Disability and Health Journal 7 (2014) 2e5 www.disabilityandhealthjnl.com
Commentary: Chronic Conditions and Disability
The dynamics of disability and chronic conditions Charles E. Drum, M.P.A., J.D., Ph.D. Institute on Disability, University of New Hampshire, Durham, NH, USA
Abstract The purpose of this paper is to provide a background to chronic conditions and disability and introduce manuscripts that were part of a recent forum examining this issue. The paper begins with an overview of definitions of disability and chronic conditions. It then presents several reasons why disentangling chronic conditions and disability is important. Finally, it briefly describes the forum manuscripts before making a call for understanding the dynamics of chronic condition and disability to promote the health of all. Ó 2014 Elsevier Inc. All rights reserved. Keywords: Disability; Chronic conditions; Chronic disease
Dorothy: Now which way do we go? Scarecrow: Pardon me, this way is a very nice way. Dorothy: Who said that? [Toto barks at scarecrow] Dorothy: Don’t be silly, Toto. Scarecrows don’t talk. Scarecrow: [points other way] It’s pleasant down that way, too. Dorothy: That’s funny. Wasn’t he pointing the other way? Scarecrow: [points both ways] Of course, some people do go both ways. dThe Wizard of Oz, 1939 On Sunday, October 28th, 2012, a forum entitled ‘‘The Dynamics of Disability and Chronic Conditions’’ was held under the sponsorship of the Disability Section of the American Public Health Association. The purpose of the annual Chair’s Forum is to explore emerging issues in disability
This work was supported by grant #CFDA 84.133A from the US Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR). The findings and conclusions in this paper are those of the author and do not necessarily represent the official position of NIDRR. The author has no conflict of interest. Corresponding author. Tel.: þ1 603 862 4320; fax: þ1 603 862 0555. E-mail address: [email protected] 1936-6574/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2013.10.001
and health and foster dialog without the time limits of conference research presentations. The 2012 Chair’s Forum included presentations on the state of the science in research and surveillance, definitional dilemmas, compatibility of child and adult perspectives, the importance of chronic conditions in organizing state public health programs, and a dialog on the policy implications of integrating disability and chronic condition perspectives. Five experts in disability and health issues participated in the forum, as well as a public health expert in chronic conditions. In a series of conference calls developing the forum topic and discussing potential content, an invited group of researchers and policymakers recognized that there are a number of important connections between chronic conditions and disability and health. As described below, both fields include categorical (or diagnostic) as well as functional definitions of disability. Moreover, persons with a congenital or acquired disability may develop a chronic condition, and a chronic condition may result in a person experiencing a disability such as a mobility limitation. The connections between functional limitations and chronic conditions led to the question, ‘‘How many people with disabilities develop chronic conditions and how many people with chronic conditions develop disabilities?’’ Subsequently, the group wondered, ‘‘Are people with pre-existing disabilities included in chronic condition prevention programs?’’ Finally, we discussed the role of policymakers in ensuring that people with pre-existing disabilities who develop chronic conditions are recognized in broader public health and health promotion efforts. The purpose of this paper is to provide a larger background to chronic conditions and disability and introduce the manuscripts emerging from the forum presentations.
C.E. Drum / Disability and Health Journal 7 (2014) 2e5
It begins with an overview of definitions of disability and chronic conditions. It then presents several reasons why disentangling chronic conditions and disability is important. Finally, the forum manuscripts are briefly described.
