RAISE Family Caregiving Advisory Council: September 2021 Meeting Summary

On September 21, 2021, the RAISE Family Caregiving Advisory Council (FCAC) 

convened to discuss the release and dissemination of its Initial Report to Congress. 

The Council watched video presentations of the report overview recorded by the 

Council Co-Chairs, and listened to two caregivers who were invited to the meeting to 

share personal stories of their caregiving experiences. Attendees also heard 

presentations on key priorities of the Biden-Harris Administration, as well as other 

emerging legislative initiatives that impact family caregiving in the US, and explored

ways for shifting focus to the development of a National Family Caregiving Strategy.

Call to Order and Welcome Remarks

The meeting was called to order by Alison Barkoff, Acting Administrator and Assistant 

Secretary for Aging at the Administration for Community Living (ACL). Administrator 

Barkoff welcomed members and other participants to this important event. She 

expressed special gratitude to members personally and collectively for their hard work 

and commitment in achieving this important milestone of producing an Initial Report that 

will be submitted to Congress the following day on Wednesday, September 22. She 

shared how important and timely the recommendations are as they will pave the way for 

the development of a National Family Caregiving Strategy that is long overdue. She 

acknowledged and conveyed special appreciation to ACL’s collaboration with partner

organizations such as the John A. Hartford Foundation (JAHF) who supported the 

Council’s work with a grant to the National Academy for State Health Policy (NASHP) 

which funded the RAISE Family Caregiver Resource and Dissemination Center, and 

others like the National Alliance for Caregiving (NAC), UMass-Boston, Community 

Catalyst and others who have contributed in so many ways to make today’s 

accomplishment possible.

Administrator Barkoff explained that there are 53 million caregivers in the US and that at 

any given time, one in seven of us serves as a caregiver. She shared how the COVID19 pandemic has exposed the real importance of family caregiving in the last 18 

months, and how the work and contributions of caregivers have also been exacerbated 

during the pandemic. She elaborated by stating that is why the President has made 

caregiving a center piece of his Build Back Better Plan which Congress is currently 

focused on. She spoke about key provisions in the Administration’s reconciliation bill 

now in Congress to support family caregivers such as Better Care Better Jobs Act, and 

the expansion of paid family leave. She explained that the Administration is already 

making use of certain provisions of the American Rescue Plan of 2021 as a down 
payment to pay caregivers who step in to provide care for their loved ones. She 

commended the ACL team for completing this report at this particular point in time and 

extended special thank you to Greg Link, Director, Office of Supportive and Caregiver 

Services who spearheaded the Council’s work especially, through a ravaging pandemic 

to a finished initial report that is ready for submission to Congress tomorrow. 

Overview of Report

The Council’s attention was drawn to the recorded video presentations of the report 

overview by the three Council Co-Chairs: Nancy Murray, MS, Alan Stevens, Ph.D., and 

Casey Shillam, Ph.D. Below are some of the important issues the Council tried to 

address in the now completed initial report to Congress:

• The economic value of family caregiving in the US is estimated at $470 billion 

annually.

• Family caregivers are the backbone of care in the US but not adequately 

supported by policies at all levels of government. 

• The report will result in the development of the first ever National Family 

Caregiving Strategy in the US to ensure that there is adequate support for family 

caregivers.

• There is a significant personal relationship between family caregivers and the 

people receiving support.

• Due to lack of consistent supports, the caregiving experience usually leave 

caregivers to be financially, emotionally, and physically depleted and socially 

isolated.

• Caregiving has become more complex than is usually the case as most 

caregivers now perform medical, administrative, care coordination duties, etc. 

• Caregiver voices were the driving force behind the work the Council has done.

• The 25 videos of caregivers who told their stories is the unique part of the report 

and informed the 26 recommendations.

• The report is the first step to implementing the RAISE Act.

• The Strategy when completed, will form the roadmap for change and truly 

supporting our nation’s caregivers.

• The report reflects concerns of caregivers nationwide as gathered through the 

more than 1600 RFI responses, caregiver focus groups, stakeholder listening 

sessions, 25 caregiver narratives and videos.

The Council also watched a special video, titled, Faces of Caregiving, which was 

created by the National Alliance for Caregiving (NAC). Two of the caregivers, Debbi 

and Sarah, featured in this video were present at the meeting. Administrator Barkoff 

spoke with Debbi and Sarah, asking each of them questions about their lived 

experiences. Their stories were so powerful and personal that they put a human face to 

the real lives of family caregivers, as well as the sacrifices and often lonely terrain they 

have to navigate on a daily basis with little or no support in place to help them.

At the conclusion of her remarks, Administrator Barkoff handed the meeting over to

Greg Link who asked for a roll call of the attending Council members to acknowledge 
their contributions, and to thank them for what they have accomplished. He expressed 

special appreciation to Rani Snyder and Scott Bane of the John A. Hartford Foundation 

(JAHF) for their grant to the National Academy for State Health Policy (NASHP) as well 

as to Wendy Fox-Grage and her team at NASHP for their support. He reminded the 

Council of the need to continue to stay informed of what is going on in Congress, the 

federal government, and across the country especially, now that its focus has shifted to 

developing a National Family Caregiving Strategy.

