The Surgeon General’s 


Call to Action to Improve the 

Health and Wellness of 

Persons with Disabilities 

2005 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Public Health Service 

Office of the Surgeon General 

Rockville, MD 

2005 
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Public Health Service


Office of the Surgeon General 


This publication is available on the World Wide Web at 

http://www.surgeongeneral.gov and at http://www.hhs.gov/od. 

Suggested Citation 

U.S. Department of Health and Human Services. The Surgeon General’s Call To 

Action To Improve the Health and Wellness of Persons with Disabilities. US 

Department of Health and Human Services, Office of the Surgeon General, 2005. 
Contents

I. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

II. Understanding Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3

III. Health and Wellness for Persons with Disabilities Today . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10

IV. Vision for the Future . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .21

V. Advancing the Call Nationwide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .25

VI. The Call to Action At-a-Glance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26

VII. Appendices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27

References

Acknowledgments

Medicare and Medicaid-Home and Community-Based Programs

Glossary

Resources

Call to Action i 
ii Call to Action 
Message from Michael O. Leavitt 

Secretary of Health and Human Services 

Individuals with disabilities are newborn infants, children, teens, working-age adults and older adults 

of all races and ethnicities. They live in towns, cities and rural areas. They attend schools and places of worship, vote, marry, have children, work and play. They also need health care and health promotion programs 

for the same reasons we all do: to stay well, to be active and to participate in community life. 

This Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities 

emphasizes the centrality of health to the quality of our lives. Developed by the Surgeon General in collaboration with the Department’s Office on Disability, it describes the particular challenges to health and wellbeing faced by persons of all ages with disabilities. It places their health squarely among the public health 

issues at the forefront of research, service delivery, financing, training and education and health care policy today. It also builds upon the Nation’s efforts to promote wellness and disease prevention in all persons, 

including those with disabilities, as called for in the President’s HealthierUS Initiative. 

Just as the Americans with Disabilities Act of 1990 and President George W. Bush’s New Freedom 

Initiative have opened doors for persons with disabilities through equal access and inclusion, the overarching principle of this Call to Action recognizes that with good health, persons with disabilities have the 

freedom to work, learn and engage actively in their families and their communities. In other words, health 

and wellness is a key component to realizing the central principles of the NFI—the assurance of educational opportunity, workforce engagement and full access into daily community life. 

It will take effort by all members of society to achieve this principle. Everyone has a role to play in 

improving health and wellness, from health care and service support providers, training institutions, federal, state, local and tribal governments, the private sector and the media, to persons with disabilities and 

their families and community groups nationwide. 

I wholeheartedly endorse this Call to Action. I encourage you to join me in making a healthier U.S. for 

all of us. 

Call to Action iii 
iv Call to Action 
Foreword 

from the Surgeon General, 

U.S. Department of Health and Human Services

Since 1900, the nation has witnessed unprecedented improvement in the health of its people thanks, 

in large part, to the public health movement that works to prevent disease and its spread, and to promote 

mental, physical and emotional well-being. As a result of a century of public health initiatives, such as vaccinations, improved nutrition and sanitation, and new treatments to combat acute illnesses, millions of people have led longer, healthier lives. As a result, the emphasis of the nation’s work in public health has shifted from a focus solely on acute illnesses to a more balanced approach that has added attention to chronic 

medical conditions and the factors that cause them. 

The perception of disability—a condition of the body, mind, or senses of a person of any age that may 

affect the ability to work, learn or participate in community life—also is in transition. With the recognition 

that disability is not an illness, the emphasis increasingly is on continuity of care and the relationship 

between a person with a disability and the environment at the physical, emotional and environmental levels. This approach is based on the knowledge that good health means the same thing for everyone, and that 

the best possible health status and quality of years of life should be a goal for everyone, whether experiencing a disability or not. 

Today, 54 million Americans—more than one fifth of us—are living with at least one disability. Some 

individuals are born with a disability; others acquire disabilities over the course of their lifetime. At any 

time, each of us is at risk for acquiring a disability, whether through an illness, an injury, genetics, or any 

number of other causes. With the “baby boom” generation approaching later life, there will be increased 

numbers of persons with or at risk for a disability. The sheer numbers of persons with disabilities today 

and tomorrow mean that disability is an issue for the nation as a whole, not just for those of us concerned 

about public health. 

This Call to Action to Improve the Health and Wellness of Persons with Disabilities is built on the need to 

promote accessible, comprehensive health care that enables persons with disabilities to have a full life in 

the community with integrated services, consistent with the President’s New Freedom Initiative. Persons 

with disabilities must have accessible, available and appropriate health care and wellness promotion services. They need to know how to—and to be able to—protect, preserve and improve their health in the same 

ways as everyone else. This Call to Action encourages health care providers to see and treat the whole person, not just the disability; educators to teach about disability; a public to see an individual’s abilities, not 

just his or her disability; and a community to ensure accessible health care and wellness services for persons with disabilities. 

This volume provides a roadmap for change. It delineates the challenges and strategies to address this 

critical public health concern. Because it is based on input not only from health specialists in the disability 

field, but also from individuals with disabilities and their family members, this Call to Action presents not 

just a scientific perspective on disability, but also the reality experienced by those living daily with disabilities. 

This Call to Action can, and must, resonate with community leaders in both the public and private sectors (including employers and the media) and with policymakers who craft or influence the creation of 

community programs. The principle and goals of this document can both incentivize and yield dividends 

for employers of persons with disabilities, including greater productivity and lower overall health costs by 

preventing illnesses and injuries secondary to a disability. Advocates for persons with disabilities can use 

this Call to Action to promote the involvement of individuals with disabilities as equal partners in all aspects 

of American life. With concerted action—undertaken through public-private partnerships spanning all levels of government and all service, education and research systems—the full potential of legal, health policy and health program initiatives to improve access to health and wellness services by persons with disabilities can be realized. 

Richard Carmona, M.D., M.P.H., F.A.C.S. 

Surgeon General 

Call to Action v 
vi Call to Action 
I. Introduction

Today, approximately 54 million individuals of all 

ages, races, ethnicities, socioeconomic status and educational attainment in the United States live with at least 

one disability (McNeil 2001; 1997) (See Figure 1). 

Disabilities have been defined in many ways. In general, however, disabilities are characteristics of the body, 

mind, or senses that, to a greater or lesser extent, affect 

a person’s ability to engage in some or all aspects of dayto-day life. Some disabilities are visible; others are not. 

Some are physical, some visual or auditory, some developmental or cognitive, and some mental or behavioral. 

Some persons are born with one or more disabilities; 

others acquire a disability during the course of a lifetime. Most individuals in the United States will experience a disability of some duration at some point in their 

lives. 

Different kinds of disabilities affect people in different ways. No single disabling condition necessarily 

affects one person in exactly the same way as it does 

another. Yet, persons with disabilities of all kinds share 

many of the same challenges when it comes to their own 

health and well-being. 

Disability is not an illness. The concept of health 

means the same for persons with or without disabilities: 

achieving and sustaining an optimal level of wellness— 

both physical and mental—that promotes a fullness of 

life (Krahn 2003). For persons with disabilities, as for 

those without disabilities, to be healthy, it means having 

the tools and knowledge to help promote wellness and 

knowing the risk factors that can promote illness and 

the protective factors that can prevent it. For persons 

with all kinds of disabilities it also means knowing that 

conditions secondary to a disability—from pain to 

depression and from urinary tract infections to heightened susceptibility to acute illnesses—can be treated 

successfully. Health also means that persons with disabilities can access appropriate, integrated, culturally 

sensitive and respectful health care that meets the needs 

of a whole person, not just a disability. 

When it comes to focusing attention on meeting 

those health care challenges for persons with disabilities, Clancy and Andresen (2002) assert that “healthcare 

delivery has been slower to come to the fore than other 

areas.” Thus, while much has been accomplished 

through such efforts as the Americans with Disabilities 

Act (1990), the President’s New Freedom Initiative, his 

HealthierUS initiative, and the U.S. Department of 

Health and Human Services’ Healthy People, much 

more remains to be done. Challenges to the health and 

wellness of persons with disabilities continue, as does 

the need to meet those challenges and overcome them. 

Some of the challenges arise from insufficient 

knowledge and awareness; some arise from provider 

and community attitudes and behaviors. Some chalFigure 1: Percentage of Americans With Disabilities (based on McNeil 2001) 

Call to Action 1 
lenges are the result of inadequate access to information 

and opportunities for appropriate health care and wellness promotion. Still others are the product of service 

systems that do not always make use of innovative and 

creative approaches to enhancing the health and wellness of persons with disabilities. 

This Call to Action responds to those challenges. It 

is based on a simple principle: good health is necessary 

for persons with disabilities to secure the freedom to 

work, learn and engage in their families and communities. The Call to Action further delineates four specific 

goals: 

GOAL 1: People nationwide understand that persons 

with disabilities can lead long, healthy, productive lives. 

GOAL 2: Health care providers have the knowledge 

and tools to screen, diagnose and treat the 

whole person with a disability with dignity. 

GOAL 3: Persons with disabilities can promote their 

own good health by developing and maintaining healthy lifestyles. 

GOAL 4: Accessible health care and support services 

promote independence for persons with disabilities. 

This Call to Action helps identify barriers to overcome and suggests direction to improve the health and 

wellness of persons with disabilities and to promote 

their engagement in school, in work, in worship, in family and in the overall fabric of life in ways unimagined a 

century ago. It sets forth a vision for the future and challenges America to action. The work to achieve the vision 

of this Call to Action, however, must take place at the federal, state, tribal and community levels in policy and 

programs; in infrastructure and education; and in the 

hearts, minds and actions of persons with disabilities 

and their families, health care providers—including 

paraprofessionals and professionals—in the health care 

system, and a concerned, informed public. 

The Call to Action was developed by the Surgeon 

General in collaboration with the Department’s Office 

on Disability. In order to ensure input from the disability community, a focus group was held in October of 

2004 in which nine individuals of varying disabilities 

were invited to participate. The focus group received a 

A Personal Story—Access Ignored 

in the emergency room “I can't get up on the gurto get someone to help me get on this examination 

the problem?” 

I was so frustrated at having to tell the people 

ney; I can't stand up to do this; you're going to have 

table” ... and they just look at you like, “Hey, what's 

presentation on the report from the Office on Disability. 

Overall, participants had a favorable reaction to the 

draft and their additional comments and suggestions 

were incorporated into the final version of the Call to 

Action. 

2 Call to Action 
II. Understanding Disability

Challenges to a person’s health can happen to anyone, at any age and at any time as a result of any number of different causes. When limitations related to a 

medical condition arise and begin to have a negative 

effect on essential life functions, such as walking, talking, seeing, hearing, or working (functions often 

referred to as “Activities of Daily Living” (ADLs), a person is said to have a disability. When it comes to health 

and wellness of persons with disabilities, in many ways, 

each of the individuals described here and in the personal stories throughout this Call to Action faces a comparable challenge. It is the challenge to be seen, 

acknowledged and heard as a whole person with a 

range of health service and wellness promotion needs 

and not to be viewed solely through the prism of disability. 

No one is immune from the potential onset of a disability: An infant can be born with profound deafness; a 

child can become paralyzed from a playground injury; a 

young adult can develop depression and drug abuse; a 

woman in her early 30s can be diagnosed with multiple 

sclerosis; a man in midlife can develop Type II diabetes; 

and an older adult can lose vision because of glaucoma. 

It is important to recognize that disability is not an 

illness. Just as health and illness exist along a continuum, so, too, does disability. Just as the same illnesses can 

vary in intensity from person to person, so, too, can the 

same condition lead to greater or lesser limitation in 

activity from one person to another. Some persons with 

disabilities never perceive themselves as being disabled. 

Some medical conditions might more likely be accompanied by limitations or changes in activity. According 

to a report based on data from the 1999 Survey of 

Income and Program Participation (Centers for Disease 

Control and Prevention 2001), a broad array of conditions led to disability among adults living in the community: 

Arthritis or rheumatism (17.5%)* 

Back or spine problems (16.5%) 

Heart trouble/hardening of the arteries (7.8%) 

Lung or respiratory problems (4.7%) 

Deafness or hearing problems (4.4%) 

Limb or extremity stiffness (4.2%) 

Mental or emotional problems (3.7%) 

Diabetes (3.4%)

Stroke (2.8%) 

Blindness or vision problems (3.4%) 

Broken bone or fracture (2.1%) 

Intellectual disability (mental retardation)** (2.0%)

Cancer (1.9%) 

High blood pressure (1.7%) 

Head or spinal cord injury (1.1%)

According to the 2002 National Health Interview 

Survey (Centers for Disease Control and Prevention 

2004), some 28.3 million adults nationwide report difficulty of some sort in physical functioning; and 4.9 million children, 3 through 17 years of age, were told at 

some point that they had a learning disability. Not all of 

these issues necessarily result in significant disability for 

any one person, but each has that potential. 

Some disabilities are relatively limited in duration; 

others can extend across a lifetime. Some children are 

born with disabilities, whether as the result of genetics, 

in utero infection (for example, rubella), trauma, exposure to drugs or alcohol, or the birth process itself 

(Luckasson and Borthwick-Duffy 2002). As a result of 

advances in neonatal clinical care, high-risk infants are 

surviving in far greater numbers, despite the likelihood 

of disabilities that can extend across their lifetimes. 

Some disabling conditions are more likely to arise 

at different times in the life span (Pope and Tarlov, 1991), 

for instance, cerebral palsy at birth, spinal cord injuryrelated paralysis during late adolescence and early 

adulthood, and Alzheimer’s disease in later life. As individuals age, many experience multiple disabling conditions simultaneously, often accruing over time (Calkins 

et al 1999), among them, chronic medical conditions, 

genetic predispositions to late-onset illnesses; sensory 

disorders; and disabilities from problems secondary to 

other medical conditions (e.g., amputations or vision 

deficits secondary to diabetes. Because the population 

as a whole is aging (DeJong et al 2002; LaPlante and Kay 

1998), the absolute number of persons with disabilities is 

growing. 

Critically, whatever the age of onset of disability, 

one point is unassailable: increasing numbers of persons 

with disabilities that once resulted in premature death 

now live for or exceed the life span for the average 

* Percentage represents proportion of persons with disabilities for whom the particular condition is the factor leading to their disabilities; percentages do not total 100% since only selected conditions leading to disability are listed) 

** Intellectual disability is the term preferred, since it lacks the stigmatizing label of “mental retardation.”) 

Call to Action 3 
American of over 76 years. (Panko Reis et al 2004). For 

persons with disabilities, when their comprehensive 

health needs go unaddressed, secondary conditions, 

such as decubitus ulcers, lower immune function, 

depression, among others, can result. Equally important 

from the public health perspective, many persons with 

disabilities can, and do, lead normal, healthy lives when 

they can access appropriate care to support their ongoing 

health and wellness needs. 

Defining Disability 

Disability has been defined in a variety of ways for 

both program and policy purposes. It is specifically 

defined in law (see box below) and also is used variously in other contexts. For example, the term has been 

used to describe “limitations in physical or mental function, caused by one or more medical conditions, in carrying out socially defined tasks or roles” (Pope and 

Tarlov 1991). Such a disability, or limitation in personal 

or societal functioning, occurs when a person interacts 

with his or her environment (Brandt and Pope 1997). 

This Call to Action emphasizes the importance of a 

biopsychosocial approach to disability in which disability arises from a combination of factors at the physical, 

emotional and environmental levels. This approach 

diverges sharply from the “illness” model under which 

disability historically had been defined and approached. 

That illness model approaches disability from the perspective of diagnosing, treating and discharging (Zola 

1982). In contrast, the biopsychosocial approach focuses 

on three interrelated concepts that extend beyond the 

individual: (1) impairments, which are problems, 

changes, or losses in body function or structure 

(whether physical, neurological, mental, sensory, or cognitive); (2) activity: the performance of a task or action by 

an individual; and (3) participation within the context of 

the environment (Iezzoni 2003). 

Who Are Persons With Disabilities? 

Approximately 54 million persons (one in five) in 

the United States are living with disabilities of all kinds 

(McNeil 2001, 1997). (Figure 1) According to the most 

recent (2000) census data, around 52 million of them 

reside in the community (U.S. Census Bureau 2002). The 

Government Accountability Office has estimated that at 

least 1.8 million individuals with disabilities are being 

served in institutional settings, including 1.6 million in 

nursing facilities. McNeil (2001) reported that agespecific rates range from a low of 7.8 percent for those 

Definitions of Disability 

on Disability Research has found that 67 separate 

laws define disability for federal purposes alone 

(CESSI 2003). 

Programs such as maternal and child health 

person, physical surroundings, and social environment. Each of these programs defines a person with 

a disability as someone who 

substantially limits one or more “major life 

activities”; 

(2) Has a record of such an impairment; or 

(3) Is regarded as having such an impairment. 

