nosek, “Women, Disability, and Healthcare Reform,” presentation, 

National Women’s Law Center, June 12, 2008. 
422 

60 Altman and Bernstein, Disability and Health in the United States, 2008. 

61 “Improving the Health and Wellness of Women with Disabilities,” CROWD. 

62 Frances Chevarley et al., “Health, Preventive Health Care, and Health Care Access 

Among Women with Disabilities in the 1994–995 National Health Interview Survey, 

Supplement on Disability,” Women’s Health Issues 16 (2006), pp. 297–312. 

63 Office on Disability and Office on Women’s Health, Breaking Down Barriers, 2004. 

64 Altman and Bernstein, Disability and Health in the United States, 2003. 

65 Kristina Hanson, Tricia Neuman, and Molly Voris, “Understanding the Health-Care 

Needs and Experiences of People with Disabilities, Findings from a 2003 Survey,” 

Henry J. Kaiser Family Foundation. <www.kff.org/medicare/6106.cfm> (accessed March 

27, 2008). 

66 Altman and Bernstein, Disability and Health in the United States, 2008.

67 According to CROWD, nearly two-thirds of those with functional limitations who live in 

the community rely exclusively on family, friends, and volunteers for personal 

assistance services. 

68 “Health Care: Health Insurance,” CROWD, Baylor College of Medicine. 

<www.bcm.edu/crowd/?PMID=1334> (accessed April 2, 2008). 

69 Sandra A. Welner, “Gynecologic Care and Sexuality Issues for Women with 

Disabilities,” Sexuality and Disability 15, no. 1 (1997). 

70 H. Becker, A. Stuifbergen, and M. Tinkle, “Reproductive Health Care Experiences of 

Women with Physical Disabilities: A Qualitative Study,” Archives of Physical and 

Medical Rehabilitation 12, no. 5 (1997): S26–S30. 

71 J. Panko Reis, M. L. Breslin, L. I. Iezzoni, and K. Kirscher, It Takes More Than 

Ramps to Solve the Healthcare Crisis for People with Disabilities (Chicago: 

Rehabilitation Institute of Chicago, 2004).

72 A.G. Steinberg et al., “Deaf Women: Experiences and Perceptions of Healthcare 

System Access,” Journal of Women’s Health 11, no. 8 (2002), p. 733. 

73 N. I. Gavin, M. B. Benedict, and E. K. Adams, “Health Service Use and Outcomes 

Among Disabled Medicaid Pregnant Women,” Women’s Health Issues 16, no. 6 (2006), 

pp. 313–322. 

74 Susan L. Parish and Jungwon Huh, “Health Care for Women with Disabilities: 

Population-Based Evidence of Disparities,” Health and Social Work 32, no. 1 (2006), pp. 

7–15. 

75 Rosemary B. Hughes, “Achieving Effective Health Promotion for Women with 

Disabilities,” Family Community Health 1 (2006), 44S–51S. 

76 W. Wei, P. A. Findley, and U. Sambamoorthi, “Disability and Receipt of Clinical 

Preventive Services among Women,” Women’s Health Issues 46, no. 6 (2006), pp. 

286–296. 
423 

77 N. Mele, J. Archer, and B. D. Pusch, “Access to Breast Cancer Screening Services 

for Women with Disabilities,” Journal of Obstetrics and Gynecology—Neonatal Nursing 

34, no. 4 (2005), pp. 453–464. 

78 Drainoni et al., “Cross-Disability Experiences of Barriers,” pp. 101–115. 

79 Ellen P. McCarthy, Long H. Ngo, Richard G. Roetzheim, Thomas N. Chirikos, Donglin 

Li, Reed E. Drews, and Lisa I. Iezzoni, “Disparities in Breast Cancer Treatment and 

Survival for Women with Disabilities,” Annals of Internal Medicine 145, no. 9 (2006): 

637-645, <www.annals.org/cgi/content/abstract/145/9/637> (accessed March 9, 2009).

80 Kristi L. Kirschner, Mary Lou Breslin, and Lisa I. Iezzoni, “Structural Impairments That 

Limit Access to Health Care for Patients with Disabilities,” Journal of the American 

Medical Association 297 (2007), pp. 1121–1125. 

81 R. G. Roetzheim, T. N. Chirikos, K. J. Wells, E. P. McCarth, L. H. Ngo, D. Li, R. E. 

Drews, and L. I. Iezzoni, “Managed Care and Cancer Outcomes for Medicare 

Beneficiaries with Disabilities,” American Journal of Managed Care, 14, no. 5 (May 

2008), pp. 287–296. 

82 Office on Disability and Office on Women’s Health, Breaking Down Barriers, p. 4. 

83 A. G. Steinberg et al., “Deaf Women: Experiences and Perceptions of Healthcare 

System Access,” Journal of Women’s Health 11, no. 8 (2002), pp. 729–741. 

84 Lisa I. Iezzoni et al., ”Mobility Impairments and Use of Screening and Preventive 

Services,” American Journal of Public Health 90, no. 6 (2000), p. 140; Lisa I. Iezzoni et 

al., “Use of Screening and Preventive Services Among Women with Disabilities,” 

American Journal of Medical Quality 16, no. 4 (2001), pp. 135–144. 

85 Leighton Chan et al., “Do Medicare Patients with Disabilities Receive Preventive 

Services? A Population-based Study,” Archives of Physical Medical Rehabilitation 80, 

no. 6 (1999), pp. 642–646. 

86 Altman and Bernstein, Disability and Health in the United States. 

87 Drainoni et al., “Cross-Disability Experiences of Barriers,” pp. 101–115. 

88 Kirschner et al., “Structural Impairments,” 2007. Legal actions that have targeted 

health care professionals and organizations include about 157 cases settled by the 

Department of Justice between 1994 and 2006. 

89 Theresa Capriotti, “Inadequate Cardiovascular Disease Prevention in Women with 

Physical Disabilities,” Rehabilitation Nursing 31, no. 3 (2006), pp. 95–101. 

90 Office on Disability and the Office on Women’s Health, Breaking Down Barriers.

91 Lisa M. Harmer, “Health Care Delivery and Deaf People: Practice, Problems, and 

Recommendations for Change,” Journal of Deaf Studies and Deaf Education 4, no. 2 

(1999), pp. 74–110. 

92 C. A. Schoenborn and K. Heyman, “Health Disparities Among Adults with Hearing 

Loss in the United States, 2000–2006,” National Center for Health Statistics. 

<www.cdc.gov/nchs/products/pubs/pubd/hestats/hearing00-06/hearing00-06.html> 
424 

(accessed June 27, 2008). Hearing status is based on the question “Which statement 

best describes your hearing without a hearing aid: good, a little trouble, a lot of trouble, 

deaf?” 

93 S. Barnett and P. Franks, “Healthcare Utilization and Adults Who Are Deaf: 

Relationship with Age at Onset of Deafness,” Health Services Research 37, no. 1 

(2002), pp. 105–120. 

94 University of Rochester Medical Center, <www.urmc.edu/pr/News/story.cfm?id=623> 

(accessed April 14, 2008); Harmer, “Health Care Delivery”; and P. W. Reis, “Prevalence 

and Characteristics of Persons with Hearing Trouble: United States, 1990–1991,” Vital 

Health Statistics 10, no. 188 (1994). 

95 Schoenborn and Heyman, “Health Disparities Among Adults with Hearing Loss.” 

96 University of Rochester Medical Center. 

97 Barnett and Franks, “Healthcare Utilization.” 

98 Lisa Iezzoni et al., “Communicating About Health Care: Observations from Persons 

Who are Deaf or Hard of Hearing,” Annals of Internal Medicine 140, no. 5 (2004), pp. 

356–362. 

99 A. G. Steinberg et al., “Healthcare System Accessibility: Experiences and Perceptions 

of Deaf People,” Journal of General Internal Medicine 3 (2006), pp. 260–266. 

100 Schoenborn and Heyman, “Health Disparities.” 

101 D. Guthmann and K. Sandberg, “Assessing Substance Abuse Problems in Deaf and 

Hard-of-Hearing Individuals,” American Annals of the Deaf 143, no. 1 (1998), pp. 14–21. 

102 Schoenborn and Heyman, “Health Disparities.” 

103 Harmer, “Health Care Delivery.” 

104 Barnett and Franks, “Healthcare Utilization.” 

105 Ibid. 

106 Iezzoni et al., “Communicating About Health Care.” 

107 University of Rochester Medical Center. 

108 Paul C. Ajamian, “Don’t turn a deaf ear; patients with vision loss are also more likely 

to have hearing loss. As a primary-care doctor, here’s how you can help them.” 

(Comanagement Q+A), Review of Optometry 145, no. 7 (July 15, 2008), p. 81. 

109 “Guidelines for Services to Deaf and HOH Adults,” Delmarva Foundation for Medical 

Care, Inc., Gallaudet University, and the Health Care Financing Administration. 

<www.hearinglossweb.com/Issues/Access/Medical/delc.htm> (accessed March 2, 

2009). 

110 Arthur Wingfield, Patricia A. Tun, and Sandra L. McCoy, “Hearing Loss in Older 

Adulthood,” Current Directions in Psychological Science 14, no. 3 (2005), pp. 144–148. 

111 Steinberg et al., “Healthcare System.” 
425 

112 Teri Hedding, deaf access program manager, Mt. Sinai Hospital, Chicago, Illinois, 

email correspondence (August 16, 2008). 

113 Iezzoni et al., “Communicating About Health Care”; Steinberg et al., “Healthcare 

System.” 

114 Steinberg et al., “Healthcare System.” 

115 Steinberg et al., “Healthcare System”; Iezzoni et al., “Communicating About Health 

Care.” 

116 Ibid. 

117 Drainoni et al., “Cross-Disability Experiences of Barriers,” pp. 101–115. 

118 Ibid. 

119 Steinberg et al., “Healthcare System.” 

120 D. A. Ebert and P. S. Heckerling, “Communication with Deaf Patients: Knowledge, 

Beliefs, and Practices of Physicians,” Journal of American Medical Association 273, no. 

3 (1995), pp. 227–229. 

121 J. M. Orsi et al., “Cancer Screening Knowledge, Attitudes, and Behaviors Among 

Culturally Deaf Adults: Implications for Informed Decision Making,” Cancer Detection 

Prevention 31, no. 6 (2007), pp. 474–479. 

122 A. Steinberg, V. Sullivan, and R. Loew, “Cultural and Linguistic Barriers to Mental 

Health Services: The Deaf Consumer’s Perspective,” American Journal of Psychiatry 

157, no. 7 (1998), pp. 982–984. 

123 Teri Hedding, email correspondence (August 16, 2008). 

124 D. M. Feldman and A. Gum, “Multigenerational Perceptions of Mental Health 

Services Among Deaf Adults in Florida,” American Annals of the Deaf 152, no. 4 (2007), 

pp. 391–397. 

125 Defined as an activity limitation attributed to a “hearing problem” in H. Stephen Kaye, 

unpublished tabulations from the 2007 National Health Interview Survey, Disability 

Statistics Center, University of California San Francisco. 