Looking Ahead to the Development of a National Strategy 

Mr. Link introduced Jessica Schubel, Director of Affordable Care Act and Health Care 

for the White House Domestic Policy Council (DPC) to provide an overview of some of 

the Administration’s key priorities. Ms. Schubel started by highlighting some of the 

President’s efforts to strengthen Medicaid Home and Community Based Services 

(HCBS), as well as family caregivers in addition to the following priorities:

• The President believes that healthcare is a right and not a privilege. 

• Provide additional funding to States through the American Rescue Plan to help in 

reducing waitlists, pay caregivers for their work and other ancillary expenses 

such as upfront transition costs, security deposit and utility bills, telehealth, 

personal protection equipment (PPE), respite care, vaccine related transportation 

costs, supplies that are not usually paid for by Medicaid, workforce training, and 

by allowing caregivers to enroll as Medicaid providers, etc.

• Allow States to use money from the American Rescue Plan to establish or 

expand HCBS programs by increasing wages or provide paid leave for home 

care workers, workforce training and workforce quality improvement initiatives. 

This money can also be used to provide important information caregivers need to 

perform more complex tasks. 

• Two important policies in the Build Back Better Plan that are worth mentioning 

are 1. Money Follows the Person Demonstration Program which allows many 

families to move back into their homes and communities, bringing with it 

innovations in long term care delivery. 2. Expanding Access to Quality HBCS

while creating new employment opportunities, supporting efforts for increased 

wages, provide health insurance and paid leave, other benefits to caregivers, 

training and career advancement opportunities, and the establishment of a 

national paid leave program.

• The president is also calling on Congress to pass the Healthy Family Act which 

will allow workers to accrue 7 days of paid sick leave per year that can be used 

to attend to their own preventive care needs or that of their family members.

• The President shares what most families already believe – that their loved ones 

should remain in their homes and communities.

• The President’s proposal for the creation of a National Comprehensive Paid 

Family and Medical Leave Program that will ensure employees receive partial 

wage replacement when they take time to care for a seriously ill loved one, their 

own illness or take time to deal with the loss of a loved one. When approved, 

this program will guarantee 12 weeks of annual paid leave for parental, family 
and personal illness plus 3 days of bereavement leave starting at first year of 

implementation.

Members also heard from two speakers from the National Alliance for Caregiving 

(NAC): Grace Whiting, President and CEO and Mike Wittke, Senior Director, Public 

Policy and Advocacy. Some of the issues they spoke about included:

• The need for a dynamic, impactful and meaningful strategy.

• Caregivers are partners and high quality care providers.

• Healthy families are core to the nation’s public health system.

• Community efforts to estimate the global prevalence of caregiving is important 

to support a global action plan for Carers, and to build partnerships with the 

United Nations (UN) and the World Health Organization (WHO). 

• The importance of building awareness and outreach because not all 

caregivers identify as such and some often resist such labeling. Systems 

therefore have a responsibility to reach out to individuals instead of the other 

way around. 

• The need to recognize caregivers as partners, the CARE Act is a good 

starting point but other opportunities exist to engage caregivers like those in 

the 21st Century Cures Act 2.0.

• Caregivers will benefit from paid family and medical leave and wage 

replacement programs as currently proposed by the Administration to address 

the need for income security. Additionally, the Credit for Caring Act and 

universal family care will help caregivers and recognize the value of their 

work. 

• The need for family centered support to engage caregivers who are often 

forgotten especially, young caregivers. Some State actions/programs such 

as the Maryland Caregiver Services Corps have been deemed helpful during 

the COVID-19 pandemic. 

• Research and data gathering: Actions like expanding the caregiver module of 

the Behavioral Risk Factor Surveillance System (BRFSS) and implementing 

the strategic plan created by the National Institute of Nursing Research will

help with gathering robust and consistent data. 

Some of the key issues the Council discussed during the Q&A included but not 

limited to the following:

• Family paid leave for caregivers. 

• Lessons learned from the Affordable Care Act (ACA) that could be applied to 

the National Strategy.

• Why the Social Security Credit Act has not received much attention?

• The need to involve families in discussing and defining what respite care 

means for their particular situation.
Closing Remarks

Administrator Barkoff thanked the speakers for their insightful presentations and 

expressed her hopes that the report and the 26 recommendations in it will bring about a 

remarkable change and ultimately translate into an impactful National Family Caregiving 

Strategy that will set the stage for adequately supporting family caregivers nationwide.

She again expressed gratitude to the Council and to the caregivers who may be 

listening, she thanked them for their participation and urged them to see the report as a 

recognition for their work. Mr. Link adjourned the meeting.