From a legal, benefit, and social program perother functions essential to full participation in 

community-based living. Thus, to be found disabled for the purpose of Social Security's 

Supplemental Security Income or Social Security 

that has lasted, or is expected to last, at least 12 

A recent report to the Interagency Committee 

programs, Section 504 of the Rehabilitation Act of 

1973 and the Americans with Disabilities Act of 

1990, have adopted a definition that encompasses 

(1) Has a physical or mental impairment that 

spective, however, disability often is defined on the 

basis of specific activities of daily living, work and 

Disability Insurance benefits, individuals must have 

a severe disability (or combination of disabilities) 

months (or to result in death), and which prevents 

working at a “substantial gainful activity” level. 

younger than 15 years of age to a high of 73.6 percent for 

those 80 years of age or older (Figure 2). 

Disability spans age, race, ethnicity, socioeconomic 

status and education level. In earlier life (ages 5 to 15 

years) males tend to have higher rates of disability than 

females; the rates reverse subsequently. (U.S. Census 

Bureau 2002). (Table 1) According to the Census, 7.3 

million individuals with disabilities, ages 15–64, are of 

racial or ethnic minorities (U.S. Census Bureau 2002). 

Rates of disability rise with age consistently across all 

racial and ethnic groups (Table 2). Overall, Asian 

Americans and Whites, 5 years of age or older, have 

lower rates of disability than other racial and ethnic 

groups. American Indian and Alaska Native and Black 

or African-American populations experience the highest 

rates, five percent above rates of disability among White 

4 Call to Action 
Figure 2: Prevalence of Disability by Age Group, 1997* 

*As reported by McNeil, 2001. Disability was defined as anyone who: (a) used a wheelchair, cane, crutches or walker; (b) 

had difficulty with one or more functional limitations; (c) had difficulty with one or more activities of daily living; (d) 

had one or more specified conditions; (e) had any other mental or emotional condition that seriously interfered with 

everyday activities; (f) had a condition that limited the ability to work around the house; (g) if 16–67 years of age, had a 

condition that made it difficult to work at a job or business; or (h) received federal benefits based on an inability to work. 

Table 1: Population with Disability by Age 

Characteristic Male # % Female # % 

Population, Age 5 and over 124,636,825 100.0 132,530,702 100.0 

With any disability 24,439,531 19.8 25,308,717 19.1 

Population, Ages 5-15 23,135,324 100.0 22,008,343 100.0 

With any disability 1,666,230 7.2 948,689 4.3 

Population, Ages 16-64 87,570,583 100.0 91,116,651 100.0 

With any disability 17,139,019 9.6 16,014,192 17.6 

Population, Age 65 and Over 13,940,918 100.0 19,405,708 100.0 

With any disability 5,634,282 40.4 8,343,836 43.0 

Source: U.S. Census Bureau, Census 2000 Summary File 3 (adapted from Panko Reis et al 2004) 

Call to Action 5 
Table 2: Percentage of Disability in the Civilian Non-institutionalized Population Over 5 Years of Age, 2000 

Total > 5 5–15 16–64 > 65 

Ethnicity Population Years Years Years Years 

White alone 195,100,538 18.5 5.6 16.8 40.6 

Hispanic or Latino (of any race) 31,041,269 20.9 5.4 24.0 48.5 

White alone, not Hispanic or Latino 180,151,084 18.3 5.7 16.2 40.9 

Black or African American alone 30,297,538 24.3 7.0 26.4 52.8 

American Indian and Alaska Native alone 2,187,597 24.3 7.7 27.0 57.6 

Asian alone 9,455,058 16.6 2.9 16.9 40.8 

Native Hawaiian and Other Pacific Islander alone 337,996 19.0 5.1 21.0 48.5 

Some other race alone 13,581,921 19.9 5.2 23.5 50.4 

Two or more races 6,206,804 21.7 7.1 25.1 51.8 

Total 257,167,527 19.3 5.8 18.6 41.9 

Source: U.S. Census Bureau, Census 2000 Summary File 3 (adapted from Panko Reis et al 2004) 

populations. Hispanic/Latino Americans, the fastest 

growing racial or ethnic population in the country, have 

a disability rate that falls between that for White and 

Asian American populations, but lower than among 

American Indian/Alaska Native and Black/AfricanAmerican populations. (Table 2) 

Yamaki and colleagues (2003) reported a 16 percent 

increase in the prevalence of disability from 1983 

through 1996. In part, this increase is explained by the 

ongoing rise in life expectancy, including increased 

longevity for persons with disabilities. The population 

of elderly persons with disabilities grew in absolute size 

from about 6.2 million persons in 1984 to about 6.8 million in 1999, since the total population of persons aged 

65 and over grew fast enough to offset the decline in 

overall disability rates during the same period (Federal 

Interagency Forum on Age-Related Statistics 2004). The 

older adult population is expected to keep growing, 

from around 35 million in 2000 to as many as 80 million 

in 2040 (Federal Interagency Forum on Age-Related 

Statistics 2004). As the baby boom generation reaches 

later life in the coming decade, so, too, will the absolute 

numbers of adults with disabilities (See Figure 2 and 

Table 3). 

The increase in the prevalence of disability also is a 

product of advances in preventing infant and child mortality from both the birth process and trauma-related 

impairments. Children and youth—from birth to 18 

years of age—represent one fourth of the total United 

States population. The 2000 National Survey of Children 

with Special Health Care Needs (Centers for Disease 

Call to Action 

Control and Prevention 2000) found that 12.8 percent 

(9.4 million) of children nationally have special health 

care needs. This population includes children whose 

disabilities could have been prevented altogether, such 

as those with Fetal Alcohol Syndrome, a constellation of 

neurological, behavioral and physical disabilities, 

resulting from the use of alcohol by a mother during 

pregnancy. 

As children and youth with disabilities of all kinds 

live longer, they will contribute to growing rates of disability in each age group to which they advance over the 

years. For example, in 1929, the average life span of a 

person with Down syndrome was 9 years of age. Today, 

it is common for a person with Down syndrome to live 

to 50 years of age and beyond (National Institute of 

Child Health and Human Development 2004). In fact, 

since 1983 alone, the average life span of a person with 

Down syndrome has doubled (Yang et al 2002). 

Individuals with cystic fibrosis, for whom the average 

life expectancy was around 18 years in 1985, today are 

living roughly twice as long, on average around 34 years 

(National Heart, Lung and Blood Institute 1995). 

Further, a 40-year-old person who survives the first year 

after an injury causing paraplegia can be expected to 

live to nearly 70 years of age, only around 8 years fewer 

than the average person who has not had such an injury 

(National Spinal Cord Injury Statistical Center 2001). 

Consideration of the impact of this expanding population on the health system is critical to ensure the 

nation’s public health. Development of health policy, 

health programs and health financing must address the 

6 
Table 3: Population by Age and Disability 

Characteristic Total Total % 

Population, Age 5 and over 257,167,527 100.0 

With any disability 49,746,248 19.3 

Population, Ages 5–15 45,133,687 100.0 

With any disability 2,614,919 5.8 

Sensory 442,894 1.0 

Physical 455,461 1.0 

Mental 2,078,502 4.6 

Self-care 419,018 0.9 

Population, Ages 16–64 178,687,234 100.0 

With any disability 33,153,211 18.6 

Sensory 4,12 3,902 2.3 

Physical 11 ,140,365 6.2 

Mental 6,764,439 3.8 

Self-care 3,149,875 1.8 

Difficulty going out 11,414,508 6.4 

Employment disability 21,287,570 11.9 

Population, Age 65 and Over 33,346,626 100.0 

With any disability 13,978,118 41.9 

Sensory 4,738,479 14.2 

Physical 9,545,680 28.6 

Mental 3,592,912 10.8 

Self-care 3,183,840 9.5 

Difficulty going out 8,795,517 20.4 

Source: U.S. Census Bureau, Census 2000 Summary File 3 (adapted from Panko Reis et al 2004) 

need for access to services and supports for persons 

with disabilities. 

Historical Perspective 

The need to ensure health and wellness for persons 

with disabilities has not always been recognized in 

health care policies and programs, funding, or training. 

Similarly, the overall health and well-being of persons 

with disabilities have not always been acknowledged as 

a public health issue. A century ago—even 35 years 

ago—little research was conducted on disability; little 

mention was made of the individuals who were born 

with or acquired a disability; little attention was paid to 

how they or their family fared. Most often, at best, individuals with disabilities received acute care services; 

some might have received brief rehabilitation services. 

Some individuals with disabilities associated with considerable stigma, such as mental illnesses, neurological 

disorders, or developmental challenges, were closeted 

in institutions; others with visible physical impairments 

remained at home on front porches or in back bedrooms. Most were pitied; some were feared; few were 

expected to play an active role in the life of the community. 

As a result of advances in public health and the 

imperative of the Americans with Disabilities Act, the 

landscape has been changing. Increasingly, research and 

health care are being directed toward preventing conditions that can give rise to disability in the first place and 

toward increasing access to health and wellness services 

for individuals already living with a disability. Part of 

the new focus is evidenced by such public health initiatives as the U.S. Department of Health and Human 

Services’ Healthy People 2010 Initiative and the 

Administration’s HealthierUS Initiative. 

Several decades of advances in science and services 

coupled with the civil rights movement, the deinstitutionalization movement and other human rights and 

Call to Action 7 
health policy initiatives of the 1960s and 1970s, have 

helped catalyze the disability rights movement. In turn, 

the voices of advocates for persons with disabilities have 

become more powerful in the drive for a more level 

playing field for persons with disabilities, in education, 

in jobs, in health care and in all aspects of community 

life (Braddock and Parish 2002; Parish 2002; West 1991; 

Shapiro 1994; Pelka 1997; Francis and Silvers 2000). 

The result has been the adoption of laws, policies, 

programs and regulations intended to ensure and protect the rights of persons with disabilities, including 

prohibiting discrimination in health care. Among the 

most significant are: 

• Section 504 of the Rehabilitation Act of 1973 that specifically prohibits discrimination against a class of 

individuals—persons with disabilities—by agencies, organizations and employers that either are 

part of the federal government or receive federal 

funding. Section 504 specifically requires equal 

opportunity to persons with disabilities who otherwise would qualify to participate in, receive benefits 

from and be free from discrimination by any programs conducted or supported by federal dollars. 

These include programs related to housing, employment, health care and education, among others. 

Sections 501 and 503 of the same act prohibit discrimination against persons with disabilities in federal employment practice and by federal contractors, respectively. 

• The Americans with Disabilities Act of 1990 (ADA) 

(P.L. 101-336) that provides comprehensive civil 

rights protections to individuals with disabilities in 

the areas of employment; state, tribal and local government services (including those of public health 

agencies and health or wellness programs); public 

accommodations (including health care facilities 

and offices as well as exercise and wellness programs and facilities); transportation; and telecommunications. The ADA does not cover the executive 

branch of the federal government, since its antidiscrimination rules are contained in the previously 

described Rehabilitation Act of 1973. Indeed, the 

1973 act served as a model for the ADA. 

• The Olmstead v. L.C. and E.W. decision of 1999 in 

which the Supreme Court interpreted Title II of the 

ADA and its implementing regulations as requiring 

states to administer their services, programs and 

activities “in the most integrated setting appropriate 

to the needs of qualified individuals with disabilities” where professionals have determined placement is appropriate, the person does not object, and 

the placement can be reasonably accommodated, 

taking into account the resources available to the 

state and the needs of others with disabilities. The 

Court held that unjustified isolation and segregation of individuals with disabilities, primarily in 

institutions, constitute discrimination based on disability. The decision further recognized that such 

confinement both perpetuated unwarranted 

assumptions that people with disabilities were incapable or unworthy of participating in community 

life and severely curtailed everyday life activities, 

such as family relations, social contacts, work, educational advancement and cultural enrichment. 

• The 2001 New Freedom Initiative (NFI), announced by 

President Bush in 2001, is a comprehensive plan to 

help remove barriers to community living for persons with disabilities. Focusing on six areas (education, housing, employment, transportation, assistive 

technologies and access), the NFI is helping to 

ensure that all Americans have the opportunity to 

learn and develop skills, engage in productive 

work, make choices about their daily lives and participate fully in community life. 

• Both private health insurance and federal and state 

health and supportive benefits programs, including 

the Medicaid and Medicare programs, that serve as 

a vital source of health insurance for persons with 

disabilities, older persons and children and mothers; the Supplemental Security Income program that 

provides a safety net for persons with disabilities 

who are economically impoverished; and the Social 

Security Disability Insurance program that cushions 

the economic impact on workers who become disabled. 

While statutes, regulations, court decisions and 

programs have mandated equal opportunity and equal 

access for persons with disabilities, alone they cannot 

necessarily mandate improved quality of life for persons 

with disabilities. The challenge today and tomorrow is 

not only to build on what has come before, but also to 

ensure that disability is understood within the context 

of health and wellness by providers, educators, policymakers and the public. 

Costs of Disability 

The annual direct and indirect costs associated 

with disability among persons of all ages were estimated over a decade ago to be more than $300 billion— 

8 Call to Action 
upward of 5 percent of the gross domestic product. This 

includes $160 billion in medical care and $155 billion in 

lost productivity (1994 dollars) (Brandt and Pope 1997). 

Another $195 billion in earnings and taxes are lost each 

year by persons with disabilities because of unemployment (American Association of People with Disabilities 

2004). 

Additionally, the costs of inattention to the health 

and wellness services for persons with disabilities 

extend beyond the economics of lost productivity and 

health care dollars to human costs as well. 

Federal, state and local government, and private 

payments to support persons with disabilities of 

employable age who do not have jobs are estimated at 

$232 billion a year. In 2000 alone, over 6.9 million adults 

with disabilities received Medicaid services, at a combined federal and state cost of $72.7 billion. Private 

insurance is estimated to contribute $6 billion; persons 

with disabilities or long-term illnesses and their families 

pay $34 billion out-of-pocket (Hough 2000; Leigh et al 

1997). 

With the aging of the population, the projected 

increases in the numbers of persons with disabilities of 

all ages, the higher costs of new medications and treatments, and the overall rise in health care costs, these 

commitments are certain to rise. 

Call to Action 9 
III. Health and Wellness for Persons with Disabilities Today

The principle underlying this Call to Action is that, 

with good health, persons with disabilities have the 

freedom to work, learn and engage actively in their families and their communities. Health and wellness are not 

the same as the presence or absence of a disability; they 

are broader concepts that directly affect the quality of a 

person’s life experience. Research and clinical experience have shown that persons with disabilities can be 

both healthy and well (Krahn 2003). And good health 

opens the door to employment and education for persons with disabilities, just as it does for persons who do 

not have disabilities. 

This Call to Action’s goals and strategies for action, 

too, are based on a growing body of scientific knowledge and evidence-based practice about disability, 

health and wellness. They also recognize the costs of 

inaction in both human and economic terms. The impetus for this Call to Action has been the recognition that 

health is a key to realizing the goals of the President’s 

New Freedom Initiative (NFI) for persons with disabilities. Only with accessible, comprehensive health care 

and wellness promotion services can all persons with 

disabilities enjoy the intent of the NFI: full, engaged and 

productive lives in their communities. 

Surveys have found that a substantially lower percentage of persons with disabilities than those without 

disabilities report their health to be excellent or very 

good (28.4% versus 61.4%) (Centers for Disease Control 

and Prevention 2004a). While at risk for the same ailments and conditions as people in the general population (for example, injury, obesity, hypertension and the 

common cold), persons with disabilities also are at specific risk for secondary conditions that can damage their 

health status and the quality of their lives (Kinne et al 

2004; Rimmer et al 1996; Hough 1999; Simeonsson and 

Leskinen 1999). Yet, particularly when it comes to 

access, many health and wellness programs do not 

address the needs of persons with disabilities. 

Healthy People 2010, the national health promotion 

agenda, has included health indicators designed to 

measure how America is promoting the health of persons with disabilities, to prevent secondary conditions 

and to eliminate health disparities that now affect persons with disabilities. It identified four main misconceptions that continue to plague how disability status has 

been perceived: (1) disability is equated with poor heath 

status; (2) public health should focus only on preventing 

disabling conditions; (3) no standard definition of disability is needed for public health purposes; and (4) the 

environment is not a factor in the genesis of disability. 

These Healthy People 2010 goals are reflected in 

those of the Call to Action, which calls for: (1) public 

knowledge and understanding about disability, (2) 

provider training and capacity to see and treat the 

whole person and not just a person’s disability, (3) health 

and wellness promotion for persons with disabilities, 

and (4) access to needed health care services for persons 

with disabilities. The balance of this section discusses 

these goals. 

GOAL 1: People nationwide understand that persons 

with disabilities can lead long, healthy, productive lives. 

Despite progress in science, technology and advocacy, disabilities of all kinds are still equated—incorrectly and by too many people—with ill health, incapacity 

and dependence. Welner and Temple (2004) point out 

that the misperception remains that “only a person who 

is physically agile and neurologically intact can be considered healthy.” Similarly, with regard to individuals 

with mobility difficulties, Iezzoni (2003) has observed 

that “much of society still holds persons with mobility 

difficulties individually responsible for problems....” 

Early disability advocate and sociologist Irving Zola 

(1982) suggested some believe that mobility difficulties 

are a weakness or personality defect to be overcome. 

Age-old perceptions, misunderstandings and fears, 

while still prevalent, are far from the reality of disability 

today. 