Discussion Definitions of disability For much of the last 25 years, disability has been defined using three primary approaches: diagnostic or categorical, functional, or social approaches. A categorical or diagnostic approach to disability focuses on the individual’s underlying disease, trauma, or health impairment.1e6 For example, a spinal cord injury is a disability under this approach. A functional approach to disability emphasizes the inability to perform important life activities such as moving, living independently, or working, due to an underlying impairment or condition.3,6e8 For example, a person with a spinal cord injury who is unable to live independently meets a functional definition of disability. Social approaches to disability typically focus on the barriers a person (with an underlying impairment or condition) experience when interacting with the environment.3,9 For example, a woman with a spinal cord injury would experience a disability under the social model if she is unable to access an apartment due to an inaccessible entrance. These approaches to disability are sometimes combined. For example, the Americans with Disabilities Act (ADA) defines a person with a disability using a functional approach (‘‘an individual who has a physical or mental impairment that substantially limits at least one ‘major life activity’’’), a categorical approach (‘‘has a record of such an impairment’’), and a social approach (‘‘is regarded as having such an impairment’’). The sociologist Saad Nagi developed a disabling process model consisting of active pathology, impairment, functional limitation, and disability, with a dimension later added by the National Center for Medical Rehabilitation Research (NCMRR) of ‘‘societal limitations.’’10 The World Health Organization (WHO) developed the International Classification of Functioning, Disability and Health11 which defined disability as ‘‘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.’’ What these combined approaches share is the effect of an individual interacting with some larger phenomena whether it is attitudinal or environmental. Definitions of chronic conditions The CDC defines chronic disease as ‘‘noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely.’’12 Examples provided by the CDC of chronic disease include heart disease, cancer, stroke, diabetes, and arthritis.12 ‘‘Chronic condition’’
3
is a term first proposed by the WHO to replace the terms ‘‘chronic disease’’ or ‘‘chronic illness.’’13 The WHO report said that this category included certain persistent communicable diseases (e.g., HIV/AIDS), noncommunicable diseases (e.g., cardiovascular disease, cancer, and diabetes), certain mental disorders (e.g., depression and schizophrenia), and ongoing structural impairments (e.g., amputations, blindness, and joint disorders).13 Nearly a decade later, the US Department of Health and Human Services released a multiple chronic conditions strategic framework that defined chronic conditions as physical medical conditions (i.e., conditions ‘‘that last a year or more and require ongoing medical attention and/or limit activities of daily living’’), and ‘‘problems such as substance use and addiction disorders, mental illnesses, dementia and other cognitive impairment disorders, and developmental disabilities.’’ Other examples of chronic conditions in the strategic framework included arthritis, asthma, chronic respiratory conditions, diabetes, heart disease, human immunodeficiency virus infection, and hypertension.14 Taken as a whole, the definitions of chronic conditions contained in these important statements of policy include numerous examples of categorical and functional approaches to defining disability.
Why disentangle chronic conditions and disability? In the early 1990s, the late Irving Zola expressed concern about disability definitions in statistics making ‘‘fixed and dichotomous something better conceptualized as fluid and continuous.’’15 A number of other researchers have pointed out the difficulty in defining disability and conducting disability surveillance.16,17 Disability does not have a uniform definition, yet we in the field of public health are driven to count it for research, programmatic, and policy purposes. As disability and health researchers, we often use a mix of approaches to disability and the definitions can vary from researcher to researcher. Currently, the most frequently used definition of disability in public health is from the Behavioral Risk Factor Surveillance System or BRFSS. The BRFSS is the nation’s premier public health survey for state-level data, and was established by the Centers for Disease Control and Prevention (CDC). The BRFSS survey is done every year by each state or territory health department and the results can be aggregated to create a picture of the country’s health. For over a decade, the BRFSS survey has considered disability as ‘‘Yes’’ answer to one or both of the following questions: 1) ‘‘Are you limited in any way in any activities because of physical, mental, or emotional problems?’’ or 2) ‘‘Do you now have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone?’’ The BRFSS has now been changed to include multiple categorical and functional definitions of disability contained in the American Community Survey or ACS. The ACS is an
4
C.E. Drum / Disability and Health Journal 7 (2014) 2e5
