Individual, parent and social–environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder

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
Abstract
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.

Health Care for People with Intellectual and Developmental Disabilities across the Lifespan

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
Switzerland: Springer.
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.
http://www.springer.com/us/book/9783319180953?wt_mc=Alerts.NBA.SpringerAuthors-May-1
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.
 
David Ervin
Healthcare Financing, pp 177-183
 
David Erwin and Brian Hennen
Community Healthcare, pp. 229-241
 
James Rimmer and Kelly Hsieh
Health Promotion, pp1087-1103

Health services appraisal and the transition to Medicaid Managed Care from fee for service

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
 
Abstract:
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.

Perceptions of health and healthcare of people with intellectual and developmental disabilities enrolled in Medicaid Managed Care

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
 
Abstract:
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.

Group home care for adults with intellectual disabilities and Alzheimer’s disease

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 Conference: Self-Determination and Self-Advocacy Strand

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

National Goals Conference: Long Term Supports and Services Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Long Term Supports and Services 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 Long Term Supports and Services Issue Brief, AAIDD Inclusion Journal Article, and Video

National Goals Conference: Health and Wellness Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Health and Wellness 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 Health and Wellness Issue Brief, AAIDD Inclusion Journal Article, and Video

National Goals Conference: Families Strand

National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities


Setting a National Agenda for Family 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 Families Issue Brief, AAIDD Inclusion Journal Article, and Video