The reality is that with accommodations and supports, ample access to health care, engagement in wellness activities and the impetus that comes from supportA Personal Story—Ignorance 

When my son, who has cerebral palsy (CP), 

her to plan another play date for the boys, she told 

hung up and cried. 

was around 2 years of age, I took him to visit an old 

college friend who had a child the same age. We 

hadn’t been in touch for a while; she didn’t know 

my son had CP. The visit was brief. When I called 

me that she didn't think we could do that because 

she didn’t want her son to “catch” my son’s CP. I 

10 Call to Action 
A Personal Story— 

Disability Isn't Inability 

Children from across the United States and 

Europe compete in the National Junior Disabled 

with coaches, teams and parents. Just like other 

athletes. They set personal bests, captured medals 

and set new benchmark records, just as other amaBut the reporters often don't “get it.” The 

Headlines: “Disabled boy sets records...suffers 

ered spinal cord.... Children afflicted with a disabilWhen one boy saw the newspaper headline 

about his boy sets 

“Guess what they called me? They called me 

Sports Championships. Many travel long distances 

Olympians-in-training, many train year round as 

teur and professional athletes have done. 

from spina bifida.... An athlete who suffers from 

cerebral palsy.... Another who suffers from a sevity....” 

achievements—Disabled 

records—he was devastated. He called his father at 

work: 

a disabled boy.” He never felt the only thing important about him was that he was disabled. It was part 

of him, but never all of him. 

ive friends and families, persons with disabilities can— 

and do—lead long, productive, healthy lives. Issues 

about disability and the lives of persons with disabilities 

increasingly are becoming part of the American consciousness and are beginning to be addressed. 

A recent Henry J. Kaiser Family Foundation survey 

(2004) found that a majority (82%) of those surveyed 

thought that persons with disabilities overall have “better lives today than they had 50 years ago”; however, 

almost two thirds believed that at least some discrimination continues against persons with disabilities. Around 

40 percent believed that the health care system treats 

persons with physical disabilities unfairly. The survey 

also found that over half (58%) of all people surveyed 

had read, seen, or heard about the Americans with 

Disabilities Act of 1990 (ADA). When told the specific 

content, an overwhelming majority said they supported 

its key provisions. Large majorities indicated support 

for health reforms to benefit persons with disabilities. 

When not specifically mentioned, disability was 

rarely identified as a concern by persons without disabilities. It became a concern only when it was posed as 

an issue on which to voice an opinion. One of the challenges, then, is to identify ways in which the health and 

wellness of persons with disabilities can be brought to 

the consciousness of the American public as an issue 

warranting effective action and ongoing attention. 

Challenging the misconceptions about persons 

with disabilities—and elevating the importance of their 

health and wellness in the public consciousness—are 

steps that can begin to help improve the health status of 

persons with disabilities. At the same time, changing 

attitudes toward persons with disabilities can help the 

public recognize and address the environmental, social 

and economic barriers that undermine the ability of persons with disabilities to become and remain full participants in community life. 

GOAL 2: Health care providers have the knowledge 

and tools to screen, diagnose and treat the 

whole person with a disability with dignity. 

Health care providers and their staff may harbor 

many of the same misconceptions about persons with 

disabilities as are found in the general public. Too often, 

health care service programs and personnel have not 

adopted the biopsychosocial approach to disability. 

Reports from persons with disabilities suggest that 

health care providers often focus on their disabling condition rather than on other health issues that might be of 

concern to the individual (Panko Reis 2004). In part, this 

is the product of the historical “compartmentalization” 

of health care education and training. 

As a result, individuals with disabilities often 

encounter professionals unprepared to identify and 

treat their primary and secondary conditions and any 

other health and wellness concerns. For example, when 

it comes to persons disabled by mental illness, health 

care providers need to be aware of and respond to the 

A Personal Story— 

term is not used today in medical treatment or eduschizophrenia, I found the questionnaire language 

too? I hoped not and told him so. 

Sensitivity Training Needed 

I was referred to a specialist for treatment of 

chronic asthma. Because I’d never been to that doctor’s office before, I was asked to complete a standard medical questionnaire. It was standard until it 

asked, “Do you have a history of insanity?” The 

cation. As a middle-aged woman in recovery from 

insensitive and stigmatizing. Was this a potential 

indication about the sensitivity of the practitioner, 

Call to Action 11 
full array of medical, physical, psychosocial, cultural 

and spiritual issues associated with—and separate 

from—an individual’s mental disorder. They need to 

recognize that mental illnesses, as other disabling conditions, need to be treated within the larger context of the 

individual, including the range of other health care 

needs that might require medical attention (U.S. 

Department of Health and Human Services, 2000; U.S. 

Department of Health and Human Services 2003). 

When visiting a health care provider, a person, 

without regard to disability status, should reasonably 

expect that the provider has expertise and knowledge 

about health care and wellness promotion, the ability to 

hear and respond to articulated health concerns, the 

ability to communicate clearly, culturally and directly, 

and the willingness to spend the time necessary to be 

fully responsive (Kaplan and Sullivan 1996; Iezzoni 

2003; Welner and Temple 2004), Unfortunately, this is 

not always the case. 

Still other health care providers seem to believe it is 

the job of a person with a disability, not of a health care 

professional, to work to overcome provider and service 

limitations. Others are willing to be responsive to the 

comprehensive health needs of an individual with disabilities, but have trouble creating the kind of providerpatient partnership needed to promote optimal health. 

Iezzoni (2003) describes how persons with mobility disabilities characterize some of their health care professionals, suggesting that some “just don’t listen”; some 

“don’t think”; some “just say you have to live with it”; 

and still others just “rush in and rush out,” often as the 

result of patient load and cost-efficiencies. Some individuals with disabilities suggest that some doctors, 

under the misguided belief that the only acceptable outcome of treatment should be cure, distance themselves 

from their patients with disabilities because they represent treatment failures in some way (Iezzoni 2003; 

Barnard 1995). Further, when it comes to early detection 

and prevention of health problems, Krahn (2003) has 

reported that both adult and pediatric primary care 

providers tended not to refer their patients with disabilities for such services unless they are directly related to 

their individual disabilities. 

Frequently, health care providers do not recognize 

individuals with disabilities as either knowledgeable 

partners in discussing care options or as “experts” with 

respect to their own medical conditions. In some cases, 

persons with disabilities believe they do not receive sufficient information from their health care providers— 

most often primary care providers—to play an informed 

role in their own health care decisions (Masuda 1999). In 

other cases, effective communication is frustrated due to 

the limited availability of assistive supports, such as the 

use of interpreters for persons who are deaf or hard of 

hearing. In still other cases, persons with disabilities are 

excluded from discussions about their health issues 

altogether, by being treated in much the same way as 

children are excluded from the conversation between 

pediatrician and concerned parent (Iezzoni 2003; Welner 

and Haseltine 2004). 

These issues seem to be exacerbated for individuals 

with sensory disabilities—hearing loss, deafness, blindness and low vision—that center around the key issues 

of respect, physical access, communication and inaccessible information formats (O’Day et al 2004; Iezzoni et al 

2004). While assistive devices and technologies (including interpreters for signing) can improve communication between such individuals and their health care 

providers, their availability and use are limited and not 

always best adapted for all patients, such as older adults 

with late life onset of limited vision, blindness, or deafness whose experience with adaptive methodologies, 

such as signing, might be scant. 

Further, persons with disabilities have noted that, 

when they find a physician or other health care provider 

willing to engage them as partners in care, considerable 

time needs to be spent educating the health care 

provider both about the disability and about the nature 

of the often unrelated health concern that brought them 

to the provider in the first place. A survey by the Henry 

J. Kaiser Family Foundation (2003) disclosed that among

nonelderly persons with disabilities, 25 percent reported 

that they had difficulty finding a doctor who “understands my disability.” 

This finding is not entirely surprising because 

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. This compounds the need for physicians and 

other health care providers to receive ongoing training 

and education on a discipline-by-discipline basis about 

the health care challenges of persons with disabilities 

and on current and promising best practices in care. 

Until health care provider training curricula and continuing education practices change, when confronted by a 

health care provider lacking sufficient skill to serve an 

individual with a particular disability, a person with a 

disability should seek another practitioner more sensitive and well-trained in the needs of persons with disabilities. 

12 Call to Action 
Secondary Conditions 

The presence of a particular disability is not the 

only factor a health care provider should consider when 

working to meet ongoing, quality health and wellness 

needs of a person with a disability. Rather, the health 

care provider should also pay close attention to the person’s full range of health concerns, including the onset 

of possible secondary conditions. These are medical, 

social, emotional, family, or community problems for 

which a person with a primary disabling condition is at 

increased risk (Marge 1988; Simeonsson and Leskinen 

1999; Krause and Bell 1999; McMillen et al 1999; Wilber 

et al 2002). 

Some have suggested that the high direct health 

care costs of disability are a result of insufficient attention early on to secondary and other health needs of 

individuals with disabilities. The result is increasing 

numbers of persons with multiple, complex and often 

preventable, chronic conditions and a health care system insufficiently prepared educationally, structurally 

and economically to recognize and address those needs 

(Panko Reis et al 2004; U.S. Department of Health and 

Human Services 2003; Institute on Disability and 

Development 2003). The vast majority of these secondary conditions can be mitigated with early intervention; 

many can be prevented altogether. 

Some individuals with disabilities develop no specific secondary health issues related directly to the condition or conditions accompanying their disabilities. 

Rather, they require only a routine regimen of ongoing 

health care. However, many persons with disabilities 

experience secondary conditions directly related to their 

disability. 

A recent Centers for Disease Control and 

Prevention-supported study by Kinne and colleagues 

(2004), the first population-based prevalence study of its 

kind, suggests why clinical attention to secondary conditions among persons with disabilities is a critical element in the quality-of-life equation. They found that 87 

percent of persons with disabilities reported experiencing a secondary medical condition. 

Persons of all ages with disabilities are susceptible 

to secondary conditions. For example, urecognized and 

untreated depression coupled with another kind of disability potentially places children at risk for poor school 

performance, developmental delay lost potential as 

adults in the workforce and community, and suicide 

(U.S. Department of Health and Human Services 2003).

Depression also is not an uncommon secondary condition among adults with such potentially disabling illnesses as diabetes, arthritis and heart disease. In persons 

of all ages, mobility limitations can lead to decubitus 

A Personal Story—Doing It Right 

months of age. One of the first questions the diagForced to think 

about a future for a child just diagnosed with a 

his own health care—and not just for the management of his cystic fibrosis. 

Throughout his childhood, with the support of 

ity for his own health care for his cystic fibrosis and 

for other routine health problems, such as flu, colds 

and sprained ankles. He also learned skills to probeen able to enjoy a full life with—not despite—his 

increasingly disabling cystic fibrosis, thanks in large 

part to a doctor who treated him as a person with a 

diagnosed. 

Jim was diagnosed with cystic fibrosis at 3 

nosing doctor asked his mother was “Where do you 

want your son to be in 20 years?” 

genetic disorder that, at the time, had an average 

life expectancy of 14 years, she articulated her hope 

that her son could go to college. Together, the physician and Jim’s mother began planning for his future 

and for college. Part of that thinking was finding 

ways to help Jim learn to assume responsibility for 

By 2-1⁄2 years of age, Jim was encouraged to ask 

questions about his health. Jim says, “I was never 

looked down on because I was younger or sick. I 

was always asked the most serious questions about 

my health. And they valued what I had to say.” 

his family, school and health care providers, Jim 

was able to take on increasing levels of responsibilmote his wellness—exercise, healthy diet and 

avoiding alcohol and tobacco. 

Today, Jim is 24, recently married, working, 

and preparing to buy a home. He believes he has 

future, not just a disability, from the day he was 

ulcers (pressure sores), lost muscle tone and gait instability. Substance use disorders occur more often in persons with a disability than in the general population. 

This includes problems related to the abuse of prescription medications as well as illicit drugs (Moore and Li 

1998; Heinemann et al 1991; Fann et al 1995). Moreover, 

an injury such as a hip fracture, may give rise to fears 

about loss of independence, triggering depression, lowered immune function and factors that can exacerbate or 

increase the risk for still other secondary conditions. 

These issues take on particular significance for older 

adults, who run a greater-than-average risk of multiple 

Call to Action 13 
disabling conditions than do younger individuals 

(National Institute of Mental Health 1999). 

Campbell and colleagues (Centers for Disease 

Control and Prevention 2002) reported that a substantially higher percentage of persons with disabilities 

experienced obesity than did persons without disabilities. Similarly, a person who depends on a wheelchair 

for mobility might experience other medical conditions 

beyond obesity that are related to that limited mobility, 

such as osteoporosis, loss of muscle tone and bowel dysfunction. It has been observed that children with certain 

developmental disabilities tend to be predisposed to 

pulmonary infections, emotional disturbance and obesity secondary to their developmental disability. A person 

with a spinal cord injury might have secondary conditions such as decubitus ulcers, infections and osteoporosis. Persons with conditions that affect the ability to feel 

pain, such as spinal cord injury or diabetes, unknowingly can injure themselves and develop life-threatening 

infections. Persons with disabilities, regardless of 

whether their disabilities are visible to others, are all 

susceptible to equally “invisible” health concerns such 

as clinical depression, substance use disorders and the 

risk for suicide. In fact, Moore (2002) estimates that as 

many as 1.5 million individuals with disabilities may 

need substance use disorder treatment in any given 

year. 

On the positive side, both research and clinical 

efforts to help prevent—or at least reduce—the incidence of secondary conditions are ongoing (Hough 

1999; Simeonsson and Leskinen 1999). 

GOAL 3: Persons with disabilities can promote their 

own good health by developing and maintaining healthy lifestyles. 

Healthy living is a positive concept—a concept that 

has been highlighted through health promotion and disease prevention efforts for people of all ages, from 

smoking cessation to obesity control, from the value of 

exercise to the benefits of mental health. Maintaining 

good health by adopting healthy lifestyle choices, both 

physical and mental, is a key component of a satisfying 

life. It is a goal of the U.S. Department of Health and 

Human Services, and embodied in both its HealthierUS 

Initiative and the objectives for Healthy People 2010. 

When it comes to persons with disabilities, healthy 

behaviors and a drive toward positive health across the 

life span need be no different than it is for persons who 

do not experience disabilities. Indeed, for persons with 

disabilities, health promotion efforts can be of critical 

importance. Studies have shown that individuals with 

help, and mutual support groups, friends, my relanature—all these measures help me remain whole 

A Personal Story—Taking Control 

To me, recovery means I try to stay in the driver’s seat of my life. I don’t let my mental illness run 

me. Over the years, I have worked hard to become 

an expert in my own self-care. Being in recovery 

means I don’t just take medications; rather, I use 

medications as part of my recovery process. Over 

the years, I have learned different ways of helping 

myself. Sometimes, I use medications, therapy, selftionship with God, work, exercise, spending time in 

and healthy—even though I have a disability. 

disabilities can run a higher-than-average risk for such 

preventable chronic problems as osteoporosis, obesity, 

diabetes and heart disease (Center et al 1998; Walsh et al 

2001; Coyle and Santiago 2000; Nosek 2000; Pitetti and 

Tan 1990; Rimmer et al 1993; Rimmer et al 1996). 

Similarly, research has shown that by engaging in 

healthful behaviors such as exercise, persons with disabilities can lower the risk of these common chronic 

problems. Further, they can prevent additional 

disability-related losses (for example, muscle tone, bone 

density and dexterity) and increase overall mental and 

physical wellbeing (Compton et al 1989; Janssen et al 

1994; Santiago et al 1993; Thomas 1999). 

Both the 1996 Report of the Surgeon General on 

Physical Activity and Health: Persons with Disabilities 

and the subsequent Closing the Gap: A National 

Blueprint for Improving the Health of Individuals with 

Mental Retardation (2002) emphasized that individuals 

with disabilities should engage in health promotion and 

wellness activities. Both underscored the importance of 

individual responsibility for healthy behaviors by perA Personal Story—Exercise at Any Age 

age of 80, I can once again maintain an erect posture 

ting dishes in cupboards. 

For several years, I was unable to stand up or 

stretch my arms above my head. I had to use a walker. At the age of 74, I had lumbar spinal fusion to 

correct this problem. But I eventually had to rely on 

a walker again. At the age of 77, my wife and I 

joined a fitness club. We started doing cardiovascular conditioning and strength building. Now, at the 

and stretch my arms over my head—great for put14 Call to Action 
sons with disabilities to help prevent the occurrence of 

secondary conditions. 

However, significant data suggest that persons 

with disabilities do not participate in wellness programs 

or health screening activities at the same level as do persons without disabilities. For example, Healthy People 

2010 has indicated that, while 68 percent of women who 

are older than 40 years of age and who do not have disabilities have had a mammogram, the percentage drops 

to 54 percent among women with disabilities (U.S. 

Department of Health and Human Services 2000). The 

2000 National Health Interview Survey similarly found 

that the percentage of nonelderly adults with mobility 

limitations who received preventive health services, 

including cholesterol screening and blood pressure 

checks, was considerably lower than that of persons 

without disabilities in the same age range (Centers for 

Disease Control and Prevention 2004). 

