The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities
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.
A Personal Story-Ignorance
When my son, who has cerebral palsy (CP), 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 her to plan another play date for the boys, she told me that she didn't think we could do that because she didn’t want her son to “catch” my son’s CP. I hung up and cried.
The reality is that with accommodations and supports, ample access to health care, engagement in wellness activities and the impetus that comes from supportive 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.
A Personal Story-Disability Isn't Inability
Children from across the United States and Europe compete in the National Junior Disabled Sports Championships. Many travel long distances with coaches, teams and parents. Just like other Olympians-in-training, many train year round as athletes. They set personal bests, captured medals and set new benchmark records, just as other amateur and professional athletes have done.
But the reporters often don't “get it.” The Headlines: “Disabled boy sets records…suffers from spina bifida.... An athlete who suffers from cerebral palsy.... Another who suffers from a severed spinal cord.... Children afflicted with a disability....”
When one boy saw the newspaper headline about his achievements-Disabled boy sets records-he was devastated. He called his father at work: “Guess what they called me? They called me 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.
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.
A Personal Story-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 term is not used today in medical treatment or education. As a middle-aged woman in recovery from schizophrenia, I found the questionnaire language insensitive and stigmatizing. Was this a potential indication about the sensitivity of the practitioner, too? I hoped not and told him so.
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 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 provider-patient 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.
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.
A Personal Story-Doing It Right
Jim was diagnosed with cystic fibrosis at 3 months of age. One of the first questions the diagnosing doctor asked his mother was “Where do you want your son to be in 20 years?” Forced to think about a future for a child just diagnosed with a 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 his own health care-and not just for the management of his cystic fibrosis.
By 2-½ 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.”
Throughout his childhood, with the support of his family, school and health care providers, Jim was able to take on increasing levels of responsibility 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 promote 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 been 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 future, not just a disability, from the day he was diagnosed.
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 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 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.
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, self-help, and mutual support groups, friends, my relationship with God, work, exercise, spending time in nature-all these measures help me remain whole and healthy-even though I have a disability.
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 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 persons with disabilities to help prevent the occurrence of secondary conditions.
A Personal Story-Exercise at Any Age
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 age of 80, I can once again maintain an erect posture and stretch my arms over my head-great for putting dishes in cupboards.
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
Source: Behavioral Risk Factor Surveillance System, CDC, 2004
Table 5: Percentage of Counseling/Inquiries Made at Last Health Maintenance Examination for Persons with Disabilities
Inquiry made (%)
Changes in functional status
Sexuality (ever discussed)
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.
A Personal Story-Exercise Opens Doors
With a combination of autoimmune disorders, my body fights itself daily. Juvenile rheumatoid arthritis, fibromyalgia and scleroderma leave me exhausted and in ongoing pain. Combined with increasing degeneration and deformity of my joints, 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. Both added to the burden of disability I experienced. 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 much I eat against my body's ability to use it. I exercise portion control, which helps me keep meal 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 exercise, but I can do aqua exercise, and I skipper a modified 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 or 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.
A Personal Story-Battlefield to Playing Field
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.” He tells newly 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 person that they used to be” in both body and mind.
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 concepts as: “getting there”; “getting in”; clarifying needs; the doctor’s clock; and overcoming attitudes.
Table 6: Access to Care for Persons with Disabilities: Challenges and Consequences
Challenges when attempting to access health care
Inaccessible, untimely and inconvenient, particularly in rural areas.
Inaccessibility of facilities or services
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.
Lack of provider knowledge about disability
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
Declining condition, energy and mobility; inability to engage in community life, work and activities of daily living; increased secondary medical conditions.
Compromised emotional well-being, reduced self-esteem, depression and stress.
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
Relationships and social roles strained, restricted or limited participation in family and social activities.
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
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 contact with her family and friends; the distance was too great for visits. She was unable to engage in either tribal ritual or cultural activities. She felt as if she had lost connection to who she was; Carol missed her family and her home community. As a result, she became depressed, withdrawn, and found herself unable to participate fully in her school.
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).
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.
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 take the doctor more time with me. They really 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.
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 disability 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.
Last revised: January 10, 2007