RAISE FAMILY CARE ADVISORY COUNCIL MEETING, MAY 20 – 21, 2020

MEETING SUMMARY

DAY 1

The first Day of the FCAC meeting began with a call to order and opening remarks 

from Lance Robertson, Administrator and Assistant Secretary for Aging. During 

his opening remarks, Administrator Robertson expressed gratitude for the hard 

work the RAISE council has dedicated towards addressing the challenges faced by 

caregivers across the nation as well as the development of a National Caregiver 

Strategy and the initial report to Congress. Administrator Robertson touched on 

topics such as the work that ACL has been doing in response to the COVID19 

pandemic. In response to the pandemic, ACL was able to disburse an additional 1.2 

billion of aid to states, with thanks to the supplemental grants received through the 

Family First Act and CARES Act. Of the supplemental funding disbursed, ACL

put 60 percent towards fighting food disparities through its meals program. The 

Cares Act program has become more diverse, now including initiatives that 

support family caregivers. ACL has provided 100 million dollars to states to help

strengthen the Caregivers Support Program nationwide. In an effort to expand 

resources, ACL has placed nearly 30 resourceful documents on the Acl.gov

website, which provides guidance and technical assistance to everyone including 

the public during the pandemic. 

Administrator Robertson also welcomed Sarah Markel, the newest federal member 

of the team who has a background in writing and journalism. Sarah will be doing 

some significant writing for the Council’s work. Also with the federal government

recently holding its Public Service Recognition week, Administrator Robertson 

encouraged the audience to take time to celebrate federal employees and all the 

hard work that they continue to do under the present circumstances. The meeting 

held today will cover the issues faced in the family caregiving community and 
some insight into the Council’s proposed resolutions, which will be addressed in

the initial report to Congress and the National Caregiver Strategy. 

The moderator, Greg Link who is also the Federal Designated Officer for the 

RAISE Council moved the meeting forward by briefly going over the meeting 

Agenda followed by roll call of the council. Greg noted that this meeting was

developed in collaboration with the National Academy for State and Health Policy 

(NASHP) based on the subcommittee’s work in March and April. He also 

mentioned that May is Older Americans month.

Project Updates

The meeting continued with project updates from ACL, John A. Hartford, and 

NASHP. Two major updates from ACL were regarding the published report on the 

Progress Toward a National Strategy to Support Family Caregivers and 

Administrator Robertson’s blog ACL Supports Family Caregiving During the 

COVID-19 Pandemic Response which was also referenced by Secretary Azar in a 

HHS blog. 

The National Academy for State Health Policy

Council members actively engaged in a discussion regarding the characteristics for 

recruiting caregiver focus groups in collaboration with NASHP and Focal Point 

Global as partners. Focus groups are scheduled to meet in groups of six people per

session for twelve sessions beginning on May 28, and then June 2 – 4. It was 

agreed that listening sessions could be bigger in number including stakeholders 

that will eventually add more voices to the discussion.

Members also talked about the need to take bold steps and not back down from 

ensuring that financial impact of caregiving on families is carefully considered not 

only for the present, but also for future action. The moderator asked members with 

ideas/thoughts on how best to analyze the information obtained from the RFI to 

submit it to him or Wendy.

RFI Analysis and Presentation

Pam Nadash of the University of Massachusetts (UMass) Boston, contracted by 

NASHP to conduct an in-depth review/analysis of the RFI responses, presented the 
preliminary findings. The RFI received 1,613 responses. Of the number of 

respondents, 75% came from family caregivers, and there were no significant 

differences between identified priorities for family caregivers and individuals 

responding on behalf of an organization. 