Persons with disabilities generally are not benefiting from health promotion screening and wellness programs because the focus of health care professionals 

often remains on their disabilities alone, and not the 

needs of the whole person. Further, health promotion 

and illness prevention information, programs and activities often are not tailored to the needs of individuals 

with particular disabilities (Welner and Temple 2004). 

Programs for screening, behavior change and exercise, 

for example, need to be highlighted and encouraged by 

primary care providers, perhaps working with health 

clubs and others to meet the individual needs of persons 

with disabilities. Thierry and Cyril (2004) note that persons with disabilities, particularly women, need health 

promotion efforts that address such issues as physical 

activity, clinical prevention and access to care. Such programs also should promote healthy lifestyles (for example, diet, smoking and alcohol consumption), with specific reference to data reflecting the rates of untoward 

health effects for individuals with disabilities. 

Because health care and health promotion 

providers alike often focus solely on a person’s disability rather than on the full range of health and wellness 

needs of each person as an individual, they may fail to 

communicate health promotion messages that are given 

routinely to persons who are not disabled (Coyle and 

Santiago 2000). This counseling is necessary to empower individuals to take personal steps to improve their 

health and wellness. Data from the 2002 Behavioral Risk 

Factor Surveillance System (Centers for Disease Control 

and Prevention 2004), which provides health indicator 

data for all 50 states, the District of Columbia, tribal governments and U.S. Territories, found that a higher percentage of persons with disabilities were obese, were 

current daily smokers and were physically inactive 

(Table 4). Moreover, while a large percentage of individuals with disabilities reported engaging in some type of 

physical activity in their leisure time, a high percentage 

reported greater obesity and adverse effects from stress 

compared with persons who do not have disabilities. 

The higher prevalence of risk factors among disabled 

individuals suggests that counseling about good health 

practices can be increased above its current rates. 

(Branigan et al 2001) (Table 5). 

Health communication materials that target individuals with disabilities are scant (Thierry and Cyril 

2004), despite growing recognition that health communication represents a significant arena in which public 

health initiatives can promote knowledge and foster 

adoption of beliefs, attitudes and behaviors that promote overall health for persons with disabilities. 

Health promotion and wellness services and materials often are not adapted for use by persons with disabilities. Similarly, most health promotion resource professionals—such as wellness counselors and trainers— 

lack the knowledge of both how best to communicate 

with individuals with disabilities and how to work with 

them to meet their often specialized wellness goals. For 

example: 

Table 4: Prevalence of Risk Factors in Persons with Disabilities and Persons without Disabilities 

Persons With 

Disabilities 

Persons Without 

Disabilities 

Current smoker 30.2% 21.7% 

Physically inactive 

Obese 

25.3% 

20.5% 

13.4% 

18.6% 

Source: Behavioral Risk Factor Surveillance System, CDC, 2004 

Call to Action 15 
Table 5: Percentage of Counseling/Inquiries Made at Last Health Maintenance Examination for Persons with 

Disabilities 

Counseling/Inquiry Topic Inquiry made (%) 

Changes in functional status 38.3 

Emotions 41.8 

Diet 35.3 

Exercise 38.8 

Smoking 15.4 

Alcohol consumption 13.4 

Sleep 41.3 

Pain 46.3 

Sunscreen use 11.9 

Sexuality (ever discussed) 28.4 

Source: Adapted from Branigan et al 2001 

• Health promotion instructions might be written at 

too high a reading level for a person with an intellectual disability; they also might be unavailable in 

formats accessible to persons with visual impairments (e.g., Braille or interactive technology). 

• Screening programs might not be equipped to 

examine persons with disabilities appropriately 

(e.g., lack of universal equipment and screening 

devices) and screening facilities might not be accessible for examinations. 

• Exercise facilities might not have adaptive equipment. 

• Health care and wellness providers might not know 

how to educate persons who have disabilities that 

compromise mobility, vision, sensation or cognition 

about how best to perform breast self-examinations 

or self-assessments for skin cancer. 

For all of these reasons, increased counseling by 

health care and wellness service providers and accessible information about preventable risk factors (e.g., 

smoking, diet, inactivity, etc.) that can lead to secondary 

health problems would likely provide persons with disabilities with tools they need to help improve their 

health status. 

Equally daunting is the fact that many individuals 

with disabilities do not recognize their need to become 

advocates for their own wellness activities because they 

simply do not “see” or know about materials and messages about health promotion directed toward them. 

16 Call to Action 

A Personal Story—Exercise Opens Doors 

exhausted and in ongoing pain. Combined with 

increasing degeneration and deformity of my joints, 

Both added to the burden of disability I experimuch I eat against my body's ability to use it. I exercise portion control, which helps me keep meal 

cise, but I can do aqua exercise, and I skipper a 

With a combination of autoimmune disorders, 

my body fights itself daily. Juvenile rheumatoid 

arthritis, fibromyalgia and scleroderma leave me 

my wheelchair isn’t just helpful any more; it’s 

become a necessity. 

The result was mobility, but at the price of substantial weight gain and decreased muscle tone. 

enced. A hip fracture woke me up. Even though I sit 

in a wheelchair, I can be fitter and lighter by adopting a healthy lifestyle tailored just for me. Every 

day, I eat carefully and healthfully. I balance how 

planning simple. And I’ve found ways to exercise 

physically, too. It doesn't matter what your disability is; there is a way to be more physically active 

than you are today. I can’t do weight-bearing exermodified sailboat. The best news is that I don’t just 

look better; I feel better and am more involved in 

my world, too. 
• Literature, videos, presentations and materials 

found on the World Wide Web primarily show 

images of persons who do not have disabilities 

engaging in healthy behaviors. 

• Programs that promote exercise rarely show individuals with mobility impairments involved in 

physical activity. 

• Few, if any, programs, literature or products 

designed to promote healthy diet mention persons 

with disabilities as a target population, include one 

or more person with a disability in visuals, or otherwise suggest that diet needs to be a concern to this 

population. 

• Few wellness seminars routinely include discussions to motivate or instruct individuals with disabilities toward resources they can use best. At 

most, a separate concurrent session might be 

offered, removing those individuals with disabilities from mainstream discussion and participation. 

However, the critical need for individuals with disabilities to engage in health promotion is grounded in 

Tables 4 and 5 (above). Perhaps most important, studies 

have shown that health promotion programs that focus 

on improving functioning across a spectrum of diagnoses and a range of age groups can reduce secondary 

conditions and visits to health care providers. For example, a focus on exercise to improve strength, flexibility 

and muscle tone can help avoid some secondary conditions for persons who are mobility impaired (Melnikova 

et al 1998). 

Achieving optimal health is a goal for everyone. 

The notion of health promotion for persons with disabilities is a new and emerging area in research and prevention programming. Health disparities—many mitigated 

by environmental factors—exist for persons with disabilities, in part due to insufficient information about 

and available services for wellness promotion. 

Fortunately, many health promotion interventions 

already in place could be adapted easily to the needs of 

persons with disabilities. 

GOAL 4: Accessible health care and support services 

promote independence for persons with disabilities. 

Without regard to the number and types of health 

care issues facing an individual with disabilities, access 

to the full range of all health care and services to meet 

his or her specific needs is a key factor that can affect his 

A Personal Story— 

Battlefield to Playing Field 

He tells newly 

son that they used to be” in both body and mind. 

While serving in the Military Police in Iraq, 

Steve was severely injured in a roadside bomb 

attack. Despite 15 operations at Walter Reed to save 

his badly damaged leg, it was amputated in January 

2005. He was fitted with a prosthesis and given 

physical therapy. Thanks to a rehabilitation sports 

program, not only was he skiing again in 6 months, 

but he also runs and rides a bicycle. Steve observed 

that getting involved in sport has decreased his 

recovery time because “I stay more active and try 

new, more challenging activities.” 

wounded soldiers that the need to understand that 

“a tragic injury does not have to be the end of their 

world. Functionality, mobility and independence 

happen on many different levels.... Sports rehab 

programs give soldiers a renewed sense of the peror her health throughout a lifetime. It is clear that, at 

present, existing health care and wellness systems— 

including the providers who staff them, as noted earlier—are not sufficiently responsive to the needs of these 

individuals. In part, this may be the product of gaps in 

training and education. As a result, access to prevention, 

screening, diagnosis, treatment and services for both 

disability- and nondisability-related health care can be 

limited, incomplete, or misdirected. 

The literature has reported numerous impediments 

to maintaining good health for persons with disabilities. 

For example, to get care from a physician or other health 

care provider, an individual with a disability must be 

able to make an appointment; get to the clinical care setting or office; get into the building and office; be able to 

communicate health needs and health history; have 

access to the appropriate facilities and equipment to 

receive care; and be able to spend sufficient time and to 

communicate clearly with the clinician to resolve the 

one or more health concerns to be addressed (Allen and 

Mor 1997; Branigan et al 2001; Jones and Tamari 1997; 

Nosek 2000). 

More simply stated, the barriers relate primarily to 

accessibility. They include such factors as transportation 

to get to the health care site, access to the building and 

the necessary health facilities in the building, access to 

the health care provider and staff for sufficient time and 

with sufficient supports to promote clear and complete 

communication. (Table 6) Jackson (2004) refers to these 

Call to Action 17 
Table 6: Access to Care for Persons with Disabilities: Challenges and Consequences 

Challenges when attempting to access health care 

Transportation problems 

Inaccessibility of facilities or services 

Lack of provider knowledge about disability 

Untimely appointments 

Inaccessible, untimely and inconvenient, particularly 

in rural areas. 

Physical accessibility of health care provider offices, 

examination rooms and equipment; and both 

personnel untrained to communicate with and 

absence of translators for persons with hearing and 

visual disorders. 

Limited skills set to address the comprehensive 

health care and health promotion needs of persons 

with disabilities, including medical conditions either 

unrelated to or secondary to the disabilities. 

Delays with referral process and scheduling. 

Consequences of delayed or denied access to care 

Physical Declining condition, energy and mobility; inability to 

engage in community life, work and activities of 

daily living; increased secondary medical conditions. 

Psychological Compromised emotional well-being, reduced selfesteem, depression and stress. 

Economical Increased time off from work amounts to reduced 

income; need for more health care leads to increased 

costs; reduced income leads to reduced consumer 

opportunity 

Social Relationships and social roles strained, restricted or 

limited participation in family and social activities. 

Independence issues Decreased independence due to combination of any 

or all of the previously mentioned issues. 

*Adapted from a qualitative survey conducted by the National Rehabilitation Hospital, Center for Health and 

Disability Research 

18 Call to Action 
contact with her family and friends; the distance 

either tribal ritual or cultural activities. She felt as if 

result, she became depressed, withdrawn, and 

found herself unable to participate fully in her 

school. 

A Personal Story: Too Far from Home 

Carol was born both blind and deaf. She lived 

with her family on a remote reservation in Montana, 

and neither assistive technology nor appropriate 

health and support programs were available to her. 

To help her get the services she needed, she was 

sent away to a school for the deaf and blind, located 

over 350 miles from her home. She lost all but brief 

was too great for visits. She was unable to engage in 

she had lost connection to who she was; Carol 

missed her family and her home community. As a 

concepts as: “getting there”; “getting in”; clarifying 

needs; the doctor’s clock; and overcoming attitudes. 

Iezzoni and colleagues (2002) reported that costs of 

care were a source of particular dissatisfaction by persons with disabilities. Nearly 30 percent of nonelderly 

adults with disabilities reported that they were “dissatisfied” with the costs of their care, compared with 17.6 

percent of nonelderly adults who did not have disabilities. 

Physical barriers are another common impediment 

to getting care. Frequently cited physical barriers 

include issues related to getting to a treatment site in the 

first place and, once there, getting in and getting treatment. Making an appointment is the first potential hurdle. For persons with hearing loss, telephone access to 

make an appointment can be complicated if TTY, TDD, 

or other assistive technology is not available for use in 

making appointments, or if staff are trained insufficiently in receiving relay calls or making arrangements for 

auxiliary aids and services. For some persons with mental and developmental disabilities, the logistics of traveling to a health care provider are difficult, if not impossible, to negotiate. Remembering routes, bus times, transit 

payments and the location of the treatment program can 

be challenging. Challenges of accessible transit for persons with limited mobility, communication difficulties 

for individuals with sensory impairments and sheer distance for anyone with any kind of disability can complicate access to care. The last challenge is particularly 

acute for individuals with disabilities who live in rural 

areas (Branigan et al 2001; Jones and Tamari 1997; Nosek 

2000; Iezzoni et al 2002). 

take the doctor more time with me. They really 

A Personal Story—It’s a Cold 

Once I had a doctor’s appointment at 9 in the 

morning with a family practitioner. I was in my 

wheelchair. The nurses moved some of the other 

patients ahead of me. They wanted to get them 

taken care of first, because they thought it would 

didn’t know what my complaint was; all they saw 

was my wheelchair and made an assumption about 

my health needs. I could have had a common cold. 

Once at a health care facility, other potential physical barriers arise. Accessibility remains an issue for some 

facilities. To raise awareness about the ADA, the Office 

for Civil Rights in the U.S. Department of Health and 

Human Services and the U.S. Department of Justice 

have engaged in a number of education and technical 

assistance activities. Both also have investigated a number of complaints about accessibility and secured relief 

where violations have been found. Panko Reis and colleagues (2004) have observed that, despite the legal ramifications and sanctions that can be imposed by the 

ADA, most offices of health care providers remain 

insufficiently accessible. This trend continues despite 

the fact that the U.S. Department of Justice has sought 

remedy for ADA violations on behalf of individuals 

with disabilities. Indeed, Panko Reis and colleagues 

(2004) suggest that health care providers “who serve 

patients in private offices appear to have little awareness 

of the ADA, particularly of their obligation to determine 

if a patient with a disability requires an accommodation 

and to provide that accommodation if possible.” To 

raise awareness about the ADA, the Office of Civil 

Rights in the U.S. Department of Health and Human 

Services and the Civil Rights Division in the U.S. 

Department of Justice engage in education and technical 

assistance activities, investigate complaints about accessibility, and secure relief where violations are found. 

Frequently, treatment sites do not have adaptive 

equipment that can meet the needs of individuals with 

disabilities, from changing rooms with narrow doorways to examination tables too high or too flat for comfort, and from a lack of staff with sign language capability to communicate with a patient who has a hearing 

deficit to toilets that are not accessible to wheelchairs or 

scooters. These physical barriers to care alone can 

reduce the likelihood that persons with disabilities will 

receive timely and appropriate services. 

For example, the quality and scope of a full gynecological examination for a woman with a mobility disCall to Action 19 
ability requiring the use of a wheelchair could be compromised in the absence of a universally adaptable 

examination table. Without appropriate equipment, a 

full examination might not be possible. Few, if any, 

women without mobility disabilities would be asked to 

remain seated in a chair for a comparable examination. 

The result for a woman with a mobility disability can be 

more than discomfort; the result might well be an 

incomplete, potentially inaccurate, examination. Over 

time, the result could lead to the development of a secondary condition that might have been prevented had it 

been found earlier during a complete, thorough examination using adaptable, accessible equipment. Women 

with disabilities are largely underexamined, underdiagnosed and undermanaged (Welner et al 1999, Welner 

and Haseltine 2004). 

Thus, the consequence of failing to receive appropriate, coordinated care as the result of access difficulties alone can result in poor health and increased secondary conditions. Consequences also can resonate in 

other aspects of life: lost productivity, lost wages, 

increased health care costs and compromised overall 

quality of life. 

However, models exist that seek to reduce problems with coordinated, appropriate health care with the 

potential to improve the ways in which health care 

providers approach their patients with disabilities. 

Among them are efforts to identify and test promising 

practices in community-based care, such as those now 

underway at the Centers for Medicare and Medicaid 

Services and other agencies in the U.S. Department of 

Health and Human Services that focus on service delivery and best practices in health care. Other efforts are 

working to assess best ways to integrate care across 

health and service needs. 

20 Call to Action 
IV. Vision for the Future

Principle 

Good health is necessary for persons with disabilities to secure the freedom to work, learn and 

engage in their families and communities. 

Goals 

GOAL 1: People nationwide understand that persons 

with disabilities can lead long, healthy, productive lives. 

GOAL 2: Health care providers have the knowledge 

and tools to screen, diagnose and treat the 

whole person with a disability with dignity. 

GOAL 3: Persons with disabilities can promote their 

own good health by developing and maintaining healthy lifestyles. 

GOAL 4: Accessible health care and support services 

promote independence for persons with disabilities. 

The health and wellness of persons with disabilities 

today is a matter of public health concern. As this Call to 

Action suggests, what is called for are better approaches 

to new knowledge, new technologies and new systems 

of services that emphasize a team approach and partnerships with persons with disabilities themselves. What is 

needed are health care providers who see and treat the 

whole person, educators willing to teach about disability, a public that sees beyond the disability to see a whole 

person, and a community that provides accessible 

health and wellness services for persons with disabilities. 

