Disability and Health Journal 8 (2015) 1e2 www.disabilityandhealthjnl.com
Editorial
How can research lead to change in practice? In the field of disability and health we carry out research in order to build a knowledge base that we hope will inform policy and practice. Many articles published in Disability and Health Journal note in their discussions that more specific information, a larger number of subjects, well-defined cohorts or subjects, or additional interventional studies are needed in order to change practice or promote policy changes. Therefore, we have to ask ourselves if there are ways that our research community can fine-tune research designs and conduct analyses that will better facilitate adaption into the practices and policies of the field. A possible area of focus is in the analyses of disparities in the receipt of preventive services for individuals with intellectual and developmental disability. What should be the unit of analysis when receipt of preventive services is studied? The most immediate answer is ‘‘the individual’’ but is that the right answer in this case? The Americans with Disabilities Act and the International Classification of Functioning, Disability, and Health as well as scores of instruments, books, and articles suggest that the process of disablement is dynamic, and the environment needs to be the place where we look for solutions. A number of researchers have embraced this notion and report on features of homes, schools, health care environments, and neighborhoods.1,2 Many of these reports identify barriers and deficits, including inaccessible parking near buildings, entries without ramps or incorrectly constructed ramps, inadequate signage, narrow hallways and bathrooms, etc.3e6 On the positive side there are studies that focus on accessibility and universal design and how this contributes to the receipt of services,7 however these are fewer in number. So, are there features of the environment that should be incorporated into studies of receipt of preventive services among people with intellectual and developmental disability or other cognitive impairment? In general, the literature on health disparities sometimes uses neighborhood characteristics to predict or explain individual behavior.8,9 Thus, we have learned that two highly comparable people who have the same gender, age, marital status, race, income, and education, may have different access to health services if one person lives in a neighborhood were the poverty level is very low and the other lives in a neighborhood with a high poverty level.10 In order to improve access, findings like the neighborhood effect tell us that we need for public policy to make decisions regarding access to care. For instance, preferentially 1936-6574/$ - see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2014.11.001
placing federally qualified primary care sites in high poverty neighborhoods may improve access. This, in fact, has happened, and has shown to be effective.11 Improving access has improved the receipt of preventive services in the general population. If we refine our group of study to individuals with intellectual and developmental disability, then the residential unit of measure should be type of residence, in addition to type of neighborhood. If we know that living in a poor neighborhood reduces the likelihood of receipt of preventive services, and if we find this to be the case for individuals with intellectual and developmental disability, then we need to advocate for better transportation options to health care sites or be sure that federally qualified primary care sites in impoverished neighborhoods are welcoming and accessible for people with these disabilities. In the literature on intellectual and developmental disability, some researchers have included a person-level variable that captures the type of residential arrangement where the person lives.12 Is the adult with intellectual or developmental disability residing independently, with their family, in a group home, supervised apartment building, or large residential facility? Few studies look at both the neighborhood and the residential arrangement simultaneously, though some consider one or other these variables.13e15 If researchers include both neighborhood and residential arrangement variables in their models this could help us understand what needs to be addressed. The implications of educating a disability service system that provides group homes and supervised apartment living, about the guidelines for the receipt of preventive services in accordance with the US Preventive Services Task Force recommendations are very different from the implications of identifying a neighborhood where preventive services accessibility is low.16 As Editors of Disability and Health Journal, we believe the issue of residential type could be used in a more direct way, so our research findings can more quickly be translated into practice. It is likely that research about the factors predicting the receipt of preventive services for individuals with intellectual and developmental disability would have a better chance of being translated into practice if the analyses included both residential type and neighborhood characteristics. In addition, instead of simply using individuals as the unit of analysis, we believe analyses that study residence, the primary independent variable, could be easier to
2
Editorial / Disability and Health Journal 8 (2015) 1e2
interpret to policy makers. If we identify one residential type as more likely to receive preventive services compared to another residential type we would know where to put our resources for corrective action. If we don’t know this we will continue to identify group disparities without really having a handle on how we need to change the system. Suzanne McDermott, Ph.D., Margaret Turk, M.D., Co-editors DHJO References 1. Crews DE, Zavotka S. Aging, disability, and frailty: implications for universal design. J Physiol Anthropol. 2006; Jan;25(1):113e118. 2. Demirkan H, Olgunt€ urk N. A priority-based design for all approach to guide home designers for independent living. Archit Sci Rev. 2014; 57(2):90e104. 3. Hammel J, Jones R, Smith J, Sanford J, Bodine C, Johnson M. Environmental barriers and supports to the health, function, and participation of people with developmental and intellectual disabilities: report from the State of the Science in Aging with Developmental Disabilities Conference. Disabil Health J. 2008; Jul;1(3):143e149. 4. Anaby D, Hand C, Bradley L, et al. The effect of the environment on participation of children and youth with disabilities: a scoping review. Disabil Rehabil. 2013; Sep;35(19):1589e1598. 5. Welage N, Liu KP. Wheelchair accessibility of public buildings: a review of the literature. Disabil Rehabil Assist Technol. 2011;6(1):1e9. 6. Mulligan HF, Hale LA, Whitehead L, Baxter GD. Barriers to physical activity for people with long-term neurological conditions: a review study. Adapt Phys Activ Q. 2012; Jul;29(3):243e265.
