Disability and Health Journal 7 (2014) 6e12 www.disabilityandhealthjnl.com
Commentary: Chronic Conditions and Disability
Research contributions and implications Amanda Reichard, Ph.D.*, Dorothy Nary, Ph.D., and Jamie Simpson, M.S. Research and Training Center on Independent Living, University of Kansas, USA
Abstract Distinguishing and characterizing the terms ‘‘chronic conditions’’ and ‘‘disability’’ is important to the quality of public health research. Research has documented that people with disabilities experience higher prevalences of chronic conditions than the general population; however, these differences are rarely attributable to the pre-existing disability, and instead likely stem from preventable environmental factors. In this paper we describe contributions from the research as well as the need for a paradigm shift to effectively address the unique public health needs of people with disabilities. In addition, we describe evidence of support for such a paradigm shift. We intend for this paper to invite discussion in the field about methods to elicit the changes necessary in public health research for improved policy and practice that better address the public health needs of people with disabilities. Published by Elsevier Inc. Keywords: Chronic conditions; Chronic disease; Disability
Many people commonly link1 the terms ‘‘chronic condition’’ and ‘‘disability’’; some even mistakenly use the concepts synonymously. The terms, however, each have unique meaning and are not interchangeable. Distinguishing and characterizing these terms is important to the quality of public health research. The purpose of this paper is to make the distinction between these terms, and to identify the implications of this distinction for public health research.
Distinguishing the concepts of disability and chronic conditions The conceptual framework of disability currently preferred by most disability advocates and researchers is one in which disability is related to but separate from health, not wholly integrated within it, as the medical model posited. This perspective began more than 25 years
The authors do not have a conflict of interest. Portions of this work were previously presented at the Disability Chair’s Forum at the meetings of the American Public Health Association, October 28, 2012, San Francisco, California. This work was supported by funds from the National Institute on Disability and Rehabilitation Research (NIDRR) through grants #H133B110006 and #H133B060018. * Corresponding author. University of New Hampshire, 10 West Edge Dr., Suite 101, Durham, NH 03824, USA. Tel.: þ1 603 862 5266. E-mail address: [email protected] (A. Reichard). 1936-6574/$ - see front matter Published by Elsevier Inc. http://dx.doi.org/10.1016/j.dhjo.2013.09.005
ago; but, more recently, the disability community’s adoption of the International Classification of Functioning (ICF, 2009), the World Health Organization’s (WHO) ‘‘framework for health and disability,’’ demonstrates support for this preference, and continued development. The ICF emphasizes disability as an outcome of the ‘‘interactions between health conditions (diseases, disorders and injuries) and contextual factors,’’2 rather than viewing disability as a cause of poor health; this definition views disability not only as a physical and medical dysfunction but also includes social influences. In this model, even though the concepts of chronic conditions and health are contextually linked, the WHO makes no reference to health in its definition of disability per se, (disability is ‘‘. impairments, activity limitations, and participation restrictions. reflecting an interaction between features of a person’s body and features of the society in which he or she lives (p.1)’’3); the WHO goes on to emphasize that people with and without disabilities have the same health needs. Additionally, the U.S. Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities endorsed this distinction between disability and health by clearly stating that people with disabilities are capable of leading healthy lives.4 Although disability does not equate with chronic health conditions, there is an intersection between the two. The extent to which chronic health conditions and disability overlap empirically remains unknown, in part because it depends on how we define disability and chronic conditions.
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Similar to WHO, the Americans with Disabilities Act of 1990 (ADA) defines disability broadly and focuses on function (i.e., physical or mental impairment that substantially limits that person in one or more major life activities, or the record or perception of having such an impairment).5 In fact, the ADA incorporates multiple approaches to defining disability, including functional, categorical, and social.6 Thus, given these broad definitions, people with a chronic condition may experience some form of disability, but not every person with a disability, just like those without disability, experiences a chronic health condition. Relationship between chronic disease and disabilities In understanding the relationship of chronic health conditions and disability, it is useful to think about causality and its directions. Specifically, chronic health conditions can cause the development of a disability. In fact, the Centers for Disease Control (CDC) report that chronic diseases are the leading causes of death and disability in the United States.7 Alternatively, there usually is not a causal relationship in the other direction: disability typically does not cause chronic health conditions, although disability may set the stage for or make a person more vulnerable to secondary conditions, or influence the age of onset of the chronic condition. For example, a person with a spinal cord injury might develop osteoarthritis at an early age due to overuse of joints while propelling a manual wheelchair. However, it is primarily with the influence of social determinants, genetic predisposition, and health behaviors that a person with a disability, just as a person without a disability develops chronic health conditions. We contend that what elevates the importance of the relationship between disability and chronic health conditions is that people with disabilities are disproportionately affected by the negative effects of social mediating factors which place them at higher risk for developing them. These issues affect people with disabilities across the lifespan, although the data presented here address only adults aged 18 and above. Data from population-based surveys and state and local data sources demonstrate that people with disabilities have chronic disease prevalences that are substantially higher than those without disability.8e10 Fig. 1 depicts our findings from the Medical Expenditures Panel Survey (MEPS)8 showing that people with cognitive limitations or physical disabilities have significantly higher prevalences for arthritis, asthma, cardiovascular disease, diabetes, high blood pressure, high cholesterol, and stroke. People with cognitive limitations (CL) or physical disabilities (PD) are not only more likely to be obese, but if obese, these groups had significantly higher BMI scores than those with no disabilities.8 Similarly, Froehlich-Grobe et al found significantly higher BMI scores for wheelchair users.11 Moreover, our research showed that people with disabilities are more likely than those with no disability to
Fig. 1. Age-adjusted prevalence2 (per 1000) comparing cognitive limitations or physical disability groups to no disability group.
experience multiple chronic conditions (MCC) (Fig. 2). In addition, prevalences of MCC varied by type of disability (physical, cognitive, hearing, vision, or multiple). Those with more than one type of disability were most likely to have the greatest number of chronic conditions; nearly 33% of people with 2þ types of disability had 4þ chronic conditions.12,13 People with disabilities develop chronic conditions at an earlier age when compared to people with no disabilities14 and die from chronic disease sooner after diagnosis.10,15 So, even though disability is not synonymous with chronic disease, we know that people with disabilities are severely and negatively impacted by disparate prevalences of chronic conditions. Although the data do not enable us to know whether the disability preceded or stemmed from the chronic condition, we have evidence to support that these disparities rarely exist
Fig. 2. Age-adjusted multiple chronic condition rates by disability type among adults aged 18e64, MEPS, 2004e2008.