With the four goals as a guide, this section of the 

Call to Action identifies specific challenges that must be 

overcome to realize the principle that with good health, 

persons with disabilities have the freedom to work, 

learn and engage actively in their families and their 

communities. The 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 access or availability to persons 

with disabilities. 

This section also suggests strategies for action and 

research priorities that can lead to improved interaction, 

communication and cooperation of the health care system and related services with persons with disabilities. 

Taken together, they represent ways in which the individual objectives and, ultimately, the goal of this Call to 

Action can be realized for 54 million Americans who, 

today, are living with a disability. 

GOAL 1: People nationwide understand that persons with disabilities can lead long, 

healthy, productive lives. 

Challenges 

• Misperceptions persist that disability is the equivalent of poor health. 

• The lack of uniformity in the use of the term “disability” affects public knowledge and understanding about the health and wellness needs of persons 

with disabilities. 

• This incomplete public understanding of disability 

often means that the needs of persons with disabilities are often overlooked when decisions about 

community adaptations, health and service delivery 

and public policy are made. 

Strategies 

• Promote the use of language to describe persons 

with disabilities that emphasizes the individual, not 

the disability first. This use of “people first” language that refers to persons with disabilities recognizes that individuals with disabilities are—first 

and foremost—persons with inherent value, individuality, dignity and capabilities and helps raise 

Call to Action 21 
awareness of and reduce stigma and discrimination 

against persons with disabilities. 

• Consider health literacy when making health and 

wellness information about persons with disabilities 

available to the public. 

• Enhance understanding and acceptance of persons 

with disabilities of all ages nationwide by improving the content and dissemination of educational 

information in community programs, schools, faithbased programs, workplaces and at home about 

how persons with disabilities can lead long, healthy 

lives. 

• Encourage the entertainment industry to increase its 

portrayal of realistic characters with disabilities and 

their challenges and successes in maintaining good 

health. 

• Encourage the print and electronic media to 

increase coverage of disability-related issues and 

expand current health and wellness reporting to 

include ramifications for persons with 

• Continue to include age and specific disability status as demographic indicators in health surveys or 

surveillance systems. 

• Encourage persons with disabilities to join as partners in public health initiatives and include them on 

advisory committees as services are being planned 

by federal, state, tribal and local governments. 

GOAL 2: Health care providers have the knowledge 

and tools to screen, diagnose and treat the 

whole person with a disability with 

dignity. 

Challenges 

• Due to insufficient ongoing education and training 

for health care professionals and wellness service 

providers, the needs of persons with disabilities are 

often overlooked when decisions about community 

adaptations, health and service delivery and health 

care policy are made. 

• Health and other community-based support services are insufficiently integrated to meet the needs of 

the ‘whole person’ and not just the disabling condition. 

• Insufficient attention is paid by the health care system on the prevention of secondary conditions in 

persons with disabilities, specifically the prevention 

of important conditions such as obesity, type II diabetes, depression and substance abuse. 

Strategies 

• Encourage health care and wellness service 

providers to relate to persons with disabilities in 

ways that recognize their value, dignity and capabilities, whether communicating in person, electronically, or in writing. 

• Educate health care providers of persons with disabilities in an ongoing manner about state-of-the-art 

health services and supports that should be available to the patients with disabilities. 

• Ensure that both clinical and health services 

research include persons with disabilities across the 

life span, particularly in areas in which health disparities in risk, access and outcome exist 

• Increase in an ongoing manner health care provider 

awareness of and compliance with laws designed to 

protect the rights of individuals with disabilities. 

• Identify currently available disability-oriented 

training curricula and programs for health care 

providers, assess if the training curricula are 

evidence-based and delineate the next steps necessary to advance the adoption of evidence-based 

training curricula focused on persons with disabilities in professional and other service provider training and continuing education. 

• Promote development and use of medical equipment and devices that allow universal access to all 

recommended screening and diagnostic tests and 

treatments. 

• Enhance and broaden the content and expand the 

use of educational and training materials for health 

22 Call to Action 
care providers that focus on the health care and 

wellness needs of persons with disabilities, including secondary conditions 

• Create a series of provider handbooks that include 

best practices and current resources to educate 

health professionals and service providers about the 

value of wellness promotion for persons with disabilities. 

• Promote practical experiences with persons with 

disabilities in health and service provider training 

and continuing education. Include in this training 

information regarding civil rights and disability, 

including the health care ramifications of the 

Americans with Disabilities Act. 

• Promote researcher experiences with persons with 

disabilities in health care research training programs. 

• Promote the development of research to enhance 

the evidence base for best practices in clinical service delivery for persons with disabilities. 

• Promote interdisciplinary collaboration in scientific 

pursuits and to improve clinical research networks 

to advance better prevention, early diagnosis and 

treatment of disabilities and secondary conditions. 

• Analyze the content and diffusion of information 

about persons with disabilities that is used in health 

care settings. 

GOAL 3: Persons with disabilities can promote their 

own good health by developing and maintaining healthy lifestyles. 

Challenges 

• Misperceptions exist regarding the positive role 

wellness promotion can play for persons with disabilities. 

• Policy and infrastructure emphasis continues to be 

placed on both acute illness and on the acute elements of disability rather than on prevention and 

health maintenance for persons with disabilities. 

Strategies 

• Conduct health research to identify and support 

effective health promotion programs for persons 

with disabilities. 

• Educate persons with disabilities, their families and 

advocates in an ongoing manner about state-of-theart wellness and prevention activities. 

• Consider health literacy when making health and 

wellness information accessible to persons with disabilities. 

• Provide increased health promotion and wellness 

training opportunities specifically for persons with 

disabilities, their family members, personal attendants and advocates, ensuring that both focus on 

the whole individual and not just the disability. 

• Encourage health systems to use all media, 

computer-based, internet and other adaptive or 

assistive technologies when planning and developing health information for persons with disabilities. 

Encourage them to include materials that will be 

accessible to individuals with limited English proficiency. 

• Include persons with disabilities in all stages of 

health care and wellness promotion communication 

research, including formative research, message 

development and testing, identification of appropriate communication strategies and channels and 

evaluations of effectiveness. 

• Identify evidence-based best practices for health 

promotion among persons with disabilities by 

developing, implementing, evaluating and disseminating strategies to translate into practice the results 

of research. 

Call to Action 23 
GOAL 4: Accessible health care and support services promote independence for persons with 

disabilities. 

Challenges 

• Persons with disabilities may have difficulty getting 

to health care providers, getting in and getting 

around the service setting, being able to benefit 

from health care equipment in the service setting, 

and communicating with the health care provider 

and staff about their health needs and concerns. 

• Insufficient numbers of health care services programs have the tools, skills and capacities to meet 

the full range of health care and wellness needs of 

persons with disabilities. 

Strategies 

• Develop and implement surveys to assess the full 

range of health needs of persons with disabilities, 

including whether and how those needs are being 

met by providers and facilities in communities 

nationwide 

• Advance accountability by all health service delivery programs, including clinical and community 

preventive services, to ensure that persons with disabilities have full access to their services. 

• Bring inventors, clinicians and industry together 

through more effective incubator and development 

programs to collaborate efficiently and effectively to 

enhance research and development of assistive technology for all types of disabilities. 

• Encourage research efforts that collaborate and 

partner with integrated community-based provider 

networks to include individuals with disabilities in 

those efforts. 

• Continue to develop community-based, public-private partnerships to facilitate coordinated, integrated care of persons with disabilities. Include collaboration with transportation, education and wellness 

providers. Include communication between all 

providers and the disability community about the 

benefits of wellness resources. 

• Encourage the development of integrated, multidisciplinary service teams to provide one-stop health 

care for persons with disabilities. 

• Encourage or develop partnerships to facilitate 

coordinated, integrated care for populations identified as traditionally underserved, including persons 

with disabilities who are members of racial or ethnic 

groups. 

• Promote and disseminate the adoption of new treatments, models of care and adaptive or assistive technologies (for example, making available specialized, 

adaptive cognitive and psychiatric research applications of assistive technology for individuals with 

communication deficits as well as a mental disorder). 

• Identify key elements of best practices in health 

service delivery for persons with disabilities and, 

among existing health service delivery programs for 

this population, identify highlighted models that 

are using the key element and assess why they are 

successful. 

• Identify and implement in community-based care 

evidence-based best practices in health service 

delivery for persons with disabilities. 

24 Call to Action 
V. Advancing the Call Nationwide

This Call to Action is designed to expand knowledge, understanding and action by a broad range of 

individuals, groups and organizations. Each has a role 

to play in advancing the principle that good health is 

necessary for persons with disabilities to secure the freedom to work, learn and engage actively in their families 

and their communities. While all disabilities are as different as the individuals who experience them, the challenges and opportunities for persons with disabilities 

often are similar. 

Health, Wellness and Service Professionals 

Health care providers, service support systems and 

the programs that train and educate them can gain from 

this Call to Action. Old attitudes about the relationship 

between disability and health can be changed; opportunities for better ways for health care providers to work 

with individuals with disabilities can be identified; and 

partnerships in treatment, education and health promotion can be forged. 

Community Leaders and Influencers 

This Call to Action can, and should, resonate with 

community leaders in both the public and private sectors (including employers and the media) and persons 

who craft or influence the creation of community programs. The goal and objectives, and how they are implemented as strategies at the community level, can both 

incentivize and yield dividends for employers of persons with disabilities, including greater productivity 

and lower overall health costs due to secondary illnesses. Advocates for persons with disabilities can use this 

Call to Action to promote the involvement of individuals 

with disabilities as equal partners in all aspects of 

American life. 

The Media and Entertainment Industries 

The media and entertainment industries can help 

educate persons with disabilities about ways to meet 

their own health and wellness needs by enabling individuals with disabilities to see, hear and read about 

“persons just like them” in electronic, print and audio 

media. All forms of broadcast and print media, and all 

forms of public entertainment can be used to further 

needed public education to open minds about individuals with disabilities of all kinds. 

Policy Makers and Administrators 

Policy makers in both the public and private sectors 

can foster collaborations, partnerships and approaches 

to accessible, integrated services that span federal, state, 

tribal and local governments to improve access to and 

affordability of health and wellness services for persons 

with disabilities. This Call to Action can point to new 

directions in both policies and programs that will yield 

savings in both economic and human terms, from 

changes in how programs address the whole individual 

and not just a person’s disabilities, to ways to remove 

impediments to wellness promotion for persons with 

disabilities across the life cycle. 

The Public 

This Call to Action is about the education of 

America to the reality that persons with disabilities are 

just like everyone else. Their health and wellness needs 

are much the same as those of individuals without disabilities, although sometimes more difficult to achieve. 

Their disabilities are just one aspect of their lives and 

should not define who they are or what they can 

become. 

Persons with Disabilities, Families and 

Advocates 

Individuals of all ages with disabilities, their families and the organizations that represent them can translate the objectives in this Call to Action using the strategies for action recommended in the “Vision for the 

Future” section in the conduct of their daily lives. These 

same strategies can be applied as well to the places 

where they live, work, play and learn. Some strategies 

might present opportunities for personal growth. 

Others might provide impetus for local coalition building to respond to the health and wellness needs of persons with disabilities and for advocacy to ensure that 

these needs are met. 

Call to Action 25 
VI. The Call to Action at a Glance

About 54 million Americans of all ages, races, ethnicities, socioeconomic status and education levels are 

living with at least one disability. That is more than 20 

percent of the people in the United States. A disability 

may affect the body, mind or senses and can limit a person from taking part in day-to-day life. People may be 

born with or acquire a disability, and most people in the 

United States will have a disability at some point in their 

life. 

Health and illness exist at different levels; so, too, 

does disability. However, disability is not an illness. 

Illnesses can vary in degree from person to person. The 

same is true for disabilities. The same disability may 

affect one person in a different way than it does another. This is particularly true if someone cannot get needed treatment or services. 

Persons without disabilities do not always understand what life is like for persons with disabilities. This 

is something that needs to be changed. To do this, it is 

important to make everyone aware of the barriers that 

may prevent persons with disabilities from becoming 

and remaining active in their community. 

The principle on which this Call to Action is based 

is: Good health is necessary for persons with disabilities 

to have the freedom to work, learn and engage actively 

in their families and their communities. 

To make this happen, this Call to Action looks to 

reach the following goals: 

• People nationwide understand that persons with 

disabilities can lead long, healthy, productive lives 

• Health care providers have the knowledge and tools 

to screen, diagnose and treat the whole person with 

a disability with dignity. 

• Persons with disabilities can promote their own 

good health by developing and maintaining healthy 

lifestyles. 

• Accessible health care and support services promote 

independence for persons with disabilities 

These will not be easy tasks. Many barriers stand in 

the way. For example, more research needs to be done 

about disability, health care providers need to be better 

educated and trained, and health care and services for 

persons with disabilities need to be easier to access. 

This Call to Action is based on what is known and 

what has been observed about disability, health and 

wellness. It touches on the costs of inaction, in both 

human and dollar-and-cent terms. However, its main 

focus is on the need to put complete health care within 

the reach of persons with disabilities. Thus, person with 

disabilities will be able to lead a full life in their community. 

This Call to Action is important for leaders in both 

the public and private sectors and for people who make 

or have input to community programs. The goals, put 

into action, can help employers of persons with disabilities increase work output and lower total health care 

costs. People who work with and for persons with disabilities can use this Call to Action to make others aware 

that persons with disabilities can be equal partners in all 

aspects of American life. 

The health and wellness for persons with disabilities today is a matter of public health concern. Everyone 

needs to be made aware of the health issues for persons 

with disabilities. Swift action needs to be taken to ensure 

that these matters are brought to the attention of those 

who can help. Without such action, the quality of life for 

54 millions Americans will be lessened. To that end, the 

principle and goals that define this Call to Action must 

be acted upon. Barriers must be identified and solutions 

must be found and, more importantly, set into motion. 

This Call to Action provides a blueprint for these 

solutions. It clearly states the challenges, strategies and 

research priorities that are required. These four areas 

were crafted with input not only from health specialists 

in the disability field, but also with input from members 

of the disability community. Therefore, it is not just the 

science side of disability that is presented, but also the 

reality of living with disability by those who do it daily. 

The cost of disability to the nation is measured not 

only in dollars, but in human lives. When a person with 

a disability is “lost” because the existing health care system cannot provide the needed level of care, it is a loss 

for everyone. Understanding the health and wellness of 

persons with disabilities is the first step to help change 

that situation. That is what this Call To Action is all 

about; that is why disability is a critical public health 

issue today. 

26 Call to Action 
VII. Appendices

Call to Action 27
References

Allen SM, Mor V. The prevalence and consequence of 

unmet need: Contrasts between older and younger 

adults with disabilities. Medical Care 35:1132–1148, 

1997. 

American Association of People with Disabilities. About 

AAPD. Washington DC, American Association of 

People with Disabilities, 2004; www.aapddc.org/docs/info.html#top. 

Americans with Disabilities Act of 1990 (ADA). P.L. 101-

336 (July 26, 1990). Title 42 U.S.C. 12101 et seq. U.S. 

Statutes at Large, 104, 327-378. 

Barnard D. Chronic illness and the dynamics of hoping. 

In Toombs SK, Barnard D, Carson RD (Eds.), 

Chronic Illness: From Experience to Policy. 

Bloomington IN, Indiana University Press 1995. 

Braddock D and Parish SL. An institutional history of 

disability. In Braddock D (Ed.). Disability at the 

Dawn of the 21st Century and the State of the States. 

Washington DC, American Association on Mental 

Retardation, 2002, 3-61. 

Brandt EN, Pope AM (Eds.). Enabling America: Assessing 

the Role of Rehabilitation Science and Engineering. 

Washington DC, National Academy Press, 1997. 

Branigan M, Stewart D E, Tardif G, Veltman A. 

Perceptions of primary healthcare services among 

persons with physical disabilities; Part 2: Quality 

issues. Medscape General Medical, April 06, 2001. 

Calkins E, Boult C, Wagner E, Pacala JT. New Ways To 

Care for Older People: Building Systems Based on 

Evidence. New York NY, Springer, 1999. 

Center J, Beange H, McElduff A. Mentally retarded individuals: A population at risk? Medicine and Science 

in Sports and Exercise 23(5):586-593, 1998. 

Centers for Disease Control and Prevention. Unpublished 

analysis of Behavioral Risk Factor Surveillance System, 

2001, 2004. 

Centers for Disease Control and Prevention. Summary 

health statistics for the U.S. population, National 

Health Interview Survey, 2002. National Vital Health 

Statistics Reports 10(220), 2004. 

Centers for Disease Control and Prevention, National 

Center for Health Statistics. National Vital Health 

Statistics Reports 51(3): Table 11, December 19, 2002. 

Centers for Disease Control and Prevention, National 

Center for Health Statistics. State and Local Area 

Integrated Telephone Survey: the Children with Special 

Health Care Needs Module, 2000; 

www.cdc.gov/hchs/about/major/slaits/cshcn.htm. 

Centers for Disease Control and Prevention. Prevalence 

of disability and associated health conditions 

among adults – United States 1999. Morbidity and 

Mortality Weekly Report.50(7):120-125, 2001. 

