Practicing Library Skills

By Lisa I. Iezzoni

ANALYSIS & COMMENTARY

Eliminating Health And Health Care Disparities Among The Growing Population Of People With Disabilities

ABSTRACT Fifty-four million people in the United States are now living with disabilities. That number will grow substantially in the next thirty years, as the “baby-boom” generation ages and many of today’s children and young adults mature and experience complications related to overweight and obesity. This reality poses a major challenge to the health care and policy communities. People with disabilities confront disadvantages from social and environmental determinants of health, including lower educational levels, lower incomes, and higher unemployment, than people without disabilities. Those with disabilities are also much more likely to report being in fair or poor health; to use tobacco; to forgo physical activity; and to be overweight or obese. People with disabilities also experience health care disparities, such as lower rates of screening and more difficulty accessing services, compared to people without disabilities. Eliminating these multifaceted disadvantages among people with disabilities should be a critical national priority.

P resident George H.W. Bush signed the Americans with Disabilities Act on July 26, 1990, declaring it an- other “Independence Day” and exhorting Americans to “let the

shameful wall of exclusion finally come tumbling down.”1(p140) More than two decades later, Census Bureau data about Americans with disabilities tell a discouraging story.2

In 2010 fifty-four million Americans had dis- abilities, representing about 19 percent of the civilian, noninstitutionalized population.2 Rates of disability rose with increasing age: 5 percent among children ages 5–17, 10 percent among adults ages 18–64, and 38 percent among those age 65 or older.Women had slightly higher rates of disability than men (12.4 percent versus 11.7 percent). Beyond basic demographics, other 2010 cen-

sus figures were troubling.2 Only 46 percent of

Americans ages 18–64 with any disability were employed, compared to 84 percent of non- disabled Americans in that age group. The pov- erty rate for people ages 25–64 with severe dis- abilities was 27 percent, compared to 12 percent for people with disabilities that were not severe and 9 percent for people without disabilities. Among Americans age twenty-five or older, 28 percent of those with disabilities had less than a high school education, compared to 12 percent of people without disabilities. Otherdata showed that disability prevalence was higher among blacks, American Indians, and Alaska Natives than in other racial or ethnic groups.3

In 1990 the Americans with Disabilities Act recognized people with disabilities as a popula- tion meriting federal civil rights protections.Yet in the two decades since its passage, people with disabilities remain disadvantaged, including in their health and health care.4,5

doi: 10.1377/hlthaff.2011.0613 HEALTH AFFAIRS 30, NO. 10 (2011): 1947–1954 ©2011 Project HOPE— The People-to-People Health Foundation, Inc.

Lisa I. Iezzoni (liezzoni@ partners.org) is the director of the Mongan Institute for Health Policy at Massachusetts General Hospital, in Boston, Massachusetts.

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Concerns include, first, the physical environ- ment: inaccessible housing,6,7 and communities that are only marginally “livable” for people with disabilities.8,9 Persistent, stigmatizing social at- titudes10,11 also affect the health and well-being of these Americans. Compounding the difficulties for those in need of health care are persistent barriers throughout the system caused by in- accessible equipment and facilities; the lack of training of health care professionals to under- stand and address the needs of people with dis- abilities; inadequate communication modalities, such as the failure to provide Braille or large- print materials for people with vision deficits or employ sign language interpreters for hear- ing-impaired people; and other factors. This article examines disparities in health and

health care services among people with disabil- ities. Because of space constraints, I focus on general medical and preventive care, despite the fact that there are also serious concerns re- lating to long-term and supportive care for this population. I begin by defining disability and underscoring the diversity of this population. Then I describe health and health caredisparities experiences by people with disabilities. At the outset, two critical observations deserve

emphasis. First, as the Institute of Medicine noted in The Future of Disability in America, the number of people living with disabilities in the United States will grow substantially in the next thirty years, primarily because of an aging pop- ulation that will develop disabilities.12 At the other end of the life span, rising numbers of children and youth are living with disabilities because of higher rates of survival among babies born with very low birthweight and other com- plex trends, such as growing rates of autism spectrum disorders and childhood asthma.12

Trends linked to obesity in children and young adults suggest thatdisability numbers might also increase during middle age.13 Thus, in a few dec- ades a sizable fraction of the US population will probably have one or more disabilities. Second, as explained below, the US health care

system is not currently structured to care effec- tively for people with disabilities. Here, the word structure reflects concepts articulated by Avedis Donabedian in his enduring three-part frame- work—the structure-process-outcome triad— for assessing health care quality.14 Donabedian’s conception of structure was expansive, encom- passing not only equipment and physical set- tings but also the characteristics and training of care providers, organizational policies, and how the “financing and delivery of health ser- vices are organized, both formally and infor- mally”14(p81)—all critical attributes in caring for people with disabilities.