126 The numbers for public coverage add up to more than 100 percent because some 

people have both private and public coverage. See Kaye, unpublished tabulations. Note 

that these numbers are similar to those in the 2005 Cornell study, which found that of 

those with sensory disabilities (defined as either blindness or deafness or a “lot of 

trouble” hearing without special equipment), 54. 87 percent had private insurance, 22.29 

percent had public insurance, and 5.33 percent had public and private insurance. See 

Benjamin Harris, Gerry Hendershot, and David C. Stapleton, A Guide to Disability 

Statistics from the National Health Interview Survey (Ithaca, NY: Employment and 

Disability Institute, 2005), p. 64. 

127 Steinberg et al., “Cultural and Linguistic Barriers.” 

128 Improving Access to Health and Mental Health for Chicago’s Deaf Community: A 

Survey of Deaf Adults (Chicago: Sinai Health System and Advocate Health Care, 2004); 
426 

Helen Margellos-Anast, Melanie Estarziau, and Gary Kaufman, “Cardiovascular 

Disease Knowledge Among Culturally Deaf Patients in Chicago,” Preventive Medicine

42 (2006), pp. 235–239. 

129 M. F. Goldstein, E. A. Eckhardt, and P. Joyner, “An HIV Knowledge and Attitude 

Survey of Deaf U.S. Adults,” Deaf Worlds 22, no. 1 (2006). 

130 J. L. Luckner and B. R. Gonzales, “What Deaf and Hard-of-Hearing Adolescents 

Know and Think about AIDS,” American Annals of the Deaf 138, no. 4 (1993), p. 338–

342. 

131 A. O’Hearn, “Deaf Women’s Experiences and Satisfaction with Prenatal Care: A 

Comparative Study,” Family Medicine 38, no. 10 (2006), pp. 712–716. 

132 A. G. Steinberg et al., “Deaf Women: Experiences and Perceptions of Healthcare 

System Access,” Journal of Women’s Health 11, no. 8 (2002), pp. 729–741. 

133 O’Hearn, “Deaf Women’s Experiences.” 

134 Orsi et al., “Cancer Screening Knowledge, Attitudes, and Behaviors Among 

Culturally Deaf Adults.” 

135 Sommer R. Kaskowitz III et al., “Bringing Prostate Cancer Education to Deaf Men,” 

Cancer Detection & Prevention 30, no. 5 (2006), pp. 439–448. 

136 B. A. Berman et al., “Do Deaf and Hard-of-Hearing Youth Need Anti-tobacco 

Education?” American Annals of the Deaf 152, no. 3 (2007), pp. 344–355.

137 R. N. Bailey et al., “Visual Impairment and Eye Care Among Older Adults – Five 

States, 2005,” Morbidity and Mortality Weekly 55 (2006): 1321–1326. 

138 Rosemary Janiszewski et al., “The Low Visibility of Low Vision: Increasing 

Awareness Through Public Health Education,” Journal of Visual Impairment and 

Blindness, Vision Loss and Public Health Supplement 100 (2006). 

139 National Eye Institute, “Causes and Prevalence of Visual Impairment Among Adults 

in the United States,” Archives of Ophthalmology 122 (2004), pp. 477–485. 

<http://www.nei.nih.gov/eyedata/pbd1.asp> (accessed July 31, 2009). 

140 Bailey, “Visual Impairment.” 

141 J. R. Pleis and M. Lethbridge-Çejku, “Summary Health Statistics for U.S. Adults: 

National Health Interview Survey, 2006,” Vital Health Statistics 10, no. 225 (2007), pp. 

1–153; Janiszewski et al., “The Low Visibility of Low Vision.” Approximately 3.3 million 

people over age 40 are either blind or have vision impairment. 

142 Anthony F. Di Stefano et al., “Community Services, Needs, and Resources in Visual 

Impairment: A 21st Century Public Health Perspective,” Journal of Visual Impairment 

and Blindness, Vision Loss and Public Health Supplement 100 (2006); Asel Ryskulova 

et al., “Self-Reported Age-Related Eye Diseases and Visual Impairment in the United 

States: Results of the 2002 National Health Interview Survey,” American Journal of 

Public Health 98:3 (2008). Among people aged 18 to 44, the prevalence of vision 

impairments is about 5.7 percent, while the rate is approximately 21.7 percent among 

people who are 75 years of age or older. 
427 

143 Corinne Kirchner and Emilie Schmeidler, “Life Chances and Ways of Life: Statistics 

on Race, Ethnicity, and Visual Impairment,” Journal of Visual Impairment and Blindness

93 (1999), p. 5; Susan V. Ponchillia, “Diabetes Management and Visual Impairment,” 

Journal of Visual Impairment and Blindness, Vision Loss and Public Health Supplement

100 (2006), pp. 867–871. 

144 Kirchner and Schmeidler, “Life Chances and Ways of Life”; Ryskulova et al., “SelfReported Age-Related Eye Diseases.” 

145 Pleis and Lethbridge-Çejku, “Summary Health Statistics.” 

146 Kirchner and Schmeidler, “Life Chances and Ways of Life.” 

147 Ibid. 

148 Bonnie L. O’Day, Mary Killeen, and Lisa I. Iezzoni, “Improving Health Care 

Experiences of Persons Who Are Blind or Have Low Vision: Suggestions from Focus 

Groups,” American Journal of Medical Quality 19 (2004), p. 193. 

149 John E. Crews, Corinne Kirchner, and Donald J. Lollar, “The View from the 

Crossroads of Public Health and Vision (Re)habilitation,” Journal of Visual Impairment 

and Blindness, Vision Loss and Public Health Supplement 100 (2006), pp. 773–779. 

150 John E. Crews, Gwen C. Jones, and Julie H. Kim, “Double Jeopardy: The Effects of 

Comorbid Conditions among Older People with Vision Loss,” Journal of Visual 

Impairments and Blindness, Vision Loss and Public Health Supplement 100 (2006), pp. 

824–848. 

151 Susan V. Ponchillia, “Adequacy of the Mental Health System in Meeting the Needs 

of Adults Who Are Visually Impaired,” Journal of Visual Impairment and Blindness, 

Vision Loss and Public Health Supplement 100 (2006), pp. 871–874. 

152 Ibid. 

153 O’Day et al., “Improving Health Care.” 

154 John E. Crews and Vincent A. Campbell, “Vision Impairment and Hearing Loss 

Among Community-Dwelling Older Americans: Implications for Health and Functioning,” 

American Journal of Public Health 94 (2004), p. 5. 

155 Pleis and Lethbridge-Çejku, “Summary Health Statistics.” 

156 O’Day et al., “Improving Health Care.” 

157 Drainoni et al., “Cross-Disability Experiences of Barriers,” pp. 101–115. 

158 O’Day et al., “Improving Health Care.” 

159 Crews and Campbell, “Vision Impairment.” 

160 O’Day et al., “Improving Health Care.” 

161 Ibid. 

162 Ibid. 

163 Ibid. 
428 

164 Ann Williams, “A Focus Group Study of Accessibility and Related Psychosocial 

Issues in Diabetes Education for People with Visual Impairment,” The Diabetes 

Educator 28, no. 6 (2002), pp. 999–1007. 

165 T. Duncan and D. Burton, “Diabetes Management and Visual Impairment: Are 

People Aware of Accessible Home Blood Pressure Monitors?” Access Word 6, no. 1 

(January 2005). 

166 Williams, “A Focus Group Study.” 

167 AFB Access World, Access to Prescription Information with ScripTalk, Product 

Evaluation. <http://www.afb.org/afbpress/pub.asp?DocID=aw100106> (accessed July 

31, 2009). 

168 Williams, “A Focus Group Study.” 

169 Di Stefano et al., “Community Services.” 

170 L. Lidoff, “Moving Vision-related Rehabilitation into the U.S. Health Care 

Mainstream,” Journal of Visual Impairment and Blindness 91, no. 2 (March/April 1997), 

p. 107. 

171 Di Stefano et al., “Community Services.” 

172 Lylas Mogk, Gale R. Watson, and Michael Williams, “A Commentary on the Low 

Vision Rehabilitation Demonstration Project,” Journal of Visual Impairment and 

Blindness 102, no. 2 (2008), pp. 69–75. 

173 Di Stefano et al., “Community Services.” 

174 James H. Rimmer, “Building Inclusive Physical Activity Communities for People with 

Vision Loss,” Journal of Visual Impairment and Blindness, Vision Loss and Public 

Health Supplement 100 (2006), pp. 863–865. 

175 Michele Capella-McDonnall, “The Need for Health Promotion for Adults Who Are 

Visually Impaired,” Journal of Visual Impairment and Blindness 101, no. 3 (March 2007). 

176 Ibid. 

177 Ibid. 

178 D. Burton and H. Huffman, “Exercising Your Rights to Fitness: An Overview of 

Accessibility of Exercise Equipment,” Access World 8, no. 6 (November 2007). 

179 Ibid. 

180 Rimmer, “Building Inclusive Physical Activity Communities.” 

181 Crews et al., “The View from the Crossroads”; Di Stefano et al., “Community 

Services.” 

182 Corinne Kirchner, “Seize the Moment! Establishing Vision-Related Rehabilitation and 

Access in the Nation’s Public Health Policy Agenda,” Journal of Visual Impairment and 

Blindness, Vision Loss and Public Health Supplement 100 (2006). 
429 

183 Public Health Service, “Health Disparities and Mental Retardation: Programs and 

Creative Strategies to Close the Gap,” Closing the Gap: A National Blueprint for 

Improving the Health of Individuals with Mental Retardation: Report of the Surgeon 

General’s Conference on Health Disparities and Mental Retardation (Washington, DC: 

Public Health Service, 2001), Appendix D-1. 

184 Developmental Disabilities Assistance and Bill of Rights Act of 2000, U.S. Statutes at 

Large 144, 1677 (2000). 

185 Department of Health and Human Services, Administration for Children and 

Families, Administration on Developmental Disabilities, “IDD Fact Sheet.” 

<www.acf.hhs.gov/programs/add/Factsheet.html> (accessed March 11, 2008). 

186 The Arc of the United States, “Causes and Prevention of Mental Retardation.”

<www.thearc.org/NetCommunity/Document.Doc?&id=147> (accessed April 14, 2008). 

187 Kathleen Fisher, “Health Disparities and Mental Retardation,” Journal of Nursing 

Scholarship 36, no. 1 (March 2004), pp. 48–53. 

188 Ruth Freedman and Deborah Chassler, “Physical and Behavioral Health of Adults 

with Mental Retardation across Residential Settings,” Public Health Reports 119 (2004), 

pp. 401–408. 

189 Gloria L. Krahn, Laura Hammond, and Anne Turner, “A Cascade of Disparities: 

Health and Health Care Access for People with Intellectual Disabilities,” Mental 

Retardation and Developmental Disabilities Research Reviews 12, no. 1 (2006), pp. 70–

82. 

190 Meg Traci et al., “Promoting Health and Preventing Secondary Conditions Among 

Adults with Developmental Disabilities,” Workshop on Disability in America: A New 

Look—Summary and Background Papers, Marilyn J. Field, Alan M. Jette, and Linda 

Martin. eds. (Washington, DC: National Academies Press, 2006). 

191 Public Health Service, “Health Disparities”; M. Holder, “Health and Health Care of 

People with Intellectual Disabilities,” (presentation at Changing Attitudes, Changing the 

World Education Forum, Tokyo, Japan, February 26, 2005). 

