ACL: RAISE Family Caregiving Advisory Council delivers report; recommendations for improving support to family caregivers

Administration for Community Living – Updated for September 2021

Author: Lara Stauning

9/22/21- Today the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregiving Advisory Council delivered its initial report to Congress. The culmination of a two-year, multi-faceted effort that gathered input from family caregivers across the country, the report provides an overview of many of the issues faced by family caregivers nationwide and provides recommendations for addressing them. 

The 26 recommendations fall under five goals: 

Increasing Awareness of Family Caregivers to increase public understanding of the contributions caregivers make, including helping individuals self-identify as caregivers so that they can get the support they need.

Engaging Family Caregivers as Partners in Healthcare and Long-Term Services and Supports to better integrate family caregivers into healthcare processes and systems.

Improving Access to Services and Supports for Family Caregivers including counseling, respite care, peer support, training on common in-home medical tasks, and practical assistance like transportation. Also included is a recommendation for strengthening the paid caregiver workforce.

Financial and Workplace Security for Family Caregivers to decrease the impact family caregiving can have on the financial well-being and professional lives of caregivers. 

Generating Research, Data, and Evidence-Informed Practices to help create policies and interventions that meaningfully help family caregivers. The report also includes an inventory of federally funded efforts to support caregivers and interviews with 26 caregivers representing a range of caregiving situations and needs.

The recommendations from the report are the first step to developing a national strategy that will outline critical actions that can be taken at the federal and state levels and by local communities, philanthropic organizations, healthcare providers and providers of long-term services and supports, and others to better support family caregivers. 

More than 53 million people provide a broad range of assistance to support the health, quality of life, and independence of someone close to them. Millions of older adults and people with disabilities would not be able to live in their communities without this essential support, and replacing that support with paid services would cost an estimated $470 billion each year. 

While family caregiving is rewarding, it can be challenging, and when caregivers do not have the support they need, their health, well-being and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated at $522 billion each year. All of these challenges have been intensified during the pandemic.

“COVID-19 laid bare the need to address the urgent issues experienced by family caregivers,” said ACL Acting Administrator and Assistant Secretary for Aging Alison Barkoff. “The pandemic exacerbated the challenges of family caregiving. Balancing work, family and caretaking became even more difficult, and in many cases, caregivers had to completely leave the workforce. The pandemic has created a new urgency and momentum to address caregiving.”

The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act, (Public Law 115-119) directs the Secretary of Health and Human Services to develop a national family caregiving strategy. To inform that work, the RAISE Act also directed the establishment of the Family Caregiving Advisory Council providing recommendations on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs. 

The Administration for Community Living is leading the implementation of the RAISE Act and facilitates the work of the RAISE Family Caregiving Advisory Council. 

The John A. Hartford Foundation and the National Academy for State Health Policy also support the Council, including development of the initial report, by providing resources, technical assistance, and policy analysis.

The National Alliance for Caregiving also supported development of the report, collecting and producing the interviews that bring the caregiver voice to the report. The interviews also can be seen in a series of videos.   

Watch a series of video interviews with caregivers about their experiences.

About the Administration for Community Living
The Administration for Community Living was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities. By funding services and supports provided by networks of community-based organizations, and with investments in research, education, and innovation, ACL helps make this principle a reality for millions of Americans.

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