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because people with disabilities are predisposed to chronic diseases or illnesses. Instead, these disparities result from wide-ranging social, environmental, and behavioral determinants of health, such as poverty,15,16 income inequality,15,16 low education17 inadequate access to health care18 and low social support; these influences can be linked to death as readily as can pathophysiological and behavioral causes.19 Further, people with disabilities are especially vulnerable to fewer educational and employment opportunities,20e22 feeling isolated within their communities,23,24 and living in poverty.22 A recent economic report states, ‘‘People with disabilities are much more likely to experience various forms of material hardshipdincluding food insecurity, not getting needed medical or dental care, and not being able to pay rent, mortgage, and utility billsdthan people without disabilities, even after controlling for income and other characteristics (p.2),’’25 and health disparities.26,27 Implications for epidemiology and surveillance research Consideration of the intersection of disability and chronic conditions is important to setting the public health research agenda for health disparities experienced by people with disabilities. In the last 30 years, public health has begun to embrace disability as a population that requires action toward health promotion and improvement in quality of life, rather than disability as only an outcome to be prevented.28 This paradigm shift has required endorsing the conceptualization of disability as distinct from chronic conditions. To date, the level of support for this conception is emerging and, inasmuch, not well defined or understood. If this paradigm shift to improving the health of people with disabilities is to gain dominance, public health must recognize and actively endorse the distinction between the concepts of disability and chronic disease in its surveillance, epidemiology research, programs, and policies. The Centers for Disease Control has implemented and endorsed several initiatives toward this end (see Krahn et al, this issue).29 To provide a strong and effective evidence base for public health policy and practice, we need to have the capacity to conduct epidemiologic research that allows us to understand people with disabilities as a health disparity population, founded on a framework of disability as separate from health and chronic conditions. We describe these implications for epidemiology and surveillance research next, followed by a discussion of existing support for such a paradigm shift. Implications for change in epidemiology and surveillance research Despite its importance,30 epidemiology as it relates to disability has not yet been well defined; however as Andresen31 stated, ‘‘the scope of general epidemiology would suggest that the definition should certainly include study of
basic elements of descriptive epidemiology (who, what, where), etiological determinants of impairments, and the frequency and predictors of different outcomes of disability (p. 18).’’ At the same time, she goes on to emphasize that using this basic definition alone leads us to conduct epidemiologic investigations regarding prevention of new primary disabilities and the prevention of secondary conditions, and remains complicit with the traditional view of disability and public health.31 Understanding whether the chronic conditions precede the disability or vice versa can help us focus our research, policy and practice outcomes where they will have the greatest impact. Specifically, knowing which came first can help us understand where to focus (1) prevention of co-occurring chronic conditions among those with existing disabilities, and (2) primary prevention of disability resultant from chronic disease. However, only focusing on disability resulting from chronic disease prohibits us from conducting chronic disease prevention and other health promotion activities needed to improve the health and wellbeing of people with disabilities, so that they may maintain and increase their ability to live independently and to fully participate in the community. Although some epidemiologic research has already begun toward this end,8e10,14,15 we must continue to expand disability epidemiology by conducting other relevant research to inform the relationship between disability and chronic conditions, as well as prevention and management of chronic conditions. This will require, in part, that we begin to collect longitudinal data so that we can examine the temporal relationships between chronic conditions and disability and relative causation. To date, much research has focused on disability resulting from chronic disease rather than chronic disease among those with existing disabilities.32e34 A primary example of this is diabetes research in which most of the literature related to the intersection of these two examines the development of disability as a result of diabetes.35,36 Very little addresses it the other way around to ask: What are the experiences of people with disabilities who develop diabetes? We need both types of research. The studies that do address it from this perspective typically are from the Physical Medicine and Rehabilitation field, and address, for example, coronary artery disease in people with vision loss,37 cardiovascular and metabolic conditions in males with spinal cord injury,38 and metabolic syndrome in neuromuscular disease.39 We must extend disability epidemiology research and practice by including prevention of chronic conditions in disability epidemiology research in the same way we conduct it for other health disparate populations. Gathering epidemiologic research on disability descriptors has been in development for a number of years, but has not yet come to fruition. Only in adopting this practice can we appropriately and responsibly study chronic disease among those with disability and best meet the public health needs of people with disabilities. Conducting prevention of chronic
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conditions for people with disabilities requires the adoption of the concept we describe above as an underpinning of disability epidemiology research: understanding and viewing disability separate from health or health status, and recognizing people with disabilities as individuals who can benefit from interventions to reduce chronic conditions. Effective disability epidemiology research also requires that we include disability as a demographic variable in our surveillance practice and requires that we purposefully define ‘‘disability.’’ It also requires consistent and comprehensive use of disability identifiers across all national survey questionnaires. These concepts are supported by WHO and the World Bank, in the World Report on Disability,40 Healthy People 2010 and 2020,41,42 as well as many disability and health researchers.26,43e45 Some initial progress has been made in this area with the statebase Behavioral and Risk Factor Surveillance System (BRFSS) and the federal policy supporting the use of the American Community Survey (ACS) disability questions among federal surveys. However, even these measures have been shown to not accurately identify some disability subpopulations; thus, we need to continue to hone the measures used. Not doing so can drastically limit the value of our epidemiology research and practice, because the definitions used for disability directly shape the questions asked on surveys to identify people with disabilities. This is especially the case for some subpopulations which (e.g., individuals with intellectual and development disabilities) are not accurately identified, due to either a broad, generic disability identifier question or to wording that does not elicit an affirmative response from those it is intended to identify. Thus, if we do not purposefully and meaningfully define and identify disability subpopulations for surveys, the data gathered to provide epidemiologic and surveillance studies will not accurately reflect the populations of people with disabilities we need to better understand. In other words, if we do not ask the right questions, any information that we collect will be limited as a result. This affects the evidence base on which policies and practices are founded and, inasmuch, weakens their effectiveness in meeting the needs of people with disabilities. As recommended by the Institute of Medicine, federal agencies need to invest in public health research specifically designed to address the unique needs of people with disabilities.46 Not only have people with disabilities not been included in clinical research not directly related to their disability, they have been summarily excluded, making it impossible to address their needs. To fully understand the relationship between chronic disease and disability, we must explicitly involve members of this population in clinical research to explore what contributes to these disparities. Additionally, we must integrally involve people with disabilities in public health research more broadly, especially Community Based Participatory Research, to ensure the relevance of the research through
