Supporting Diverse Family Caregivers: Key Stakeholder Perspectives.

This study aimed to understand the perspectives of key stakeholders regarding strategies for better supporting culturally and ethnically diverse family caregivers, aiming to incorporate them into the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Advisory Council's proposed National Strategy. The Strategy, published in 2022, identified priority actions to support the growing population of people providing unpaid care to people of all ages with disabilities, with a goal of improving the health and well-being of both the family caregiver and the person receiving support. Researchers conducted extensive outreach to purposively diverse stakeholder organizations, using six stakeholder strategy sessions with representatives from 42 groups in December 2020 to identify preliminary themes. During July-October 2021, 17 key informant interviews and 16 stakeholder listening sessions were held, involving 103 different organizations. Qualitative data analysis using an inductive approach was used to identify key themes. A significant issue for diverse caregivers is widespread lack of self-identification as caregivers, which is tied to a lack of awareness of potentially helpful services and supports; culturally appropriate outreach is critical to ensure access to services, as well as access to centralized resources and funding for community- and faith-based organizations. A community health worker model was recommended. Tailored activities, involving trusted community- and faith-based groups, as well as investments in caregiver- and culturally-specific supports, are critical for reaching the diverse family caregivers who most need supports. Raising awareness of caregiving among and taking advantage of the expertise of professionals working with diverse communities is also crucial.

What do Family Caregivers Want? Payment for Providing Care.

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.

Policies to Sustain Employment Among Family Caregivers: The Family Caregiver Perspective.

The work of caregiving can make it difficult to sustain employment. This study aimed to clarify what family caregivers themselves think is important in remaining employed, as part of work mandated under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2018. Data came from a Request for Information promulgated by the Administration for Community Living, resulting in 1147 family caregiver responses, and 12 focus groups. Findings support many goals identified by caregiver-advocates, such as expanding the Family and Medical Leave Act, and access to paid time off and sick leave; caregivers also value flexible work arrangements. However, the study further revealed a need for supportive work environments that protect caregivers against workplace discrimination and negative attitudes held by both managers and colleagues, and thus for employer education about the caregiving experience as well as caregivers' needs for workplace supports and benefits, and possibly anti-discrimination legislation.

The complementarity of public and private long-term care coverage.

Discussions about long-term care financing often get mired in the false dichotomy that long-term care should be primarily either a public or a private responsibility. Our starting premise is that public and private long-term care coverage can best serve complementary roles. Therefore, public policy should focus on supporting both mechanisms to achieve efficient and equitable outcomes. The current state of the private long-term care insurance market, and the possible reasons for its modest size, provide a starting point for exploring how public policy might interface more productively with it, in the context of both existing and potential programs, such as the proposed Community Living Assistance Services and Supports (CLASS) Act.