January 5, 2016
This study investigated the extent of racial and ethnic disparities in the health of adults with intellectual and developmental disabilities. Analyzing data from the 2002-2011 Medical Expenditure Panel Survey and the 2000-2010 National Health Interview Survey, we found that Black and Latino adults with intellectual and developmental disabilities have markedly worse health in contrast to their white peers with intellectual and developmental disabilities. Included in the document is an analysis of policy opportunities around health disparities, including obesity prevalence, among adults with intellectual disabilities.
Sandra Magana, Department of Disability and Human Development at the University of Illinois at Chicago (UIC-DDHD)
Susan Parish, Rehabilitation Research and Training Centers on Developmental Disabilities and Health at the Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University (Lurie Institute)
Miguel Morales, UIC-DDHD
Henan Li, Lurie Institute
Glenn Fujiura, UIC-DDHD
The policy opportunity analysis was authored by
Ben Jackson, Association of University Centers on Disabilities (AUCD)
Adriane Griffen, AUCD
August 3, 2016
One out of every three adults aged 65 years or older in the general population falls at least once each year. For adults with intellectual disability (ID), the prevalence of falls is even higher with studies estimating a fall rate ranging from between 29% to 70%. Falls are a major cause of serious injury and hospitalization, and an important public health concern. Using baseline data from the Longitudinal Health and Intellectual Disability Study, we examined the prevalence of falls and potential risk factors for falls in adults with ID.
Kelly Hsieh, Department of Disability and Human Development, University of Illinois at Chicago
James H. Rimmer, Civitan International Research Center and Sparks Clinics, University of Alabama at Birmingham
Tamar Heller, Department of Disability and Human Development, University of Illinois at Chicago
Jessica Minor, Association of University Centers on Disabilities, Silver Spring, MD Christine Grosso, Association of University Centers on Disabilities, Silver Spring, MD
Burke, M. & Heller, T. (2016) Individual, parent and social–environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60 (5), pp 401–411. doi: 10.1111/jir.12271
Compared to parents of adults with other types of disabilities, parents of adults with autism spectrum disorder (ASD) experience worse well-being. Thus, it is crucial to identify the individual, parent and social–environmental correlates of caregiving experiences among parents of adults with ASD. For this study, 130 parents of adults with ASD responded to a survey about caregiving satisfaction, self-efficacy and burden. Greater future planning and community involvement related to more caregiving satisfaction and increased caregiving self-efficacy, respectively. Less choice-making of the adult with ASD related to greater caregiving satisfaction and self-efficacy. Maladaptive behaviours and poor health of the adult with ASD related to greater caregiving burden. Implications for policymakers, practitioners and future research are discussed.
Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (Eds.) (2016), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan
A new book has been published that offers a unique lifespan approach on health care for people with intellectual and developmental disabilities. It addresses the clinical as well as the systems of delivery of health care. It also provides a practical approach to dealing with the health and well-being of people with intellectual and developmental disabilities.
Chapters written by researchers of the Rehabilitation Research and Training Centre on Developmental Disabilities and Health include the following:
Kruti Acharya, Abigail Schindler and Tamar Heller:
Aging: Demographics, Trajectories and Health System Issues, pp 1423-1432.
Healthcare Financing, pp 177-183
David Erwin and Brian Hennen
Community Healthcare, pp. 229-241
James Rimmer and Kelly Hsieh
Health Promotion, pp1087-1103
Owen, R., Heller, T. & Bowers, A. (2016). Health services appraisal and the transition to Medicaid Managed Care from fee for service. Disability and Health, 9(2), 239-247. doi:10.1016/j.dhjo.2015.10.004
Background: Many states are transitioning fee-for-service (FFS) Medicaid into Medicaid Managed Care (MMC) for people with disabilities.
Objective: This study examined managed care’s impact on health services appraisal (HSA) and unmet medical needs of individuals with disabilities receiving Medicaid. Key questions included 1) Do participant demographics and enrollment in MMC impact unmet medical needs and HSA? 2) Within MMC, do demographics and continuity of care relate to unmet medical needs?
3) Within MMC, do demographics, unmet medical needs and continuity of care relate to HSA?
Methods: We collected cross-sectional survey data (n 5 1615) from people with disabilities in MMC operated by for-profit insurance companies (n 5 849) and a similar group remaining in FFS (n 5 766) in one state. Regression analyses were conducted across these groups and within MMC only.
Results: Across Medicaid groups, MMC enrollment was not related to either HSA or unmet needs; health status, having a mental health disability and unmet transportation needs related to HSA and health status, unmet transportation needs and having a mental health or physical disability related to higher unmet medical needs. Within MMC, in addition to better health and fewer unmet medical needs, less continuity of care significantly decreased HSA. Higher unmet transportation needs, poorer health status, having a physical or mental health disability, and less continuity of care significantly decreased unmet medical needs.
Conclusions: This research points to the importance of meeting unmet needs of individuals in MMC and the need for increased continuity of care as people transition from FFS.
Gibbons, H. M., Owen, R., & Heller, T. (2016). Perceptions of health and healthcare of people with intellectual and developmental disabilities enrolled in Medicaid Managed Care. Intellectual and Developmental Disabilities, 54(2), 94-105. DOI: 10.1352/1934-9556-54.2.94
This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers.
Pan C-C, Davis R, Nichols D, Hwang SH, Hsieh K. Prevalence of overweight and obesity among students with intellectual disabilities in Taiwan: A secondary analysis. Research in Developmental Disabilities. 2016; 53–54, 305-313
Janicki, M.P. (2016). Stationäre Einrichtungen der Behindertenhilfe für Menschen mit geistiger Behinderung und dementieller Erkrankung [Group home care for adults with intellectual disabilities and Alzheimer’s disease].
In S.V. Müller and C. Gärtner (Eds.), Lebensqualität im Alter: Perspektiven für Menschen mit geistiger Behinderung und psychischen Erkrankungen [Quality of life in old age: prospects for people with intellectual disabilities and mental illness] (pp. 237-262). Wiesbaden, Germany: Springer Fachmedien
Read Group home care for adults with intellectual disabilities and Alzheimer’s disease.
National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
Setting a National Agenda for Self-Determination and Self-Advocacy Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.
View Self-Determination and Self-Advocacy Issue Brief, AAIDD Inclusion Journal Article, and Video