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(see also the combination of knowledge and action the article in this issue by Traci and Seekins describing the importance of the role of community). Additionally, as addressed by Krahn and Campbell,28 we need to bring successful health promotion interventions for people with disabilities to scale. We also cannot solely focus research on disability that results from chronic conditions at the expense of prevention/self-management of chronic diseases for the large number of people who already experience disability and who have an increased risk of developing chronic disease. We have empirical evidence that (a) people with disabilities experience unacceptably high prevalences of chronic disease, and (b) people with disabilities experience chronic disease at greater prevalence from those without disability. As the public health research community moves forward with chronic disease research, we need to ensure that people with disabilities do not get lost as a population with health disparities. This requires us to clearly define disability as separate from chronic disease but at the same time acknowledge that (1) people with disabilities experience unacceptably high risk for and prevalence of chronic conditions and (2) disability can emerge from chronic conditions, as Drum discusses in the introduction to this issue. The conundrum lies in needing to demonstrate the disparities to convey the need to address them without perpetuating the idea that chronic conditions are equivalent with disability or that people with disabilities inherently experience chronic conditions. In addition, given that state agencies, community organizations and others typically align their policies and practices with the administrative tone set by federal agencies, it is imperative that federal agencies more fully develop research policies that purposefully and meaningfully adopt the view of people with disabilities as a health disparity population, They must assimilate this view throughout the culture of the agencies, including their communications, reports, program and philosophies, and they should continue to provide real support for disability research as vulnerable populations through funding they provide for programs for epidemiology research, chronic disease prevention and improved self-management skills for this population Some progress has begun in these areas. For example, the Agency for Healthcare Research and Quality (AHRQ) has made efforts to designate people with disabilities as a priority population,49 funding of disability and health programs in state public health departments by the Centers for Disease Control and Prevention,50 giving attention to ‘‘enabling’’ health data collection instruments and methods to include people with disabilities, and including disability objectives in the Healthy People agendas.41 Finally, eliminating the dated public health model in which disability is viewed only as an outcome to be prevented will have associated policy, practice and research implications related to cost. When the public health community focuses on understanding how to help people with disabilities prevent or manage chronic conditions, and
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developing research and practice applications for addressing the various determinants of health causing the disparities, this population can become a priority and public health can begin to minimize the disproportionate health risks and poor health this population currently experiences. As a result, investing in such services for prevention of chronic conditions for this population could effect major cost savings.
National support for such change As Drum and colleagues (2009) stated: ‘‘When disabilities are regarded as health outcomes, people who experience disabilities may be neglected by traditional public health interventions.’’45(p139) Several national policy initiatives have already begun to elevate and support this paradigm shift. In devising Healthy People 2010, the U.S. Department of Health and Human Services affirmed for the first time the health potential of people with disabilities by devoting one of 28 objective focus areas, or chapters, to this population. The goal for the disability chapter was to ‘‘promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population’’ (p.7). This forward-thinking policy initiative (continued with Healthy People 202031) confirmed that public health needed a standardized definition of disability and that it should go beyond preventing disabling conditions, to address a broad array of health promotion activities. The Centers for Disease Control and Prevention has responded to this need for health promotion activities for persons with disabilities by funding the development of programs that promote the idea that people with disabilities can be healthy, such as Living Well with a Disability.51 Similarly the Administration on Developmental Disabilities funded the Healthy Lifestyles for People with Disabilities programs.52 Both of these programs are evidence-based programs that teach individuals with disabilities how to live healthier lives. The example set by these programs helps to dispel the outdated notion that health and disability are mutually exclusive. In addition, they have incorporated epidemiologic investigations that measure disparities among people with disabilities, such as poorer prevalence of mammography screening among women with disabilities than those without a disability. Subsequently, the Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities (2005)4 states clearly that disability is not an illness, and that active health promotion is important for persons with disabilities to achieve optimum health. This document further emphasizes the importance of accessible health care and support services to promote independence for people with disabilities. Thus, it promotes an image of people with disabilities as healthy, productive citizens, and presents a policy basis for programming to achieve this goal.
This paradigm shift received continued support in the Affordable Care Act which, as proposed, will, in 2014, recommend that health care providers assess access to care and treatment for individuals with disabilities, disability cultural competency training for health care providers, and data collection on individuals, including by disability status, receiving health care to assess quality measures. Although this legislation recommends rather than mandates change, it adds momentum to existing efforts to distinguish disability and health outcomes, and demonstrates Federal support.43,53 As national and state funding agencies continue to adopt a culture of and policies and practices endorsing the view of people with disabilities as a minority health disparity population, public health research will advance and begin to reduce the health disparities experienced by people with disabilities.
