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Commentary: Defining Disability in Health Care Education

Long-Bellil, Linda M. PhD, JD; O'Connor, Darlene M. PhD; Robey, Kenneth L. PhD; Hahn, Joan Earle PhD; Minihan, Paula M. PhD, MPH; Graham, Catherine L. MEBME; Smeltzer, Suzanne C. RN, EdDon behalf of the Alliance for Disability in Health Care Education

doi: 10.1097/ACM.0b013e318226b359
Commentary

According to the 2008 American Community Survey, about 12% of the population of the United States is living with one or more disabling conditions. These conditions impact lives in a variety of ways, some with more or less direct impact on an individual's health and access to health care services. Although it has been 20 years since the passage of the Americans with Disabilities Act, people with disabilities still experience health disparities and a lack of access to the appropriate care. This commentary is part of a collection of articles that describe various aspects of incorporating content into the medical school curriculum to enhance the preparation of today's medical students to meet the needs of people with disabilities. The authors briefly describe the scope of the problem and define the population of people with disabilities that constitutes the focus of the work described in the other articles in this collection.

Dr. Long-Bellil is assistant professor, University of Massachusetts Medical School, Shrewsbury, Massachusetts.

Dr. O'Connor is associate professor, University of Massachusetts Medical School, Worcester, Massachusetts.

Dr. Robey is director, Matheny Institute for Research in Developmental Disabilities, Matheny Medical and Educational Center, Peapack, New Jersey, and assistant professor, Department of Psychiatry, UMDNJ–New Jersey Medical School, Newark, New Jersey.

Dr. Hahn is associate professor, Department of Nursing, University of New Hampshire, Durham, New Hampshire.

Dr. Minihan is assistant professor, Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston, Massachusetts.

Ms. Graham is rehabilitation engineer, Department of Family Medicine, University of South Carolina School of Medicine, Columbia, South Carolina.

Dr. Smeltzer is professor and director, Center for Nursing Research, College of Nursing, Villanova University, Villanova, Pennsylvania.

The Alliance for Disability in Health Care Education is a collaborative network of health care educators promoting the inclusion of disability-related content in health care curricula.

Correspondence should be addressed to Dr. Long-Bellil, Disability, Health and Employment Policy Unit/Center for Health Policy and Research, University of Massachusetts Medical School, 333 South Street, Shrewsbury, MA 01545; telephone: (508) 856-8417; e-mail: linda.long@umassmed.edu.

More than ever before, people with disabilities are surviving accidents, living longer with developmental disabilities, in recovery from psychiatric illnesses, and working and participating more actively in their communities. They are members of every health plan and patients of virtually every pediatrician, internist, geriatrician, and specialist. Yet, people with disabilities have poorer health outcomes than those without disabilities, and many medical students still graduate having spent little if any time on curricula related to disability issues and probably less time interacting with people with disabilities.1–3

By various counts, people with disabilities represent a substantial proportion of the U.S. population. The U.S. Census Bureau annually conducts the American Community Survey, which gathers information about disability from a representative sample of the population using a broad set of questions that enable individuals to identify themselves as having one or more disabling conditions.4 These conditions fall into the following overlapping categories:

  1. Difficulty with hearing,
  2. Difficulty with vision,
  3. Difficulty with cognition,
  4. Difficulty with ambulation,
  5. Difficulty with self-care, and/or
  6. Difficulty with independent living.

Based on the 2008 survey, approximately 36 million noninstitutionalized people (12.1% of the total population) have one or more of these disabling conditions.4 (This figure may actually underrepresent the total number of individuals with disabilities because children under five with visual and hearing difficulties only are included.)

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The Impact of Living With a Disability on an Individual's Health

These disabling conditions impact lives in a variety of ways, some with more or less direct impact on an individual's health and access to health care services. For instance, individuals with learning disabilities or difficulties remembering may need support from their practitioners to be sure that they understand the implications of various behaviors on their health (e.g., diet, smoking, exercise) and to enable them to follow through with recommended tests or treatments (e.g., medications).