192 Krahn et al., “A Cascade of Disparities.” 

193 Ibid. 

194 Department of Health and Human Services, Public Health Reports 119 (2004), pp. 

401–408; Surgeon General’s Conference on Health Disparities and Mental Retardation, 

Closing the Gap: A National Blueprint for Improving the Health of Individuals with Mental 

Retardation (Washington, DC: Department of Health and Human Services, 2002). p. xii; 

“Strategies for Providing Oral Care to People with Developmental Disabilities,” National 

Institute of Dental and Craniofacial Research, Developmental Disabilities and Oral 

Health. <www.nidcr.nih.gov/nidcr2.nih.gov/Templates/CommonPage.aspx?

NRMODE=Published&NRNODEGUID=%7b6F87D344-D34B-4DA9-9E1C6E8BC15C1E02%7d&NRORIGINALURL=%2fOralHealth%2fTopics%2fDevelopmental

Disabilities%2fPracticalOralCarePeopleMentalRetardation%2ehtm&NRCACHEHINT=G

uest#OralHealthProblems> (accessed September 5, 2008); Changing Attitudes: 
430 

Changing the World, The Health and Health Care of People with Intellectual Disabilities 

(Washington, DC: Special Olympics, Inc., 2005), p. 2. 

195 Freedman and Chassler, “Physical and Behavioral Health.” 

196 Mary Ann Lewis et al., “The Quality of Health Care for Adults with Developmental 

Disabilities,” Public Health Reports 117, no. 2 (March–April 2002), p. 17. 

197 Wendy M. Nehring, ed., Health Promotion for Persons with Intellectual and 

Developmental Disabilities: The State of Scientific Evidence (Washington, DC: 

American Association on Mental Retardation 2005), p. 101. 

198 Ibid., pp. 159, 167. 

199 Public Health Service, Closing the Gap.

200 Ibid. 

201 Ibid. 

202 One survey revealed that of people with diverse disabilities insured only by Medicaid, 

25 percent had trouble finding a physician who understood their disability, 24 percent 

postponed care, 40 percent went without needed equipment, 24 percent had trouble 

paying for drugs, and 28 percent skipped medication doses. See Kristina W. Hanson et 

al., “Uncovering the Health Challenges Facing People with Disabilities: The Role of 

Health Insurance,” Health Affairs (July–December 2003), Suppl Web Exclusives: W3-

552–565, <http://content.healthaffairs.org/cgi/content/abstract/hlthaff.w3.552v1>. 

203 Public Health Service, Closing the Gap. 

204 Krahn, G. and Drum, C.E., “Translating Policy Principles into Practice to Improve 

Health Care Access for Adults with Intellectual Disabilities: A Research Review of the 

Past Decade. Mental Retardation and Developmental Disabilities Research Reviews, 

13, no.2 (2007): 160-168. <http://dx.doi.org/10.1002/mrdd.20149>. 

205 Nehring, Health Promotion, p. 175. 

206 Marty W. Krauss et al., “Access to Specialty Medical Care for Children with Mental 

Retardation, Autism, and Other Special Health Care Needs,” Mental Retardation 5 

(October 2003), pp. 329–339. 

207 Public Health Service, “Summary of the Surgeon General’s Listening Session on 

Health Disparities and Mental Retardation,” Closing the Gap (Washington, DC: Public 

Health Service, 2001) Appendix E. 

208 Drainoni et al., “Cross-Disability Experiences of Barriers,” pp. 101–115. 

209 Ibid. 

210 Ibid. 

211 Freedman and Chassler, “Physical and Behavioral Health.” 

212 Public Health Service, Closing the Gap. 

213 “A Consensus Statement on Health Care Transitions for Young Adults with Special 

Health Care Needs,” Pediatrics 110, no. 6, part 2 (December 2002). 
431 

214 Ibid. 

215 Freedman and Chassler, “Physical and Behavioral Health.” 

216 Nehring, Health Promotion, p. 124 

217 Susan M. Havercamp, Donna Scandlin, and Marcia Roth, “Health Disparities Among 

Adults with Developmental Disabilities, Adults with Other Disabilities, and Adults Not 

Reporting Disability in North Carolina,” Public Health Reports 119, no. 4 (July–August 

2004), pp. 418–426. 

218 Susan L. Parish and Zachary E. Lutwich, “A Critical Analysis of the Emerging Crisis 

in Long-Term Care for People with Developmental Disabilities,” Social Work 50, no. 4 

(October 2005), pp. 345–354; Traci et al., “Promoting Health.” 

219 Krahn et al., “Cascade of Disparities.” 

220 Nehring, Health Promotion. 

221 Freedman and Chassler, “Physical and Behavioral Health.” 

222 Lewis et al., “Quality of Health Care.” 

223 G. S. Liptak et al., “Satisfaction with Primary Health Care Received by Families of 

Children with Developmental Disabilities,” Journal of Pediatric Health Care 20, no. 4 

(2006), pp. 245–252. 

224 Office on Disability and the Office on Women’s Health, Breaking Down Barriers.

225 While they are outside the scope of this report, many states also have disability 

nondiscrimination laws that apply to health care providers, both individual practitioners 

and larger nonprofit and commercial hospitals and HMOs. See, for example, California’s 

Unruh Civil Rights Act as applied in Washington v. Blampin, 226 CA2d 604, 38 CR 235 

(1964). The Act’s broad language of “services in all business establishments of every 

kind whatsoever” was intended to cover the professions. See Leach v. Drummond Med. 

Group, 144 CA3d 362, 269, 370 (1930), in which the Act is applied to a corporate 

medical group that refused future medical services to plaintiffs with disabilities. 

226 U.S. Code 29, sec. 794 (2007). 

227 U.S. Code 42, sec. 12101. 

228 U.S. Code 42, sec. 12181(7). 

229 Ibid., U.S. Code 42, sec. 12181(7)(F). 

230 Title III makes a distinction between the barrier removal standard of “readily 

achievable” (applicable to facilities that were already occupied as of January 26, 1993) 

and “readily accessible” (for facilities intended for first occupancy after January 26, 

1993). See U.S. Code 42, sec. 12182(b)(2)(A)(iv), (v); U.S. Code 42, sec. 12183; Code 

of Federal Regulations 28, sec. 36(304); and Code of Federal Regulations 28, sec. 401. 

Alterations to existing facilities made after January 26, 1992 are treated as new 

construction. See U.S. Code 42, sec 12183, and Code of Federal Regulations 28, 

sec. 36(402-405). Entities subject to Section 504 or Title II do not have a lesser barrier 

removal standard for existing facilities. 
432 

231 When a state or local government entity enters a contract with any private entity to 

provide an aid, benefit, or service of the state or local government, the government 

entity must ensure that the contractual functions are carried out in compliance with Title 

II of the ADA. See 28 Code of Federal Regulations, sec. 35.102. 

232 See U.S. Code 42, sec. 708. 

233 U.S. Code 42, sec. 2182(a). 

234 For the purposes of this chapter, an HMO is any corporate entity that assumes 

responsibility for providing health care services, either directly or through contractual 

arrangements with third-party service providers, and receives in exchange a fixed 

premium for each Medicaid, Medicare, or private insurance enrollee. HMO is thus used 

as a broad umbrella term that includes managed care organizations that generally 

undertake a comprehensive risk contract, as well as prepaid ambulatory and inpatient 

health plans that are paid according to fixed capitation payments or other arrangements. 

HMOs can be structured in a variety of ways, and it is arguable that a corporate entity 

that does not actually “own, lease, or lease to, or operate” the professional office of a 

health care provider or hospital is not directly obligated under Title III. 

235 U.S. Code 42, sec. 12182(b)(1)(A)(i). 

236 U.S. Code 42, sec. 12182(b)(1)(A)(ii)-(iii). 

237 U.S. Code 42, sec. 12182(b)(2)(A)(iii); Code of Federal Regulations 28, sec. 

36(302). “Undue burden” is defined as “causing significant difficulty or expense.” 

238 “Program or activity” is defined as “a department, agency, special purpose district, or 

other instrumentality of a state or of a local government; or the entity of such state or 

local government that distributes such assistance . . .” U.S. Code 29, sec. 794(b)(1)(A) 

and (B). See also Wolford by Mackey v. Lewis, 860 FSupp 1123 SDWVa (1994), a 

prima facie case established against the state of West Virginia for denying meaningful 

access to Medicaid services when transportation to residential care facility residents 

was refused even though its provision was reasonable. Moreover, a “program or 

activity” that receives Federal funds expressly includes “all of the operations of . . . an 

entire corporation, partnership, or other private organization, or an entire sole 

proprietorship . . . which is principally engaged in the business of providing . . . health 

care [or[ social services . . . any part of which is extended Federal financial assistance.” 

U.S. Code 29, secs. 794(b)(3)(A)(ii)-794(b)(4). 

239 Medicare and Medicaid payments have been interpreted as Federal financial 

assistance in virtually every circuit when raised in the context of Section 504 litigation 

brought against health care entities that receive such payments. See United States v. 

Baylor Univ. Med. Ctr., 736 F2d 1039, 1042, 5th Cir (1984), cert denied 469 U.S. 1189, 

105 SC 958 (1985), in which Medicare and Medicaid payments to a hospital’s inpatient 

and emergency services program constituted Federal financial assistance under 

Section 504; Glanz v. Vernick, 756 FSupp 632 Mass (1991), in which a clinic’s receipt of 

Medicaid reimbursement brought the clinic’s health care program within Section 504, 

regardless of whether a particular plaintiff received services paid for through Medicaid; 

Zamora-Quezada v. HealthTexas Medical Group of San Antonio, 34 FSupp2d 433 WD 
433 

Tex (1998), in which an HMO’s receipt of Medicare funds made all its operations subject 

to Section 504, not only those services provided to Medicare enrollees; and Davis v. 

Flexman 109 FSupp2d 776, 786 SD Oh (1999), in which a private counseling clinic’s 

receipt of Medicare and Medicaid payments brought it within the scope of Section 504 

even if the plaintiff was not a Medicare or Medicaid patient. See also Sharrow v. Bailey, 

910 FSupp 187, 193 MD Pa (1995); Patient v. Corbin, 37 FSupp2d433, 434 ED Va 

(1998); and Lesley v. Chie, 81 FSupp 217, 222 D Mass (2000). 

240 U.S. Code 42, sec. 12132. 

241 Code of Federal Regulations 45, sec. 84.4(b)(1)(i), (ii), (iii), “Nondiscrimination on the 

Basis of Handicap in Programs and Activities Receiving Federal Financial Assistance.” 

Federal financial aid recipients are also prohibited from using methods of administration 

“that have the purpose or effect of defeating or substantially impairing accomplishment 

of the objectives of the recipient’s program or activity with respect to handicapped 

persons.” See Code of Federal Regulations 45, sec. 84.4(b)(4). 

242 Code of Federal Regulations 28, sec. 35 130(b)(2). 

243 Section 504 gives some additional consideration to a small health care provider (15 

or fewer employees) in terms of its obligation to undertake physical alterations in an 

existing facility. Such Federal financial recipients may refer a person with a disability to 

another provider if, after consultation with the person seeking its services, the recipient 

finds that there is no method of making its program or activity, when viewed in its 

entirety, readily accessibly without making a significant alteration in its existing facilities. 