Defining ‘Disability’ Human societies have long grappled with the question of how to define disability.15 Wherever ancient peoples congregated to share resources, some individuals could not contribute to com- munal wealth because physical sensory, mental health, or cognitive impairments prevented them from hunting, gathering, or fulfilling ex- pected social roles. People with functional limi- tations needed help from others simply to sur- vive. As pressures mounted on shared societal coffers, determining whether specific individ- uals deserved assistance became important. Because people can feign physical and mental deficits, detecting deception has driven determi- nations of disability for many centuries.16

Starting in the nineteenth century, new tools— beginning with the stethoscope, microscope, ophthalmoscope, spirometer, and radiograph— allowed physicians to determine with apparent objectivity whether patients’ functional limita- tions had legitimate biological or physiological roots.16 By the late 1800s the “medical model” of disability was entrenched, positing health con- ditions as the cause of, and cure as the solution for, functional deficits. This perspective pro- duced two expectations: First, guided by their physicians, patients must strive to overcome functional limitations through their own efforts; and second, medical solutions are best. If, how- ever, cure is impossible, then the medical model required patients to “cheerfully and unself- consciously” make their own “good adjustment” to loss and deficiencies.17

By the second half of the twentieth century, attitudes had changed. Catalyzed by the conflu- ent forces of the independent living movement, civil rights campaigns for racial minorities and women, and self-help consumerism, a disability rights movement emerged.1,18 In the 1970s a new paradigm asserted that “problems lie not within the persons with disabilities but in the environ- ment that fails to accommodate persons with disabilities and in the negative attitude of people without disabilities.”19(p26) Disability is “imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.”20(p22) This “social” model sees the issue as “an attitudinal or ideo- logical one requiring social change, which at the political level becomes a question of human rights.”21(p20)

The International Classification of Functioning, Disability, and Health of the World Health Organi- zation (WHO)melds themedical and social mod- els in defining disability, thus producing a coher- ent view of health.21 This classification explicitly recognizes the contribution of external forces— the physical, social, and attitudinal environ-

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ments—in causing or eliminating disability among people with functional impairments. In addition, the classification includes partici-

pation in daily and community life as explicit components of health, thus shifting the focus from prevention or cure to maximizing function- ing and well-being. By presenting disability as a continuum, the WHO treats disability as relevant “to the lives of all people to different degrees and at different times in their lives.”22(p82) The Insti- tute of Medicine recommended adopting the WHO’s conceptual framework in all US efforts to monitor and measure population disability, albeit acknowledging that further work must re- fine and strengthen the nomenclature, and that no single definition of disability can serve all societal needs.12

People With Disabilities: A Diverse Population More than twenty years ago, the diversity among the multiple constituencies of the disability civil rights movement impeded that movement’s coa- lescence.1 People who were blind did not neces- sarily identify with people paralyzed by spinal cord injury, children with developmental disabil- ities, or elderly people with dementia—and vice versa. Even the deaf community was divided be- tween people who were born hearing and be- came deaf in late or middle age, often never learning sign language (people also called “hard of hearing”) and the culturally Deaf—people who spoke sign language because they were born deaf or deafened early in childhood, before learning spoken language.Ultimately, advocates for these diverse groups found much common ground, but doing so was challenging. Even today, certain accommodations for peo-

ple with one type of impairment can disadvant- age those with another type. For example, gently sloped curb cuts with smooth pavement are best for the users of mobility aids such as wheel-

chairs, but they do not adequately warn blind pedestrians walking with white canes that they are about to enter active roadways. Raised “trun- cated domes” provide textured, detectable warn- ing surfaces for those blind pedestrians but are difficult for some users of canes, walkers, and wheelchairs to navigate. According to 2001–05 National Health Inter-