Conclusion In 1995, Chamie argued that ‘‘disability, by definition, is not an illness and noted that lack of understanding that people with disabilities can be healthy and productive would have negative consequences.’’54(p323) Our public health research must continue to elevate and integrate the importance of this differentiation of health and chronic conditions from disability. More recently the Department of Health and Human Services has supported this concept as well.4,41,42 At the present time, in the US alone, millions of people experiencing disability face preventable consequences of chronic conditions because we have not consistently and systematically differentiated disability from chronic conditions,55 but instead assumed that people with disabilities are inherently unhealthy. Regardless of whether a person with a disability does or does not have a chronic disease, research to inform and support health promotion programs, public health initiatives and community environments is necessary to ensure that all people with disabilities are included with intention and not as an afterthought. U.S. citizens with disabilities have fought for and won many rights over the last 50 years. However, to fully enjoy the benefits of these rights, they must be supported, as nondisabled citizens are, to achieve the highest degree of health possible. Only when we have untangled the knot of disability, health and chronic conditions, will this potential be realized.
References 1. Fox S. E-patients With a Disability or Chronic Disease. Available from: http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disabilityor-Chronic-Disease.aspx; 2007. 2. World Health Organization. Towards a Common Language for Functioning, Disability and Health ICF. Geneva: World Health Organization; 2002.
A. Reichard et al. / Disability and Health Journal 7 (2014) 6e12 3. World Health Organization. Health Topics: Disabilities. World Health Organization. Available from: http://www.who.int/topics/dis abilities/en/; July 11, 2011. 4. U.S. Department of Health and Human Services. The Surgeon General’s Call to Action to Improve Health and Wellness of People With Disabilities. U.S. Government; 2005. 5. Americans With Disabilities Act of 1990 (1990). 6. Drum C. The dynamics of disability and chronic conditions. Disabil Health J. 2014;7(1):2e5. 7. Centers for Disease Control and Prevention. Chronic Disease Prevention and Health Promotion. Available from: http://www.cdc.gov/ chronicdisease/; 2012. 8. Reichard A, Stolzle H, Fox MH. Health disparities among adults with physical disabilities or cognitive limitations compared to individuals with no disabilities in the United States. Disabil Health J. 2011;4(2): 59e67. 9. Park J, Lee J, Lee J, et al. Disparities between persons with and without disabilities in their participation rates in mass screening. Eur J Public Health. 2009;19(1):85e90. 10. Drum CE, Krahn G, Culley C, Hammond L. Recognizing and responding to the health disparities of people with disabilities. Calif J Health Promot. 2005;3(3):29e42. 11. Froehlich-Grobe K, Aaronson LS, Washburn RA, et al. An exercise trial for wheelchair users: project workout on wheels. Contemp Clin Trials. 2012;33(2):351e363. 12. Reichard A, Fox MH. Using population-based data to examine preventive services by disability type among dually eligible (Medicare/Medicaid) adults. Disabil Health J. 2013;6(2):75e86. 13. Reichard A. Multiple Chronic Conditions and Health Disparities Among People with Disabilities Compared to People Without Disabilities. Poster Presentation at 2012 American Public Health Association Conference. 14. DeJong G, Palsbo SE, Beatty PW, Jones GC, Kroll T, Neri MT. The organization and financing of health services for persons with disabilities. Milbank Q. 2002;80(2):261e301. 15. Capriotti T. Cardiovascular disease prevention in women with disabilities. Rehabil Nurs. 2006;31(3). 16. Burkhauser RV, Hountenville AJ, Rovba L. Rising Poverty in the Midst of Plenty: The Case of Working-age People With Disabilities Over the Business Cycles of the 1980s and 1990s. Rehabilitation Research and Training Center for Economic Research on Employment Policy for Persons with Disabilities at Cornell University; 2005. 17. Dowrick PW, Anderson J, Heyer K, Acosta J. Postsecondary education across the USA: experiences of adults with disabilities. J Vocat Rehabil. 2005;22:41e47. 18. Neri MT, Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disabil Rehabil. 2003;25(2):85e96. 19. Galea S, Tracy M, Hoggatt K, DiMaggio C, Karpati A. Estimated deaths attributable to social factors in the United States. Am J Public Health; 2011:1456e1465. 20. Steinmetz E. Americans With Disabilities: 2002, Current Population Reports. Washington, D.C.: US Census Bureau; 2006. 21. Wilson-Kovacs D, Ryan MK, Haslam SA, Rabinovich A. Just because you can get a wheelchair in the building doesn’t necessarily mean that you can still participate: barriers to the career advancement of disabled professionals. Disabil Soc. 2008;23:705e717. 22. Research and Rehabilitation Training Center on Disability Statistics and Demographics. 2011 Annual Disability Statistics Compendium Durham, NH. Available from: http://disabilitycompendium.org/pdf/ Compendium2011.pdf; 2011. 23. National Organization on Disability. Detailed Results From the 2004 N.O.D./Harris Survey of Americans With Disabilities. New York, NY: National Organization on Disability & Harris Interactive, Inc.; 2004.
