INTRODUCTION
Promoting a New Research Agenda Health Disparities Research at the Intersection of Disability, Race, and Ethnicity Willi Horner-Johnson, PhD,* Glenn T. Fujiura, PhD,w and Tawara D. Goode, MAz
Background: Differences in access to and receipt of health care have been extensively documented across racial and ethnic groups. Similarly, a growing body of research has documented disparities between people with and without disabilities in obtaining needed health care. However, our understanding of the intersection of disability with race and ethnicity in health care is very limited. Objectives: The purpose of this supplement is to begin to bridge the gap between research on racial and ethnic health disparities and research on disability-related health disparities. Results: The papers in this supplement examine evidence of racial and ethnic disparities within various populations of people with disabilities, and explore unique issues at the intersection of disability, race, and ethnicity. Conclusions: The studies in this issue provide a starting point, and are intended to serve as an impetus for building a more robust literature on health care issues impacting the expanding segment of United States population that both experience disability and belong to racial and ethnic groups other than non-Hispanic white. Key Words: disability, race, ethnicity, health disparities (Med Care 2014;52: S1–S2)
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his 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 the Intersection of Race, Ethnicity, and Disability: A National
From the *Institute on Development & Disability, Oregon Health & Science University, Portland, OR; wDepartment of Disability and Human Development, University of Illinois at Chicago, Chicago, IL; and zNational Center for Cultural Competence, Center for Child Health and Human Development, Georgetown University Medical Center, Washington, DC. Funding for this issue was provided by Grant #R13 HS021920 from the Agency for Healthcare Research and Quality. Support for steps leading to this supplement came from the Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD) under Cooperative Agreement U01DD000231 to the Association of University Centers on Disabilities (AUCD). The authors declare no conflict of interest. Reprints: Willi Horner-Johnson, PhD, Institute on Development & Disability, Oregon Health & Science University, 707 SW Gaines Street, Portland, OR 97239 E-mail: [email protected]. Copyright r 2014 by Lippincott Williams & Wilkins ISSN: 0025-7079/14/5210-00S1
Medical Care
Volume 52, Number 10 Suppl 3, October 2014
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. www.lww-medicalcare.com |
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Medical Care
Horner-Johnson et al
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 1. Institute of Medicine. Unequal treatment: Confronting Racial and Ethnic Disparities in Health Care. United States: Institute of Medicine; 2002.
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Volume 52, Number 10 Suppl 3, October 2014
2. US Department of Health and Human Services. HHS Action Plan to Reduce Racial and Ethnic Health Disparities. Washington, DC: US Department of Health and Human Services; 2011. 3. Agency for Healthcare Research and Quality (AHRQ). 2013 National Healthcare Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality; 2014. 4. DeVoe JE, Tillotson CJ, Lesko SE, et al. The case for synergy between a usual source of care and health insurance coverage. J Gen Intern Med. 2011;26:1059–1066. 5. Call KT, McAlpine DD, Johnson PJ, et al. Barriers to care among American Indians in public health care programs. Med Care. 2006;44:595–600. 6. Cristancho S, Garces DM, Peters KE, et al. Listening to rural Hispanic immigrants in the Midwest: a community-based participatory assessment of major barriers to health care access and use. Qual Health Res. 2008;18:633–646. 7. Kim W, Keefe RH. Barriers to healthcare among Asian Americans. Soc Work Public Health. 2010;25:286–295. 8. Shavers VL, Fagan P, Jones D, et al. The state of research on racial/ ethnic discrimination in the receipt of health care. Am J Public Health. 2012;102:953–966. 9. Abdus S, Selden TMl. Preventive services for adults: how have differences across subgroups changed over the past decade? Med Care. 2013;51:999–1007. 10. Chevarley FM, Thierry JM, Gill CJ, et al. Health, preventive health care, and health care access among women with disabilities in the 1994-1995 National Health Interview Survey, supplement on disability. Women Health Issues. 2006;16:297–312. 11. Gulley SP, Altman BM. Disability in two health care systems: access, quality, satisfaction, and physician contacts among working-age Canadians and Americans with disabilities. Disabil Health J. 2008;1:196–208. 12. Iezzoni LI, Frakt AB, Pizer SD. Uninsured persons with disability confront substantial barriers to health care services. Disabil Health J. 2011;4:238–244. 13. Lee JC, Hasnai-Wynia R, Lau DT. Delay in seeing a doctor due to cost: disparity between older adults with and without disabilities in the United States. Health Serv Res. 2012;47:698–720. 14. Drainoni M, Lee-Hood E, Tobias C, et al. Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 2006;17:101–115. 15. Mudrick NR, Breslin ML, Liang M, et al. Physical accessibility in primary health care settings: results from California on-site reviews. Disab Health Jl. 2012;5:159–167. 16. Scheer J, Kroll T, Neri MT, et al. Access barriers for persons with disabilities: the consumer’s perspective. J Disabil Policy Stud. 2003;13:221–230. 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. 18. Gulley SP, Rasch EK, Chan L. Difference, disparity & disability: a comparison of health, insurance coverage and health service use on the basis of race/ethnicity among US adults with disabilities, 2006-2008. Med Care. 2014;52:S9–S16. 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.