Cherry Engineering Support Services, Inc. Federal 

Statutory Definitions of Disability Prepared for the 

Interagency Committee on Disability Research, 2003; 

www.icdr.us/documents/ (Accessed on-line, 2004) 

Clancy CM, Andresen EM. Meeting the health care 

needs of persons with disabilities [commentary]. 

Milbank Quarterly 80(2):381-91, 2002. 

Compton DM, Eisenman PA, Henderson HL. Exercise 

and fitness for persons with disabilities. Sports 

Medicine, 7(3):150–162, 1989. 

Coyle CP, Santiago MC. Healthcare utilization among 

women with physical disabilities. Medscape 

Women’s Health eJournal 7(4), 2000; www.medscape.com/viewarticle/433156. 

DeJong G, Palsbo SE, Beatty PW, Jones GC, Kroll T, Neri 

MT. The organization and financing of health services for individuals with disabilities. Milbank 

Quarterly 80(2):261-301, 2002. 

Fann JR, Katon WJ, Uomoto JM, Esselman PC. 

Psychiatric disorders and functional disability in 

outpatients with traumatic brain injuries. American 

Journal of Psychiatry 152:1493-1499, 1995. 

Federal Interagency Forum on Age-Related Statistics. 

Older Americans 2004: Key Indicators of Well-being. 

Washington DC, US Government Printing Office, 

2004. 

Francis LP, Silvers A (Eds.). Americans with Disabilities: 

Exploring Implications of the Law for Individuals and 

Institutions. New York NY: Routledge, 2000. 

Heinemann AW, Doll MD, Armstrong KJ, Schnoll S, 

Yarkony GM. Sbustance abuse and receipt of treatment by persons with long-term spinal cord 

injuries. Archives of Physical Medicine and 

Rehabilitation 72:482-487, 1991. 

Henry J. Kaiser Family Foundation. Americans’ Views 

of Disability: A Kaiser Health Poll Report, May/June 

2004; www.kff.org/healthpollreport/. 

Henry J. Kaiser Family Foundation. Understanding the 

Health-care Needs and Experiences of People with 

Disabilities: Findings from a 2003 Survey. Menlo 

Park CA, The Henry J. Kaiser Family Foundation, 

December 2003. 

Hough J. Estimating the Health Care Utilization Costs associated with People with Disabilities: Data from the 1996 

Medical Expenditure Panel Survey (MEPS). Annual 

meeting of the Association for Health Services 

28 Call to Action 
Research, Los Angeles, CA 2000. 

Hough J. Disability and Health. A national public health 

agenda. In: Simeonsson RJ, McDevitt LN (Eds.). 

Issues in Disability and Health. The Role of Secondary 

Conditions and Quality of Life. Chapel Hill NC, 

University of North Carolina Press, 1999. 

Iezzoni LI, O’Day BL, Killeen M, Harker H. 

Communicating about health care: Observations 

from persons who are deaf or hard of hearing. 

Annals Internal Medicine 140:356-363, 2004. 

Iezzoni IL. When Walking Fails: Mobility Problems of 

Adults with Chronic Conditions. Berkeley and New 

York, University of California Press and the 

Milbank Memorial Fund, 2003. 

Iezzoni LI, Davis RB, Soukup J, O’Day B. Satisfaction 

with quality and access to health care among people with disabling conditions. International Journal 

on Quality of Health Care 14:369-381, 2002. 

Institute on Disability and Development (Ed.), 

Proceedings of Changing Concepts of Health and 

Disability: State of the Science Conference and Policy 

Forum 2003. Portland OR, Oregon Health and 

Science University, 2003. 

Jackson K. Healthcare for people with disabilities: 

Making it through the maze. Social Work Today, 

July-August 2004, 12-16. 

Janssen TW, van Oers CA, van der Woude LH, 

Hollander AP. Physical strain in daily life of wheelchair users with spinal cord injuries. Medicine and 

Science in Sports and Exercise 26(6): 661–670, 1994. 

Jones K E, Tamari IE. Making our offices universally 

accessible: Guidelines for physicians. Canadian 

Medical Association Journal 156(5):647–656, 1997. 

Kaplan SH, Sullivan LM. Maximizing the quality of the 

physician-patient encounter. Journal of General 

Internal Medicine 11(3):187-188, 1996. 

Kinne SK, Patrick DL, Doyle, DL. Prevalence of secondary conditions among people with disabilities. 

American Journal Public Health 94(3):443-445, 2004. 

Krause JS, Bell RB. Measuring quality of life and secondary conditions: Experiences with spinal cord injury. 

In RJ Simeonsson and McDevitt (Eds.) Issues in 

Disability and Health: The Role of Secondary 

Conditions and Quality of Life, Chapel Hill NC, 

University of North Carolina Press, 1999. 

Krahn G. Changing concepts in health, wellness and disability, in Institute on Disability and Development 

(Ed.), Proceedings of Changing Concepts of Health and 

Disability: State of the Science Conference and Policy 

Forum 2003. Portland OR, Oregon Health and 

Science University, 2003. 

LaPlante MP, Kaye HS (Eds.). Trends in Disability and 

Their Causes: Proceedings of the Fourth National 

Disability Statistics and Policy Forum. Washington 

DC: National Institute on Disability and 

Rehabilitation Research, US Department of 

Education, 1998. 

Leigh JP, Markowitz S, Fahs M, Shin C, Landrigan PJ. 

Occupational injury and illness in the United Sttes: 

Estimates of costs, morbidity, and mortality. 

Archives of Internal Medicine 157:1557-1568, 1997. 

Luckasson R, Borthwick-Duffy S. Mental Retardation: 

Definition, Classification, and Systems of Support, 10th 

ed. Washington DC, American Association on 

Mental Retardation 2002. 

Marge M. Health promotion for persons with disabilities: Moving beyond rehabilitation. Am J Health 

Promotion 2(4):29-44, 1988. 

Masuda S. Women with Disabilities: We Know What We 

Need To Be Healthy. Vancouver BC, British Columbia 

Centre of Excellence for Women’s Health, 1999. 

McMillen JS, Simeonsson RJ, McDevitt L. Preventing 

secondary conditions and promoting health, wellbeing and quality of life. In RJ Simeonsson and 

McDevitt (Eds.) Issues in Disability and Health: The 

Role of Secondary Conditions and Quality of Life. 

Chapel Hill NC, University of North Carolina 

Press, 1999. 

McNeil JM. Americans with Disabilities, Household 

Economic Studies, Current Population Reports P70-73, 

1-20. February 2001; www.census.gov/prod/ 

2001pubs/p70-73.pdf. 

McNeil JM. Americans with disabilities 1994-1995. 

Current Populations Report P7061:3-6, August 1997. 

McNeil JM, Binette J. Prevalence of Disabilities and 

Associated Health Conditions Among Adults— 

United States, 1999. Morbidity and Mortality Weekly 

Report 50(7):120-125, 2001. 

Melnikova N, Hough J, Lollar D. Osteoporosis among 

women with physical disabilities: Risk factors and 

protective factors. Paper presented at 126th annual 

meeting of the American Public Health 

Association, November 17, 1998. 

Moore D. Plenary 1: Introduction to the issues. In 

Wolkstein E (Ed.) Proceedings of the Second National 

Conference on Substance Abuse and Coexisting 

Disabilities. Dayton OH, Wright Sate University 

School of Medicine, 2002. 

Moore D, Li L. Prevalence and risk factors of illicit drug 

use by people with disabilities. American Journal on 

Addictions 7:93-102, 1998. 

National Heart, Lung and Blood Institute, Facts About 

Cystic Fibrosis. Bethesda MD; National Institutes of 

Health, November 1995; www.healingwell.com/ 

library/cysticfibrosis/info2.asp. 

National Institute of Child Health and Human 

Call to Action 29 
Development. Facts about Down Syndrome, 

NICHD/NIH website, 2004; 

www.nichd.nih.gov/publications/pubs/downsyndrome/down.htm. 

National Institute of Mental Health. Depression Shares 

Symptoms with Other Medical Conditions, 1999; 

www.nimh.nih.gov/depression/senior/shares.htm. 

National Organization on Disability. 2004 NOD/Harris 

Survey on Community Participation. New York, NY, 

Harris Interactive, Inc., 2004 

National Spinal Cord Injury Statistical Center. Spinal 

Cord Injury: Facts and Figures at a Glance. 

Birmingham AL, University of Alabama, 2001; 

www.spinalcord.uab.edu. 

Nosek MA. The John Stanley Coulter lecture. 

Overcoming the odds: The health of women with 

physical disabilities in the United States. Archives 

Physical Medicine and Rehabilitation, 81(2):135–138, 

2000. 

O’Day BL, Killeen M, Iezzoni LI. Improving health care 

experiences of persons who are blind or have low 

vision: Suggestions from focus groups. American 

Journal Medical Quality 19(5):193-200, 2004. 

Panko Reis J, Breslin ML, Iezzoni, LI, Kirschner KL. It 

Takes More Than Ramps to Solve the Crisis of 

Healthcare for People with Disabilities. Chicago IL, 

Rehabilitation Institute of Chicago, 2004 

Parish SL. Forces shaping developmental disabilities 

services in the States: A comparative study. In D 

Braddock (Ed.). Disability at the Dawn of the 21st 

Century and the State of the States. Washington DC, 

American Association on Mental Retardation, 2002, 

353-475. 

Pelka F. The ABC-CLIO Companion to the Disability Rights 

Movement. Santa Barbara CA, ABC-CLIO, 1997. 

Pitetti K H, Tan DM. Cardiorespiratory responses of 

mentally retarded adults to air-brake ergometry 

and treadmill exercise. Arch Physical Medicine 

Rehabilitation 71(5):318–321, 1990 

Pope AM, Tarlov AR. Disability in America: Toward A 

National Agenda For Prevention. Washington DC, 

National Academy Press, 1991. 

Rehabilitation Act of 1973. US Code, vol 29, sec. 701 et 

seq. 1973. 

Rimmer JH, Braddock D, Fujiura G. Prevalence of obesity in adults with mental retardation: Implications 

for health promotion and disease prevention. 

Mental Retardation 31(2):105–110, 1993. 

Rimmer JH, Braddock D, Pitetti KH. Research on physical activity and disability: An emerging national 

priority. Medicine and Science in Sports and Exercise 

28(11):1366–1372, 1996. 

Santiago MC, Coyle C P, Kinney WB. Aerobic exercise 

30 Call to Action 

effect on individuals with physical disabilities. 

Archives Physical Medicine and Rehabilitation 

74(11):1192–1198, 1993. 

Shapiro JP. No Pity: People with Disabilities Forging a New 

Civil Rights Movement. New York NY, Times Books, 

1994. 

Simeonsson RJ, Leskinen M. Disability, secondary conditions and quality of life: Conceptual issues. In RJ 

Simeonsson and McDevitt (Eds.). Issues in Disability 

and Health: The Role of Secondary Conditions and 

Quality of Life. Chapel Hill NC, University of North 

Carolina Press, 1999. 

Surgeon General of the United States: 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, 

Government Printing Office, 2002. 

Surgeon General of the United States. Physical Activity 

and Health: A Report of the Surgeon General. 

Washington DC, Government Printing Office, 1996. 

Thierry JM, Cyril JK. Health of women with disabilities: 

From data to action. In Welner LS, Haseltine F (Eds.). 

Welner’s Guide to the Care of Women with Disabilities. 

Philadelphia PA, Lippincott Williams and Wilkins, 

2004, 373-382. 

Thomas DC. Primary care for people with disabilities. 

Mount Sinai Journal of Medicine 66(3):188–191, 1999. 

U.S. Census Bureau. Profile of Selected Social 

Characteristics: 2000, Table DP-2, 2000; www.census.gov/Press-Release/www/2002/dptables/ 

2k00.xls 

U.S. Department of Health and Human Services.

Delivering on the Promise: Preliminary Report of 

Federal Agencies’ Actions to Eliminate Barriers and 

Promote Community Integration. Washington DC, US 

Department of Health and Human Services, 2001. 

U.S. Department of Health and Human Services. Healthy 

People 2010: Understanding and Improving Health, 

2nd Ed. Washington DC, U.S. Government Printing 

Office, November 2000. 

U.S. Department of Health and Human Services, New

Freedom Commission on Mental Health. Achieving 

the Promise: Transforming Mental Health Care in 

America: Final Report. DHHS Pub. No. SMA-03-

3832. Rockville MD, Substance Abuse and Mental 

Health Services Administration, 2003. 

U.S. Supreme Court, Olmstead vs. L.C. and E.W. 119 S. Ct. 

2176 (1999). 

Veltman A, Stewart D, Tardif G, Branigan M. 

Perceptions of primary healthcare services among 

people with physical disabilities. Part 1:Access 

Issues. Medscape Gen Med (serial online), April 6, 
2001; www.medscape.com/viewarticle/408122. 

Walsh PN, Heller T, Schupf N, van Schrojenstein L, de 

Valk H. Healthy Aging Adults with Intellectual 

Disabilities: Women’s Health and Related Issues. 

Geneva, World Health Organization, 2001. 

Welner LS, Haseltine F (Eds.). Welner’s Guide to the Care 

of Women with Disabilities. Philadelphia PA, 

Lippincott Williams and Wilkins, 2004. 

Welner SL, Temple B. General health concerns and the 

physical examination. In Welner LS, Haseltine F 

(Eds.). Welner’s Guide to the Care of Women with 

Disabilities. Philadelphia PA, Lippincott Williams 

and Wilkins, 2004. 

Welner SL, Foley CC, Nosek MA, Holmes A. Practical 

considerations in the performance of physical 

examinations on women with disabilities. 

Obstetrical Gynecological Survey 54(7):457–462, 1999. 

West J. The Americans with Disabilities Act: From Policy to 

Practice. New York NY, Milbank Memorial Fund, 

1991. 

Wilber N, Mitra M, Walker DK, Allen D, Meyers AR, 

Tupper P. Disability as a public health issue: 

Finding and reflections from the Massachusetts 

survey of secondary conditions. Milbank Quarterly 

80(2):393-421, 2002. 

Yamaki K, Rutkowski-Kmitta V, Fujiura GT. Emerging 

etiology of disablement: State and national policy 

implications, in Institute on Disability and 

Development (Ed.), Proceedings of Changing 

Concepts of Health and Disability: State of the Science 

Conference and Policy Forum 2003. Portland OR, 

Oregon Health and Science University, 2003. 

Yang Q, Rasmussen SA, Friedman JM. Mortality 

associated with Down’s syndrome in the USA from 

1983 to 1997: A population-based study. Lancet 

59(3):1019-1025, 2002. 

Zola IK. Missing Pieces: A Chronicle of Living with a 

Disability. Philadelphia PA, Temple University 

Press, 1982. 

Call to Action 31 
Acknowledgments 

This Call to Action was prepared by the U.S. Department of Health and Human Services under the 

direction of the Office of the Surgeon General and the HHS Office on Disability.

Richard H. Carmona, M.D., M.P.H., FACS 

Surgeon General, United States Public Health 

Service 

Office of the Surgeon General, Office of the 

Secretary 

Washington, D.C. 

Cristina V. Beato, M.D. 

Acting Assistant Secretary for Health 

Office of Public Health and Science, Office of 

the Secretary 

Washington, D.C. 

Margaret Giannini, M.D., FAAP 

Director 

Office on Disability, Office of the Secretary 

Washington, D.C. 

Kenneth P. Moritsugu, M.D., M.P.H. 

Deputy Surgeon General, United States Public 

Health Service 

Office of the Surgeon General, Office of the 

Secretary 

Washington, D.C. 

Robert C. Williams, P.E., DEE 

Chief of Staff 

Office of the Surgeon General, Office of the 

Secretary 

Washington, D.C. 

Jennifer Cabe, M.A. 

Writer 

Office of the Surgeon General, Office of the 

Secretary 

Washington, D.C. 