ongoing statistical survey conducted by the United States Census Bureau. Some criticism had emerged regarding the prior BRFSS functional definitions of disability as being too broad. In the same way that racial categories are not homogenous, neither are disabilities. For example, there are many different cultures and origins among Hispanics, American Indians and Alaska Natives, Asians, and Blacks, and more complex phenomena such as the differential impact of being light skinned versus dark skinned. In this sense, functional definitions of disability in the BRFSS serve the same purpose as race/ ethnicity demographic variables: it creates a conceptual baseline for assessing the social experience of a more or less shared phenomenon.18 What functional and social approaches to defining disability share is the notion that a person is not the underlying impairment or disability: a person is a person. The emphasis on ‘‘people first language’’ (i.e., using the phrase ‘‘person with a disability’’) that is widely but not universally accepted as preferred nomenclature represents the personalization of the public health population aggregation. It is a reminder that persons interact with one another, with environments, and with societal expectations about role, and that the lived life is contextual. This is actually one of the underlying strengths of the contemporary disability and health literature (even if it is not stated expressly) when we start the design section of our manuscripts with a definition of disability. Stating that disability was defined using a functional or social approach implicitly recognizes the multidimensional complexity of the personeenvironment interaction. ‘‘What we’ve got is failure to communicate.’’ e The Captain, Cool Hand Luke, 1967 For a number of years, disability and health researchers have struggled to balance population based data that demonstrated overall poorer health among persons with disabilities with deconstructing the traditional perspective that disability is the same as poor health. The contemporary disability and health view is that social determinants of health are a major source of population health differences. Heart disease, stroke, cancer, diabetes, and other chronic conditions experienced in higher proportions by persons with disabilities are not necessarily caused by an underlying disability.19,20 Rather, social determinants such as lower income, differential treatment practices, and physical barriers may contribute to the chronic condition disparities experienced by the population of persons with disabilities. In the chronic condition literature, the chronic condition is often considered an indicator or marker for disability. Arthritis is a disability because arthritis causes functional limitations.21 Yet, it is often difficult to determine if a disability precedes or proceeds from a chronic condition.17 This places us in a conundrum of needing to disentangle disability from chronic disease in trying to determine underlying etiologies and how to improve overall health. A
disability may be linked to other factors, and not directly caused by the chronic condition. For example, a vision functional limitation among people with diabetes may be due to aging or treatment effects.22 Alternatively, a mobility functional limitation may be linked directly to limb loss as a result of the diabetes. The implications of having functional limitations included as a chronic condition without a better understanding of whether it came first or came later may mean we miss out on health promotion opportunities for persons with pre-existing disabilities or functional limitations. What this means is that public health needs to consider the health promotion needs of three different groups: 1) individuals with disabilities without chronic conditions; 2) individuals with disabilities who also have chronic conditions; and 3) individuals with disabilities who developed a disability as a result of chronic conditions. The forum papers The three forum papers bring a focus to understanding disability and chronic conditions and extend the dialog on how to advance disability in a public health and chronic condition context. Reichard, Nary, and Simpson (this issue, p. 6) present current research on chronic conditions among people with disabilities and argue for a paradigm shift to effectively address the unique public health needs of people with disabilities. Krahn, Reyes, and Fox (this issue, p. 13) propose a model to clarify the relationship of disability with chronic disease to help facilitate a paradigm shift. Traci and Seekins (this issue, p. 19) describe state-based strategies to improve the health of persons at risk for or living with chronic conditions associated with disability. The set of papers provide a larger research, conceptual, and applied framework for addressing chronic conditions and disability.
Conclusion Thirty years ago, the godfathers of the United States version of the social model of disability, Harlan Hahn and Irving Zola, argued that disability is not an injury to be prevented or a specific impairment, but the result of a lack of fit between underlying impairments and social, attitudinal, architectural, medical, economic, and political environment.23,24 Thus, disability is not static because it is contextual and adaptive. Chronic conditions may or may not be part of the lived experience of disability, but from a public health perspective, understanding the dynamics of chronic condition and disability is crucial in promoting the health of all. References 1. Ustun TB, Rehm J, Chatterji S, et al. Multiple-informant ranking of the disabling effects of different health conditions in 14 countries. Lancet. 1999;354(9173):111e115.