view Survey data, 21.7 percent of civilian, non- institutionalized US adults reported movement difficulties (problems with walking, standing, kneeling or bending, reaching overhead, or using hands or fingers); 13.1 percent reported difficulties seeing or hearing; 3.1 percent re- ported emotional difficulties (extended periods of feeling very sad, nervous, restless, hopeless, or worthless or feeling that “everything was an effort”); and 2.8 percent reported cognitive dif- ficulties (problems remembering or confu- sion).23(p76) Many people report more than one type of difficulty. Depending on their conditions, Americans

with disabilities have diverse health care needs that require different interventions and accom- modations. Certain fixed or constant conditions, such as congenital blindness or deafness, do not typically require explicit medical interventions, although they shape communication accommo- dation needs. Other sensory and physical disabilities arise

from medical conditions that progress or change over time, sometimes influenced by clinical in- terventions and patients’ own behavior. Some people actively and continually manage their own bodily needs; in such cases, patients often know more than their clinicians about how best to handle basic clinical concerns. Patients’ life- styles—for example, tobacco use, exercise, and diet—can also affect the progression of im- pairments. Regardless of their specific conditions, how-

ever, people with disabilities are particularly sus- ceptible to receiving substandard health care. Those with complex medical needs often slip through the fault lines crisscrossing health care delivery systems, especially poorly integrated specialized services.24

Disparities In Health People with disabilities are much more likely than the nondisabled to report being in fair or poor health. According to 2001–05 National Health Interview Survey data, only 3.4 percent of adults without disabilities reported fair or poor health, compared with 30.6 percent of those with difficulty seeing or hearing, 37.9 per- cent of those reporting movement difficulties, 51.8 percent of people with emotional difficul-

People with disabilities are particularly susceptible to receiving substandard health care.

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ties, and 63.8 percent of those with cognitive difficulties.23

Among people reporting movement difficul- ties, 77.2 percent of those experiencing the most severe type of movement difficulty reported fair or poor health, compared with 14.8 percent of those experiencing the least severe movement difficulty. According to data from an earlier Na- tional Health Interview Survey, 34 percent of people with major difficulties walking reported being frequently depressed or anxious, com- pared with 3 percent of those without dis- abilities.9

Data from the Centers for Disease Control and Prevention’s 2004–06 Behavioral Risk Factor Surveillance System surveys showed disparities in reports of fair or poor health by racial and ethnic subgroups of people with and without disabilities.3 For example, Asians with disabil- ities were 16.8 percentage points more likely to report fair or poor health than were non- disabled Asians. In contrast, among people iden- tifying themselves as American Indians or Native Americans, those with disabilities were 37.9 per- centage points more likely to report fair or poor health than were those without disabilities. Among adults with a disability, reports of fair or poor health were highest among Hispanics (55.2 percent) and American Indians and Alaska Natives (50.5 percent) and lowest among Asians (24.9 percent). The 2001–05 National Health Interview Survey

data also indicated that people with disabilities had higher rates of risk factors for worsening overall health and developing conditions such as heart disease and certain cancers.23 For in- stance, disabled people ages 18–44 were more likely than their nondisabled peers to be obese (28.4 percent versus 17.8 percent), to smoke cigarettes (37.5 percent versus 22.4 percent), and to be physically inactive during leisure time (47.7 percent versus 32.8 percent). Similarly, people with disabilities ages 45–64

were more likely than their nondisabled counter- parts to be obese (36.2 percent versus 21.5 per- cent), to smoke cigarettes (27.8 percent versus 19.5 percent), and to be physically inactive (79.2 percent versus 65.9 percent). These data do not adjust for the social and

environmental factors—such as poverty and other socioeconomic disadvantages—that could contribute to differences in rates between dis- abled and nondisabled people. Nonetheless, fac- tors specific to certain disabilities might account for some of the differences. For instance, after publishing a paper showing

higher overweight and obesity rates among peo- ple with disabilities,25 my coauthors and I re- ceived communications from readers with dis-

abilities. A deaf woman described being afraid to jog in her neighborhood because she could not hear traffic sounds or the steps of other people, including possible assailants, running after her. People with mobility difficulties reported that gyms and health clubs did not have accessible equipment. One troubling possibility is that physicians are

less likely to address risky health behavior if a patient has a disability. Using National Health Interview Survey data, my colleagues and I found that smokers who had major difficulties walking were 20 percent less likely than other smokers to be asked about their smoking histories by their physicians during annual checkups.26 Anecdotal reports suggest that some physicians choose not to discuss smoking with disabled patients under the distorted belief that smoking brings conso- lation to otherwise unhappy lives. However, some people with walking difficulties have lim- ited lung capacity, which increases their risks of respiratory infections. Therefore, ceasing smok- ing is critical in this population.

