By Lisa Watts
LTSS Center researchers spent three years listening to the needs of family caregivers and developing strategies for addressing their concerns.
The National Academy for State Health Policy recently released Analysis of Public Comments on the National Strategy to Support Family Caregivers: Perspectives and Priorities. The publication represents the latest step in three years of work by researchers at the Leading Age LTSS Center @UMass Boston and their partners. The team listened to the needs of family caregivers and developed strategies for addressing those concerns and bringing them to the attention of national policymakers.
Researchers included Eileen J. Tell, principal and CEO of ET Consulting LLC and a fellow of the UMass Boston Gerontology Institute; Marc Cohen, LTSS Center co-director; Pamela Nadash, associate professor of gerontology at UMass Boston; and Siena Ruggeri, policy coordinator at the Center for Consumer Engagement in Health Innovation at Community Catalyst.
The work was made possible by the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregiver Resource and Dissemination Center at the National Academy for State Health Policy, with generous funding from The John A. Hartford Foundation and in collaboration with the U.S. Administration for Community Living. (ACL).
STEP ONE: LISTENING
The LTSS Center research team began its listening work in 2021 by conducting dozens of strategy sessions, focus groups, and interviews with representatives of more than 100 organizations. Their 2022 report, Building a National Strategy to Support Family Caregivers: Findings from Key Informant Interviews and Stakeholder Listening Sessions, summarized insights from researchers’ conversations with representatives of:
- National and state organizations.
- County health providers.
- The direct care workforce.
- Large and small employers.
- Aging and disability organizations.
- Faith-based groups.
- Respite care providers.
The 2022 report synthesized interviewees’ thoughts on best practices in family caregiver support and on the action steps that would be most critical to reaching these five goals:
- Increasing awareness of family caregivers.
- Engaging family caregivers as partners in healthcare and long-term services and supports.
- Improving access to services and supports for family caregivers.
- Supporting financial and workplace security for family caregivers.
- Generating research, data, and evidence-informed practices.
“The rich findings (in this report) illustrate the importance of connecting with a diverse array of stakeholders,” said Tell.
STEP TWO: NATIONAL STRATEGY TO SUPPORT FAMILY CAREGIVERS
At a White House ceremony on September 21, 2022, the U.S. Department of Health and Human Services (HHS), through the Administration for Community Living, presented its 2022 National Strategy to Support Family Caregivers, which was based on the work of LTSS Center researchers. The national strategy includes nearly 350 actions that the RAISE Act Family Caregiving Advisory Council recommends for the federal government and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers.
“Our new, first-of-its-kind national strategy recognizes the critical role family caregivers play in a loved one’s life,” HHS Secretary Xavier Becerra said in his presentation, nodding to the LTSS Center’s work. “I know the importance of this first-hand, as someone who cared for my late father and navigated the challenges associated with caregiving.”
For the researchers, the ceremony affirmed that the need for greater support for family caregivers has gained greater visibility and momentum.
“The issue has been simmering on the back burner for a long time, and the COVID-19 pandemic brought it more to the forefront,” says Nadash. “There’s a lot of energy and goodwill out there to move the issue forward. We wouldn’t usually have a White House representative talking about how important the issue is to him. It felt like a bit of a moment.”
STEP THREE: ANALYZING PUBLIC COMMENTS
The White House ceremony launched a period of public comment to help refine and prioritize the strategies outlined in the National Strategy. That feedback led to the latest LTSS Center report, which summarizes and analyzes the public comments and includes trends and opportunities for further development of the national strategy.
STEP FOUR: TESTING NEW APPROACHES
LTSS Center researchers are now part of a new four-year ACL grant to develop, test, and disseminate new approaches for increasing awareness of family caregivers and building support for their concerns. Community Catalyst will be helping coalitions across 10-15 states build their family caregiver advocacy to support many of the recommendations in the national strategy. LTSS Center researchers will evaluate those efforts.