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2014 Lippincott Williams & Wilkins
Promoting a New Research Agenda Health Disparities Research at the Intersection of Disability, Race, and Ethnicity Willi Horner-Johnson, PhD,* Glenn T. Fujiura, PhD,w and Tawara D. Goode, MAz
Background: Differences in access to and receipt of health care have been extensively documented across racial and ethnic groups. Similarly, a growing body of research has documented disparities between people with and without disabilities in obtaining needed health care. However, our understanding of the intersection of disability with race and ethnicity in health care is very limited. Objectives: The purpose of this supplement is to begin to bridge the gap between research on racial and ethnic health disparities and research on disability-related health disparities. Results: The papers in this supplement examine evidence of racial and ethnic disparities within various populations of people with disabilities, and explore unique issues at the intersection of disability, race, and ethnicity. Conclusions: The studies in this issue provide a starting point, and are intended to serve as an impetus for building a more robust literature on health care issues impacting the expanding segment of United States population that both experience disability and belong to racial and ethnic groups other than non-Hispanic white. Key Words: disability, race, ethnicity, health disparities (Med Care 2014;52: S1–S2)
T
his 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 the Intersection of Race, Ethnicity, and Disability: A National
From the *Institute on Development & Disability, Oregon Health & Science University, Portland, OR; wDepartment of Disability and Human Development, University of Illinois at Chicago, Chicago, IL; and zNational Center for Cultural Competence, Center for Child Health and Human Development, Georgetown University Medical Center, Washington, DC. Funding for this issue was provided by Grant #R13 HS021920 from the Agency for Healthcare Research and Quality. Support for steps leading to this supplement came from the Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD) under Cooperative Agreement U01DD000231 to the Association of University Centers on Disabilities (AUCD). The authors declare no conflict of interest. Reprints: Willi Horner-Johnson, PhD, Institute on Development & Disability, Oregon Health & Science University, 707 SW Gaines Street, Portland, OR 97239 E-mail: [email protected]. Copyright r 2014 by Lippincott Williams & Wilkins ISSN: 0025-7079/14/5210-00S1
Medical Care
Volume 52, Number 10 Suppl 3, October 2014
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. www.lww-medicalcare.com |
S1
Medical Care
Horner-Johnson et al
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 1. Institute of Medicine. Unequal treatment: Confronting Racial and Ethnic Disparities in Health Care. United States: Institute of Medicine; 2002.
S2 | www.lww-medicalcare.com
Volume 52, Number 10 Suppl 3, October 2014
2. US Department of Health and Human Services. HHS Action Plan to Reduce Racial and Ethnic Health Disparities. Washington, DC: US Department of Health and Human Services; 2011. 3. Agency for Healthcare Research and Quality (AHRQ). 2013 National Healthcare Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality; 2014. 4. DeVoe JE, Tillotson CJ, Lesko SE, et al. The case for synergy between a usual source of care and health insurance coverage. J Gen Intern Med. 2011;26:1059–1066. 5. Call KT, McAlpine DD, Johnson PJ, et al. Barriers to care among American Indians in public health care programs. Med Care. 2006;44:595–600. 6. Cristancho S, Garces DM, Peters KE, et al. Listening to rural Hispanic immigrants in the Midwest: a community-based participatory assessment of major barriers to health care access and use. Qual Health Res. 2008;18:633–646. 7. Kim W, Keefe RH. Barriers to healthcare among Asian Americans. Soc Work Public Health. 2010;25:286–295. 8. Shavers VL, Fagan P, Jones D, et al. The state of research on racial/ ethnic discrimination in the receipt of health care. Am J Public Health. 2012;102:953–966. 9. Abdus S, Selden TMl. Preventive services for adults: how have differences across subgroups changed over the past decade? Med Care. 2013;51:999–1007. 10. Chevarley FM, Thierry JM, Gill CJ, et al. Health, preventive health care, and health care access among women with disabilities in the 1994-1995 National Health Interview Survey, supplement on disability. Women Health Issues. 2006;16:297–312. 11. Gulley SP, Altman BM. Disability in two health care systems: access, quality, satisfaction, and physician contacts among working-age Canadians and Americans with disabilities. Disabil Health J. 2008;1:196–208. 12. Iezzoni LI, Frakt AB, Pizer SD. Uninsured persons with disability confront substantial barriers to health care services. Disabil Health J. 2011;4:238–244. 13. Lee JC, Hasnai-Wynia R, Lau DT. Delay in seeing a doctor due to cost: disparity between older adults with and without disabilities in the United States. Health Serv Res. 2012;47:698–720. 14. Drainoni M, Lee-Hood E, Tobias C, et al. Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 2006;17:101–115. 15. Mudrick NR, Breslin ML, Liang M, et al. Physical accessibility in primary health care settings: results from California on-site reviews. Disab Health Jl. 2012;5:159–167. 16. Scheer J, Kroll T, Neri MT, et al. Access barriers for persons with disabilities: the consumer’s perspective. J Disabil Policy Stud. 2003;13:221–230. 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. 18. Gulley SP, Rasch EK, Chan L. Difference, disparity & disability: a comparison of health, insurance coverage and health service use on the basis of race/ethnicity among US adults with disabilities, 2006-2008. Med Care. 2014;52:S9–S16. 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.
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2014 Lippincott Williams & Wilkins
