Family Caregiving Advisory Council members convened for the second time as a full council on Feb. 11 and 12, 2020, to establish and refine the goals that will guide its creation of a National Family Caregiving Strategy.
The strategy will include recommendations that government, communities, providers, and others can take to recognize and support family caregivers as required by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018 (the RAISE Act). The Family Caregiving Advisory Council made great progress and unanimously agreed on principles and goals to drive the creation of the National Family Caregiving Strategy.
The second council meeting began with remarks from Lance Robertson, Administration for Community Living (ACL) Administrator and Assistant Secretary of Aging, who commended the public for the Request for Information responses received by the ACL. Robertson also acknowledged:
- The significant level of support the council has received both nationally and internally, including from the Congressional and Executive branch levels;
- The council’s commitment to fulfilling its task while recognizing that a job well done takes time; and
- The engagement of federal partners in this work.
Using NAPA as a Model
To assist the council in the development of a national strategy, Helen Lamont, council member and long-term care policy analyst at the Department of Health and Human Services (HHS), presented an overview of the decision-making process used by the National Alzheimer’s Project Act (NAPA) Council. The 2011 NAPA legislation, which is similar to the RAISE Act, directed the HHS to establish a council to create and maintain a national plan to overcome Alzheimer’s disease. Because of its similarities, the NAPA council and strategy can serve as a model to guide the development of the caregiving strategy.
Casey Shillam, subcommittee chair, led the council in developing the following guiding principles that the council can use as a framework as they draft recommendations and a national strategy:
- “Family caregiver” is an inclusive and holistic term that includes all who are caring for individuals across the life span with chronic or other health conditions, disabilities, or functional limitations;
- Promoting greater adoption of person- and family-centered care puts the person and family at the center of care teams, acknowledging the challenges of possible conflicting goals;
- Efforts to support family caregivers should advance the autonomy, choice, and ability of caregivers and care recipients to engage meaningfully in their communities;
- Recommendations should recognize and support family caregivers in a fair and impartial manner that accounts for financial impact and respects and appreciates their complexity, diversity, and dignity; and
- The national strategy will be a living document with ongoing actions, created in partnership with family caregivers, to be taken by federal, state, and local governments, communities, providers, and others while fostering cross-discipline and cross-sector collaboration.
Alan B. Stevens, subcommittee chair, led a discussion to develop primary goals to help shape the council’s recommendations to Congress. The council adopted the following goals:
- Expand awareness, outreach, education, and access to programs, services, and products to optimize the physical, emotional, and financial well-being of family caregivers and care recipients;
- Recognize, include, and support family caregivers as key partners in the provision of health care and long-term services and supports;
- Protect, promote, and enhance financial and workplace security of family caregivers;
- Promote research, identification, and adoption of evidence-based practices in caregiver support; and
- Strengthen program administration, governance, and collaboration among all appropriate stakeholders to build a society that recognizes family caregivers.
The council agreed that the wording of the above goals could be modified as they develop recommendations under each goal.
Bruce Finke, council member and senior advisor of the Office of Quality for Indian Health Services, led a discussion about the value of Driver Diagrams in developing actionable goals. A Driver Diagram is a visual display of a group’s philosophy on what “drives” or contributes to the fulfillment of a project goal. Nancy Murray, subcommittee chair, along with Finke, led a Driver Diagram exercise with the council to start brainstorming possible drivers for each of the goals outlined above.
Through a Request for Information process, the ACL accepted comments from the public on key questions related to the RAISE Act and family caregiving. The public comment period for the RFI closed on Feb. 7, 2020. The council will use this public input to inform its deliberations and develop recommendations. ACL is also working to develop an online portal to be used by council members to better facilitate collaboration.
The council’s work is supported by a unique collaboration between The John A. Hartford Foundation, ACL, and the National Academy for State Health Policy (NASHP). With generous support from The John A. Hartford Foundation, NASHP created the RAISE Family Caregiver Act Resource and Dissemination Center. The center will continue to provide the council with resources to inform and disseminate its work with state and federal policymakers, diverse stakeholders, and the public.