Authors: Roger C. Lipitz, Center Issue Brief
Jennifer Wolff, Karen Davis, Mark Leeds, Lorraine Narawa, Ian Stockwell, Cynthia Woodcock
People with significant disabilities commonly rely on personal care assistance (human help) to undertake every day activities such as eating, bathing, dressing, toileting, or getting around inside. When needed, the availability and adequacy of personal care assistance is foundational to optimizing quality of life and allowing people with disabilities to remain living at home or in the community. Two-thirds of older adults with disabilities rely exclusively on unpaid personal care from family members or friends. (Freedman and Spillman 2014) People with disabilities who are enrolled in Medicaid may self-direct personal care through home and community-based waiver programs or personal care optional benefits in which relatives, friends, or independent providers are compensated by the Medicaid program for the personal care that they provide. Self-direction of services in which family caregivers are compensated by Medicaid as paid personal care attendants raises several challenges for states with regard to oversight of quality and management of budget neutrality given the possibility that paid services may substitute for unpaid care that would have been rendered in the absence of compensation. This brief describes issues that relate to family caregivers as paid personal care attendants along three dimensions: (1) the history and context, (2) quality and budgetary implications, and (3) Community First Choice, with a focus on the state of Maryland, in particular.
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