Un/paid labor: Medicaid Home and Community Based Services waiver that pay family as personal care providers

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.
doi: http://dx.doi.org/10.1352/1934-9556-54.4.233
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: cfried6@uic.edu).
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.

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