Shifting the Conversation: Disability, Disparities and Health Care Reform

FIU Law Review Volume 6 | Number 1 Article 8 Fall 2010 Shifting the Conversation: Disability, Disparities and Health Care Reform Elizabeth Pendo Saint Louis University School of Law Follow this and additional works at: https://ecollections.law.fiu.edu/lawreview Part of the Other Law Commons Online ISSN: 2643-7759 Recommended Citation Elizabeth Pendo, Shifting the Conversation: Disability, Disparities and Health Care Reform, 6 FIU L. Rev. 87 (2010). Available at: https://ecollections.law.fiu.edu/lawreview/vol6/iss1/8 This Article is brought to you for free and open access by eCollections @ FIU Law Library. It has been accepted for inclusion in FIU Law Review by an authorized editor of eCollections @ FIU Law Library. For more information, please contact . Shifting the Conversation: Disability, Disparities and Health Care Reform Elizabeth Pendo* In keeping with the theme of this symposium, I would like to invite you to consider health care reform as a political shift in our thinking about the barriers and inequalities experienced by people with disabilities in our health care system. Traditionally, when these issues have been addressed, the predominant approach has been through a civil rights framework, specifically the Rehabilitation Act of 19731 and the American with Disabilities Act of 1990 (ADA).2 Now, the Patient Protection and Affordable Care Act of 2010 (PPACA) 3 offers a new approach. This essay will outline the barriers to health and health care experienced by people with disabilities, drawing upon my ongoing research into the impact of inaccessible medical equipment.4 I will then examine the role of civil rights law and of health care reform in addressing those disparities, and recommend the development of these as complementary, rather than competing, approaches. I. THE IMPORTANCE OF DEFINING “DISABILITY” When I teach my class on disability law, I like to start the semester with a discussion of the definition of disability. It is always an interesting way to begin because we all think we know to whom * © 2011 Elizabeth Pendo, Associate Dean for Academic Affairs and Professor of Law, Saint Louis University School of Law. Thank you to FIU College of Law and the FIU Law Review for the invitation to contribute to this Symposium. 1 Rehabilitation Act of 1973, Pub. L. No. 93-112, 87 Stat. 355 (codified as amended at 29 U.S.C. § 701 (2006)). 2 42 U.S.C. §§ 12101—12213; ADA Amendments Act of 2008, Pub. L. No. 110-325, 122 Stat. 3553 (codified as amended in scattered sections of 42 and 29 U.S.C.). 3 Patient Protection and Affordable Care Act, Pub. L. No. 111-148, 124 Stat. 119 (2010) [hereinafter PPACA]. PPACA was amended by the Health Care and Education Affordability Reconciliation Act of 2010, Pub. L. No. 111-152, 124 Stat. 1029 (2010). 4 See generally Elizabeth Pendo, Disability, Equipment Barriers and Women’s Health: Using the ADA to Provide Meaningful Access, 2 ST. LOUIS U. J. HEALTH L. & POL’Y 15 (2008) [hereinafter Equipment Barriers]; Elizabeth Pendo, Reducing Disparities through Health Care Reform: Disability and Accessible Medical Equipment, 4 UTAH L. REV. 1057 (2010) (forthcoming) [hereinafter Reducing Disparities]. 87 88 FIU Law Review [6:87 “people with disabilities” refers. But we quickly discover that we have widely divergent definitions from each other, and even within our own thinking once we consider the definition in different contexts. Definitions do matter, as estimates of disability prevalence can vary 5 widely based upon the questions asked. So I think it is helpful to clarify who we might be talking about. “People with disabilities” can encompass a large, incredibly diverse group. For example, my recent research focuses on people with mobility disabilities, but there are many other types of disabilities that impact health and access to health care. Disabilities can be physical, mental, sensory, developmental, intellectual, or any combination of these.6 They also can be visible or hidden, congenital or acquired, or stable, progressive or episodic. There is also variation in the degree to which a given disability may be stigmatized, and in what context. How many people might we find in this large and diverse group? According to the U.S Census, one in five people in the United States — or 54.4 million of us — reported some level of disability in 2005.7 Of those, 35 million, or 12 percent of the population, were classified as having a severe disability. Both the number and percentage of people who reported impairments or disabilities were higher than the last time the census information was taken in 2002. The U.S. Census definition is broad, and includes anyone who reported using a wheelchair, crutches, cane, or any sort of mobility aid; had difficulty performing one or more basic functions of daily living such as caring for self or working; had a specific mental or emotional condition that seriously interfered with everyday activity; if working age, had a condition that made it difficult to work; or re5 Barbara M. Altman and Stephen P. Gulley, Convergence and Divergence: Differences in Disability Prevalence Estimates in the Unites States and Canada Based on Four Health Survey Instruments, 69 SOC. SCIENCE & MED. 543 (2009) (finding that in surveys of the U.S. noninstitutionalized adult population, disability prevalence ranged from 15.3 percent to 36.4 percent depending on the survey questions asked). You can also find multiple definitions of disability in various federal programs. See, e.g., Cherry Engineering Support Services, Inc., Federal Statutory Definitions of Disability, Prepared for The Interagency Committee on Disability Research, McLean, Virginia (July 1, 2003) (on file with author) (collection of federal statutory definitions of disability). 6 According to a poll by the Kaiser Family Foundation, just over 61 percent of those surveyed reported physical disabilities, about 15 percent reported mental disabilities, and 24 percent reported both physical and mental disabilities. Kristina Hanson et al., The Henry J. Kaiser Family Foundation, Understanding the Health-Care Needs and Experiences of People with Disabilities: Findings from a 2003 Survey, 4 (2003), http://www.kff.org/medicare/ upload/Understanding-the-Health-Care-Needs-and-Experiences-of-People-with-DisabilitiesFindings-from-a-2003-Survey.pdf. 7 Matthew W. Brault, U.S. Census Bureau, Current Population Reports, Americans with Disabilities: 2005 Household Economic Studies 4 (2008), http://www.census.gov/prod/2008pubs/ p70-117.pdf. 2010] Disability, Disparities and Health Care Reform 89 8 ceived federal benefits based on an inability to work. This is potentially much broader than, for example, the definition of disability in the ADA, “a physical or mental impairment that substantially limits one or more of the major life activities.”9 II. BARRIERS TO CARE AND HEALTH DISPARITIES When I started researching the effect of inaccessible medical equipment on access to basic (...truncated)