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

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%)

* 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.”)

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 injury-related 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 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 age-specific rates range from a low of 7.8 percent for those 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 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/African-American populations. (Table 2)

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

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

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

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

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 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 need for access to services and supports for persons with disabilities.

Table 3: Population by Age and Disability

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

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 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 anti-discrimination 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—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 support for persons with disabilities of employable age who do not have jobs is 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.

Last revised: January 10, 2008