C.E. Drum / Disability and Health Journal 7 (2014) 2e5 2. Ustun TB, Saxena S, Rehm J, Bickenbach J. Are disability weights universal? WHO/NIH Joint Project CAR Study Group. Lancet. 1999;354(9186):1306 [Epub 1999/10/16]. 3. Drum CE, Peterson JJ, Culley C, et al. Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities. Am J Health Promot. 2009;24(2): 93e101. 4. Johnston M. Models of disability. Psychologist. 1996;9(5):205e210. 5. Llewellyn AH, Hogan K. The use and abuse of models of disability. Disabil Soc. 2000;15(1):157e165. 6. Rioux MH. When Myths Masquerade as Science: Disability Research From an Equality-rights Perspective. In: Burton L, Oliver M, eds. Leeds, England: The Disability Press; 1999. 7. Bickenbach JE, Chatterji S, Badley EM, Ustun TB. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Soc Sci Med. 1999;48(9):1173e1187 [Epub 1999/04/29]. 8. 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. 9. Humphreys K, Weisner C. Use of exclusion criteria in selecting research subjects and its effect on the generalizability of alcohol treatment outcome studies. Am J Psychiatry. 2000;157(4):588e594 [Epub 2000/03/30]. 10. Altman BM. Disability definitions, models, classification schemes, and applications. Handbook Disabil Stud; 2001:97e122. 11. World Health Organization. International Classification of Functioning Disability and Health (ICF); 2001. 12. National Center for Chronic Disease Prevention and Health Promotion. The Power of Prevention: Chronic Disease. the Public Health Challenge of the 21st Century; 2009. 13. World Health Organization. Reducing Risks, Promoting Healthy Life. Geneva: Switzerland; 2002.
5
14. U.S. Department of Health and Human Services. Multiple Chronic Conditions - A Strategic Framework: Optimum Health and Quality of Life for Individuals With Multiple Chronic Conditions. Washington, DC; December 2010. USDHHS 2010.pdf. 15. Zola IK. Self, identity and the naming question: reflections on the language of disability. Soc Sci Med. 1993;36(2):167e173 [Epub 1993/01/01]. 16. Cannell MB, Bouldin ED, Akhtar WZ, Andresen EM. Severity of disability may lead to increased risk of cognitive decline. Am J Epidemiol. 2011;173:S112. 17. Yamaki K, Rutkowski-Kmitta V, Fujiura GT. Violence as a Cause of Disability: A National Longitudinal Analysis. Atlanta, GA: American Public Health Association Meeting; October; 2001. 18. Drum C, McClain M, Horner-Johnson W, Taitano G. Health Disparities Chart Book on Disability and Racial and Ethnic Status in the United States. Durham, NH: Institute on Disability (US); April 2011. Health Disparities Chart Book_080411.pdf. 19. Reichard AH, 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. 20. Reichard A, Stolzle H. Diabetes among adults with cognitive limitations compared to individuals with no cognitive disabilities. Disabil Health J. 2011;49(3):141e154. 21. Murphy K, Cooney A, Shea EO, Casey D. Determinants of quality of life for older people living with a disability in the community. J Adv Nurs. 2009;65(3):606e615. 22. Speers MA, Turk D. Diabetes self-care: knowledge, beliefs, motivation, and action. Patient Couns Health Educ. 1980;3:144e149. 23. Hahn H. Toward a politics of disability: definitions, disciplines, and policies. Soc Sci J. 1985;22(4):87e105. 24. Zola IK. Social and cultural disincentives to independent living. Arch Phys Med Rehabil. 1982;63(8):394e397.
