What do Family Caregivers Want? Payment for Providing Care

ABSTRACT

Although the primary goal of self-directed programs providing long term services and supports (LTSS) is to maximize choice and control for service recipients, such programs may also benefit family caregivers by compensating them for providing supportive services. This study draws on qualitative data from research supporting the RAISE Family Caregiver Advisory Council, finding that family caregivers themselves see the expansion of self-directed programs as a policy priority due to their need for financial security. The request for compensation was the strongest finding, with respondents highlighting the incompatibility of work with caregiving and their inability to rely on the existing paid workforce due to supply and quality issues; the consequences of this loss of earned income were reported as severe. Ultimately, respondents saw payment for providing care as an issue of fairness. This evidence supports the policy case for expanding access to self-directed programs that permit the employment of family caregivers.

KEYWORDS:

• Self-directed services
• consumer-directed care
• family caregivers
• informal care
• retirement security
• financial strain
• employment

Key points

• Programs offering self-directed long term services and supports have become more available.

• In some programs, family members can be paid to provide care: this option is popular.

• Family caregivers report difficulties sustaining work and fears for their financial security.

• Family caregivers strongly recommend that they be compensated for providing care.

• Expansion of self-directed programs benefits not just care recipients, but family caregivers too.

Disclosure statement

This work was supported by the Administration for Community Living and the John A. Hartford Foundation.

Additional information

Funding

This work was supported by the John A. Hartford Foundation, with a subcontract from the National Academy for State Health Policy, in collaboration with the Administration for Community Living.

Notes on contributors

Pamela Nadash

Pamela Nadash is an Associate Professor.

Eileen J. Tell

Eileen Tell is an independent contractor and principal of ET Consulting, and is a Fellow of the Gerontology Institute, John W. McCormack Graduate School of Policy and Global Studies, University of Massachusetts, Boston, Massachusetts, USA