Carli Friedman and Mary C. Rizzolo (2016)
Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers. Intellectual and Developmental Disabilities: August 2016, Vol. 54, No. 4, pp. 233-244.
Correspondence concerning this article should be addressed to Carli Friedman, Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Road, M/C 626 Chicago, IL, 60608 USA (e-mail: firstname.lastname@example.org).
This paper was sponsored in part by a grant from the Administration on Intellectual and Developmental Disabilities (90DN0296).
The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.
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.
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
Heller, T., Gibbons, H.M., & Fisher, D. (2015). Caregiving and Family Support Interventions: Crossing Networks of Aging and Developmental Disabilities. Intellectual and Developmental Disabilities, 53(5), 329–345.
This scoping review addressed the following questions: (a) What types of caregiver interventions are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this review? The disability review spanned 20 years (1992–2012), resulting in 14 studies; the aging review spanned 5 years (2008– 2012), resulting in 55 studies. Data from the final selected studies were then extracted and compared on research design, type of intervention (governmental programs, small-group psychosocial, and other), and outcomes. Generally, in both fields, family-support interventions benefited participants’ well-being and improved service access and satisfaction. Increased partnership between the fields of aging and developmental disabilities is critical to future scholarship in caregiving for both populations.
Kathleen M. Bishop, Mary Hogan, Matthew P. Janicki, Seth M. Keller, Ronald Lucchino, Dawna T. Mughal, Elizabeth A. Perkins, Baldev K. Singh, Kathy Service, Sarah Wolfson, and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices (2015)
Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, February 2015, Vol. 53, No. 1, pp. 2-29. doi: http://dx.doi.org/10.1352/1934-9556-53.1.2
Magaña, S., Lopez, K., Paradiso de Sayu, R., Miranda, E. (2014). Use of promotoras de salud in interventions with Latino families of children with IDD. In R. Hodapp (Ed.) International Review of Research in Developmental Disabilities, 47, IRRDD, UK: Academic Press, 2014, pp. 39-75.
Magaña, S., Li, H., Miranda, E., & Paradiso, R. (2014) Improving health behaviors of Latina mothers of youths and adults with intellectual and developmental disabilities. Journal of Intellectual Disability Research. doi: 10.1111/jir.12139
Fujiura, G. (2014) The Political Arithmetic of Disability and the American Family: A Demographic Perspective. Family Relations Interdisciplinary Journal of Applied Family Studies, 63(1), pp. 7-19.
Kramer, J., Hall, Allison, & Heller, T. (2013) Reciprocity and Social Capital in Sibling Relationships of People With Disabilities. Intellectual and Developmental Disabilities, (51)6, 482-495. doi: http://dx.doi.org/10.1352/1934-9556-51.6.482