For those with disabilities that affect the ability to perform self-care activities, such as bathing, dressing, transferring from a bed to a chair, using the toilet, or eating, the interaction between medical and long-term support services can be particularly critical in avoiding secondary health conditions, such as pressure sores and urinary tract infections, and reducing unnecessary hospitalizations or other institutional placements.5 Of the total population who self-identified as having a disability based on the categories above, about 20% had a disability that affected self-care, constituting about 2% of the total U.S. population.4

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The Americans With Disabilities Act

Although it has been 20 years since the passage of the Americans with Disabilities Act (ADA), many medical practices still provide limited access to people with disabilities. Technological advances, such as power-assisted exam tables and wheelchair-accessible scales, have been developed but have not been widely adopted in hospitals or physicians' offices.1,6,7 The ADA requires that entities serving the public remove architectural barriers when readily achievable and take other steps to ensure that individuals with disabilities are not denied the full and equal enjoyment of their goods, services, facilities, privileges, advantages, or accommodations.8,9 It also requires that public entities, such as state and local governments, ensure that individuals with disabilities are not excluded from the services, programs, or activities that they operate.9,10 In its 1999 Olmstead decision, the Supreme Court upheld the federal government's interpretation of this language to mean that the ADA requires public entities to ensure that people with disabilities are able to receive services in the most integrated setting appropriate to their needs.11 Consequently, people with disabilities are increasingly being served in community settings. This trend reinforces the need for all health practitioners to be well prepared to assist people with all types of disabilities.

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Defining Disability

Definitions of disability have changed over time, and, depending on the focus of a specific discussion, the definition of disability may be used more or less broadly. In the third chapter of the Handbook of Disability Studies, Barbara Altman12 provides an extensive analysis of the various legal, clinical, and scholarly definitions of disability used both within and outside the United States. Most of the early definitions focused on a medical model linking disability with illness or chronic conditions, but, increasingly, scholars, educators, and the disability community itself have focused on functional impairments. For those who are interested in an analysis of the relationship between impairments, functional limitations, and disability, the chapter by Altman provides a thoughtful explication of the concepts, models, and approaches to the measurement of disability.

For the purposes of this commentary, we will start our discussion with the legal definition of disability, established in the ADA: “(1) a physical or mental impairment that substantially limits one or more major life activities ..., (2) a record of such an impairment, or (3) being regarded as having such an impairment.”13 This is a broad definition that potentially includes conditions ranging from those that respond well to treatment (e.g., high blood pressure) to those that are severe, obvious, and affecting most major life activities (e.g., C1–C4 spinal cord injury). Various court decisions in the late 1990s and the first decade of the 21st century narrowed the scope of the ADA, but Congress's intent was clarified, and the broader approach to defining disability was restored by the Americans with Disabilities Act Amendments Act of 2008.14 Therefore, it is important for health practitioners in the United States to understand that legal responsibility for making reasonable modifications for people with disabilities falls within this relatively broad interpretation.

In the health care context, the definition of disability focuses on the extent to which a physical or mental impairment affects the overall functioning of an individual or the likelihood that he or she will develop secondary medical conditions. Educational content emphasizes the role of the health professional in helping a person with a disability to maintain his or her maximum health and functioning. In this context, chronic medical conditions on their own (e.g., high blood pressure, diabetes, asthma) are not discussed as disabilities, although they frequently contribute to disabling conditions.

