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Introduction

Promoting a New Research Agenda

Health Disparities Research at the Intersection of Disability, Race, and Ethnicity

Horner-Johnson, Willi PhD*; Fujiura, Glenn T. PhD; Goode, Tawara D. MA

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doi: 10.1097/MLR.0000000000000220
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Abstract

This special issue of Medical Care is focused on the intersection of disability, race, and ethnicity, and the particular health care barriers faced by people at this intersection. The papers in this issue are based in part on presentations given at Health Disparities Research at theIntersection of Race, Ethnicity, and Disability: A National Conference, held April 25–26, 2013 in Washington, DC. The conference was an outcome of Project Intersect: Addressing Health Disparities at the Intersection of Race, Ethnicity, and Disability, a multisite research effort intended to establish a baseline of knowledge about health care access barriers and disparities affecting adults with disabilities who are also members of underserved racial and ethnic groups.

Differences in access to and receipt of health care have been extensively documented across racial and ethnic groups.1–3 Compared with non-Hispanic whites, people in other racial and ethnic groups are less likely to have adequate health insurance coverage and less likely to have a usual source of health care.4 Further, members of these racial and ethnic groups often encounter discrimination, cultural misunderstandings, and language barriers within health care settings.5–8 These barriers contribute to documented disparities in preventive health care for people in underserved racial and ethnic groups.9

Similarly, a growing body of research has documented disparities between people with and without disabilities in obtaining needed health care. Disparities include substantially more unmet health care needs and delayed care associated with physical and economic barriers,10–16 despite the fact that most people with disabilities have some type of health insurance coverage.12 Inequities are compounded by difficulties in finding physicians able to provide knowledgeable and respectful care to individuals with disabilities.14,16

Our understanding of the intersection of disability and race and ethnicity is limited. The literature to date on disability-related health care disparities has given scant attention to the diversity of the population of people with disabilities. Likewise, research on racial and ethnic health care disparities has rarely considered or included the potential compounding or interaction effects of having a disability. This supplement is among the first efforts in the peer-reviewed literature to bridge the gap between these 2 fields of research.

The supplement begins with a commentary by Goode et al17 that provides a historical background on the separate evolution of racial and ethnic health disparities research and disability-related disparities research. The commentary includes an overview of key conceptual issues undergirding research in the field of disability and health that may be less familiar to readers of Medical Care, and calls for greater attention to the multiple dimensions of cultural diversity within the US population.

The first 4 research articles in this issue examine evidence of racial and ethnic disparities within various groups of people with disabilities. Gulley et al18 assess national differences in health, insurance coverage, and use of health services between non-Hispanic whites, non-Hispanic blacks, and Hispanics with and without disabilities. Alston et al19 describe racial and ethnic disparities in use of assistive technology among veterans with disabilities. Bershadsky et al20 present data on racial and ethnic differences in preventive health care among adults with intellectual disabilities. Ozturk et al21 focus on racial and ethnic disparities in health care utilization among youth with muscular dystrophy.

The next 3 articles delve into unique issues at the intersection of disability, race, and ethnicity. Horner-Johnson and Dobbertin22 use nationally representative data to examine interaction effects and additive effects of both belonging to an underserved racial or ethnic group and having a disability. Peterson-Besse et al23 review the limited existing literature on health care barriers encountered by people with disabilities in underserved racial and ethnic groups. Bogenschutz24 presents qualitative data on the health care experiences of immigrant families of individuals with developmental disabilities.

The reader will note subtle and sometimes not so subtle differences in the definition and characterization of disability across the studies. Although there are conventions, there is no universal consensus. Different definitions are employed for different purposes. Disability is a construct that may employ condition-based diagnostic schemes, judgments of the impact of an underlying impairment on specific functions or life activities, the functioning of the individual in the context of specific environments, or some combination or variation of each of these criteria. The key point is that there is complexity to our cultural notions of disability.

We close the supplement with a commentary from Camara Jones,25 based on her insightful and inspiring keynote address at last year’s Project Intersect conference. Dr Jones illustrates how both race and disability are related to health inequity and identifies necessary steps to achieve health equity across groups.

The articles in this issue are a testament to the nascent stage of research pertaining to the combination of disability and race and ethnicity. These studies provide a starting point for building a more robust literature on health care issues impacting the expanding segment of the US population that experiences disability and belongs to a racial or ethnic group other than non-Hispanic white. Martin Luther King, Jr famously said, “Of all forms of inequality, injustice in health care is the most shocking and inhumane” (King, 1966). Unfortunately, injustice in the US health care system has proved distressingly resistant to change. As health care transformation proceeds, efforts to reduce inequity in health care will gain increasing prominence. Our hope is that these efforts will take into account the full range of patient diversity and needs, including those at the intersection of disability, race, and ethnicity.

REFERENCES

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17. Goode TD, Carter-Pokras OD, Horner-Johnson W, et al.. Parallel tracks: reflections on the need for collaborative health disparities research on race/ethnicity and disability. Med Care. 2014;52:S3–S8.
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19. Alston R, Lewis A, Loggins S. Assistive technology and veterans with severe disabilities: examining the relationships among race, personal factors, medical support, income support and use. Med Care. 2014;52:S17–S24.
20. Bershadsky J, Hiersteiner D, Fay ML, et al.. Race/ethnicity and the use of preventive health care among adults with intellectual and developmental disabilities. Med Care. 2014;52:S25–S31.
21. Ozturk OD, McDermott S, Mann J, et al.. Disparities in health care utilization by race among teenagers and young adults with muscular dystrophy. Med Care. 2014;52:S32–S39.
22. Horner-Johnson W, Dobbertin K. Usual source of care and unmet healthcare needs: interaction of disability with race and ethnicity. Med Care. 2014;52:S40–S50.
23. Peterson-Besse JJ, Walsh ES, Horner-Johnson W, et al.. Barriers to healthcare among people with disabilities who are members of underserved racial and ethnic groups: a scoping review of the literature. Med Care. 2014;52:S51–S63.
24. Bogenschutz M. ‘We find a way’: challenges and facilitators for health care access among immigrants and refugees with intellectual and developmental disabilities. Med Care. 2014;52:S64–S70.
25. Jones CP. Systems of power, axes of inequity: parallels, intersections, braiding the strands. Med Care. 2014;52:S71–S75.
Keywords:

disability; race; ethnicity; health disparities

© 2014 by Lippincott Williams & Wilkins.