Disparities In Health Care In 2000 the federal government’s Healthy People 2010 report cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the gen- eral population.”27(p6-3) The report cited common misconceptions about people with disabilities that contribute to disparities in the services they receive, especially an “underemphasis on health promotion and disease prevention activ- ities.”27(p6-3) Other federal reports, including the Agency for Healthcare Research and Quality’s annual National Healthcare Disparities Report, have documented these disparities, focusing pri- marily on screening and preventive services.28–30

Repeated studies using national and state sur- vey data have shown findings such as those in Exhibit 1, demonstrating much lower rates of screening mammography and Pap tests among

Physicians may be less likely to address risky health behavior if a patient has a disability.

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women with disabilities than among those with- out.23 Also using national survey data, the 2010 Agency for Healthcare Research and Quality dis- parities report highlighted other access and quality problems disproportionately affecting people with disabilities (Exhibit 2).30

Beyond survey data, little information is avail- able to explore disparities among people with disabilities. Medicare and Medicaid claims files, used frequently to investigate disparities in ser- vice use for racial and ethnic minorities, do not contain indicators of current disability. To inves- tigate patients’ experiences with breast and non- small-cell lung cancer, we used data from the National Cancer Institute’s Surveillance, Epi- demiology, and End Results cancer registries, merged with Medicare claims for people under age sixty-five who qualified for Medicare because of disability entitlement—that is, they had re- ceived Social Security Disability Insurance for two years. We found disparities in treatment and outcomes for both cancers. For early-stage breast cancer, women with dis-

abilities were much less likely than other women to get breast-conserving surgery (adjusted rela- tive risk: 0.80; 95% confidence interval: 0.76, 0.84) rather than mastectomy.31 When women receive this surgery, they require radiation therapy to have the same disease-free survival as with mastectomy. However, women with dis- abilities who had breast-conserving surgery were much less likely than other women to receive radiotherapy (adjusted relative risk: 0.85; 95% confidence interval: 0.77, 0.90). Women with disabilities were much more likely to die from

breast cancer than were other women (adjusted hazards ratio: 1.31; 95% confidence interval: 1.18, 1.45).31

Similarly, for early-stage non-small-cell lung cancer, my colleagues and I found that people with disabilities were significantly less likely than nondisabled people to receive surgery, cur- rently the only definitive treatment for this cancer.32 People with disabilities were also sig- nificantly more likely than those without disabil- ities to die from their lung cancer. After account- ing for demographic and tumor characteristics, controlling for disparities in the use of surgery eliminated the survival discrepancy between dis- abled and nondisabled patients.

Exhibit 1

Rates Of Mammography And Pap Testing Among Women With And Without Different Disabling Conditions

Type of difficulty Mammography in past 2 years (%)a

Pap test in past 3 years (%)b

None 74.4 82.5 Movement difficulty (any) 66.4 69.3

Level 1 (least severe) 75.4 79.0 Level 2 69.8 71.6 Level 3 66.3 67.9 Level 4 59.1 60.3 Level 5 (most severe) 54.9 54.2

Seeing or hearing difficulty 62.8 68.8 Emotional difficulty 58.4 72.4 Cognitive difficulty 52.1 58.3

SOURCE Adapted from National Center for Health Statistics data; Note 23 in text. aWomen age fifty and older. bWomen age eighteen and older.

Exhibit 2

Quality Measures For Which People With Disabilities Report Worse Experiences Than People Without Disabilities

Topic Description of quality measure

Access People without a usual source of care who indicated a financial or insurance reason for not having a source of care People who were unable to get or delayed getting needed medical care in the past 12 months: Dental care Prescription medicines

People with a usual source of care, excluding hospital emergency departments, that had office hours nights or weekends People with difficulty contacting their usual source of care over the telephone Adults who did not have problems seeing a specialist they needed to see in the past 12 months

Lifestyle modification Adults with obesity who spent half an hour or more in moderate or vigorous physical activity at least three times a week

Patient safety Adults age 65 or older who received potentially inappropriate prescription medications in the calendar year

Patient-centeredness Adults who had a doctor’s office or clinic visit in the past 12 months whose: Providers listened carefully to them Providers explained things in a way they could understand Providers showed respect for what they had to say Providers spent enough time with them

Rating of health care by adults who had a doctor’s office or clinic visit in the past 12 months People with a usual source of care for whom health care providers explained and provided all treatment options

SOURCE Adapted from Agency for Healthcare Research and Quality. 2010 national healthcare disparities report; Note 30 in text. Table 10.8: Measures for which persons with complex activity limitations were worse than persons with neither basic nor complex activity limitations.