See Code of Federal Regulations 45, sec. 84.22(c). The referring entity also “has the 

responsibility of determining that the other provider is in fact accessible and willing to 

provide the service.” Code of Federal Regulations 45, PtA, AppA 341. Such entities are 

also not required to provide auxiliary aids and services unless required by the director of 

the Department of Health and Human Services. See Code of Federal Regulations 45, 

sec. 84.52(d)(2). 

244 See, generally, B. P. Tucker, “Access to Healthcare for Individuals with Hearing 

Impairments,” Houston Law Review 32 (2000), p. 1101; E. Markey, “The ADA’s Last 

Stand? Standing and the Americans with Disabilities Act,” Fordham Law Review 71 

(2002), p. 185; A. Milani, “Wheelchair Users Who Lack ‘Standing’: Another Procedural 

Threshold Blocking Enforcement of Titles II and III of the ADA,” Wake Forest Law 

Review 39 (2004), p. 69. 

245 McInnes-Misenor v. Maine Medical Center, 211 FSupp2d 256 D Me (2002). See also 

Moreno v. G & M Oil Co., 88 FSupp2d 1116, 1117-1118 CD Cal (2000), in which the 

plaintiff did not initiate a class action and could not assert claims against 82 additional 

stations operated by the defendant based on the rights of other disabled person who 

may encounter the barriers, since there was no injury to himself concerning the 

additional locations. 

246 See Mary Pat Gallagher, “Jury Awards $400,000 to Deaf Patient for Denial of 

Interpreter Services, October 17, 2008, <www.law.com/jsp/law/LawArticleFriendly.jsp

?id=1202425326286> (accessed October 31, 2008). As reported, the plaintiff sued her 

doctor under the ADA, Section 504, and New Jersey’s Law Against Discrimination for 
434 

refusing to provide her with an interpreter over the course of 20 visits over 20 months 

during her treatment for lupus. The defendant had claimed that, as a solo practitioner, 

the estimated interpreter’s cost of $150–$200 per visit would be an undue hardship 

when he was only being reimbursed $49 per visit by plaintiff’s insurer, but the plaintiff’s 

attorney introduced tax returns showing that defendant provider earned over $400,000 a 

year. The three-week trial took place in New Jersey Superior Court, and the jury 

ultimately found that the defendant violated the law by failing to provide the plaintiff with 

an interpreter and retaliating against her for requesting one. 

247 Ibid. 

248 U.S. Code 42, sec. 12188(b)(1)(B). 

249 See Settlement Agreement: Metzler et al. v. Kaiser Foundation Health Plan, Inc. et 

al. <www.dralegal.org/downloads/cases/metzler/settlement.pdf> (accessed October 31, 

2008). 

250 See Settlement Agreement Among the United States of America, Plaintiffs Equal 

Rights Center, Dennis Christopher Butler, Rosemary Ciotti, George Aguehounde, and 

Marsha Johnson and Washington Hospital Center (Department of Justice Complaint 

Number 202-16-120). <www.ada.gov/whc.htm> (accessed October 28, 2008). 

251 See Gillespie et al. v. Laurel Regional Hospital, No DKC 05-CV-71 DC MD, Consent 

Decree (July 14, 2006). <www.washlaw.org/projects/disability_rights/dr_lawsuits.htm> 

(accessed October 28, 2008). 

252 Another approach that has been taken recently with a large Title III entity can be 

found in a settlement agreement negotiated with the UCSF Medical Center on behalf of 

San Francisco disability rights activist August Longo. Mr. Longo’s attorneys, Lainey 

Feingold and Linda Dardarian, did not file a lawsuit but rather entered formal talks called 

“structured negotiations.” Under the resulting agreement, the Medical Center has 

initiated an extensive review of its buildings, policies, and medical equipment, and 

improved access for people with disabilities, including communication access for 

patients and visitors who are blind and who have other disabilities. UCSF has hired 

disability access experts recommended by Mr. Longo’s counsel to help the center 

improve access. See UCSF Medical Center Agreement. <www.lflegal.com/2008/09/

ucsf-settlement-agreement> (accessed October 24, 2008). 

253 Donald K. Cherry et al., “National Ambulatory Medical Care Survey: 2006 Summary.” 

National Health Statistics Reports 3 (August 6, 2008), p. 1. While the word “ambulatory” 

can be used medically in the narrow sense of the ability to walk, the NAMCS survey 

targets the offices of non-Federally employed physicians “who were classified by the 

American Medical Association (AMA) or the American Osteopathic Association (AOA) 

as ‘office-based, patient care.’” The specialties of anesthesiology, radiology, and 

pathology were excluded, but visits to private, non-hospital-based clinics and HMOs 

were included in the scope of the survey. Ibid., p. 7 

254 Ibid., pp. 2, 4 

255 Ibid. 
435 

256 Ibid., p. 3. Of the remaining offices, 5.9 percent were owned by another health care 

corporation, 3.4 percent were owned by another hospital, 2 percent were owned by a 

medical or academic health center, 1.7 percent were owned by an HMO, and 1.6 

percent were owned by a community health center. The remaining 2 percent of offices 

appeared to be owned by a local government entity or charitable organization, or had 

left the question unanswered. 

257 Ibid. 

258 1 FSupp2d 456 ED Penn (1998). 

259 The court in Anderson referred to the “program accessibility” standard of Code of 

Federal Regulations 28, secs. 35.130(b)(4) and 35.150(a)(1), which requires ADA Title 

II entities to ensure that their programs are accessible when viewed in their entirety. A 

“program or activity” is defined in Section 504 as “a department, agency, special 

purpose district, or other instrumentality of a state or of a local government; or the entity 

of such state or local government that distributes such assistance.” See U.S. Code 29, 

sec. 794(b)(1)(A) and (B). See also Wolford by Mackey v. Lewis, 860 FSupp 1123 SD 

WVa (1994), a prima facie case established against the state of West Virginia for denial 

of meaningful Medicaid services by refusing residential care facility residents 

transportation when it was reasonable to do so. 

260 34 FSupp2d 433 WD Texas (1998). 

261 The court specifically found that the HMO’s receipt of Medicare funds made it a 

recipient of Federal financial assistance and that all its operations were subject to 

Section 504, not only those services that were provided to plaintiffs who were Medicare 

enrollees. See 34 FSupp2d 440 WD Texas (1998). 

262 The plaintiffs’ complaint specifically alleged that the HMO had sufficient “control” 

through its contractual relationships with its medical providers to assert a claim under 

the ADA concerning the provider’s allegedly discriminatory level of service to disabled 

enrollees. It was a matter of fact whether the HMO-provider contract included a 

physician incentive plan and payment scheme that set differential capitated amounts 

per Medicare enrollees. 

263 Code of Federal Regulations 45, sec. 84.52. 

264 For example, the HMO is in a better position to implement and coordinate the use of 

a centralized sign language translator bank or centrally located accessible examining 

rooms that network providers could book, or to disseminate information about financial 

incentives and requirements concerning the purchase of accessible exam equipment. 

265 U.S. Code 41, sec. 426a (1965). 

266 Diane Rowland, “Helping Families with Needed Care: Medicaid’s Role for People 

with Disabilities,” testimony before the U.S. House of Representatives Committee on 

Energy and Commerce Subcommittee on Health, January 16, 2008. 

267 Ibid. 

268 U.S. Code 42, sec. 1396 (d). See also Code of Federal Regulations 42, sec. 440.10 

et seq.; Code of Federal Regulations 42, sec. 491.1-491.11. 
436 

269 U.S. Code 42, sec. 1396 (d); U.S. Code 42, sec. 1396(n). See also Code of Federal 

Regulations 42, sec. 440.60 et seq.; Code of Federal Regulations 42, sec. 440.90. 

270 See U.S. Code 42, sec. 1396(a)(17); Code of Federal Regulations 42, 440.230. Note 

that the state is still required to ensure that the amount, duration, and scope of coverage 

are reasonably sufficient to achieve the purpose of the service, and cannot set arbitrary 

limits on mandatory services based solely on diagnosis, type of illness, or condition. 

Code of Federal Regulations 42, secs. 440.230(b)-(c). 

271 Rowland testimony. 

272 Ibid. 

273 Ibid. 

274 Ibid. 

275 Programmatic barriers run the gamut of health care and office policies, procedures, 

and practices that fail to take account of the access needs of people with disabilities. 

Such barriers include a lack of height-adjustable exam tables or trained transfer 

assistance in provider offices, the absence of health information in alternative 

communication formats, the unavailability of sign language interpretation for provider 

visits, and the difficulty of obtaining a flexible window for an appointment time or an 

extended appointment time when required by a patient’s transportation or particular 

impairment. 

276 Code of Federal Regulations 42, sec. 438.206(a). 

277 The regulations do specifically include “whether the location provides physical 

access for Medicaid enrollees with disabilities” among the list of factors that states will 

contractually require MCOs, PIHPs, and PAHPs to consider in establishing their 

provider networks. See Code of Federal Regulations 42, sec. 438.206(b)(1)(v). 

278 U.S. Code 42, sec. 426a (1965). 

279 A distinction was made between individuals with end stage renal disease (and later, 

in a 2001 amendment, those with Lou Gehrig’s disease), who immediately became 

eligible for Medicare coverage upon receiving SSDI payments, and those with other 

disabilities, who generally became eligible for Medicare after a 24-month waiting period 

after receiving SSDI. See U.S. Code 42, secs. 1382(a) et seq. (1972). 

280 “Medicare—A Primer,” Kaiser Family Foundation. 

281 Ibid. 

282 Ibid. 

283 HMOs, preferred provider organizations (PPOs), and private fee-for-service (PFFS) 

plans are all private plans that can take part in Part C. 

284 “Medicare—A Primer,” Kaiser Family Foundation. Interestingly, the Medicare 

Payment Advisory Commission recently used July 2006 Medicare enrollment data to 

find that Federal Medicare payments to private health plans on behalf of Part C 

enrollees in private fee-for-service plans were higher on average than costs would have 
437 

been in the traditional Medicare fee-for-service program. PFFS plans were paid 119 

percent of traditional FFS costs before adjustment for enrollee risk, and private health 

plans were paid 112 percent of traditional FFS costs in the counties where Part C 

enrollees reside. 

285 U.S. Code 42, secs. 1395w-101 et seq; and U.S. Code 42 sec. 1395w-101-1395w152. 

286 “Medicare—A Primer,” Kaiser Family Foundation, p. 6. 

287 For the first $2,400 in drug costs, the standard benefit package requires enrollees to 

pay a $265 deductible and 25 percent coinsurance as well as monthly premiums. 

Private plans must offer either the standard benefit under Part D or an alternative that is 

at least “actuarially equivalent.” They may also offer enhanced benefits. Seventy-two 

percent of Part D beneficiaries are enrolled in stand-alone prescription drug plans, 

which in 2007 mostly deviated from the standard benefits package by charging 

copayments instead of 25 percent coinsurance and forgoing a deductible. Medicare Part 

D beneficiaries who meet certain income and asset limitations may also qualify for a 

low-income subsidy (LIS) through the Social Security Administration, which will pay for 

some or all of the Part D monthly premium, annual deductible, and drug copayments. 

As of January 2007, CMS estimates that 3 million beneficiaries who are eligible for the 

LIS do not receive it. See “Medicare—A Primer,” pp. 7–8. 