7. Nicolaidis C, Kripke CC, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am. 2014; Sep;98(5):1169e1191. 8. Grintsova O, Maier W, Mielck A. Inequalities in health care among patients with type 2 diabetes by individual socio-economic status (SES) and regional deprivation: a systematic literature review. Int J Equity Health. 2014; Jun 2;13:43. 9. Vyncke V, De Clercq B, Stevens V, et al. Does neighbourhood social capital aid in levelling the social gradient in the health and well-being of children and adolescents? A literature review. BMC Public Health. 2013; Jan 23;13:65. 10. Gibson M, Petticrew M, Bambra C, Sowden AJ, Wright KE, Whitehead M. Housing and health inequalities: a synthesis of systematic reviews of interventions aimed at different pathways linking housing and health. Health Place. 2011; Jan;17(1):175e184. 11. Katz AB, Felland LE, Hill I, Stark LB. A long and winding road: federally qualified health centers, community variation and prospects under reform. Res Brief 2011; Nov;(21):1e9. 12. Bershadsky J, Taub S, Engler J, et al. Place of residence and preventive health care for intellectual and developmental disabilities services recipients in 20 states. Public Health Rep. 2012; Sep-Oct;127(5): 475e485. 13. Mobley LR, Kuo TM, Clayton LJ, Evans WD. Mammography facilities are accessible, so why is utilization so low? Cancer Causes Control. 2009; Aug;20(6):1017e1028. 14. Mann J, Zhou H, McDermott S, Poston MB. Healthy behavior change of adults with mental retardation: attendance in a health promotion program. Am J Ment Retard. 2006; Jan;111(1):62e73. 15. McDermott S, Martin M, Butkus S. What individual, provider, and community characteristics predict employment of individuals with mental retardation? Am J Ment Retard. 1999; Jul;104(4):346e355. 16. US Preventive Services Task Force. Links to public recommendations may be accessed here. http://www.uspreventiveservicestaskforce.org/ uspstopics.htm.
Editorial
How can research lead to change in practice? In the field of disability and health we carry out research in order to build a knowledge base that we hope will inform policy and practice. Many articles published in Disability and Health Journal note in their discussions that more specific information, a larger number of subjects, well-defined cohorts or subjects, or additional interventional studies are needed in order to change practice or promote policy changes. Therefore, we have to ask ourselves if there are ways that our research community can fine-tune research designs and conduct analyses that will better facilitate adaption into the practices and policies of the field. A possible area of focus is in the analyses of disparities in the receipt of preventive services for individuals with intellectual and developmental disability. What should be the unit of analysis when receipt of preventive services is studied? The most immediate answer is ‘‘the individual’’ but is that the right answer in this case? The Americans with Disabilities Act and the International Classification of Functioning, Disability, and Health as well as scores of instruments, books, and articles suggest that the process of disablement is dynamic, and the environment needs to be the place where we look for solutions. A number of researchers have embraced this notion and report on features of homes, schools, health care environments, and neighborhoods.1,2 Many of these reports identify barriers and deficits, including inaccessible parking near buildings, entries without ramps or incorrectly constructed ramps, inadequate signage, narrow hallways and bathrooms, etc.3e6 On the positive side there are studies that focus on accessibility and universal design and how this contributes to the receipt of services,7 however these are fewer in number. So, are there features of the environment that should be incorporated into studies of receipt of preventive services among people with intellectual and developmental disability or other cognitive impairment? In general, the literature on health disparities sometimes uses neighborhood characteristics to predict or explain individual behavior.8,9 Thus, we have learned that two highly comparable people who have the same gender, age, marital status, race, income, and education, may have different access to health services if one person lives in a neighborhood were the poverty level is very low and the other lives in a neighborhood with a high poverty level.10 In order to improve access, findings like the neighborhood effect tell us that we need for public policy to make decisions regarding access to care. For instance, preferentially 1936-6574/$ - see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2014.11.001