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Many factors likely explain these disparities in care, probably including patients’ preferences for different types of treatments and competing needs resulting from multiple, complex health conditions. Erroneous assumptions and stigma- tizing attitudes among clinicians also probably play a role. In a survey of Los Angeles County residents with sensory or physical disabilities, 13 percent reported being treated unfairly at their health care provider’s office because of their disability. And 18 percent of those who said that their disabilities were severe reported unfair treatment.33

Using National Health Interview Survey data, my colleagues and I found that women of child- bearing age with major difficulties walking were 70 percent less likely than other women to be asked about contraception during routine physi- cian office visits.26 If these women were sexually active, they confronted risks of unintended preg- nancy; these women could also have faced heightened risks of complications (such as deep vein thrombosis) from hormonal contraceptives or have trouble with manual dexterity, making barrier contraceptives less feasible. One possible explanation for the finding is that clinicians er- roneously assume that women with mobility dif- ficulties are not sexually active.9

Inaccessible health care equipment and facili- ties probably contribute to some disparities in care. The survey of Los Angeles County residents with physical or sensory disabilities found that 22 percent of them had difficulty accessing their health care provider’s office, with non-Hispanic black respondents and people with severe dis- abilities reporting the highest rates of physical barriers (33 percent and 31 percent, respec- tively).34 Even if facilities have adaptive and as- sistive equipment—such as lifts and transfer equipment—this is not necessarily used appro- priately.33

Interviews with women with disabilities who had developed early-stage breast cancer found that they frequently confronted physical barriers to care, such as inaccessible examining tables, weight scales, infusion chairs, mammography machines, and radiology equipment.35,36 For ex- ample, a woman who is paraplegic reported that the cancer clinic at a major academic medical center she was referred to did not have a weight scale that was accessible by wheelchair. A wom- an’s weight determines certain chemotherapy dosages. To determine her weight, the woman reported that her oncologist lifted her from her wheelchair and stepped onto a scale, holding her in his arms. In another example, radiotherapy staff used

Velcro straps to keep a woman with cerebral palsy securely on the table, but positioning her

arm, which moves uncontrollably, was problem- atic. “There are all kinds of positioning devices that they could’ve used,” the patient said. “Vel- cro, Velcro strapping. But they ended up using masking tape every single time”—taping her arm to the table.35(p715)

Looking Toward The Future Entrenched socioeconomic disadvantages and structural barriers within the health care system are now widely recognized as determinants of health and health care disparities among people with disabilities. In November 2010 the federal government released the current iteration of its decennial initiative, Healthy People 2020. Among its objectives for people with disabilities, Healthy People 2020 includes reducing un- employment, increasing the accessibility of new and retrofitted housing, reducing barriers to participating in community activities, and de- creasing barriers in health care facilities.37

The barriers within the health care system overall have persisted for more than two decades after the enactment of the Americans with Dis- abilities Act. Decreasing them may thus require explicit and targeted interventions. People with disabilities have occasionally used lawsuits to address problems in accessing care. On July 26, 2000, ten years to the day after the Americans with Disabilities Act became law, several people with disabilities sued the Kaiser Permanente Health System in California for disability dis- crimination.38 Kaiser Permanente settled the lawsuit in April 2001, and since then it has en- deavored “to improve access and remove archi- tectural, attitudinal, and other barriers for peo- ple with disabilities, to educate and train providers concerning culturally competent care…, and to develop patient-centered best practices and models of care for people with dis- abilities.”38(p240)

The act’s regulations did not cover medical equipment, posing challenges to organizations such as Kaiser Permanente, which want to im-

Inaccessible health care equipment and facilities probably contribute to some disparities in care.