Commentary: Chronic Conditions and Disability
The dynamics of disability and chronic conditions Charles E. Drum, M.P.A., J.D., Ph.D. Institute on Disability, University of New Hampshire, Durham, NH, USA
Abstract The purpose of this paper is to provide a background to chronic conditions and disability and introduce manuscripts that were part of a recent forum examining this issue. The paper begins with an overview of definitions of disability and chronic conditions. It then presents several reasons why disentangling chronic conditions and disability is important. Finally, it briefly describes the forum manuscripts before making a call for understanding the dynamics of chronic condition and disability to promote the health of all. Ó 2014 Elsevier Inc. All rights reserved. Keywords: Disability; Chronic conditions; Chronic disease
Dorothy: Now which way do we go? Scarecrow: Pardon me, this way is a very nice way. Dorothy: Who said that? [Toto barks at scarecrow] Dorothy: Don’t be silly, Toto. Scarecrows don’t talk. Scarecrow: [points other way] It’s pleasant down that way, too. Dorothy: That’s funny. Wasn’t he pointing the other way? Scarecrow: [points both ways] Of course, some people do go both ways. dThe Wizard of Oz, 1939 On Sunday, October 28th, 2012, a forum entitled ‘‘The Dynamics of Disability and Chronic Conditions’’ was held under the sponsorship of the Disability Section of the American Public Health Association. The purpose of the annual Chair’s Forum is to explore emerging issues in disability
This work was supported by grant #CFDA 84.133A from the US Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR). The findings and conclusions in this paper are those of the author and do not necessarily represent the official position of NIDRR. The author has no conflict of interest. Corresponding author. Tel.: þ1 603 862 4320; fax: þ1 603 862 0555. E-mail address: [email protected] 1936-6574/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2013.10.001
and health and foster dialog without the time limits of conference research presentations. The 2012 Chair’s Forum included presentations on the state of the science in research and surveillance, definitional dilemmas, compatibility of child and adult perspectives, the importance of chronic conditions in organizing state public health programs, and a dialog on the policy implications of integrating disability and chronic condition perspectives. Five experts in disability and health issues participated in the forum, as well as a public health expert in chronic conditions. In a series of conference calls developing the forum topic and discussing potential content, an invited group of researchers and policymakers recognized that there are a number of important connections between chronic conditions and disability and health. As described below, both fields include categorical (or diagnostic) as well as functional definitions of disability. Moreover, persons with a congenital or acquired disability may develop a chronic condition, and a chronic condition may result in a person experiencing a disability such as a mobility limitation. The connections between functional limitations and chronic conditions led to the question, ‘‘How many people with disabilities develop chronic conditions and how many people with chronic conditions develop disabilities?’’ Subsequently, the group wondered, ‘‘Are people with pre-existing disabilities included in chronic condition prevention programs?’’ Finally, we discussed the role of policymakers in ensuring that people with pre-existing disabilities who develop chronic conditions are recognized in broader public health and health promotion efforts. The purpose of this paper is to provide a larger background to chronic conditions and disability and introduce the manuscripts emerging from the forum presentations.
C.E. Drum / Disability and Health Journal 7 (2014) 2e5
It begins with an overview of definitions of disability and chronic conditions. It then presents several reasons why disentangling chronic conditions and disability is important. Finally, the forum manuscripts are briefly described.