288 U.S. Code 29, secs. 701 et seq. 

289 Code of Federal Regulations 45, secs. 85.1 et seq.

290 SCHIP is codified at U.S. Code 42, secs. 1397aa et seq.

291 “SCHIP 101: What Is the State Children’s Health Insurance Program and How Does 

It Work?” FamiliesUSA, p. 1. <www.familiesusa.org/assets/pdfs/SCHIP-101.pdf> 

(accessed October 26, 2008). 

292 Frequently Asked Questions . . . SCHIP, National Conference of State Legislatures 

Forum for State Health Policy Leadership, available at <www.ncsl.org/print/health/

forum/SCHIPFAQ.pdf> (accessed October 26, 2008). 

293 Medicaid prohibits cost sharing for services provided to children under 18 years, 

pregnant women, and the medically needy. See “GAO Report to Congressional 

Requesters, Medicaid, and SCHIP: States’ Premium and Cost Sharing Requirements 

for Beneficiaries,” March 2004, p. 12. <www.gao.gov/new.items/d04491.pdf> (accessed 

October 26, 2008). 

294 The 18 states that operate separate SCHIP programs are to design a benefit 

package that offers the same “benchmark coverage” as the benefit coverage offered by 

the BlueCross/Blue Shield plan in the state, the state employees’ benefits plan, or the 

HMO with the largest Medicaid enrollment in the state. Alternatively, these states may 

get Federal approval of an “actuarially equivalent” benefit package or another benefit 

package that the HSS Secretary must approve. Florida, New York, and Pennsylvania 

had an existing child health insurance program benefit at the time of SCHIP’s 

enactment and have the option of continuing to offer this package. See “The Basics: 

State Children’s Health Insurance Program (SCHIP),” National Health Policy Forum, 
438 

George Washington University, March 27, 2007. <www.nhpf.org> (accessed October 

26, 2008). 

295 “SCHIP 101,” FamiliesUSA, p. 2. 

296 “NACH State Policy Services Fact Sheet on SCHIP,” National Association of 

Children’s Hospitals, January 2007. 

<www.childrenshospitals.net/AM/Template.cfm?Section=Search&template=/CM/HTML

Display.cfm&ContentID=32560> (accessed September 29, 2008). 

297 State Children’s Health Insurance Program (SCHIP) results available at 

<www.results.org/website/article.asp?id=1561> (accessed September 29, 2008). 

298 Susan L. Parish et al., “Material Hardship Among U.S. Families Raising Children with 

Disabilities,” Exceptional Children (Fall 2008). See also “UNC Study: ‘Chilling’ Hardship 

Rates Among Families Raising Disabled Children,” UNC News, August 18, 2008. 

<http://uncnews.unc.edu/content/view/1477/138/> (accessed July 31, 2009). 

299 Ibid. 

300 See Omnibus Budget Reconciliation Act of 1981, Public Law 5, 97th Congress 

(August 13, 1981). 

301 See Omnibus Budget Reconciliation Act of 1989, Public Law 239, 101st Congress 

(December 19, 1989). 

302 U.S. Code 42, sec. 702. 

303 In 1989, Congress also authorized 12.75 percent of annual MCH Block Grant 

appropriations in excess of $600 million to be set aside for Community Integrated 

Service System (CISS) projects. 

304 “Understanding Title V of the Social Security Act: A Guide to the Provisions of the 

Federal Maternal and Child Health Block Grant,” Department of Health and Human 

Services, Health Resources and Services Administration, Maternal and Child Health 

Bureau. <www.amchp.org/AboutTitleV/Documents/UnderstandingTitleV.pdf> (accessed 

October 26, 2008). 

305 Title V of the Social Act/SLAITS Survey, Family Voices, p. 2. 

<www.familyvoices.org/pub/hcf/titlev.pdf> (accessed October 26, 2008). 

306 U.S. Code 42, sec. 706. 

307 U.S. Code 42, sec. 708. 

308 U.S. Code 42, sec. 15000 et seq. 

309 U.S. Code 42, sec. 1500.1101(a). 

310 U.S. Code 42, sec. 15001.101(b). 

311 “Fact Sheet, Administration on Developmental Disabilities” (July 22, 2008). 

<www.acf.hhs.gov/programs/add/Factsheet.html> (accessed October 22, 2008). 

312 Each state is required to designate at least one legal organization as its protection 

and advocacy agency. While many of these agencies expressly include “protection and 
439 

advocacy” in their names, the national trend over the past few years has been to 

replace the older phrase with “disability rights,” followed by the name of the state. 

313 U.S. Code 42, sec. 15000. 101(b)(3)(C). 

314 New regulations had not been codified under the DD Act of 2000 when this report 

was written. The Administration on Developmental Disabilities (ADD) reopened (until 

September 29, 2008) the public comment period on the proposed rule first published in 

the Federal Register on April 10, 2008 (73 FR19708). Previous regulations pertaining to 

the UAPs were codified at Code of Federal Regulations 45, sec. 1388 et seq. and 

should apply to the UCEDDs until such time as they are explicitly replaced by a later set 

of codified regulations. 

315 Code of Federal Regulations 45, sec. 1388.4(g). 

316 Code of Federal Regulations 45, sec. 1388.4(o). 

317 Code of Federal Regulations 45, sec. 1388.4(k). 

318 Code of Federal Regulations 45, sec. 1388.4(r). 

319 Code of Federal Regulations 45, sec. 1388.5(f). 

320 Code of Federal Regulations 45, sec. 1388.6(b)(2). 

321 Code of Federal Regulations 45, sec. 1388.6(c). 

322 Code of Federal Regulations 45, sec. 1388.7(b). 

323 Code of Federal Regulations 45, sec. 1388.7(e). 

324 Code of Federal Regulations 45, sec. 1388.7(h). 

325 AHRQ at a Glance. <www.ahrq.gov/about/ataglance.htm> (accessed October 7, 

2008). Under Title IX, AHRQ’s primary mission is “to enhance the quality, 

appropriateness, and effectiveness of health services, and access to such services, 

through the establishment of a broad base of scientific research and through the 

promotion of improvements in clinical and health system practices, including the 

prevention of diseases and other health conditions.” See U.S. Code 42, sec. 299(b). 

326 Ibid. AHRQ at a Glance

327 U.S. Code 42, sec. 299b-2. The director is also to ensure that the Medical 

Expenditure Panel Survey (MEPS) will identify determinants of health outcomes and 

functional status of individuals with special health care needs, including individuals with 

disabilities, and provide reliable national estimates for children and persons with special 

health care needs through the use of supplements or periodic expansions of the survey. 

Ibid., sec. 299b-2(b)(1). 

328 U.S. Code 42, sec. 299a(e) and (f). 

329 U.S. Code 42, sec. 299(c)(1)(B). 

330 U.S. Code 42, secs. 299(c)(3) and 299(b)(1). 

331 U.S. Code 42, secs. 299b-5(a)(3) and (c). 
440 

332 U.S. Code 42, sec. 299b-6. 

333 See U.S. Code 42, sec. 299a(a)(5), which includes research and evaluation activities 

related to health care technologies, facilities, and equipment in AHRQ’s general 

authority. 

334 U.S. Code 42, sec. 299a(g). 

335 Public Law 525, 106th Congress (November 22, 2000). 

336 Public Law 43, 103rd Congress (June 10, 1993). 

337 U.S. Code 42, sec. 287c-31(1). 

338 U.S. Code 42, sec. 287c-31(d)(1). 

339 U.S. Code 42, sec. 287c-31(d)(1) & (2). 

340 U.S. Code 42, sec. 287c-31(d)(3). 

341 U.S. Code 42, sec. 299a-1(a)(1). Emphasis added. 

342 U.S. Code 42, sec. 299a-1(c)(1). 

343 See U.S. Code 42, sec. 287c-32. 

344 See U.S. Code 42, sec. 287c-33. 

345 Rene Bowser, “Racial Profiling in Health Care: An Institutional Analysis of Medical 

Treatment Disparities,” Michigan Journal of Race and Law 7, no. 79 (2001), pp. 125–

126. 

346 Numerous bills introduced in the 2007–2008 110th congressional session proposed 

further amendments to the MHDREA, such as authorizing the HHS Office of Civil Rights 

to make public findings of discrimination against health care providers on grounds linked 

to race or ethnicity. See H.R. 3333, sponsored by Rep. Jesse Jackson, and S. 1576, 

sponsored by Sen. Edward Kennedy, Minority Health Improvement and Health Disparity 

Elimination Act, sec. 1707(a)(16). 

347 U.S. Code 42, sec. 287c-31(d)(3). 

348 Public Law 525, 106th Congress (November 22, 2000). 

349 Vision and Mission, NCMHD. <http://ncmhd.nih.gov/about_ncmhd/mission.asp> 

(accessed October 7, 2008). 

350 Lisa Ikemoto, “Deconstructing the Image Repertoire of Women of Color: In the 

Shadow of Race,” University of California Davis Law Review 39 (March 2006), pp. 

1023, 1041–1042; Rene Bowers, “Racial Bias in Medical Treatment,” Dickinson Law 

Review 105 (Spring 2001), p. 365. 

351 U.S. Code 29, secs. 760-762. NIDRR’s program regulations are contained in Code 

of Federal Regulations 34, secs. 350-359. 

352 NIDRR’s research mandate is conducted externally via the funding of individual 

research projects and centers of excellence; the majority of NIDRR grantees are 

universities or providers of rehabilitation or related services. 
441 

353 See U.S. Code 29, sec. 763. The ICDR submits annual reports to the president, the 

Committee on Education and the Workforce of the House of Representatives, and the 

Senate Committee on Labor and Human Resources; it recommends project and 

program funding for Federal departments and agencies but does not appear to be 

funded itself. 

354 West’s Federal Administrative Practice (4th edition), sec.161. 

355 The Secretary of HHS may delegate the authority to enter into, modify, or issue 

approvals for Health Center grants or contracts only to the HRSA central office. See 

U.S. Code 42, sec. 254b(o). 

356 Public Law 299, 104th Congress (October 11, 1996). 

357U.S. Code 42, sec. 254b(a)(1). 

358 Ibid. 

359 U.S. Code 42, sec. 254b(a)(2). 

360 U.S. Code 42, sec. 300w-7(a)(1). 

361 U.S. Code 42, sec. 254b(3)(A). 

362 U.S. Code 42, sec. 254b(3)(B)(ii). 

363 U.S. Code 42, sec. 299aa. 

364 U.S. Code 42, sec. 299aa(b). 

365 U.S. Code 42, sec. 299aa(d)(2). 

366 U.S. Code 42, sec. 299aa(d). 

367 U.S. Code 42, sec. 299aa(j). 

368 U.S. Code 42, sec. 299aa(d)(14). 

369 U.S. Code 42, sec. 299aa(d)(17). 

370 U.S. Code 42, sec. 299aa(f). 

371 U.S. Code 42, sec. 299aa(f)(2)(B)(iv). 

372 U.S. Code 42, sec. 299aa(f)(4). 

373 U.S. Code 42, sec. 299aa(f)(2). 

374 U.S. Code 42, sec. 247b-4. 

375U.S. Code 42, sec. 247b-4(a)(2). 