Among the top priorities are service planning, family centered care, and respite 

followed by financial issues/financial security. The responses represented a 

diverse group comprised of different ages, racial/ethnic backgrounds. The analysis 

included the single most important recommendation expressed by respondents: the 

need to pay family caregivers for the work they do, either through some form of 

tax credits, social security credits, etc. The presentation resulted in a robust 

conversation among members regarding some of the findings from the RFI 

submissions, and how best to utilize this information for the greater good. The 

presenter informed council members that information, discussions and 

recommendations from the upcoming focus groups and listening sessions will help 

the council recalibrate its focus in better addressing some of the most important 

issues facing family caregivers 

Family Leave Presentation - AARP 

Members also listened to a presentation by Lynn Feinberg from the American 

Association of Retired Persons (AARP) which focused on the need for a 

comprehensive paid family leave for employees was discussed extensively by 

members as a win-win for everyone involved, and should be an issue deserving of

an urgent national conversation, consideration, and legislation. She talked about 

the history of the first Family Leave Act (FMLA) enacted in 1993, and why family 

leave is important for American working families. The conversation shifted to 

examining the gaps that currently exist in the availability and use of Paid-Time-Off 

(PTO). The discussion considered two recent bills that went into effect on April 2, 

2020, in response to COVID-19. The bills expire December 31, 2020. Members 

were introduced to state-by-state efforts that addresses the gaps as well as research 

based recommendations that could be worth their consideration as they struggle to 

find the most practical solution to this important issue. 

DAY 2
The second and last day of the FCAC full council meeting began with 

Administrator Robertson expressing his appreciation to two key partners of the 

council’s work, The John A. Hartford Foundation (JAH) and the National 

Academy for State and Health Policy (NASHP), for their work in support of ACL

and family caregivers. He informed members that of the $1.2 billion ACL 

received, ACL will use $100 million to strengthen the caregiver program, and that 

the plan is to share the outcomes of that support soon. He encouraged members to 

pay attention to the programs offered by ACL and to look at the recently published 

blog on Older Americans month.

The moderator and Federal Designated Officer Greg Link then did a roll call of the 

RAISE council members before diving into the Agenda and housekeeping items.

He informed members that there would be a poll during the meeting to capture the 

council’s preference of either a one-day or two-day full council meeting every 

month, versus a continuation of subcommittee meetings. Greg gave the council the 

option to meet via a combination of both subcommittee and full council meetings 

every month for the remainder of the year. He provided members a preview of the 

two important presentations they will be listening to during the remainder of the 

day on respite care and data gathering and research.

Respite Care

Greg turned the meeting over to Jill Kagan, the Director of the ARCH National 

Respite Network and Resource Center, who developed a presentation on respite 

care and how it affects caregivers. The discussion began with defining respite as 

“the actual plan or emergency care provided to a child or adult with special needs 

in order to provide temporary relief to family caregivers for caring for that child or 

adult”. Greg informed the council that this definition is included in the Lifespan 

Respite Care act. Members listened to the challenges family caregivers face when 

attempting to access respite care, the financial and emotional toll involved, what is 

missing, and finally, some practical commonsense recommendations including best 

practices, and non-governmental partnerships that are working to address the gaps.

Data and research Presentation 

Dr. Scott Beach, Director of the Survey Research Program at UCSUR/University 

of Pittsburgh, and Joe Caldwell, Director of the Community Living Policy Center 
at the Lurie Institute for Disability Policy, Brandeis University, gave a presentation 

on data and research including the major gaps and the improvements needed to 

improve caregiver access to resources. They introduced data gathering and 

research statistics that could lead the way to new pathways for lasting changes in 

family caregiving.

Working Session: National Strategy Driver Diagram 

Over several months, the council worked on the national strategy driver diagram as 

subcommittees and for the first time they were able to come together as one to 

review and provide feedback on the latest iteration of the driver diagram. 

Wrap Up and Next Steps

 Based on the poll results, ACL will schedule a full council meeting in July.

 ACL will send calendar invites to the council for the upcoming virtual 

NASHP Faculty Listening sessions;

 The council was encouraged to further review the Driver Diagram to submit 

additional feedback on revisions, and ideas around actions steps pertaining 

to the five goals that will help achieve the overall aim of moving 

collaboratively towards a National Caregiver Strategy.