Discussion Definitions of disability For much of the last 25 years, disability has been defined using three primary approaches: diagnostic or categorical, functional, or social approaches. A categorical or diagnostic approach to disability focuses on the individual’s underlying disease, trauma, or health impairment.1e6 For example, a spinal cord injury is a disability under this approach. A functional approach to disability emphasizes the inability to perform important life activities such as moving, living independently, or working, due to an underlying impairment or condition.3,6e8 For example, a person with a spinal cord injury who is unable to live independently meets a functional definition of disability. Social approaches to disability typically focus on the barriers a person (with an underlying impairment or condition) experience when interacting with the environment.3,9 For example, a woman with a spinal cord injury would experience a disability under the social model if she is unable to access an apartment due to an inaccessible entrance. These approaches to disability are sometimes combined. For example, the Americans with Disabilities Act (ADA) defines a person with a disability using a functional approach (‘‘an individual who has a physical or mental impairment that substantially limits at least one ‘major life activity’’’), a categorical approach (‘‘has a record of such an impairment’’), and a social approach (‘‘is regarded as having such an impairment’’). The sociologist Saad Nagi developed a disabling process model consisting of active pathology, impairment, functional limitation, and disability, with a dimension later added by the National Center for Medical Rehabilitation Research (NCMRR) of ‘‘societal limitations.’’10 The World Health Organization (WHO) developed the International Classification of Functioning, Disability and Health11 which defined disability as ‘‘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.’’ What these combined approaches share is the effect of an individual interacting with some larger phenomena whether it is attitudinal or environmental. Definitions of chronic conditions The CDC defines chronic disease as ‘‘noncommunicable illnesses that are prolonged in duration, do not resolve spontaneously, and are rarely cured completely.’’12 Examples provided by the CDC of chronic disease include heart disease, cancer, stroke, diabetes, and arthritis.12 ‘‘Chronic condition’’
3
is a term first proposed by the WHO to replace the terms ‘‘chronic disease’’ or ‘‘chronic illness.’’13 The WHO report said that this category included certain persistent communicable diseases (e.g., HIV/AIDS), noncommunicable diseases (e.g., cardiovascular disease, cancer, and diabetes), certain mental disorders (e.g., depression and schizophrenia), and ongoing structural impairments (e.g., amputations, blindness, and joint disorders).13 Nearly a decade later, the US Department of Health and Human Services released a multiple chronic conditions strategic framework that defined chronic conditions as physical medical conditions (i.e., conditions ‘‘that last a year or more and require ongoing medical attention and/or limit activities of daily living’’), and ‘‘problems such as substance use and addiction disorders, mental illnesses, dementia and other cognitive impairment disorders, and developmental disabilities.’’ Other examples of chronic conditions in the strategic framework included arthritis, asthma, chronic respiratory conditions, diabetes, heart disease, human immunodeficiency virus infection, and hypertension.14 Taken as a whole, the definitions of chronic conditions contained in these important statements of policy include numerous examples of categorical and functional approaches to defining disability.
Why disentangle chronic conditions and disability? In the early 1990s, the late Irving Zola expressed concern about disability definitions in statistics making ‘‘fixed and dichotomous something better conceptualized as fluid and continuous.’’15 A number of other researchers have pointed out the difficulty in defining disability and conducting disability surveillance.16,17 Disability does not have a uniform definition, yet we in the field of public health are driven to count it for research, programmatic, and policy purposes. As disability and health researchers, we often use a mix of approaches to disability and the definitions can vary from researcher to researcher. Currently, the most frequently used definition of disability in public health is from the Behavioral Risk Factor Surveillance System or BRFSS. The BRFSS is the nation’s premier public health survey for state-level data, and was established by the Centers for Disease Control and Prevention (CDC). The BRFSS survey is done every year by each state or territory health department and the results can be aggregated to create a picture of the country’s health. For over a decade, the BRFSS survey has considered disability as ‘‘Yes’’ answer to one or both of the following questions: 1) ‘‘Are you limited in any way in any activities because of physical, mental, or emotional problems?’’ or 2) ‘‘Do you now have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone?’’ The BRFSS has now been changed to include multiple categorical and functional definitions of disability contained in the American Community Survey or ACS. The ACS is an
4
C.E. Drum / Disability and Health Journal 7 (2014) 2e5