placing federally qualified primary care sites in high poverty neighborhoods may improve access. This, in fact, has happened, and has shown to be effective.11 Improving access has improved the receipt of preventive services in the general population. If we refine our group of study to individuals with intellectual and developmental disability, then the residential unit of measure should be type of residence, in addition to type of neighborhood. If we know that living in a poor neighborhood reduces the likelihood of receipt of preventive services, and if we find this to be the case for individuals with intellectual and developmental disability, then we need to advocate for better transportation options to health care sites or be sure that federally qualified primary care sites in impoverished neighborhoods are welcoming and accessible for people with these disabilities. In the literature on intellectual and developmental disability, some researchers have included a person-level variable that captures the type of residential arrangement where the person lives.12 Is the adult with intellectual or developmental disability residing independently, with their family, in a group home, supervised apartment building, or large residential facility? Few studies look at both the neighborhood and the residential arrangement simultaneously, though some consider one or other these variables.13e15 If researchers include both neighborhood and residential arrangement variables in their models this could help us understand what needs to be addressed. The implications of educating a disability service system that provides group homes and supervised apartment living, about the guidelines for the receipt of preventive services in accordance with the US Preventive Services Task Force recommendations are very different from the implications of identifying a neighborhood where preventive services accessibility is low.16 As Editors of Disability and Health Journal, we believe the issue of residential type could be used in a more direct way, so our research findings can more quickly be translated into practice. It is likely that research about the factors predicting the receipt of preventive services for individuals with intellectual and developmental disability would have a better chance of being translated into practice if the analyses included both residential type and neighborhood characteristics. In addition, instead of simply using individuals as the unit of analysis, we believe analyses that study residence, the primary independent variable, could be easier to
2
Editorial / Disability and Health Journal 8 (2015) 1e2
interpret to policy makers. If we identify one residential type as more likely to receive preventive services compared to another residential type we would know where to put our resources for corrective action. If we don’t know this we will continue to identify group disparities without really having a handle on how we need to change the system. Suzanne McDermott, Ph.D., Margaret Turk, M.D., Co-editors DHJO References 1. Crews DE, Zavotka S. Aging, disability, and frailty: implications for universal design. J Physiol Anthropol. 2006; Jan;25(1):113e118. 2. Demirkan H, Olgunt€ urk N. A priority-based design for all approach to guide home designers for independent living. Archit Sci Rev. 2014; 57(2):90e104. 3. Hammel J, Jones R, Smith J, Sanford J, Bodine C, Johnson M. Environmental barriers and supports to the health, function, and participation of people with developmental and intellectual disabilities: report from the State of the Science in Aging with Developmental Disabilities Conference. Disabil Health J. 2008; Jul;1(3):143e149. 4. Anaby D, Hand C, Bradley L, et al. The effect of the environment on participation of children and youth with disabilities: a scoping review. Disabil Rehabil. 2013; Sep;35(19):1589e1598. 5. Welage N, Liu KP. Wheelchair accessibility of public buildings: a review of the literature. Disabil Rehabil Assist Technol. 2011;6(1):1e9. 6. Mulligan HF, Hale LA, Whitehead L, Baxter GD. Barriers to physical activity for people with long-term neurological conditions: a review study. Adapt Phys Activ Q. 2012; Jul;29(3):243e265.
7. Nicolaidis C, Kripke CC, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am. 2014; Sep;98(5):1169e1191. 8. Grintsova O, Maier W, Mielck A. Inequalities in health care among patients with type 2 diabetes by individual socio-economic status (SES) and regional deprivation: a systematic literature review. Int J Equity Health. 2014; Jun 2;13:43. 9. Vyncke V, De Clercq B, Stevens V, et al. Does neighbourhood social capital aid in levelling the social gradient in the health and well-being of children and adolescents? A literature review. BMC Public Health. 2013; Jan 23;13:65. 10. Gibson M, Petticrew M, Bambra C, Sowden AJ, Wright KE, Whitehead M. Housing and health inequalities: a synthesis of systematic reviews of interventions aimed at different pathways linking housing and health. Health Place. 2011; Jan;17(1):175e184. 11. Katz AB, Felland LE, Hill I, Stark LB. A long and winding road: federally qualified health centers, community variation and prospects under reform. Res Brief 2011; Nov;(21):1e9. 12. Bershadsky J, Taub S, Engler J, et al. Place of residence and preventive health care for intellectual and developmental disabilities services recipients in 20 states. Public Health Rep. 2012; Sep-Oct;127(5): 475e485. 13. Mobley LR, Kuo TM, Clayton LJ, Evans WD. Mammography facilities are accessible, so why is utilization so low? Cancer Causes Control. 2009; Aug;20(6):1017e1028. 14. Mann J, Zhou H, McDermott S, Poston MB. Healthy behavior change of adults with mental retardation: attendance in a health promotion program. Am J Ment Retard. 2006; Jan;111(1):62e73. 15. McDermott S, Martin M, Butkus S. What individual, provider, and community characteristics predict employment of individuals with mental retardation? Am J Ment Retard. 1999; Jul;104(4):346e355. 16. US Preventive Services Task Force. Links to public recommendations may be accessed here. http://www.uspreventiveservicestaskforce.org/ uspstopics.htm.