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24. White GW, Lloyd Simpson J, Gonda C, Ravesloot C, Coble Z. Moving from independence to interdependence: a conceptual model for better understanding community participation of centers for independent living consumers. J Disabil Policy Stud. 2010;20(4): 233e240. 25. Fremsted S. Half in Ten: Why Taking Disability into Account is Essential to Reducing Income Poverty and Expanding Economic Inclusion. Washington, D.C.: Center for Economic and Policy Research; 2009. 26. Krahn G, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):70e82. 27. Durstine JL, Painter P, Franklin BA, Morgan D, Pitetti KH, Roberts SO. Physical activity for the chronically ill and disabled. Sports Med. 2000;30(3):207. 28. Krahn G, Campbell VA. Evolving views of disability and public health: the roles of advocacy and public health. Disabil Health J. 2011;4(1):12e18. 29. Krahn G, Reyes M, Fox M. Chronic conditions and disability: Toward a conceptual model for national policy and practice considerations. Disabil Health J. 2014;7(1):13e18. 30. Fujiura G, Rutkowski-Kmitta V. Counting disability. In: Albrecht GL, Seelman KD, Bury M, eds. Handbook of Disability Studies. Thousand Oaks, CA: Sage; 2001:69e96. 31. Andresen EM. Epidemiology and biostatistics. In: Lollar DJ, Andresen EM, eds. Public Health Perspectives on Disability: Epidemiology to Ethics and Beyond. New York: Springer; 2011:15e54. 32. Moussavi S, Chatterji S, Verdes E, Tandon A, Patel V, Ustun B. Depression, chronic diseases, and decrements in health: results from the World Health Surveys. Lancet. 2007;370(9590):851e858. 33. Bhattacharya J, Choudhry K, Lakdawalla D. Chronic disease and severe disability among working-age populations. Med Care. 2008;46(1): 92e100. 34. Egede L. Major depression in individuals with chronic medical disorders: prevalence, correlates and association with health resource utilization, lost productivity and functional disability. Gen Hosp Psychiatry. 2007;29(5):409e416. 35. Hogan P, Dall T, Nikolov P. Economic costs of diabetes in the US in 2002. Diabetes Care. 2003;26(3):917e932. 36. Sinclair A, Conroy S, Bayer A. Impact of diabetes on physical function in older people. Diabetes Care. 2008;31(2):233e235. 37. Defrin R, Holtzman S, Katz M, Heruti R, Ohry A, Drory Y. Coronary artery disease and risk factors in people with posttraumatic vision loss. Arch Phys Med Rehabil. 2005;86(5):968e973. 38. LaVela SL, Evans CT, Prohaska TR, Miskevics S, Ganesh SP, Weaver FM. Males aging with a spinal cord injury: prevalence of cardiovascular and metabolic conditions. Arch Phys Med Rehabil. 2012;93(1): 90e95. 39. Aitkens S, Kilmer DD, Wright NC, McCrory MA. Metabolic syndrome in neuromuscular disease. Arch Phys Med Rehabil. 2005;86(5): 1030e1036. 40. World Health Organization. World Report on Disability. Geneva: World Health Organization and World Bank; 2011. 41. U.S. Department of Health & Human Services. Healthy People 2020: Disability and Health; 2010. 42. U.S. Department of Health and Human Services. Healthy People 2010: Understanding and Improving Health. Washington, D.C.; 2000 43. McDermott S, Turk MA. The myth and reality of disability prevalence: measuring disability for research and service. Disabil Health J. 2011;4(1):1e5. 44. Hall JP, Kurth NK, Fall EC. Discrepancy among behavioral risk factor surveillance system, social security, and functional disability measurement. Disabil Health J. 2012;5(1):60e63. 45. Drum CE, Krahn G, Bersani H Jr. Disability and Public Health. Washington, D.C.: American Public Health Association and American Association on Intellectual and Developmental Disabilities; 2009.
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46. Field MJ, Jette A, eds. The Future of Disability in America. Washington, D.C.: National Academies Press; 2007. 47. Newman S. Evidence-based Advocacy: using photovoice to identify barriers and facilitators to community participation after spinal cord injury. Rehabil Nurs. 2010;35(2):47e59. 48. Minkler M, Fadem P, Perry M, Blum K, Moore L, Rogers J. Delimmas in participatory action research: a case study from the disability community. Health Educ Behav. 2002;29:14e29. 49. Clancy CM, Andresen EM. Meeting the health care needs of persons with disabilities: a commentary. Milbank Q. 2002;80(2): 381e391. 50. Lollar DJ. Public health and disability: emerging opportunities. Public Health Rep. 2002;117(2):131e136.
51. Ravesloot CH, Seekins T, Cahill T, Lindgren S, Nary DE, White G. Health promotion for people with disabilities: development and evaluation of the Living Well with a Disability program. Health Educ Res. 2007;22(4):522e531. 52. Abdullah N, Horner-Johnson W, Drum C, et al. Healthy Lifestyles for people with disabilities. Calif J Health Promot. 2004;2(Special issue):42e54. 53. Shakespeare T. Still a health issue. Disabil Health J. 2012;5(3): 129e131. 54. Chamie M. What does morbidity have to do with disability? Disabil Rehabil. 1995;17(7):323e337. 55. Brault M. Americans With Disabilities: 2005, Current Population Reports. Washington, D.C.; 2008.
Commentary: Chronic Conditions and Disability
Research contributions and implications Amanda Reichard, Ph.D.*, Dorothy Nary, Ph.D., and Jamie Simpson, M.S. Research and Training Center on Independent Living, University of Kansas, USA
Abstract Distinguishing and characterizing the terms ‘‘chronic conditions’’ and ‘‘disability’’ is important to the quality of public health research. Research has documented that people with disabilities experience higher prevalences of chronic conditions than the general population; however, these differences are rarely attributable to the pre-existing disability, and instead likely stem from preventable environmental factors. In this paper we describe contributions from the research as well as the need for a paradigm shift to effectively address the unique public health needs of people with disabilities. In addition, we describe evidence of support for such a paradigm shift. We intend for this paper to invite discussion in the field about methods to elicit the changes necessary in public health research for improved policy and practice that better address the public health needs of people with disabilities. Published by Elsevier Inc. Keywords: Chronic conditions; Chronic disease; Disability
Many people commonly link1 the terms ‘‘chronic condition’’ and ‘‘disability’’; some even mistakenly use the concepts synonymously. The terms, however, each have unique meaning and are not interchangeable. Distinguishing and characterizing these terms is important to the quality of public health research. The purpose of this paper is to make the distinction between these terms, and to identify the implications of this distinction for public health research.