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prove physical access to their services. The Af- fordable Care Act of 2010 includes section 510, “Establishment of Standards for Accessible Medical Diagnostic Equipment.” This section mandates that the US Architectural and Trans- portation Barriers Compliance Board, in consul- tation with the Food and Drug Administration, promulgate within twenty-four months after en- actment minimum technical criteria for ensur- ing the accessibility of medical equipment. Such equipment includes examining tables and chairs, weight scales, mammography equip- ment, and other radiological testing equipment used in hospitals, physician offices, clinics, and other health care settings. The next steps will be for manufacturers to follow these standards and for health care providers to install accessible equipment. Other Affordable Care Act provisions also ad-

dress disability concerns. For example, sec- tion 2705 prevents group health plans or health insurers from discriminating against people with disabilities. Section 4302 requires collec- tion of data relating to health care disparities

among those people, as well as data on racial and ethnic minorities and other population sub- groups. Section 5307 supports the development of curricula to train health care professionals about providing culturally competent care to pa- tients with disabilities.

Conclusion As the Institute of Medicine has stated, “disabil- ity is not a minority issue.”24(p16) Considering peo- ple who now have disabilities, those who will develop disabilities in the future, and those who are or will be affected by disabilities of fam- ily members or friends, “disability affects today or will affect tomorrow the lives of most Amer- icans.”24(p16)

Furthermore, the numbers of people living with disabilities across the life span—from the youngest to the oldest Americans—are grow- ing.24 Thus, eliminating health and health care disparities among this population should be a critical national priority. ▪

NOTES

1 Shapiro JP. No pity: people with disabilities forging a new civil rights movement. New York (NY): Times Books; 1994. p. 140.

2 Census Bureau. Facts for features: 20th anniversary of Americans with Disabilities Act: July 26 [Internet]. Washington (DC): Census Bureau; 2010 May 26 [cited 2011 Aug 26]. Available from: http://www.census .gov/newsroom/releases/archives/ facts_for_features_special_ editions/cb10-ff13.html

3 Wolf LA, Armour BS, Campbell VA. Racial/ethnic disparities in self- rated health status among adults with and without disabilities— United States, 2004–2006. MMWR Morb Mortal Wkly Rep. 2008; 57(39):1069–73.

4 Turk MA. Has the ADA improved the health of people with disabilities? Disabil Health J. 2010;3(4):225–6.

5 Mudrick NR, Schwartz MA. Health care under the ADA: a vision or a mirage? Disabil Health J. 2010;3: 233–9.

6 National Council on Disability. The state of housing in America in the 21st century: a disability perspective. Washington (DC): The Council; 2010.

7 Nelson KP. The hidden housing cri- sis: worst case housing needs among adults with disabilities. Washington (DC): Housing Task Force of the Consortium for Citizens with Dis- abilities; 2008.

8 National Council on Disability. Liv- able communities for adults with disabilities. Washington (DC): The

Council; 2004. 9 National Council on Disability. Is-

sues in creating livable communities for people with disabilities: pro- ceedings of the panel. Washington (DC): The Council; 2007.

10 Yee S, Breslin ML. Achieving acces- sible health care for people with disabilities: why the ADA is only part of the solution. Disabil Health J. 2010;3(4):253–61.

11 Iezzoni LI, O’Day BL. More than ramps: a guide to improving health care quality and access for people with disabilities. New York (NY): Oxford University Press; 2006.

12 Institute of Medicine. The future of disability in America. Washington (DC): National Academies Press; 2007.

13 Alley DE, Chang VW. The changing relationship of obesity and disabil- ity, 1988–2004. JAMA. 2007; 298(17):2020–7.

14 Donabedian A. Explorations in quality assessment and monitoring, vol. 1: the definition of quality and approaches to its assessment. Ann Arbor (MI): Health Administration Press; 1980.

15 Iezzoni LI, Freedman VA. Turning the disability tide: the importance of definitions. JAMA. 2008;299(3): 332–4.

16 Stone DA. The disabled state. Phila- delphia (PA): Temple University Press; 1984.

17 Goffman E. Stigma: notes on the management of spoiled identity. New York (NY): Simon and Schus- ter; 1963.

18 Fleischer DZ, Zames F. The disability rights movement: from charity to confrontation. Philadelphia (PA): Temple University Press; 2001.

19 Olkin R. What psychotherapists should know about disability. New York (NY): Guilford Press; 1999.

20 Oliver M. Understanding disability: from theory to practice. New York (NY): St. Martin’s Press; 1996.

21 World Health Organization. International classification of func- tioning, disability, and health. Geneva: WHO; 2001.

22 Üstün TB, Chatterji S, Kostansjek N, Bickenbach J. WHO’s ICF and func- tional status information in health records. Health Care Financ Rev. 2003;24(3):77–88.