ongoing statistical survey conducted by the United States Census Bureau. Some criticism had emerged regarding the prior BRFSS functional definitions of disability as being too broad. In the same way that racial categories are not homogenous, neither are disabilities. For example, there are many different cultures and origins among Hispanics, American Indians and Alaska Natives, Asians, and Blacks, and more complex phenomena such as the differential impact of being light skinned versus dark skinned. In this sense, functional definitions of disability in the BRFSS serve the same purpose as race/ ethnicity demographic variables: it creates a conceptual baseline for assessing the social experience of a more or less shared phenomenon.18 What functional and social approaches to defining disability share is the notion that a person is not the underlying impairment or disability: a person is a person. The emphasis on ‘‘people first language’’ (i.e., using the phrase ‘‘person with a disability’’) that is widely but not universally accepted as preferred nomenclature represents the personalization of the public health population aggregation. It is a reminder that persons interact with one another, with environments, and with societal expectations about role, and that the lived life is contextual. This is actually one of the underlying strengths of the contemporary disability and health literature (even if it is not stated expressly) when we start the design section of our manuscripts with a definition of disability. Stating that disability was defined using a functional or social approach implicitly recognizes the multidimensional complexity of the personeenvironment interaction. ‘‘What we’ve got is failure to communicate.’’ e The Captain, Cool Hand Luke, 1967 For a number of years, disability and health researchers have struggled to balance population based data that demonstrated overall poorer health among persons with disabilities with deconstructing the traditional perspective that disability is the same as poor health. The contemporary disability and health view is that social determinants of health are a major source of population health differences. Heart disease, stroke, cancer, diabetes, and other chronic conditions experienced in higher proportions by persons with disabilities are not necessarily caused by an underlying disability.19,20 Rather, social determinants such as lower income, differential treatment practices, and physical barriers may contribute to the chronic condition disparities experienced by the population of persons with disabilities. In the chronic condition literature, the chronic condition is often considered an indicator or marker for disability. Arthritis is a disability because arthritis causes functional limitations.21 Yet, it is often difficult to determine if a disability precedes or proceeds from a chronic condition.17 This places us in a conundrum of needing to disentangle disability from chronic disease in trying to determine underlying etiologies and how to improve overall health. A
disability may be linked to other factors, and not directly caused by the chronic condition. For example, a vision functional limitation among people with diabetes may be due to aging or treatment effects.22 Alternatively, a mobility functional limitation may be linked directly to limb loss as a result of the diabetes. The implications of having functional limitations included as a chronic condition without a better understanding of whether it came first or came later may mean we miss out on health promotion opportunities for persons with pre-existing disabilities or functional limitations. What this means is that public health needs to consider the health promotion needs of three different groups: 1) individuals with disabilities without chronic conditions; 2) individuals with disabilities who also have chronic conditions; and 3) individuals with disabilities who developed a disability as a result of chronic conditions. The forum papers The three forum papers bring a focus to understanding disability and chronic conditions and extend the dialog on how to advance disability in a public health and chronic condition context. Reichard, Nary, and Simpson (this issue, p. 6) present current research on chronic conditions among people with disabilities and argue for a paradigm shift to effectively address the unique public health needs of people with disabilities. Krahn, Reyes, and Fox (this issue, p. 13) propose a model to clarify the relationship of disability with chronic disease to help facilitate a paradigm shift. Traci and Seekins (this issue, p. 19) describe state-based strategies to improve the health of persons at risk for or living with chronic conditions associated with disability. The set of papers provide a larger research, conceptual, and applied framework for addressing chronic conditions and disability.
Conclusion Thirty years ago, the godfathers of the United States version of the social model of disability, Harlan Hahn and Irving Zola, argued that disability is not an injury to be prevented or a specific impairment, but the result of a lack of fit between underlying impairments and social, attitudinal, architectural, medical, economic, and political environment.23,24 Thus, disability is not static because it is contextual and adaptive. Chronic conditions may or may not be part of the lived experience of disability, but from a public health perspective, understanding the dynamics of chronic condition and disability is crucial in promoting the health of all. References 1. Ustun TB, Rehm J, Chatterji S, et al. Multiple-informant ranking of the disabling effects of different health conditions in 14 countries. Lancet. 1999;354(9173):111e115.