The editors of the report were 

Scientific Editor

Margaret Giannini, MD, FAAP 

Director 

Office on Disability 

Office of the Secretary 

Washington, DC 

Managing Editors

Edward Brann, MD, MPH 

Director 

Division of Human Development and Disability 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, GA 

Eileen Elias, MEd 

Deputy Director 

Office on Disability 

Office of the Secretary 

Washington, DC 

Scientific Writers

Theodora Fine, MA, ABD 

Senior Policy and Public Affairs Specialist 

Office on Disability 

Office of the Secretary 

Washington, DC 

JoAnn M. Thierry, PhD, MSW 

Behavioral Scientist 

Disability and Health Team 

Division of Human Development and Disability 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, GA 

Technical Editors 

Jameta Barlow, MPH 

Program Analyst 

Office on Disability 

Office of the Secretary 

Washington, DC 

Connie L. Whitehead 

Senior Writer-Editor 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, GA 
Federal Contributors 

Kari Benson 

Policy Analyst 

Administration on Aging 

Washington, DC 

Linda Bergofsky, MSW, MBA 

Disability, Aging and Long-Term Care Policy 

Office of the Assistant Secretary on Planning 

and Evaluation 

Washington, DC 

Vincent A. Campbell, PhD 

Associate Director for Science 

Division of Human Development and Disability 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, VA 

John E. Crews, DPA 

Lead Scientist 

Division of Human Development and Disability 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, GA 

Robin C. Deykes 

Investigator 

Civil Rights Division 

U.S. Department of Justice 

Washington, DC 

H. Stanley Eichenauer, MSW, ACSW 

Senior Advisor to the Administrator for 

 Mental Health System Transformation 

Substance Abuse and Mental Health Services 

Administration 

Rockville, MD 

Monique Fountain, MD, MPH, MBA 

Director, Medical Home and Healthy Ready to 

Work Initiatives (HRTW) 

Maternal and Child Health Bureau 

Health Resources and Services Administration 

Rockville, MD 

M. Leonard Genova 

Division of Partnership Development 

Centers for Medicare and Medicaid Services 

Baltimore, MD 

Susan N. Hill, MPA 

Senior Policy Advisor 

Disabled and Elderly Health Programs Group 

Center for Medicaid and State Operations 

Centers for Medicare and Medicaid Services 

Baltimore, MD 

Chris Kochtitzky, MSP 

Deputy Director 

Division of Human Development and Disability 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, GA 

Diana Lawry, MEd 

Aging Service Program Specialist 

Administration on Aging 

Washington, DC 

Alan Levine 

Senior Program Specialist 

Office of Evaluation and Inspections 

Office of the Inspector General 

Washington, DC 

Marianne Hamilton Lopez, MPA 

Emerging Leaders Program 

National Institutes of Health 

Bethesda, MD 

Saralyn Mark, MD 

Senior Medical Advisor 

Office on Women's Health 

Office of the Secretary 

Washington, DC 

Merle McPherson, MD 

Director, Division of Services for Children with 

Special Healthcare Needs 

Maternal and Child Health Bureau 

Health Resources and Services Administration 

Rockville, MD 

Jeanne McDowell 

Equal Employment Opportunity Staff 

Center for Devices and Radiological Health 

Food and Drug Administration 

Rockville, MD 

Taya McMillan, MPH 

Service Fellow 

Office of Women’s Health 

Office of the Secretary 

Washington, DC 
Daniel Morales, MPSA 

Acting Director of Communications, Office of 

Public Health and Science 

Office of the Secretary 

Washington, D.C. 

Ruby Neville, MSW, LGSW 

Public Health Advisor 

Center for Substance Abuse Treatment 

Substance Abuse and Mental Health Services 

Administration 

Rockville, MD 

Allan S. Noonan, MD, MPH 

Scientific Editor 

Office of the Surgeon General, Office of the 

Secretary 

Washington, D.C. 

Delores Parron, PhD 

Scientific Advisor for Capacity Development 

Office of the Director 

National Institutes of Health 

Bethesda, MD 

Jon Perez, PhD 

Director, Division of Behavioral Health 

Indian Health Service 

Rockville, MD 

Latonya Phipps, Esq 

Emerging Leader 

Office of Equal Opportunity and Diversity 

Management 

National Institutes of Health 

Bethesda, MD 

Louis Quatrano, PhD 

National Center on Medical Rehabilitation 

Research, 

National Institute of Child Health and Human 

Development 

National Institutes of Health 

Bethesda, MD 

Juliette Rizzo, MJ 

Special Assistant/Senior Public Affairs Specialist 

Office of Internal Communications 

U.S. Department of Education 

Washington, DC 

Margaret Schaefer, MA 

Program Specialist 

Administration on Developmental Disabilities 

Administration for Children and Families 

Washington, DC 

Peggy Schmidt, MEd 

Civil Rights Analyst 

Office for Civil Rights 

Office of the Secretary 

Washington, DC 

Curt Shannon, BA 

Writer-Editor 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

Atlanta, GA 

Craig Stevens, MA 

Director of Communications 

Office of the Surgeon General, Office of the 

Secretary 

Washington, D.C. 

Bonnie Strickland, PhD 

Chief, Integrated Services for Children with 

Special Health Needs 

Maternal and Child Health Bureau 

Health Resources and Services Administration 

Rockville, MD 

Charlene Tusan 

Staff Attorney 

Office of the General Counsel 

Office of the Secretary 

Washington, DC 

Janet Valluzzi, MBA, OTR/L 

Service Fellow 

Center for Financing, Access, and Cost Trends 

Agency for Healthcare Research and Quality 

Washington, DC 

Edwin Woo 

Acting Associate General Counsel 

Civil Rights Division 

Office of the General Counsel 

Office of the Secretary 

Washington, DC

Private Sector Contributors 

David B. Gray, PhD 

Associate Professor of Neurology and Associate 

Professor 

Occupational Therapy Program in Occupational 

Therapy 

Washington University School of Medicine 

St. Louis, MO 
Nancy Lee Head 

Mental Health Consumer, Retired Program 

Director 

National Alliance for the Mentally Ill, District of 

Columbia Chapter 

Arlington, VA 

 

Lisa Iezzoni, MD, MSc 

Professor of Medicine, Harvard Medical School 

Division of General Medicine and Primary Care 

Beth Israel Deaconess Medical Center 

Boston, MA 

John D. Kemp, JD 

Powers, Pyles, Sutter & Verville, L.C. 

Washington, DC 

Maggie Nygren 

Technical Assistance Director 

Association of University Centers on Disability 

Silver Spring, MD 

Marcie Roth 

Parent of children with disabilities 

Executive Director, National Spinal Cord Injury 

Association 

Bethesda, MD 

Clifford Thorne 

Chairperson 

District of Columbia State Rehabilitation 

Council 

Washington, DC 

Steven Towle 

Washington Liaison 

National Association of Alcohol, Drugs and 

Disability 

Rockville, MD 
MEDICARE AND MEDICAID 

Medicaid 

home-and 

ceplus/. 

• Medicaid Real Choice System Change Grants for Community Living are helping states rebalance their programs to prosuch areas as: 

• 

• 

gle point of consumer entry; 

• 

example, personal care attendants); and 

• 

ment. 

• 

The 

Medicare 

The 

• The 

• 

homes. 

• 

more on individual prescriptions. 

Medicare and Medicaid Services. 

Many persons with disabilities rely on the federal-state Medicaid program and the federal Medicare programs of the Centers for 

Medicare and Medicaid Services (CMS) to assist with their health care needs. Both provide a public safety net for persons with 

disabilities; historically, both also have limitations (e.g., biases toward acute and institutional care and against preventive or home 

health care). In the past, people have been forced to “follow the money” to more expensive—often less appropriate—care. However, 

recent innovations are helping states to promote individual choice and community-based alternatives. 

Home and community-based services are being provided by growing numbers of states through the CMS 

community-based services program (HCBS) and through Independence Plus waivers. Information about these programs is 

available on-line, respectively at < www.cms.hhs.gov/medicaid/1915c/design.asp> and <www.cms.hhs.gov/independenvide meaningful health care choices to enable individuals with disabilities and long-term illnesses to lead meaningful lives in the community. While states determine the areas on which to focus, the program is yielding results in 

Consumer direction and control of medical and other services—including eliminating barriers, creating individualized budgets, promoting transitions and selecting services needed; 

Consumer access to community-based, long-term care and supports, including workforce availability and sinState budgeting and reimbursement that provide optimum flexibility to meet individual consumer needs (for 

Quality assurance in service provision, including consumer feedback to promote continuous quality improveIntegration of multiple service systems to focus on the needs of individuals making states’ long-term support 

systems more efficient, effective and responsive to individual choices. 

Medicaid Buy-In Program, authorized by Congress under the Ticket to Work and Work Incentives Improvement 

Act of 1999, recognizes that eliminating barriers to health care and creating incentives to work can greatly improve the 

financial independence and well-being of beneficiaries with disabilities. The program, adopted at state option, allows 

people to go to work while retaining essential Medicaid health care benefits. 

Medicare Modernization Act includes a number of specific provisions that focus on the needs of individuals with 

disabilities who qualify for Medicare coverage: 

Chronic Care Improvement Program is a new demonstration program for people with multiple chronic conditions. Under the program, CMS will contract with private organizations to offer self-care guidance and support to 

chronically ill beneficiaries, helping beneficiaries manage all aspects of their health, adhere to their physicians’ 

plans of care and ensure that they seek or obtain medical care that they need to reduce their health risks. 

Participation by Medicare beneficiaries will be voluntary; participants will not have to change plans or providers, 

or to pay extra to participate. They will be able to stop participating at any time. 

A new demonstration project in Missouri, Colorado and Massachusetts is assessing a new definition of “homebound” that removes the limitation based on actual time spent away from home, eliminating concern among many 

homebound persons that they will lose access to home-based care if they engage in any activities beyond their 

New preventive services will become available in 2005, including an initial physical for new beneficiaries, coverage 

for cardiovascular screening blood tests for all beneficiaries and diabetes screening for high-risk beneficiaries. 

These services come on top of the new Medicare Part D prescription drug benefit that will allow Medicare beneficiaries to enroll in drug coverage through a prescription drug plan or Medicare health plan with Medicare paying for 75% 

of the premium. Additional benefits for Medicare beneficiaries who have limited means will cover, on average, 95% of 

their drug costs. All the new Medicare benefits are voluntary; beneficiaries may choose to keep their existing traditional coverage. Until that program is in effect (2006), individuals with disabilities and older adults will be able to use new 

medication discount cards to garner savings of about 10 to 15% on their total drug costs, with savings of up to 25% or 

Speedier Medicare Appeals can help ensure that individuals with disabilities are able to resolve appeals for Medicare 

benefits more quickly and efficiently as the result of a new Medicare-related program set in place by the Centers for 

Call to Action 35
Glossary of Terms

1973 Rehabilitation Act: A federal law that prohibits 

discrimination on the basis of disability in programs 

conducted by federal agencies (Section 504)), in programs receiving federal funding (Section 504), in federal employment (Section 501), and in the employment 

practices of federal contractors (Section 503). Section 

508 of the Act requires federal electronic and information technology to be accessible to persons with disabilities. This means it must be able to be operated in a 

variety of ways and not rely on a single sense or ability 

of the user. 

1999 Olmstead Decision: A decision by the U.S. 

Supreme Court that interpreted Title II of the 

Americans with Disabilities Act (ADA) and its implementing regulations to require states to administer 

services, programs, and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities,” a setting that “enables individuals with disabilities to interact with persons with 

no disabilities to the fullest extent possible.” Settings 

may range from home or community-based settings to 

residential care settings (such as assisted living) to 

institutional settings. Paramount is the opportunity for 

persons with disabilities to participate in community 

life, including everyday life activities, such as family 

relations, social contacts, work, educational advancement, and cultural enrichment. 

Accessibility: The degree to which an environment 

(physical, social, or attitudinal) makes appropriate 

accommodations to eliminate barriers or other impediments to equality of access to facilities, services, and 

the like, for persons with disabilities. 

Activities of Daily Living (ADL): Basic tasks of everyday life or personal functional activities required for 

continued well-being, including eating or nutrition, 

mobility (such as walking and getting in and out of a 

chair or bed), and personal hygiene (such as bathing or 

showering, dressing, and using the toilet). 

Adaptive or Assistive technology: Any item, piece of 

equipment, product, or system (whether off-the-shelf, 

modified, or customized) that is used to increase, 

maintain, or improve the functional capabilities of individuals with disabilities. 

Americans with Disabilities Act of 1990 (ADA): A 

federal law (P.L. 101-226) that prohibits discrimination 

on the basis of disability in employment, in public 

accommodations, in commercial facilities, in transportation, in telecommunications, and by state, tribal, 

and local government. Under the act, persons with disabilities are to receive “reasonable accommodations”— 

adjustments or modifications provided by an employer—that enable each individual with a disability to 

enjoy equal employment opportunities. 

Accommodations vary based on the needs of the individual applicant or employee. Not all people with disabilities (or even all people with the same disability) 

will require the same accommodation; each must be 

accommodated based on his or her individual needs. 

Attitudinal barrier: Negative viewpoints, behaviors, 

or actions by individuals or groups that limit another 

person's ability to function in the environment, leading 

to the state of disability. 

Attitudinal impediment: See Attitudinal barrier. 

Behavioral factors: Individual responses or reactions 

to internal stimuli and external conditions. Social and 

physical environmental conditions and situations, 

many of which are not under an individual's personal 

control, can exert a positive or negative effect on an 

individual or group. 

Behavioral disorder: A condition characterized by displaying behaviors that significantly deviate from 

socially acceptable norms for the individual's age and 

situation over a long period of time. This term generally is used to avoid the stigma of the term "mental illness" when describing these conditions in children and 

youth. 

Behavioral health: An integrated, interdisciplinary 

system of care related to mental health and substance 

use disorders that approaches individuals, families, 

and communities as a whole and addresses the interactions between psychological, biological, sociocultural, 

and environmental factors. 

Behavioral Risk Factor Surveillance System (BRFSS): 

A national telephone survey conducted by the Centers 

for Disease Control and Prevention that monitors state36 Call to Action 
level prevalence of major behavioral risks among 

adults for death and disability. The survey collects 

these data to help plan, initiate, and evaluate federal 

and other health promotion and disease prevention 

programs. 

Built environment: Any structures, spaces, and products that are created, modified, and used by people, 

such as buildings, parks, businesses, schools, and road 

systems. 

Caregiver: An individual, not necessarily a family 

member, who provides assistance to another person 

who experiences limitations in activities of daily living 

(ADLs) or instrumental activities of daily living 

(IADLs), or both. 

Chronic condition: Conditions lasting at least 3 

months that, once acquired, currently are not able to be 

cured. 

Chronic illnesses: See Chronic condition. 

Cognitive impairment: A loss or abnormality in the 

various mental processes that underpin an individual's 

ability to think or reason. 

Cultural competence: The provision of services, supports, or other assistance in a manner responsive to 

and respectful of the beliefs, interpersonal styles, attitudes, languages, and behaviors of individuals receiving these services, supports, or assistance, and in a 

manner that has the greatest likelihood of ensuring 

their maximum participation. 

Deinstitutionalization movement: An effort that 

began in the late 1950s to shift individuals with physical or mental illnesses or disabilities from institutional 

to community-based care settings. 

Developmental disability: A severe, chronic disability 

of an individual attributable to a mental or physical 

impairment or combination of impairments that (a) 

manifests before the individual attains 22 years of age; 

(b) is likely to continue indefinitely; and (c) results in

substantial functional limitations in three or more of 

the following areas of major life activity: self-care, 

receptive and expressive language, learning, mobility, 

self-direction, capacity for independent living and economic self-sufficiency, and the continuous need for 

individually planned and coordinated services. 

Direct cost: The economic cost incurred as a direct 

result of the presence of a disability. 

Functioning: An umbrella term referring to an individual's capacity related to body functions, activities, 

and participation in aspects of individual, family, and 

community life. It includes the positive aspects of the 

interaction between an individual and that individual's 

environment. 

Genetic predisposition: Susceptibility to a disease that 

is related to a genetic mutation, which might or might 

not result in actual development of the disease. 

Health literacy: The ability to comprehend basic concepts and tasks related to health. Health literacy programs include information on how to read prescription 

labels, consent forms, and communicate effectively 

with health care providers. 

HealthierUS Initiative: A White House initiative with 

the goal of helping Americans lead longer, better, and 

healthier lives by promoting physical activity, preventive screenings, balanced nutrition and healthy choices. 

Steps to a HealthierUS was established by the U.S. 

Department of Health and Human Services to advance 

the larger initiative. It targets public education and 

community-based grants to reduce the burden of diabetes, overweight, obesity, and asthma, and to address 

three related risk factors-physical inactivity, poor nutrition, and tobacco use. 

Healthy People 2010: A decade-long set of national 

disease prevention and health promotion objectives for 

America designed to identify and respond to the most 

significant preventable threats to individual health. It 

provides a snapshot of the nation's health at the beginning of the decade, establishes national goals and targets to be achieved within the decade, and monitors 

progress over time. 

Instrumental Activities of Daily Living (IADL): Skills 

and abilities related to independent living related to 

home, work, and the social environment. In the home, 

this can include but is not limited to the ability to 

engage in such activities as preparing meals, managing 

money, shopping for groceries or personal items, performing light or heavy housework, and using a telephone without the need for assistance from others. 

Call to Action 37 
Impairment: A loss, abnormality, or deficit in body 

structure or physiological function (including mental 

functions). Abnormality refers to significant variation 

from a population mean within measured standard 

norms. 

Indirect costs: The economic cost incurred collateral 

to, but not directly related to, the presence of a disability. 

Institutional setting: A facility in which an individual 

lives, often on a long-term basis, to receive services, 

often for a particular health problem. Such settings 

stand in contrast to community settings, where services 

are available as part of the area or neighborhood in 

which one lives. 

Intellectual disability: Once referred to as “mental 

retardation,” an impairment of thinking abilities that 

generally results in an intellectual quotient (IQ) equivalent that is two or more standard deviations below the 

average, or 70 or lower when the mean is 100. 

Intellectual disability often is a component of a developmental disability arising in an individual before he 

or she is 22 years of age. 

Interdisciplinary: Collaboration involving two or 

more academic, scientific, or artistic disciplines working together toward a single purpose. 