23 Altman B, Bernstein A. Disability and health in the United States, 2001–2005. Hyattsville (MD): Na- tional Center for Health Statis- tics; 2008.

24 Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington (DC): National Academies Press; 2001.

25 Weil E, Wachterman M, McCarthy EP, Davis RB, O’Day B, Iezzoni LI, et al. Obesity among adults with disabling conditions. JAMA. 2002;288(10):1265–8.

26 Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90(6):955–61.

27 Department of Health and Human Services. Healthy people 2010. 2nd

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ed. Washington (DC): Government Printing Office; 2000.

28 Department of Health and Human Services. The surgeon general’s call to action to improve the health and wellness of persons with disabilities. Washington (DC): Public Health Service, Office of the Surgeon Gen- eral; 2005.

29 National Council on Disability. The current state of health care for peo- ple with disabilities. Washington (DC): The Council; 2009.

30 Agency for Healthcare Research and Quality. 2010 national healthcare disparities report. Rockville (MD): AHRQ; 2011 Mar. (Publication No. 10-0005).

31 McCarthy EP, Ngo LH, Roetzheim RG, Chirikos TN, Li D, Drews RE, et al. Disparities in breast cancer treatment and survival for women

with disabilities. Ann Intern Med. 2006;145(9):637–45.

32 Iezzoni LI, Ngo LH, Li D, Roetzheim RG, Drews RE, McCarthy EP. Treat- ment disparities for disabled Medi- care beneficiaries with stage I non- small cell lung cancer. Arch Phys Med Rehabil. 2008;89(4):595–601.

33 Story MF, Kaile JI, MacDonald C. The ADA in action at health care facilities. Disabil Health J. 2010; 3:245–52.

34 Centers for Disease Control and Prevention. Environmental barriers to health care among persons with disabilities, Los Angeles County, California, 2002–2003. MMWR Morb Mortal Wkly Rep. 2006; 55(48):1300–3.

35 Iezzoni LI, Kilbridge K, Park ER. Physical access barriers to care for diagnosis and treatment of breast

cancer among women with mobility impairments. Oncol Nurs Forum. 2010;37(6):711–7.

36 Iezzoni LI, Park ER, Kilbridge K. Implications of mobility impairment on the diagnosis and treatment of breast cancer. J Womens Health (Larchmt). 2011;20(1):45–52.

37 Department of Health and Human Services. Healthy people 2020 [In- ternet]. Washington (DC): HHS; 2020 [cited 2011 Aug 26]. Available from: http://www.healthypeople .gov/2020/

38 Sandel ME, Appelman J, Kotch MJ, Biter-Mundt G, Lal N, Samuels S, et al. The California Kaiser Perma- nente Health System: evolving to meet the needs of people with dis- abilities. Disabil Health J. 2010; 3(4):240–4.

ABOUT THE AUTHOR: LISA I. IEZZONI

Lisa I. Iezzoni is a professor of medicine at Harvard Medical School.

In this month’s Health Affairs, Lisa Iezzoni, a professor of medicine at Harvard Medical School and director of the Mongan Institute for Health Policy at the Massachusetts General Hospital, brings her traditional and rigorous scientist’s eye to an issue close to home: the health and health care disparities manifest in the nation’s population of disabled people.

“As I would ride around in my wheelchair (which I have used since 1988 because of multiple sclerosis),” she says, “strangers would come up to me and ask questions about wheelchair use or tell me stories about their disabled relatives or friends. I called this my ‘rolling focus group,’ and I wondered why people were not asking their physicians some of the questions they asked me. When I went to look at the published medical literature, I found remarkably little written about health care experiences of persons with disabilities. So I decided to explore these issues in my own research.” The result was this article, which

describes health disparities tied to

social and economic determinants among disabled people, as well as care disparities such as lower rates of screening. With the growing population of disabled people, Iezzoni says, eliminating these should be a critical national priority. In addition to her academic and

medical affiliations, Iezzoni is a member of the Institute of Medicine and serves on the editorial boards of Health Services Research and the Disability and Health Journal. She received the Distinguished Investigator Award from AcademyHealth in 2010. Iezzoni received her medical

degree from Harvard Medical School.

People With Disabilities

1954 Health Affairs October 2011 30:10

by Rachel McCartney on October 20, 2011Health Affairs by content.healthaffairs.orgDownloaded from

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