Distinguishing the concepts of disability and chronic conditions The conceptual framework of disability currently preferred by most disability advocates and researchers is one in which disability is related to but separate from health, not wholly integrated within it, as the medical model posited. This perspective began more than 25 years
The authors do not have a conflict of interest. Portions of this work were previously presented at the Disability Chair’s Forum at the meetings of the American Public Health Association, October 28, 2012, San Francisco, California. This work was supported by funds from the National Institute on Disability and Rehabilitation Research (NIDRR) through grants #H133B110006 and #H133B060018. * Corresponding author. University of New Hampshire, 10 West Edge Dr., Suite 101, Durham, NH 03824, USA. Tel.: þ1 603 862 5266. E-mail address: [email protected] (A. Reichard). 1936-6574/$ - see front matter Published by Elsevier Inc. http://dx.doi.org/10.1016/j.dhjo.2013.09.005
ago; but, more recently, the disability community’s adoption of the International Classification of Functioning (ICF, 2009), the World Health Organization’s (WHO) ‘‘framework for health and disability,’’ demonstrates support for this preference, and continued development. The ICF emphasizes disability as an outcome of the ‘‘interactions between health conditions (diseases, disorders and injuries) and contextual factors,’’2 rather than viewing disability as a cause of poor health; this definition views disability not only as a physical and medical dysfunction but also includes social influences. In this model, even though the concepts of chronic conditions and health are contextually linked, the WHO makes no reference to health in its definition of disability per se, (disability is ‘‘. impairments, activity limitations, and participation restrictions. reflecting an interaction between features of a person’s body and features of the society in which he or she lives (p.1)’’3); the WHO goes on to emphasize that people with and without disabilities have the same health needs. Additionally, the U.S. Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities endorsed this distinction between disability and health by clearly stating that people with disabilities are capable of leading healthy lives.4 Although disability does not equate with chronic health conditions, there is an intersection between the two. The extent to which chronic health conditions and disability overlap empirically remains unknown, in part because it depends on how we define disability and chronic conditions.
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Similar to WHO, the Americans with Disabilities Act of 1990 (ADA) defines disability broadly and focuses on function (i.e., physical or mental impairment that substantially limits that person in one or more major life activities, or the record or perception of having such an impairment).5 In fact, the ADA incorporates multiple approaches to defining disability, including functional, categorical, and social.6 Thus, given these broad definitions, people with a chronic condition may experience some form of disability, but not every person with a disability, just like those without disability, experiences a chronic health condition. Relationship between chronic disease and disabilities In understanding the relationship of chronic health conditions and disability, it is useful to think about causality and its directions. Specifically, chronic health conditions can cause the development of a disability. In fact, the Centers for Disease Control (CDC) report that chronic diseases are the leading causes of death and disability in the United States.7 Alternatively, there usually is not a causal relationship in the other direction: disability typically does not cause chronic health conditions, although disability may set the stage for or make a person more vulnerable to secondary conditions, or influence the age of onset of the chronic condition. For example, a person with a spinal cord injury might develop osteoarthritis at an early age due to overuse of joints while propelling a manual wheelchair. However, it is primarily with the influence of social determinants, genetic predisposition, and health behaviors that a person with a disability, just as a person without a disability develops chronic health conditions. We contend that what elevates the importance of the relationship between disability and chronic health conditions is that people with disabilities are disproportionately affected by the negative effects of social mediating factors which place them at higher risk for developing them. These issues affect people with disabilities across the lifespan, although the data presented here address only adults aged 18 and above. Data from population-based surveys and state and local data sources demonstrate that people with disabilities have chronic disease prevalences that are substantially higher than those without disability.8e10 Fig. 1 depicts our findings from the Medical Expenditures Panel Survey (MEPS)8 showing that people with cognitive limitations or physical disabilities have significantly higher prevalences for arthritis, asthma, cardiovascular disease, diabetes, high blood pressure, high cholesterol, and stroke. People with cognitive limitations (CL) or physical disabilities (PD) are not only more likely to be obese, but if obese, these groups had significantly higher BMI scores than those with no disabilities.8 Similarly, Froehlich-Grobe et al found significantly higher BMI scores for wheelchair users.11 Moreover, our research showed that people with disabilities are more likely than those with no disability to
Fig. 1. Age-adjusted prevalence2 (per 1000) comparing cognitive limitations or physical disability groups to no disability group.
experience multiple chronic conditions (MCC) (Fig. 2). In addition, prevalences of MCC varied by type of disability (physical, cognitive, hearing, vision, or multiple). Those with more than one type of disability were most likely to have the greatest number of chronic conditions; nearly 33% of people with 2þ types of disability had 4þ chronic conditions.12,13 People with disabilities develop chronic conditions at an earlier age when compared to people with no disabilities14 and die from chronic disease sooner after diagnosis.10,15 So, even though disability is not synonymous with chronic disease, we know that people with disabilities are severely and negatively impacted by disparate prevalences of chronic conditions. Although the data do not enable us to know whether the disability preceded or stemmed from the chronic condition, we have evidence to support that these disparities rarely exist
Fig. 2. Age-adjusted multiple chronic condition rates by disability type among adults aged 18e64, MEPS, 2004e2008.