376 U.S. Code 42, sec. 247b-4(b). 

377 U.S. Code 42, sec. 247b-4(c). 

378 U.S. Code 42, sec. 247b-4(c)(5). 

379 U.S. Code 42, sec. 281. 

380 U.S. Code 42, sec. 281(d)(2)(A). 
442 

381 U.S. Code 42, sec. 281(c)(2)(A). 

382 U.S. Code 42, sec. 281(d)(1). 

383 U.S. Code 42, sec. 281(e). 

384 U.S. Code 42, secs. 281(d)(2) and (f)(3). 

385 U.S. Code 42, sec. 282a. 

386 U.S. Code 42, sec. 299aa(d)(17). 

387 U.S. Code 42, sec. 299aa(d)(14). 

388 U.S. Code 42, sec. 299aa(f)(2)(B)(iv). 

389 U.S. Code 42, sec. 299aa(f)(4). 

390 U.S. Code 42, sec. 281(e). 

391 See U.S. Code 42, 299a(a)(5), which includes research and evaluation activities 

related to health care technologies, facilities, and equipment in AHRQ’s general 

authority. 

392 Code of Federal Regulations 45, sec. 84.52. 

393 For example, the HMO is in a better position to implement and coordinate the use of 

a centralized sign language translator bank or centrally located accessible examining 

rooms that network providers could book, or to disseminate information about financial 

incentives and requirements concerning the purchase of accessible exam equipment. 

394 Code of Federal Regulations 42, sec. 438.206(a). 

395 Other agencies within HHS, including the Administration on Aging and the Indian 

Health Service, also engage in substantial activities that relate to health, health care, 

and health disparities. However, while people with disabilities comprise a subpopulation 

of the demographic groups these agencies serve, they are not explicitly identified as 

intended beneficiaries; therefore, the activities of these agencies have not been 

included in this report. 

396 NCD did not investigate Federal agencies concerned with military and veterans’ 

health for this report, because a separate initiative was undertaken on this subject. 

397 “Fiscal Year 2006 Performance Highlights, University Centers for Excellence in 

Developmental Disabilities Education, Research, and Service.” 

<www.acf.hhs.gov/programs/add/adddocs/program_highlights/UCEDD06.pdf> 

(accessed July 15, 2008). 

398 “SCHIP-Enrolled Children with Special Health Care Needs: An Assessment of 

Coordination Efforts Between State SCHIP and Title V Programs,” Kaiser Commission 

on Medicaid and the Uninsured, January 2004, p. iii. <www.kff.org/medicaid/upload/

SCHIP-Enrolled-Children-with-Special-Health-Care-Needs.pdf>.

399 “National Survey of Children with Special Health Care Needs Chart Book 2005–

2006. <http://mchb.hrsa.gov/cshcn05/MI/NSCSHCN.pdf> 
443 

400 Health Resources and Services Administration homepage. <www.hrsa.gov> 

(accessed July 15, 2008). 

401 Institute of Medicine, The Future of Disability in America, ch. 10. 

<http://books.nap.edu/openbook.php?record_id=11898&page=310> (accessed July 15, 

2008). 

402 Vincent Campbell, Disability and Health Team, Centers for Disease Control and 

Prevention, interview, August 28, 2008. 

403 CDC, Office on Disability and Health. <www.cdc.gov/ncbddd/women/default.htm> 

(accessed on June 8, 2008); Campbell, personal communication. 

404 “Improving Healthcare Access for Americans with Disabilities,” Agency for 

Healthcare Research and Quality, Department of Health and Human Services. 

<www.ahrq.gov/news/focus/focdisab.htm> (accessed March 29, 2008). 

405 Office on Disability, Department of Health and Human Services, draft August 2008 

program updates, obtained from Lauren Fokowski, email communication, August 18, 

2008. 

406 Richard Carmona, Foreword, “The Surgeon General’s Call to Action to Improve the 

Health and Wellness of Persons with Disabilities.” <www.surgeongeneral.gov/library/

disabilities/calltoaction/forward.html> (accessed February 26, 2009). 

407 Focus Area 6 is co-led by CDC’s Disability and Health Team and the National 

Institute on Disability and Rehabilitation Research at the Department of Education. 

408 Healthy People 2010, Objectives for Improving Health, Disability, and Secondary 

Conditions. 

<www.healthypeople.gov/Document/HTML/Volume1/06Disability.htm#_Toc486927298> 

(accessed October 10, 2008). 

409 Healthy People 2010, Objectives for Improving Health, Vision, and Hearing. 

<www.healthypeople.gov/document/HTML/Volume2/28Vision.htm#_Toc489325919> 

(accessed August 31, 2008). 

410 Healthy People 2010 Midcourse Review, Goal 6. <www.healthypeople.gov/

data/midcourse> (accessed August 31, 2008). 

411 In recent years, NIDRR has supported health-related research through (1) 

Rehabilitation Engineering Research Centers (RERCs), which find and evaluate 

technologies, products, and methods that support the independence of persons with 

disabilities and the universal design of environments; (2) Rehabilitation Research and 

Training Centers (RRTDs) that are operated in collaboration with institutions of higher 

education or providers of rehabilitation or other appropriate services and serve as 

centers of national excellence in rehabilitation research; (3) Disability and Rehabilitation 

Research Products (DRRPs) that emphasize research, demonstration, training, 

dissemination, utilization, and technical assistance; and (4) Small Business Innovation 

Research (SBIR) and other initiatives. 
444 

412 News story, NCI Director’s Brief, July 20, 2007, “Confronting Cancer Health 

Disparities: National Cancer institute Center to Reduce Cancer Health Disparities.” 

<http://crchd.cancer.gov/news/news-text/dbrief072007.html> (accessed August 31, 

2008). 

413 Screening Mammography Follow-up for Women with Disabilities, NIH Breast Cancer 

Surveillance Consortium research grant, Susan G. Komen Breast Cancer Foundation. 

<http://breastscreening.cancer.gov/collaboratio United States v. Baylor Univ. Med. Ctr., 

736 F2d 1039, 1042, 5th Cir (1984), cert denied 469 US 1189ns/grants/039.html> 

(accessed August 12, 2008). 

414 National Eye Institute, 1999–2003 Strategic Plan. <www.nei.nih.gov/

strategicplanning/np_eyehealth.asp> (accessed August 8, 2008). 

415 National Institute of Dental and Craniofacial Research, Strategic Initiatives. 

<www.nidcr.nih.gov/NR/rdonlyres/932B8B7D-E114-4491-BE85-ABA6F29

663AE/0/hdplan.pdf> (accessed August 5, 2008).

416 National Institute of Dental and Craniofacial Research. 

<www.nidcr.nih.gov/NR/rdonlyres/7DC1215F-D0CC-44EF-8C55-

8F5BF37CA024/0/Introduction71907.pdf> (accessed August 31, 2008). 

417 National Institute of Dental and Craniofacial Research. <www.nidcr.nih.gov/

OralHealth/Topics/DevelopmentalDisabilities/AdditionalResources.htm> (accessed 

August 31, 2008). 

418 Project Description, Health Empowerment Zones for People with Disabilities, 

National Institute of Environmental Health Services. <www.niehs.nih.gov/research/

supported/programs/obe/grantees/chicago.cfm> (accessed August 13, 2008). 

419 National Institute of Mental Health. <www.nimh.nih.gov/about/strategic-planningreports/#strategic-objective3> (accessed August 20, 2008). 

420 National Institute of Nursing Research. <www.ninr.nih.gov/NR/rdonlyres/E54A777CFAAA-474A-BDFF-5B85EC8B9E7E/0/StrategicMission.pdf> (accessed July 19, 2008). 

421 The National Academies are the National Academy of Sciences, the National 

Academy of Engineering, the Institute of Medicine, and the National Research Council. 

The first three are professional elective bodies; the last is the operating arm of the 

National Academies. In carrying out its program, IOM adheres to all procedures used by 

the National Research Council. See 

<www.iom.edu/Object.File/Master/26/047/DRAFT%20STRATEGIC%20VISION%20JuL

Y%202003%20v5%20sept%2005.pdf> (accessed August 31, 2008). 

422 “Crossing the Quality Chasm: The IOM Health Care Quality Initiative,” Institute of 

Medicine. <www.iom.edu/CMS/8089.aspx> (accessed August 20, 2008). 

423 “Crossing the Quality Chasm: A New Health System for the 21st Century,” Institute 

of Medicine. <www.iom.edu/CMS/8089.aspx> (accessed August 20, 2008). 

424 “Brief Report: Examining the Health Disparities Research Plan of the National 

Institute of Health: Unfinished Business,” Institute of Medicine. 
445 

<www.iom.edu/Object.File/Master/35/550/nih%20disparities.pdf>. (accessed August 20, 

2008) 

425 Ibid.

426 Ibid.

427 Ibid. 

428 Advancing the Nation’s Health: A Guide to Public Health Research Needs, 2006–

2015, Department of Health and Human Services, Centers for Disease Control and 

Prevention, December 2006. 

429 Drainoni et al., “Cross-Disability Experiences of Barriers,” p. 114. 

430 Advisory Committee on Training in Primary Care Medicine and Dentistry, The Role 

of Title VII, Section 747 in Preparing Primary Care Practitioners to Care for the 

Underserved and Other High Risk Groups and Vulnerable Populations, 6th annual report 

to the Secretary of the Department of Health and Human Services and to Congress, 

2007. 

431 P. F. Adams, J. W. Lucas, and P. M. Barnes, “Summary Health Statistics for the U.S. 

Population: National Health Interview Survey 2006,” Vital Health Statistics 10, no. 236 

(2006), Table 15. 

432 Health Risks in the United States: Behavioral Risk Factor Surveillance System 2008, 

Centers for Disease Control and Prevention and Coordinating Center for Health 

Promotion, p. 3. 

433 S. E. Palsbo and P-S. Ho, “Consumer Evaluation of a Disability Care Coordination 

Organization,” Journal of Health Care for the Poor and Underserved 18 (2007), pp. 

887–901. 

434 Altman and Bernstein, Disability and Health in the United States.

435 Agency for Healthcare Research and Quality, National Healthcare Disparities 

Report, 2007 (Rockville, MD: Department of Health and Human Services, 2008). 

436 Susan Palsbo, “Assessment of Health Plans and Providers by People with Activity 

Limitations” Webinar sponsored by Center for Health Care Strategies, Inc., February 

2008. <www.chcs.org/publications3960/publications_show.htm?doc_id=669840> 

(accessed July 18, 2008). 

437 The project abstract is available at <www.gold.ahrq.gov/GrantDetails.cfm?Grant

Number=K08%20HS15700>. 

438 E. W. Grabois, M. A. Nosek, and D. Rossi, “Accessibility of Primary Care Physicians’ 

Offices for People with Disabilities: An Analysis of Compliance with the Americans with 

Disabilities Act,” Archives of Family Medicine 8 (1999): pp. 44–51; B. Premo, L. 

Carrothers, and M. Larson-McNeal, “Providing Primary Health Care for People with 

Physical Disabilities: A Survey of California Physicians,” Center for Disability Issues and 

the Health Professions, 2002. <www.cdihp.org/pdf/ProvPrimeCare.pdf> (accessed July 

18, 2008); A. Downs et al., “Wellness Promotion in Persons with Disabilities: Physicians’ 
446 

Personal Behaviors, Attitudes, and Practices,” Rehabilitation Psychology, 49, no. 4 

(2004), pp. 303–308. 