C.E. Drum / Disability and Health Journal 7 (2014) 2e5 2. Ustun TB, Saxena S, Rehm J, Bickenbach J. Are disability weights universal? WHO/NIH Joint Project CAR Study Group. Lancet. 1999;354(9186):1306 [Epub 1999/10/16]. 3. Drum CE, Peterson JJ, Culley C, et al. Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities. Am J Health Promot. 2009;24(2): 93e101. 4. Johnston M. Models of disability. Psychologist. 1996;9(5):205e210. 5. Llewellyn AH, Hogan K. The use and abuse of models of disability. Disabil Soc. 2000;15(1):157e165. 6. Rioux MH. When Myths Masquerade as Science: Disability Research From an Equality-rights Perspective. In: Burton L, Oliver M, eds. Leeds, England: The Disability Press; 1999. 7. Bickenbach JE, Chatterji S, Badley EM, Ustun TB. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Soc Sci Med. 1999;48(9):1173e1187 [Epub 1999/04/29]. 8. 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. 9. Humphreys K, Weisner C. Use of exclusion criteria in selecting research subjects and its effect on the generalizability of alcohol treatment outcome studies. Am J Psychiatry. 2000;157(4):588e594 [Epub 2000/03/30]. 10. Altman BM. Disability definitions, models, classification schemes, and applications. Handbook Disabil Stud; 2001:97e122. 11. World Health Organization. International Classification of Functioning Disability and Health (ICF); 2001. 12. National Center for Chronic Disease Prevention and Health Promotion. The Power of Prevention: Chronic Disease. the Public Health Challenge of the 21st Century; 2009. 13. World Health Organization. Reducing Risks, Promoting Healthy Life. Geneva: Switzerland; 2002.
5
14. U.S. Department of Health and Human Services. Multiple Chronic Conditions - A Strategic Framework: Optimum Health and Quality of Life for Individuals With Multiple Chronic Conditions. Washington, DC; December 2010. USDHHS 2010.pdf. 15. Zola IK. Self, identity and the naming question: reflections on the language of disability. Soc Sci Med. 1993;36(2):167e173 [Epub 1993/01/01]. 16. Cannell MB, Bouldin ED, Akhtar WZ, Andresen EM. Severity of disability may lead to increased risk of cognitive decline. Am J Epidemiol. 2011;173:S112. 17. Yamaki K, Rutkowski-Kmitta V, Fujiura GT. Violence as a Cause of Disability: A National Longitudinal Analysis. Atlanta, GA: American Public Health Association Meeting; October; 2001. 18. Drum C, McClain M, Horner-Johnson W, Taitano G. Health Disparities Chart Book on Disability and Racial and Ethnic Status in the United States. Durham, NH: Institute on Disability (US); April 2011. Health Disparities Chart Book_080411.pdf. 19. Reichard AH, 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. 20. Reichard A, Stolzle H. Diabetes among adults with cognitive limitations compared to individuals with no cognitive disabilities. Disabil Health J. 2011;49(3):141e154. 21. Murphy K, Cooney A, Shea EO, Casey D. Determinants of quality of life for older people living with a disability in the community. J Adv Nurs. 2009;65(3):606e615. 22. Speers MA, Turk D. Diabetes self-care: knowledge, beliefs, motivation, and action. Patient Couns Health Educ. 1980;3:144e149. 23. Hahn H. Toward a politics of disability: definitions, disciplines, and policies. Soc Sci J. 1985;22(4):87e105. 24. Zola IK. Social and cultural disincentives to independent living. Arch Phys Med Rehabil. 1982;63(8):394e397.
