RAISE Family Caregiving Advisory Council: January 2021 Meeting Summary
On Jan. 19, 2021, the RAISE Family Caregiving Advisory Council convened to hear presentations on Medicaid supports for family caregivers, listening sessions with caregivers, and the compiling of a federal inventory of family caregiver resources and programs. The council also discussed the process for reviewing its initial report to Congress.
The meeting began with a recorded video message from the council chair, Administrator and Assistant Secretary for Aging at the Administration for Community Living (ACL) Lance Robertson. He reflected on the council’s progress and accomplishments in 2020 and shared parting words and well wishes, thanking the council for its commitment, along with that of the US Department of Health and Human Services (HHS), the ACL, and other partners that have supported the council’s work. The council also took a moment to share its gratitude for Robertson’s support and leadership.
Medicaid Supports for Family Caregivers Presentation
National Academy for State Health Policy (NASHP) Senior Program Director Kitty Purington delivered an informative presentation on ways state Medicaid programs could support family caregivers (read the full report). Purington noted family caregivers’ role in states that are conducting rebalancing efforts toward home- and community-based services (HCBS). Examples of HCBS that could support family caregivers include counseling and respite, education and training, care coordination, and state reimbursement options that could include family caregivers. Purington noted that policy levers, such as state plan options, 1915(c) waivers, 1115 waivers, and Medicaid managed care present opportunities to incorporate benefits for enrollees that support family caregivers.
Purington highlighted examples of states that have incorporated innovative supports for family caregivers and noted opportunities at the federal level to support states in implementing effective family caregiver strategies. Purington concluded by noting potential options to support family caregivers of Medicaid enrollees, such as:
- Partnerships with area agencies on aging (AAA), and similar organizations that offer training and counseling supports through waivers or managed care organizations; and
- Support infrastructure for caregiver assessment.
Purington also explained the importance of developing evidence-based practices to support programs and services, particularly in underserved communities.
Family Caregiver Listening Sessions Presentation
Eileen Tell, chief executive officer of ET Consulting and Fellow at LTSS LeadingAge Center at UMass Boston, presented an overview of the caregiver listening sessions. After receiving caregiver input from ACL’s Request for Information on behalf of the council, a series of virtual listening sessions were held that gathered detailed perspectives from caregivers. Listening sessions attendees included family caregivers of diverse age, race, ethnicity, employment status, and family structure, along with additional groups, such as Latinx, teen, and grandparent caregivers.
The presentation covered the major areas of inquiry from the listening sessions including:
- Respite
- Adult day care
- Information and referral
- Caregiver training and education
- Care transitions, and
- Financial well-being.
The presentation examined how caregivers expressed a strong desire for respite services but expressed concern about finding quality respite caregivers. Council members also discussed caregiver concerns with referral systems and how they can be changed to earn caregiver trust. The presentation also addressed different preferences for training and education of caregivers, including behavioral and medical training in a hands-on or online setting.
Another area of concern covered in the presentation was caregiver perspectives on different financial supports including:
- Workplace accommodations
- Direct pay, and
- Tax incentives.
Tell also addressed how the COVID-19 pandemic is impacting caregivers, describing both positives and negatives. While many caregivers appreciate additional workplace flexibility and the greater availability of family to assist with care, they cited isolation, stress, difficulty adapting some therapies to a virtual setting, and other new responsibilities as challenges.
Inventory of Federal Programs and Initiatives to Support Family Caregivers
Greg Link from ACL shared updates on the compilation of an inventory of federal programs and initiatives that could support family caregivers. Information within the inventory is intended to address family caregivers, kinship/grandparent caregivers, and other stakeholders. The inventory is currently planned to be made available to the public via a webpage in the future, with a high-level overview in the report to Congress.
Initial Report to Congress: Overview of Council Review Process
Sarah Markel of ACL explained the process for publishing the finalized first draft of the report to Congress. Council members will soon have the opportunity to review and provide edits to the first draft and collaboratively discuss changes. Once the report is finalized and passes clearance, the council will vote on final approval.
Closing Remarks
The meeting concluded with a discussion of the review process for the council’s initial report to Congress, and next steps involving development of the Family Caregiving National Strategy. The council subcommittees will meet in February 2021.
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