439 L. I. Iezzoni and B. O’Day, More Than Ramps: A Guide to Improving Health Care 

Quality and Access for People with Disabilities (New York: Oxford University Press, 

2006). 

440 A. Cohen and California Foundation for Independent Living Centers (CFILC), “2006 

Pilot Survey of Disability Access Services Provided by California Health Plans,” 

Executive Summary (CFILC, 2006). 

<www.cfilc.org/site/pp.aspx?c=ghKRI0PDIoE&b=1860909&printmode=1> (accessed 

July 18, 2008). 

441 Department of Health and Human Services (HHS), The Surgeon General’s Call to 

Action to Improve the Health and Wellness of Persons with Disabilities (Washington, 

DC: HHS, 2005), p. 2. 

442 Drainoni et al., “Cross-Disability Experiences of Barriers,” pp. 101–115. 

443 S. Levine, “Suit Wins Changes for Disabled at Hospital, DC Facility Faces Up to $2 

Million in Modifications to Ensure Equal Care,” Washington Post, November 3, 2005. 

444 “Building Bridges: An Act to Reduce Recidivism by Improving Access to Benefits for 

Individuals with Psychiatric Disabilities upon Release from Incarceration,” Bazelon 

Center for Mental Health Law. <http://www.bazelon.org/issues/criminalization/

publications/buildingbridges/index.htm> (accessed March 10, 2009). 

445 J. Aggas et al., “Working Collaboratively for the First Community-Based 

Comprehensive Health Survey of a U.S. Deaf Community,” presentation, Prevention 

Research Centers Annual Program Meeting, Atlanta, March 26, 2008. 

<http://www.urmc.rochester.edu/ncdhr/information/documents/2008PRC_Presentations

_Aggas_Barnett_000.pdf> (accessed July 31, 2009). 

446 Susan E. Dudley, “Does Federal Statistical Data Adequately Serve People Living 

with Disabilities?” statement for the record before the Information Policy, Census, and 

National Archives Subcommittee, Oversight and Government Reform Committee, U.S. 

House of Representatives, June 4, 2008. 

447 AHRQ, National Healthcare Disparities Report. 

448 Altman and Bernstein, Disability and Health in the United States. 

449 For 12 of the 22 objectives used to track progress on the 10 indicators, CDC lists 

data sources at <www.cdc.gov/ncbddd/dh/hplhidata.htm>. 

450 G. A. Stone et al., “Understanding and Using the Economic Evidence,” The Guide to 

Community Preventive Services: What Works to Promote Health?, S. Zaza, P. A. Briss, 

and K. W. Harris, eds. (New York: Oxford University Press, 2005). 

451 Institute of Medicine (IOM), The Future of Disability in America (Washington, DC: 

National Academies Press, 2007); IOM, Disability in America: Toward a National 

Agenda for Prevention (Washington, DC: National Academies Press, 1991); Surgeon 

General of the United States, Call to Action to Improve the Health and Wellness of 
447 

People with Disabilities (Washington, DC: Government Printing Office, 2005); Office on 

Disability, Breaking Down Barriers to Health Care for Women with Disabilities: A White 

Paper From a National Summit (Washington, DC: Department of Health and Human 

Services, Office of Women’s Health, 2004). 

452 Institute of Medicine, Crossing the Quality Chasm: A New Health System for the 21st 

Century (Washington, DC: National Academies Press, 2001). 

453 Centers for Disease Control and Prevention, Disability and Health Branch, “Healthy 

People 2010 Objectives for People with Disabilities.” <http://www.cdc.gov/ncbddd/

dh/hp2010.htm> (accessed June 21, 2008). 

454 American Association of Medical Colleges, Cultural Competence Education

(Washington, DC: American Association of Medical Colleges, 2005). 

455 American Nurses Association, “Safe Patient Handling,” May 11, 2008. 

<www.nursingworld.org/MainMenuCategories/ANAPoliticalPower//Issues/SPHM.aspx> 

(accessed June 21, 2008); K. Kirschner, L. I. Iezzoni, and M. L. Breslin, “Structural 

Impairments That Limit Access to Health Care for People with Disabilities,” Journal of 

the American Medical Association 297 (2007), pp. 1121–1125. 

456 American Nurses Association, “Safe Patient Handling.” 

457 D. M. Berwick, “My Right Knee,” Annals of Internal Medicine 142 (2005), pp. 121–

125. 

458 J. L. Reinertsen, M. D. Pugh, and M. Bisognano, Seven Leadership Leverage Points 

for Organization-Level Improvement in Health Care (Cambridge, MA: Institute on 

Healthcare Improvement, 2005). 

459 Clarissa Kripke, associate clinical professor, Department of Family and Community 

Medicine, University of California–San Francisco, interview and email communication, 

June 16 and August 4, 2008. 

460 Palsbo and Ho, “Consumer Evaluation.” 

461 AXIS client, interview, September 11, 2008. 

462 Palsbo and Ho, “Consumer Evaluation.” 

463 “National Health Care Journal Reports That Care Coordination Model Used by AXIS 

Healthcare in UCare Complete Improves Key Life Measures for People with Physical 

Disabilities,” press release. <www.axishealthcare.org/AboutUs/NewsDatabase/

tabid/133/Default.aspx> (accessed August 28, 2008). 

464 Indian Health Service, Department of Health and Human Services. 

<http://info.ihs.gov/QuickLook.asp> (accessed August 21, 2008). 

465 Judy Struck, executive director, Center for Disabilities, Sanford School of Medicine of 

the University of South Dakota, Vermillion, interview, August 13, 2008. 

466 Ibid.

467 Ibid.

468 YAI homepage. <www.yai.org/> (accessed August 21, 2008). 
448 

469 Marco Damiani, director, Clinical and Family Services, YAI/National Institute for 

People with Disabilities, interview, August 19, 2008. 

470 “About the CDD,” Center for Development and Disability homepage. 

<http://cdd.unm.edu/about/> (accessed 11 September 2008). 

471 Catherine McClain, director, Center for Development and Disability, Developmental 

Disabilities education, Research and Service, (University Center for Excellence in 

Developmental Disabilities University of New Mexico, Albuquerque, email, September 

11, 2008. 

472 Ibid. 

473 Catherine McClain, Annual Report to the Administration on Developmental 

Disabilities (Fiscal Year 2008), Center for Development and Disability, Developmental 

Disabilities education, Research and Service, (University Center for Excellence in 

Developmental Disabilities, University of New Mexico, Albuquerque, July 30 2008. 

474 “About WIHD,” WIHD homepage. <www.wihd.org/mission.html> (accessed 

September 12, 2008). 

475 Wendy Geringer, director, Research and Program Development, Westchester 

Institute for Human Development, interview, September 12, 2008. 

476 Ibid. 

477 See, for example, J. Canter, J. Rosenfeld, N. Butt, and A. Botash, “Physical and 

Sexual Abuse of Children,” Emergency Care of the Abused, Laura Melville and Fiona 

Gallahue, eds. (Cambridge, England: Cambridge University Press, 2008); D. O’Hara, 

“Developing Models of Health Care for Chronic Medical Conditions,” presentation, 

Health Special Interest Research Group of the International Association on Intellectual 

Disabilities, Prato, Italy, May 21-23, 2007; D. O’Hara, P. Seagriff-Curtin, M. Levitz, D. 

Davies, and S. Stock, “Using Personal Digital Assistants to Improve Self-Care in Oral 

Health,” Journal of Telemedicine and Telecare 14 (2008), pp. 150–151; P. Towle, “Early 

Identification of Autism Spectrum Disorders,” presentation, Center for Autism and 

Related Disorders, Rochester, NY, April 2008. 

478 Wendy Geringer, director, Research and Program Development, Westchester 

Institute for Human Development, email, September 12, 2008. 

479 Florita Tovega Maiki, BHAWD manager, Alta Bates Summit Medical Center, 

interview, July 22, 2008. 

480 Ibid. 

481 Ibid.

482 “Satisfaction Questionnaire,” BAHWD, January 1 2007, to December 31, 2007. 

483 Evaluation Summary, Increasing Access to Mammography Services for Women with 

Disabilities, BAWHD, April 8, 2006, May 20, 2006, September 30, 2006, and March 3, 

2007. 

484 BAWHD client, interview, August 6, 2008. 
449 

485 History and Mission of the Women with Disabilities Center, Rehabilitation Institute of 

Chicago. <www.ric.org/conditions/community/women-disabilities-center/history.aspx> 

(accessed September 5, 2008). 

486 Judith Panko Reis, director, Women with Disabilities Center (WWDC), Rehabilitation 

Institute of Chicago, email, July 29, 2008. 

487 Judith Panko Reis, interview, July 22, 2008. Reis said that WWDC programs 

consistently score in the 95–100 percent satisfaction range. 

488 Center for Women with Disabilities at Magee-Women’s Hospital of the University of 

Pittsburgh Medical Center (UPMC). <www.upmc.com/HospitalsFacilities/

Hospitals/Magee/SpecialtyServicesWomen/womenwithdisabilities/Pages/default.aspx> 

(accessed 29 August 2008).

489 Pam Dodge, director of ambulatory/outpatient care, Magee-Women’s Hospital, 

UPMC, Pittsburgh, interview, July 15, 2008. 

490 Ibid.

491 Ibid.

492 Margaret A. Nosek, Health Promotion Campaign for Women with Physical 

Disabilities: Final Report to Houston Endowment, January 31, 2007, 

<www.bcm.edu/crowd/index.cfm?pmid=2155>.

493 “Health Disparities between Women with Physical Disabilities and Women in the 

General Population,” CROWD Web site. <www.bcm.edu/crowd/?PMID=1331> 

(accessed September 2, 2008). 

494 Nosek, Health Promotion Campaign for Women with Physical Disabilities. 

495 Margaret A. Nosek, executive director, Center for Research on Women with 

Disabilities, Baylor College of Medicine, interview, June 30, 2008. 

496 Peg Mackie, social scientist, interview, September 2, 2008. 

497 Blindness Support Services homepage. <www.blindnesssupport.com/> (accessed 

August 21, 2008). 

498 Shelby Benton, case coordinator, Blindness Support Services, Riverside, CA, 

interview, August 12, 2008. 

499 “Health,” Blindness Support Services. <www.blindnesssupport.com/health.htm> 

(accessed August 21, 2008). 

500 LightHouse homepage. <www.lighthouse-sf.org/> (accessed August 22, 2008). 

501 Jessie Lorenz, director, Public Policy and Information, LightHouse for the Blind and 

Visually Impaired, San Francisco, interview, August 13, 2008. 

502 Ibid.

503 Gary Kaufman, director, Deaf Access Program, Sinai Health Systems, Chicago, 

interview, July 22, 2008; “Deaf Access,” Sinai Health Systems homepage. 

<www.sinai.org/services/deaf-access/deaf-access.asp> (accessed August 21, 2008). 
450 

504 Teri Hedding, manager, Deaf Access Program, Sinai Health Systems, Chicago, 

interview, July 3, 2008. 

505 Ibid. 

506 “Improving Access to Health and Mental Health for Chicago’s Deaf Community: A 

Survey of Deaf Adults; A Collaborative Project of the Sinai Health System and Advocate 

Health Care,” February 2004. <www.suhichicago.org/files/publications/C.pdf>.