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because people with disabilities are predisposed to chronic diseases or illnesses. Instead, these disparities result from wide-ranging social, environmental, and behavioral determinants of health, such as poverty,15,16 income inequality,15,16 low education17 inadequate access to health care18 and low social support; these influences can be linked to death as readily as can pathophysiological and behavioral causes.19 Further, people with disabilities are especially vulnerable to fewer educational and employment opportunities,20e22 feeling isolated within their communities,23,24 and living in poverty.22 A recent economic report states, ‘‘People with disabilities are much more likely to experience various forms of material hardshipdincluding food insecurity, not getting needed medical or dental care, and not being able to pay rent, mortgage, and utility billsdthan people without disabilities, even after controlling for income and other characteristics (p.2),’’25 and health disparities.26,27 Implications for epidemiology and surveillance research Consideration of the intersection of disability and chronic conditions is important to setting the public health research agenda for health disparities experienced by people with disabilities. In the last 30 years, public health has begun to embrace disability as a population that requires action toward health promotion and improvement in quality of life, rather than disability as only an outcome to be prevented.28 This paradigm shift has required endorsing the conceptualization of disability as distinct from chronic conditions. To date, the level of support for this conception is emerging and, inasmuch, not well defined or understood. If this paradigm shift to improving the health of people with disabilities is to gain dominance, public health must recognize and actively endorse the distinction between the concepts of disability and chronic disease in its surveillance, epidemiology research, programs, and policies. The Centers for Disease Control has implemented and endorsed several initiatives toward this end (see Krahn et al, this issue).29 To provide a strong and effective evidence base for public health policy and practice, we need to have the capacity to conduct epidemiologic research that allows us to understand people with disabilities as a health disparity population, founded on a framework of disability as separate from health and chronic conditions. We describe these implications for epidemiology and surveillance research next, followed by a discussion of existing support for such a paradigm shift. Implications for change in epidemiology and surveillance research Despite its importance,30 epidemiology as it relates to disability has not yet been well defined; however as Andresen31 stated, ‘‘the scope of general epidemiology would suggest that the definition should certainly include study of
basic elements of descriptive epidemiology (who, what, where), etiological determinants of impairments, and the frequency and predictors of different outcomes of disability (p. 18).’’ At the same time, she goes on to emphasize that using this basic definition alone leads us to conduct epidemiologic investigations regarding prevention of new primary disabilities and the prevention of secondary conditions, and remains complicit with the traditional view of disability and public health.31 Understanding whether the chronic conditions precede the disability or vice versa can help us focus our research, policy and practice outcomes where they will have the greatest impact. Specifically, knowing which came first can help us understand where to focus (1) prevention of co-occurring chronic conditions among those with existing disabilities, and (2) primary prevention of disability resultant from chronic disease. However, only focusing on disability resulting from chronic disease prohibits us from conducting chronic disease prevention and other health promotion activities needed to improve the health and wellbeing of people with disabilities, so that they may maintain and increase their ability to live independently and to fully participate in the community. Although some epidemiologic research has already begun toward this end,8e10,14,15 we must continue to expand disability epidemiology by conducting other relevant research to inform the relationship between disability and chronic conditions, as well as prevention and management of chronic conditions. This will require, in part, that we begin to collect longitudinal data so that we can examine the temporal relationships between chronic conditions and disability and relative causation. To date, much research has focused on disability resulting from chronic disease rather than chronic disease among those with existing disabilities.32e34 A primary example of this is diabetes research in which most of the literature related to the intersection of these two examines the development of disability as a result of diabetes.35,36 Very little addresses it the other way around to ask: What are the experiences of people with disabilities who develop diabetes? We need both types of research. The studies that do address it from this perspective typically are from the Physical Medicine and Rehabilitation field, and address, for example, coronary artery disease in people with vision loss,37 cardiovascular and metabolic conditions in males with spinal cord injury,38 and metabolic syndrome in neuromuscular disease.39 We must extend disability epidemiology research and practice by including prevention of chronic conditions in disability epidemiology research in the same way we conduct it for other health disparate populations. Gathering epidemiologic research on disability descriptors has been in development for a number of years, but has not yet come to fruition. Only in adopting this practice can we appropriately and responsibly study chronic disease among those with disability and best meet the public health needs of people with disabilities. Conducting prevention of chronic
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conditions for people with disabilities requires the adoption of the concept we describe above as an underpinning of disability epidemiology research: understanding and viewing disability separate from health or health status, and recognizing people with disabilities as individuals who can benefit from interventions to reduce chronic conditions. Effective disability epidemiology research also requires that we include disability as a demographic variable in our surveillance practice and requires that we purposefully define ‘‘disability.’’ It also requires consistent and comprehensive use of disability identifiers across all national survey questionnaires. These concepts are supported by WHO and the World Bank, in the World Report on Disability,40 Healthy People 2010 and 2020,41,42 as well as many disability and health researchers.26,43e45 Some initial progress has been made in this area with the statebase Behavioral and Risk Factor Surveillance System (BRFSS) and the federal policy supporting the use of the American Community Survey (ACS) disability questions among federal surveys. However, even these measures have been shown to not accurately identify some disability subpopulations; thus, we need to continue to hone the measures used. Not doing so can drastically limit the value of our epidemiology research and practice, because the definitions used for disability directly shape the questions asked on surveys to identify people with disabilities. This is especially the case for some subpopulations which (e.g., individuals with intellectual and development disabilities) are not accurately identified, due to either a broad, generic disability identifier question or to wording that does not elicit an affirmative response from those it is intended to identify. Thus, if we do not purposefully and meaningfully define and identify disability subpopulations for surveys, the data gathered to provide epidemiologic and surveillance studies will not accurately reflect the populations of people with disabilities we need to better understand. In other words, if we do not ask the right questions, any information that we collect will be limited as a result. This affects the evidence base on which policies and practices are founded and, inasmuch, weakens their effectiveness in meeting the needs of people with disabilities. As recommended by the Institute of Medicine, federal agencies need to invest in public health research specifically designed to address the unique needs of people with disabilities.46 Not only have people with disabilities not been included in clinical research not directly related to their disability, they have been summarily excluded, making it impossible to address their needs. To fully understand the relationship between chronic disease and disability, we must explicitly involve members of this population in clinical research to explore what contributes to these disparities. Additionally, we must integrally involve people with disabilities in public health research more broadly, especially Community Based Participatory Research, to ensure the relevance of the research through
9 24,47,48
(see also the combination of knowledge and action the article in this issue by Traci and Seekins describing the importance of the role of community). Additionally, as addressed by Krahn and Campbell,28 we need to bring successful health promotion interventions for people with disabilities to scale. We also cannot solely focus research on disability that results from chronic conditions at the expense of prevention/self-management of chronic diseases for the large number of people who already experience disability and who have an increased risk of developing chronic disease. We have empirical evidence that (a) people with disabilities experience unacceptably high prevalences of chronic disease, and (b) people with disabilities experience chronic disease at greater prevalence from those without disability. As the public health research community moves forward with chronic disease research, we need to ensure that people with disabilities do not get lost as a population with health disparities. This requires us to clearly define disability as separate from chronic disease but at the same time acknowledge that (1) people with disabilities experience unacceptably high risk for and prevalence of chronic conditions and (2) disability can emerge from chronic conditions, as Drum discusses in the introduction to this issue. The conundrum lies in needing to demonstrate the disparities to convey the need to address them without perpetuating the idea that chronic conditions are equivalent with disability or that people with disabilities inherently experience chronic conditions. In addition, given that state agencies, community organizations and others typically align their policies and practices with the administrative tone set by federal agencies, it is imperative that federal agencies more fully develop research policies that purposefully and meaningfully adopt the view of people with disabilities as a health disparity population, They must assimilate this view throughout the culture of the agencies, including their communications, reports, program and philosophies, and they should continue to provide real support for disability research as vulnerable populations through funding they provide for programs for epidemiology research, chronic disease prevention and improved self-management skills for this population Some progress has begun in these areas. For example, the Agency for Healthcare Research and Quality (AHRQ) has made efforts to designate people with disabilities as a priority population,49 funding of disability and health programs in state public health departments by the Centers for Disease Control and Prevention,50 giving attention to ‘‘enabling’’ health data collection instruments and methods to include people with disabilities, and including disability objectives in the Healthy People agendas.41 Finally, eliminating the dated public health model in which disability is viewed only as an outcome to be prevented will have associated policy, practice and research implications related to cost. When the public health community focuses on understanding how to help people with disabilities prevent or manage chronic conditions, and
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developing research and practice applications for addressing the various determinants of health causing the disparities, this population can become a priority and public health can begin to minimize the disproportionate health risks and poor health this population currently experiences. As a result, investing in such services for prevention of chronic conditions for this population could effect major cost savings.
