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RAISE Family Caregiving Advisory Council: January 2021 Meeting Summary

On January 19, 2021, the RAISE Family Caregiving Advisory Council (FCAC) convened 

to hear presentations on Medicaid, listening sessions of family caregivers, and a federal 

inventory of family caregiver information 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, Lance 

Robertson, Administrator and Assistant Secretary for Aging at the Administration for 

Community Living (ACL). Administrator Robertson reflected on the council’s 

progress/accomplishments in 2020 and shared parting words and well-wishes, thanking 

the council for their commitment, along with the U.S. Department of Health and Human 

Services (HHS), ACL, and other partners who have supported the council’s work. The 

council also took a moment to share parting words, well-wishes, and gratitude for

Administrator Robertson’s support and leadership. 

Medicaid Supports for Family Caregivers Presentation

Kitty Purington, Senior Program Director at the National Academy for State Health

Policy (NASHP), delivered an informative presentation on ways state Medicaid

programs could support family caregivers (see full report). Purington noted family

caregivers’ role in states conducting rebalancing efforts toward home-and communitybased services (HCBS). Examples of HCBS that could support family caregivers include

counseling and respite, education and training, care coordination, and 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

presented opportunities to incorporate benefits for beneficiaries that support family

caregivers.

Purington highlighted examples of states that had incorporated innovative supports, and

noted opportunities at the federal level to support states in implementing family

caregiver strategies. Purington concluded by noting potential options to support family

caregivers of Medicaid beneficiaries such as partnerships with Area Agencies on Aging

(AAA), and other 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.
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[Caregiver] Listening Sessions Presentation

Eileen Tell, CEO of ET Consulting and Fellow at LTSS LeadingAge Center at UMass 

Boston, presented on the caregiver listening sessions. After receiving caregiver input 

from ACL’s Request for Information (RFI), on behalf of the FCAC Council, Tell worked 

with NASHP and the University of Massachusetts LTSS LeadingAge Center to conduct

a series of 15 virtual listening sessions to gather detailed perspectives from caregivers. 

Listening sessions included family caregivers of diverse age, race, ethnicity, 

employment status, and family structure, with additional tailored 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

 Financial wellbeing

The presentation examined how caregivers expressed a strong desire for respite

services but were worried about finding quality respite caregivers. The Council 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 among caregivers, including behavioral and medical training in a handson or online setting.

Another area of concern covered in the presentation is caregiver perspectives on 

different financial supports including:

 Workplace accommodations

 Direct pay

 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 greater availability of family to assist with care, they expressed that 

isolation, stress, difficulty adapting some therapies to a virtual setting, and other new 

responsibilities as challenges.

Overview & Discussion: 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 
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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. Members of the Family Caregiving Advisory Council 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.