International Classification of Functioning, 

Disability, and Health (ICF): A classification of health, 

impairment, and disability created by the World 

Health Organization. The ICF is structured around 

three broad components: (1) body functions and structure; (2) activities (related to tasks and actions by an 

individual) and participation (involvement in a life situation); and (3) additional information on severity and 

environmental factors. Functioning and disability are 

viewed as a complex interaction between the medical 

condition of the individual and the contextual factors 

of the environment, as well as personal factors. The 

picture produced by this combination of factors and 

dimensions is of "the person in his or her world". The 

classification treats these dimensions as interactive and 

dynamic rather than linear or static. It allows for an 

assessment of the degree of disability, although it is not 

a measurement instrument. It is applicable to all people, whatever their medical condition. The language of 

the ICF emphasizes function rather than condition or 

disease. It also is designed to be relevant across cultures, as well as age groups and sex. 

Major life activity: Activities an individual needs to 

be able to perform to function adequately during the 

conduct of daily life. These include self-care, receptive 

and expressive language, learning, mobility, self-direction, capacity for independent living, and economic 

self-sufficiency. 

Medical home: An approach to providing health care 

in a high-quality, cost-effective manner in which families and individuals receive health care from a physician they know and trust. When a child is the patient, 

the parents and physician partner to identify and 

access all the medical and nonmedical services needed 

to help the child and family achieve maximum potential. 

Mental disorder: A clinically significant behavioral or 

psychological syndrome or pattern that occurs in an 

individual and that is associated with present distress 

(for example, a painful symptom) or disability (that is, 

impairment in one or more important areas of functioning) or with a significantly increased risk of suffering death, pain, disability, or an important loss of freedom. In addition, this syndrome or pattern must not be 

a culturally sanctioned response to a particular event 

(for example, the death of a loved one). Whatever its 

cause, it must currently be considered a manifestation 

of a behavioral, psychological, or biological dysfunction in the individual. 

Mental illness: See Mental disorder. 

New Freedom Initiative: A 2001 presidential initiative 

designed to help eliminate barriers to equality for 

many individuals with disabilities. Programs and proposals developed through the initiative are designed to 

(1) increase access to assistive and universally designed 

technologies; (2) expand educational opportunities; (3) 

promote homeownership; (4) integrate Americans with 

disabilities into the workforce; (5) expand transportation options; and (6) promote full access to community 

life. 

National Health Interview Survey (NHIS): A multipurpose, questionnaire-based health survey conducted 

by the Centers for Disease Control and Prevention's 

(CDC) National Center for Health Statistics (NCHS) to 

provide national estimates for a broad range of health 

measures for the U.S. civilian adult noninstitutionalized population. 

38 Call to Action 
Noninstitutionalized population: The population of 

civilians who are not residing in institutions. 

Institutions include, but are not necessarily limited to 

correctional facilities, detention homes, and training 

schools for juvenile delinquents; homes for the aged 

and dependent (for example, nursing and convalescent 

homes); homes for dependent and neglected children; 

homes and schools for persons with mental or physical 

disabilities; and long-term and residential treatment 

centers. 

People-first language: The practice of reshaping common language to refer to persons with disabilities in a 

manner that is more respectful and inclusive. By placing the “person” descriptor before the “condition” 

descriptor (for example, a woman who is deaf or a 

child with a developmental disability) people-first language recognizes that individuals with disabilities arefirst and foremost-persons with inherent value, individuality, dignity, and capabilities. 

Prevalence: The number of cases of a disease, number 

of infected persons, or number of persons with another 

quantifiable attribute at a particular point in time or 

during a particular period of time. Prevalence most 

often is expressed as a rate (for example, the prevalence of diabetes per 1,000 persons during a particular 

12-month period). 

Protective factor: Personal, family, and community 

elements that can improve a person's response to an 

environmental hazard resulting in an adaptive outcome. Such factors do not necessarily foster normal 

development in the absence of risk factors, but they can 

help mitigate the influence of risk factors. 

Quality of life: The relative degree of happiness and 

satisfaction with both one's life and environment. It 

encompasses health, recreation, culture, rights, values, 

beliefs, aspirations, and the conditions that promote a 

life containing these elements. Health-related quality of 

life specifically refers to an individual's sense of physical and mental health and well-being, and the ability to 

respond to the physical, social, and behavioral environment. 

Rehabilitation: Comprehensive program to reduce or 

overcome deficits following injury or illness, or to 

assist the individual to attain an optimal level of mental and physical ability. Rehabilitation is seen as a 

process leading to recovery of capacity, albeit not necessarily at a level that preceded the illness or injury 

that led to the impairment. 

Respite care: A short time of rest or relief for a person 

who acts as a caregiver for an individual with a disability. It allows the caregiver a break from day-to-day 

duties while the person with a disability receives care 

from another qualified individual or individuals. Such 

care can be provided in a home, community organization, or residential facility; for part of the day, evening, 

or overnight; by paid staff, volunteers, family, or 

friends; and occasionally or on a regular basis. 

Secondary condition: Medical, social, emotional, family, or community problems that a person with a primary disabling condition likely experiences. Common 

secondary conditions include pressure sores, urinary 

tract infections, and depression; from a social perspective, such secondary conditions also can include 

decreased social participation and unemployment. 

Secondary medical condition: See Secondary condition. 

Social Security Disability Insurance: A federal program, financed through Social Security taxes, providing wage replacement income for individuals with disabilities who also meet Social Security Administration 

disability rules. To be eligible, an individual (including 

disabled workers, widows, widowers, or children or 

adults disabled since childhood) must be unable to 

engage in any substantial gainful activity (SGA) due to 

any medically determinable physical or mental impairment(s) that can be expected to result in death or 

which has lasted or can be expected to last for a continuous period of not less than 12 months. In addition to 

being unable to perform his or her previous work, the 

person cannot, considering age, education, and work 

experience, engage in any other kind of SGA in the 

national economy. 

Substance use (or abuse) disorder: The misuse, 

dependence, and addiction to alcohol, or legal or illegal 

drugs, or both. The term encompasses a range of severity from “problem” through dependence and addiction. 

Supplemental Security Income Program: A program, 

administered by the Social Security Administration 

(SSA) since 1972, that enables eligible persons of low 

income and few resources who also are 65 years of age 

or older, blind, or disabled to receive monthly benefit 

payments. To be eligible based on a disability, an indiCall to Action 39 
vidual must meet the SSA definition of disability: 

unable to engage in any “substantial gainful activity” 

(SGA) due to any medically determinable physical or 

mental impairment(s) that can be expected to result in 

death or that has lasted or can be expected to last for a 

continuous period of not less than 12 months. 

Universal design: The creation of goods, products, and 

physical environments that are, to the greatest extent 

possible, both accessible and usable by all persons 

without the need for adaptation or specialized design. 

1998 Workforce Investment Act: A law that offers a 

comprehensive range of workforce development activities through state, tribal, and local organizations. 

Available workforce development activities provided 

in local communities are intended to benefit job seekers, including persons with disabilities. The goal is to 

promote an increase in the employment, job retention, 

earnings, and occupational skills improvement by participants, thereby improving the quality of the workforce, reducing welfare dependency, and improving the 

productivity and competitiveness of the nation as a 

whole. Title IV of the act further reauthorizes programs 

under the Rehabilitation Act and links these programs 

to state, tribal, and local workforce development systems. 

40 Call to Action 
Resources

Federal Departments, Agencies, and Offices 

Administration on Aging 

U.S. Department of Health and Human Services

http://www.aoa.gov 

Administration on Developmental Disabilities 

Administration for Children and Families 

U.S. Department of Health and Human Services

http://www.acf.gov 

http://www.acf.dhhs.gov/programs/add/index.htm 

Center for Financing, Access and Cost Trends 

Agency for Healthcare Research and Quality 

U.S. Department of Health and Human Services

http://www.ahrq.gov 

Centers for Medicare and Medicaid Services 

U.S. Department of Health and Human Services

http://www.cms.hhs.gov 

Clearinghouse on Disability Information 

Office of Special Education and Rehabilitative Services 

U.S. Department of Education

http://www.ed.gov 

Department of Defense 

http://www.defenselink.mil 

Department of Homeland Security 

http://www.dhs.gov 

Department of Housing and Urban Development 

http://www.hud.gov/groups/disabilities.cfm 

Department of Labor 

DisabilityInfo.gov 

http://www.disabilityinfo.gov 

Disability Rights Section 

Civil Rights Division 

U.S. Department of Justice

http://www.usdoj.gov/crt/drs/drshome.htm 

Division of Human Development and Disability 

National Center on Birth Defects and Developmental 

Disabilities 

Centers for Disease Control and Prevention 

U.S. Department of Health and Human Resources

http://www.cdc.gov 

Federal Transit Administration 

U.S. Department of Transportation 

http://www.ftadot.gov/ 

Health Resources and Services Administration 

U.S. Department of Health and Human Services

http://www.hrsa.gov 

Indian Health Service 

U.S. Department of Health and Human Services

http://www.ihs.gov 

Interagency Committee on Disability Research (ICDR) 

http://icdr.us/ 

National Center on Medical Rehabilitation Research 

National Institute of Child Health and Human 

Development 

National Institutes of Health 

U.S. Department of Health and Human Services

http://www.nichd.nih.gov 

National Council on Disability 

http://www.ncd.gov 

National Institute on Deafness and Other 

Communication Disorders 

National Institutes of Health 

U.S. Department of Health and Human Services

http://www.nih.gov/nidcd 

National Institute on Disability and Rehabilitation 

Research 

U.S. Department of Education

http://www.ed.gov 

Office for Civil Rights 

U.S. Department of Health and Human Services

http://www.hhs.gov/ocr/ 

Office of Disability Employment Policy 

U.S. Department of Labor

http://www.dol.gov/odep 

Call to Action 41 
Office of Equal Opportunity and Diversity 

Management 

National Institutes of Health 

U.S. Department of Health and Human Services

http://nih.hhs.gov 

Office of Public Health Emergency Preparedness 

U.S. Department of Health and Human Services

http://www.hhs.gov/ophep/ 

Office of Special Education and Rehabilitative Services 

U.S. Department of Education

http://www.ed.gov 

Office of the President's Council on Physical Fitness 

and Sports 

U.S. Department of Health and Human Services

http://www.fitness.gov 

Office on Disability 

U.S. Department of Health and Human Services

http://www.hhs.gov/od/ 

Office on Women's Health 

U.S. Department of Health and Human Services

http://www.4woman.gov 

President’s Committee on Persons with Intellectual 

Disorders, Agency for Children and Families 

U.S. Department of Health and Human Services

http://www.acf.hhs.gov/programs/pcpid/ 

The President's Challenge Physical Activity and Fitness 

Awards Program 

http://www.presidentschallenge.org 

Social Security Administration 

http://www.ssa.gov 

Substance Abuse and Mental Health Services 

Administration 

U.S. Department of Health and Human Services

http://www.samhsa.hhs.gov 

Private Resources 

[This list is not all inclusive; inclusion neither represents 

nor otherwise suggests endorsement by the U.S. Department 

of Health and Human Services.] 

AARP (American Association of Retired Persons 

http://aarp.org 

ADAPT 

http://www.adapt.org 

Alliance Project (special education) 

http://www.alliance.org 

Alliance for Technology Access 

http://www.atacess.org 

American Academy of Pediatrics 

http://www.aap.org 

American Academy of Physical Medicine and 

Rehabilitation 

http://www.aaprm.org 

American Alliance for Health, Physical Education, 

Recreation, and Dance 

http://www.aahperd.org 

American Association for Geriatric Psychiatry 

http://www.aagpgpa.org 

American Association for Homecare 

http://aahomecare.org 

American Association of Mental Retardation 

http://www.aamr.org 

American Association of Occupational Therapy 

http://www.aota.org 

American Association of People with Disabilities 

http://www.aapd.com 

American Association on Health and Disability 

http://www.aahd.us 

American Council of the Blind 

http://www.acb.org 

American College of Sports Medicine 

http://www.acsm.org 

American Foundation for the Blind 

http://www.afb.org 

42 Call to Action 
American Health Care Association 

http://www.ahca.org 

American Indian Rehabilitation Research and training 

Center 

http://www.nau.edu/ihd/airrtc 

American Physical Therapy Association 

http://www.apta.org 

American Society on Aging 

http://www.asaging.org 

American Speech-Language-Hearing Association 

http://www.asha.org 

American Therapeutic Recreation Association 

http://www.atra-tr.org 

ANCOR 

http://www.ancor.org 

Arc of the United States 

http://www.thearc.org 

Asian Community Mental Health Services 

http://www.igc.apc.org/acmhs 

Association of Maternal and Child Health Programs 

http://www.amchp.org 

Association of University Centers on Disability 

http://www.aucd.org 

Breast Health Access for Women with Disabilities 

http://www.bhawd.org 

Center for Medicare Advocacy 

http://www.medicareadvocacy.org 

Center for Research on Women with Disabilities 

http://www.bcm.edu 

Center for Universal Design 

http://www.design.ncsu.edu/cud 

Child Welfare League of America 

http://www.cwla.org 

Christopher and Dana Reeve Paralysis Resource Center 

http://www.paralysis.org 

Council for Exceptional Children 

http://www.cec.sped.org 

Disabled American Veterans 

http://www.dav.org 

Diabetes Research and Wellness Foundation 

http://www.diabeteswellness.net 

Disability Service Providers of America 

http://www.dspofamerica.org 

Disabled Sports USA 

http://www.dsusa.org 

Disabled Women’s Alliance 

http://www.disabilityhistory.org 

Easter Seals 

http://www.easterseals.com 

Educational Resources Information Center on 

Disabilities and Gifted Education 

http://www.ericec.org 

Epilepsy Foundation 

http://www.epilepsyfoundation.org 

Exceptional Parent 

http://www.eparent.com 

Family Voices 

www.familyvoices.org 

Federation of Families for Children’s Mental Health 

http://www.ffcmh.org 

Georgetown University Center for Child and Human 

Development 

http://gucchd.georgetown.edu 

Goodwill Industries International 

http://www.goodwill.org 

Howard University Research and Training Center for 

Access to Rehabilitation and Economic Opportunity 

http://www.law.howard.edu/hurtc/hurtc.html 

Call to Action 43 
International Center for Bioethics, Culture and 

Disability 

http://www.bioethicsanddisability.org 

Kids Enjoy Exercise Now (K.E.E.N.) 

http://www.keenusa.org 

March of Dimes 

http://www.marchofdimes.com 

National Adult Day Services Association 

http://www.nadsa.org 

National Alliance for Accessible Golf 

http://www.accessgolf.org 

National Alliance for Hispanic Health Centers for 

Providers 

http://www.hispanichealth.org 

National Alliance for the Mentally Ill 

http://www.nami.org 

National Asian Pacific Center on Aging 

http://www.napca.org 

National Association of Alcohol, Drugs and Disability 

http://www.naadd.org 

National Association of Protection and Advocacy 

Systems 

http://www.napas.org 

National Association of State Alcohol and Drug Abuse 

Directors 

http://www.nasadad.org 

National Association of State Directors of Special 

Education 

http://www.nasdse.org 

National Association of State Medicaid Directors 

http://www.nasmd.org 

National Association of State Mental Health Program 

Directors 

http://www.nasmhpd.org 

National Association of State Units on Aging 

http://www.nasua.org 

National Catholic Partnership on Disability 

http://www.ncpd.org 

National Center for Disability Services 

http://www.business-disability.com 

National Center on Physical Activity and Disability 

http://www.ncpad.org 

National Clearinghouse on Managed Care and Longterm Support and Services for People with 

Developmental Disabilities and Their Families 

http://www.mcare.net 

National Council on the Aging 

http://www.ncoa.org 

National Information Center for Children and Youth 

with Disabilities 

http://www.nichcy.org 

National Industries for the Severely Handicapped 

http://www.nish.org 

National Limb Loss Information Center 

http://www.amputee-coalition.orgl 

National Mental Health Association 

http://www.nmha.org 

National Organization on Disability 

http://www.nod.org 

National Rehabilitation Association 

http://www.nationalrehab.org 

National Rehabilitation Information Center (NARIC) 

http://www.naric.com 

National Resource Center on AD/HD: A program of 

CHADD 

http://help4adhd.org 

National Spinal Cord Injury Association 

http://www.spinalcord.org 

Native American Training and Research Center 

http://www.ahsc.arizona.edu/nartc 

44 Call to Action 
Paralyzed Veterans of America 

http://www.pva.org 

Parent Advocacy Coalition for Educational Rights 

(PACER) 

http://www.pacer.org 

Programs and Services Center of Minority Research in 

Special Education (COMRISE) 

http://www.curry.ed.school.virginia.edu/go/comrise 

Rehabilitation Engineering and Assistive Technology 

Society of North America 

http://www.resna.org 

Special Olympics 

http://www.specialolympics.org 

Spina Bifida Association of America (SBAA) 

www.sbaa.org 

United Cerebral Palsy Association 

http://www.ucp.org 

United Spinal Association 

http://www.unitedspinal.org 

Veterans of Foreign War 

http://www.vfwdc.org 

Call to Action 45 
46 Call to Action