National support for such change As Drum and colleagues (2009) stated: ‘‘When disabilities are regarded as health outcomes, people who experience disabilities may be neglected by traditional public health interventions.’’45(p139) Several national policy initiatives have already begun to elevate and support this paradigm shift. In devising Healthy People 2010, the U.S. Department of Health and Human Services affirmed for the first time the health potential of people with disabilities by devoting one of 28 objective focus areas, or chapters, to this population. The goal for the disability chapter was to ‘‘promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population’’ (p.7). This forward-thinking policy initiative (continued with Healthy People 202031) confirmed that public health needed a standardized definition of disability and that it should go beyond preventing disabling conditions, to address a broad array of health promotion activities. The Centers for Disease Control and Prevention has responded to this need for health promotion activities for persons with disabilities by funding the development of programs that promote the idea that people with disabilities can be healthy, such as Living Well with a Disability.51 Similarly the Administration on Developmental Disabilities funded the Healthy Lifestyles for People with Disabilities programs.52 Both of these programs are evidence-based programs that teach individuals with disabilities how to live healthier lives. The example set by these programs helps to dispel the outdated notion that health and disability are mutually exclusive. In addition, they have incorporated epidemiologic investigations that measure disparities among people with disabilities, such as poorer prevalence of mammography screening among women with disabilities than those without a disability. Subsequently, the Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities (2005)4 states clearly that disability is not an illness, and that active health promotion is important for persons with disabilities to achieve optimum health. This document further emphasizes the importance of accessible health care and support services to promote independence for people with disabilities. Thus, it promotes an image of people with disabilities as healthy, productive citizens, and presents a policy basis for programming to achieve this goal.
This paradigm shift received continued support in the Affordable Care Act which, as proposed, will, in 2014, recommend that health care providers assess access to care and treatment for individuals with disabilities, disability cultural competency training for health care providers, and data collection on individuals, including by disability status, receiving health care to assess quality measures. Although this legislation recommends rather than mandates change, it adds momentum to existing efforts to distinguish disability and health outcomes, and demonstrates Federal support.43,53 As national and state funding agencies continue to adopt a culture of and policies and practices endorsing the view of people with disabilities as a minority health disparity population, public health research will advance and begin to reduce the health disparities experienced by people with disabilities.
Conclusion In 1995, Chamie argued that ‘‘disability, by definition, is not an illness and noted that lack of understanding that people with disabilities can be healthy and productive would have negative consequences.’’54(p323) Our public health research must continue to elevate and integrate the importance of this differentiation of health and chronic conditions from disability. More recently the Department of Health and Human Services has supported this concept as well.4,41,42 At the present time, in the US alone, millions of people experiencing disability face preventable consequences of chronic conditions because we have not consistently and systematically differentiated disability from chronic conditions,55 but instead assumed that people with disabilities are inherently unhealthy. Regardless of whether a person with a disability does or does not have a chronic disease, research to inform and support health promotion programs, public health initiatives and community environments is necessary to ensure that all people with disabilities are included with intention and not as an afterthought. U.S. citizens with disabilities have fought for and won many rights over the last 50 years. However, to fully enjoy the benefits of these rights, they must be supported, as nondisabled citizens are, to achieve the highest degree of health possible. Only when we have untangled the knot of disability, health and chronic conditions, will this potential be realized.
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46. Field MJ, Jette A, eds. The Future of Disability in America. Washington, D.C.: National Academies Press; 2007. 47. Newman S. Evidence-based Advocacy: using photovoice to identify barriers and facilitators to community participation after spinal cord injury. Rehabil Nurs. 2010;35(2):47e59. 48. Minkler M, Fadem P, Perry M, Blum K, Moore L, Rogers J. Delimmas in participatory action research: a case study from the disability community. Health Educ Behav. 2002;29:14e29. 49. Clancy CM, Andresen EM. Meeting the health care needs of persons with disabilities: a commentary. Milbank Q. 2002;80(2): 381e391. 50. Lollar DJ. Public health and disability: emerging opportunities. Public Health Rep. 2002;117(2):131e136.
51. Ravesloot CH, Seekins T, Cahill T, Lindgren S, Nary DE, White G. Health promotion for people with disabilities: development and evaluation of the Living Well with a Disability program. Health Educ Res. 2007;22(4):522e531. 52. Abdullah N, Horner-Johnson W, Drum C, et al. Healthy Lifestyles for people with disabilities. Calif J Health Promot. 2004;2(Special issue):42e54. 53. Shakespeare T. Still a health issue. Disabil Health J. 2012;5(3): 129e131. 54. Chamie M. What does morbidity have to do with disability? Disabil Rehabil. 1995;17(7):323e337. 55. Brault M. Americans With Disabilities: 2005, Current Population Reports. Washington, D.C.; 2008.