In our two articles15,16 in this issue, we use the general definition of disability: “difficulty performing daily activities and fulfilling social roles because of physical, sensory, emotional, or cognitive impairment, often compounded by environmental barriers.”6 This definition focuses on the actual impact of disability on functioning but also acknowledges that such functioning can be compounded by, and thus also alleviated by, environmental conditions. The most obvious environmental barriers are structural (such as stairs or high exam tables), and they can be addressed through physical changes (such as ramps and new technology). More pernicious barriers are the stereotypes and stigma associated with disabilities that can lead individuals, including health professionals, to project their own fears and low expectations onto the person with the disability or to miss critical health issues because of their lack of knowledge.1–3,6 The role of health professionals in identifying and addressing environmental factors that contribute to disability is often as important as their role in addressing the various health and medical conditions that contribute to the individual's loss of function.

Although the needs of individuals with all types of disabilities could be more adequately addressed in medical school curricula and in health care generally, the two articles in this issue focus on the need for medical education to address the needs of a subset of individuals with disabilities who are particularly vulnerable to physical and communication barriers, along with social stigma, due to the nature of their functional limitations. One article15 considers the desired educational outcomes of disability-related training for generalists by exploring the contributions of the domains of knowledge, attitudes, and skills to the learning process. The other article16 describes the use of a particular educational method, the standardized patient curriculum, to achieve some of these educational outcomes. These articles are the product of a collaborative effort between faculty at medical, nursing, and dental schools who have begun to address disability issues in their curricula. These educators first met in April 2007 at Matheny Medical and Educational Center in Peapack, New Jersey. The group has subsequently formed the Alliance for Disability in Health Care Education, which meets regularly and is open to any university-affiliated health educator interested in building disability content into his or her curriculum.

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Acknowledgments:

The authors wish to acknowledge the thoughtful and insightful suggestions and comments provided by the members of the Alliance for Disability in Health Care Education on various drafts of this paper.

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Funding/Support:

Not applicable.

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Other disclosures:

None.

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Ethical approval:

Not applicable.

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References

1 U.S. Office of the Surgeon General. The Surgeon General's Call to Action to Improve the Health and Wellness of Persons With Disabilities. http://www.surgeongeneral.gov/library/disabilities. Accessed May 10, 2011.
2 Kirschner KL, RH Curry. Educating health care professionals to care for patients with disabilities. JAMA. 2009;302:1334–1335.
3 U.S. Office of the Surgeon General. Closing the Gap: A National Blueprint to Improve the Health of Persons With Mental Retardation. http://www.surgeongeneral.gov/topics/mentalretardation. Accessed May 10, 2011.
5 LaPlante M. Unmet need for personal assistance services: Estimating the shortfall in hours of help and adverse consequences. J Gerontol B Psychol Sci Soc Sci. 2004;59:S98–S108.
6 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.
7 National Council on Disability. The Current State of Health Care for People With Disabilities. Washington, DC: National Council on Disability; 2009. http://www.ncd.gov/publications/2009/Sept302009. Accessed May 10, 2011.
8 Americans with Disabilities Act, 42 USC §12182(a), 1990.
9 Rosenbaum S. Appendix D: The Americans with Disabilities Act in a health care context. In: Field MJ, Jette AM, eds: The Future of Disability in America. Washington, DC: National Academies Press; 2007:426–452.
10 Americans with Disabilities Act, 42 USC §12132, 1990.
11 Olmstead V. L.C. 527 US 581 (US Sup Ct, 1999).
12 Altman B. Disability definitions, models, schemes and applications. In: Albrecht GL, Seelman KD, Bury M, eds. Handbook of Disability Studies. Thousand Oaks, Calif: Sage Publications; 2001:97–122.
13 Americans with Disabilities Act, 42 USC §12102(1), 1990.
14 Americans with Disabilities Act Amendments Act, P.L. 110-325, 2008.
15 Minihan PM, Robey KL, Long-Bellil LM, et al. Desired educational outcomes of disability-related training for the generalist physician: Knowledge, attitudes, and skills. Acad Med. 2011;86:1171–1178.
16 Long-Bellil LM, Robey KL, Graham CL, et al. Teaching medical students about disability: The use of standardized patients. Acad Med. 2011;86:1163–1170.
© 2011 Association of American Medical Colleges