507 Deaf and Hard-of-Hearing Program, Advocate Illinois Masonic Medical Center. 

<www.advocatehealth.com/deaf> (accessed August 21, 2008). 

508 Communication Services for the Deaf of Minnesota. <www.c-s-d.org/default.aspx?

pageid=217> (accessed August 21, 2008). 

509 An interpreter must have a valid Level 4 or 5 certificate from the National Association 

for the Deaf, a Comprehensive Skills Certificate from the Registry of Interpreters for the 

Deaf (RID), or a valid Certificate of Interpretation and Certificate of Transliteration from 

RID; the same vaccinations that are required of hospital workers; and must carry liability 

insurance. 

510 Marty Barnum, director, Interpreting Operations, Communication Service for the Deaf 

of Minnesota, interview, August 4, 2008. 

511 Ibid.

512 Ibid. 

513 The Rehabilitation Services Administration of the Department of Education has 

provided funding for a National Interpreter Education Center and five Regional 

Interpreter Education Centers. The CATIE Center specializes in preparing interpreters 

to work in health care fields. See “About CATIE.” 

<http://minerva.stkate.edu/offices/academic/interpreting.nsf/pages/about_catie> 

(accessed July 31, 2009). 

514 Richard Laurion, external liaison and project manager, CATIE Center, St. 

Paul/Minneapolis, MN, interview, August 8, 2008. 

515 Medical Interpreting homepage. <www.medicalinterpreting.org/index.html> 

(accessed August 21, 2008). 

516 Elizabeth Winston and Dennis Cokely, “NCIEC Interpreting Practitioner Needs 

Assessment Final Report,” September 26, 2007, <http://nciec.org/resource/

docs/PracRept.pdf>

517 Laurion, interview. 

518 Dr. Robert Pollard, director, Deaf Wellness Center, Rochester, NY, interview, August 

6, 2008. 

519 Deaf Wellness Center homepage. <www.urmc.rochester.edu/dwc/index.htm> 

(accessed August 21, 2008). 

520 Dr. Eleanor Rosenfield, associate dean, Student and Academic Affairs, National 

Technical Institute for the Deaf, Rochester, NY, interview, July 21, 2008. 
451 

521 National Technical Institute for the Deaf. <http://www.ntid.rit.edu/current/has.php> 

(accessed August 22, 2008). 

522 “Annual Report 2007,” National Technical Institute for the Deaf. 

<www.ntid.rit.edu/media/annual_report2007.pdf> (accessed August 22, 2008). 

523 “International Center for Hearing and Speech Research,” National Technical Institute 

for the Deaf. <www.ntid.rit.edu/ichsr/Index.html> (accessed August 22, 2008). 

524 Lisa I. Iezzoni, “Toward Universal Design in Assessing Health Care Experiences,” 

Medical Care 40, no. 9 (2002), pp. 725–728. 

525 Rowland testimony, “Helping Families with Needed Care: Medicaid’s Role for People 

with Disabilities.”

526 “Understanding Title V of the Social Security Act.”

527 U.S. Code 42, sec. 706. 

528 U.S. Code 42, sec. 15000 et seq.

529 U.S. Code 42, sec. 15000. 101(b)(3)(C). 

530 “Fiscal Year 2006 Performance Highlights, University Centers for Excellence in 

Developmental Disabilities Education, Research, and Service.”

531 Crowley and Elias, “Medicaid’s Role for People with Disabilities.” 

532 Altman and Bernstein, Disability and Health in the United States, p. 47. 

533 “Uninsured Americans with Chronic Health Conditions,” p. 4. 

534 Ibid. 

535 Wei et al., “Disability and Receipt of Clinical Preventive Services among Women,” 

pp. 286–296.

536 A. O’Hearn, “Deaf Women’s Experiences.” 

537 Orsi et al., “Cancer Screening Knowledge, Attitudes, and Behaviors Among 

Culturally Deaf Adults.” 

538 Capella-McDonnall, “The Need for Health Promotion for Adults Who Are Visually 

Impaired.” 

539 Ibid. 

540 Ibid. 

541 Havercamp, Scandlin, and Roth, “Health Disparities Among Adults with 

Developmental Disabilities, Adults with Other Disabilities, and Adults Not Reporting 

Disability in North Carolina.” 

542 Parish and Lutwich, “A Critical Analysis of the Emerging Crisis in Long-Term Care for 

People with Developmental Disabilities”; Traci et al., “Promoting Health.” 

543 Krahn, Hammond, and Turner, “Cascade of Disparities.” 
452 

544 Chevarley et al., “Health, Preventive Health Care, and Health Care Access Among 

Women with Disabilities in the 1994–1995 National Health Interview Survey, 

Supplement on Disability.” 

545 Altman and Bernstein, Disability and Health in the United States.

546 Ibid. 

547 Office on Disability and Office on Women’s Health, Breaking Down Barriers. 

548 Welner, “Gynecologic Care and Sexuality Issues for Women with Disabilities.” 

549 Iezzoni et al., “Communicating About Health Care” 

550 Ibid., Steinberg et al., “Healthcare System.” 

551 Steinberg et al., “Healthcare System.” 

552 Public Health Service, Closing the Gap.

553 Ibid. 

554 Hanson et al., “Uncovering the Health Challenges Facing People with Disabilities.” 

555 Public Health Service, Closing the Gap. 

556 Krahn and Drum, “Translating Policy Principles into Practice to Improve Health Care 

Access for Adults with Intellectual Disabilities.” 

557 Freedman and Chassler, “Physical and Behavioral Health.” 

558 Indian Health Service homepage. 

559 Struck interview. 

560 YAI homepage. 

561 Damiani interview. 

562 “About WIHD,” WIHD homepage. 

563 “History and Mission of the Women with Disabilities Center,” Rehabilitation Institute 

of Chicago Web site. 

564 Nosek, Health Promotion Campaign for Women with Physical Disabilities.

565 “Health Disparities Between Women with Physical Disabilities and Women in the 

General Population,” CROWD Web site. 

566 Blindness Support Services homepage. 

567 LightHouse homepage. 

568 Lorenz interview. 

569 Kaufman interview; “Deaf Access,” Sinai Health Systems homepage. 

570 CATIE Project Description. 

571 Laurion interview. 

572 Pollard interview. 
453 

573 Medicare—A Primer, Kaiser Family Foundation, p. 6. 

574 “Understanding the Health Care Needs and Experiences of People with Disabilities.” 

575 Crowley and Elias, “Medicaid’s Role for People with Disabilities,” p. 11. 

576 “California Health Insurance Plans–DME Coverage by 214 Health Plans As of 

February 2007.” 

577 National Council on Disability, Implementation of the Americans with Disabilities Act: 

Challenges, Best Practices, and New Opportunities for Success, p. 30. 

578 Krauss et al., “Access to Specialty Medical Care for Children with Mental 

Retardation, Autism, and Other Special Health Care Needs.” 

579 Kaye, Disability Watch, pp. 7–9, 11–12. 

580 Ibid., p. 13. 

581 Crowley and Elias, “Medicaid’s Role for People with Disabilities,” p. 11. 

582 Stone et al., “Understanding and Using the Economic Evidence.” 

583 DeNavas-Walt, Proctor, and Smith, U.S. Census Bureau, Current Population 

Reports, P60-235, Income, Poverty, and Health Insurance Coverage in the United 

States: 2007. 

584 The Uninsured: A Primer: Key Facts about Americans without Health Insurance,

Kaiser Commission on Medicaid and the Uninsured. 

585 Altman and Bernstein, Disability and Health in the United States, p. 47. 

586 S. Yee, “Position Paper on Medicaid Healthcare Accessibility for People with 

Disabilities,” Disability Rights Education and Defense Fund, Berkeley, CA, 2006. 

587 Key Approaches to the Use of Managed Care Systems for Persons with Special 

Health Care Needs, Department of Health and Human Services, Health Care Financing 

Administration, Center for Medicaid State Operations, Baltimore, MD, October 1998. 

588 In 2005, recognizing the role states should play in ensuring that managed care 

organizations can serve people with disabilities, the Center for Disability Issues in the 

Health Professions, the Center for Health Care Strategies, and the Lewin Group 

convened stakeholder and other groups to develop “Performance Standards for MediCal Managed Care Organizations Serving People with Disabilities and Chronic 

Conditions.” The “Medi-Cal Health Plan Readiness Assessment Tool,” released in 2008, 

reflects the recommendations of the 2005 California Health Care Foundation report and 

helps determine whether a plan is prepared to enroll and serve additional beneficiaries 

with disabilities. See <www.chcf.org/topics/medi-cal/index.cfm?itemID=113558> 

(accessed September 9, 2008). 

589 Institute of Medicine, The Future of Disability in America, p. 288. 

590 Linda Long, adjunct clinical Instructor, Public Health and Family Medicine, University 

of Massachusetts Medical School, Worcester, interview, February 2, 2008. 
454 

591 Clarissa Kripke, associate clinical professor, Department of Family and Community 

Medicine, University of California–San Francisco, San Francisco, interview and email, 

June 16 and August 4, 2008. 

592 M. A. Nygren, Impact of the AUCD Network in FY2006: Three Networks of University 

Centers and Programs Working to Improve the Lives of People with Disabilities and 

Their Families (Silver Spring, MD: Association of University Centers on Disabilities, 

October 2006). 

593 Arthur M. Sherwood, science and technology advisor, NIDRR Rehabilitation 

Engineering Research Centers (RERCs), Rehabilitation Engineering Research Center 

on Accessible Medical Instrumentation, Marquette University, Department of Biomedical 

Engineering, Milwaukee, WI, email, August 18, 2008. 

594 NIDRR Long-Range Plan 2010-2014 Draft Overview. <http://www.ed.gov/rschstat/

research/pubs/nidrr-lrp-10-14-draft-overview.ppt> (accessed July 31, 2009). 

595 Interagency Committee on Disability Research, The Interagency Committee on 

Disability Research 2004–06 Report to the President and Congress (Washington, DC: 

Department of Education, 2007), p. 15. 

596 CELLS TO SOCIETY: Overcoming Health Disparities, Centers for Population Health 

and Health Disparities (CPHHD), November 2007. 

<http://cancercontrol.cancer.gov/populationhealthcenters/cphhd/index.html> (accessed 

August 24, 2008). The National Institute of Environmental Health Sciences, National 

Cancer Institute, National Institute on Aging, and NIH Office of Behavioral and Social 

Sciences Research collaboratively made awards to eight centers located at the 

University of Chicago, Wayne State University, the RAND Corp., Tufts University, Ohio 

State University, the University of Pennsylvania, the University of Texas Medical 

Branch–Galveston, and the University of Illinois–Chicago. 

597 National Institute of Dental and Craniofacial Research. <www.nidcr.nih.gov/NR/

rdonlyres/932B8B7D-E114-4491-BE85-ABA6F29663AE/0/hdplan.pdf> (accessed 

August 2, 2008). 

598 Centers for Disease Control and Prevention, Advancing the Nation’s Health: A Good 

Guide to Public Health Research Needs, 2006–2015 (Washington, DC: Department of 

Health and Human Services, 2006), p. 54. 

599 Constance Pledger, associate director, Research Sciences, National Institute on 

Disability and Rehabilitation Research, Department of Education, and executive 

director, ICDR, interview and email, September 9 and 10, 2008. 

600 Institute of Medicine, The Future of Disability in America.