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Congressional Council Calls for Financial and Workplace Security for Family Caregivers

COVID-19 pandemic created urgency and momentum to address family caregiving

Washington D.C. (September 23, 2021) — A council mandated by Congress has delivered key recommendations to support family caregivers, including a call for financial and workplace security and expanding home and community-based services, among other actions.

The recommendations were developed by the congressionally authorized RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregiving Advisory Council comprised of family caregivers and experts after a two-year, multifaceted effort that gathered information from family caregivers across the country. Recommendations fall under five goals, which include:

  • 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. 
  • Supporting Financial and Workplace Security for Family Caregiversto 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 RAISE recommendations represent the most comprehensive and meaningful ways to support family caregivers, who desperately need support,” said Rani Snyder, MPA, vice president of program at The John A. Hartford Foundation. “Working with our Foundation, the National Academy for State Health Policy, and the Administration for Community Living, the Council drew on the latest research on caregiving, surveyed more than 1,600 family caregivers, held focus groups, and interviewed experts. Now we must bring these recommendations to life with concrete federal, state, and private sector actions.”   

About 53 million people provide a broad range of assistance to support the health, quality of life, and independence of someone close to them each year, according to AARP and the National Alliance for Caregiving. An estimated one in seven individuals are family caregivers, and more than two-thirds of people will need assistance with tasks as they age. 

“States have been at the forefront of offering a variety of services including respite care, training for difficult medical tasks, and services to help families live in their homes and communities,” said Hemi Tewarson, executive director at the National Academy for State Health Policy. “State leaders see the value in supporting family caregivers to delay costly nursing home care, to provide home and community-based services, and to offer better outcomes?for people needing care and their families.”  

The Council reported that the COVID-19 pandemic highlighted and exacerbated the challenges of family caregiving, including the struggle to balance work, family, and caregiving with many caregivers having to leave the workforce. There is currently no national strategy that provides guidance on how the public and private sectors at all levels can support family caregivers. The recommendations serve as the foundation of the forthcoming National Strategy to Support Family Caregivers. The strategy will drive increased recognition and support for family caregivers by proposing specific actions that can be taken at the federal and state levels, by local communities, philanthropic organizations, and educational bodies, as well as healthcare and long-term services providers. The strategy will also provide a roadmap for the nation to strengthen its support and recognition of the critical role family caregivers of all ages play in healthcare and long-term support systems.  

The John A. Hartford Foundation and the National Academy for State Health Policy support the RAISE Family Caregiving Advisory Council by providing resources, technical assistance, and policy analysis.  

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About The John A. Hartford Foundation 

The John A. Hartford Foundation, based in New York City, is a private, nonpartisan, national philanthropy dedicated to improving the care of older adults. The leader in the field of aging and health, the Foundation has three areas of emphasis: creating age-friendly health systems, supporting family caregivers, and improving serious illness and end-of-life care. For more information, visit?www.johnahartford.org. 

About the National Academy for State Health Policy 

The National Academy for State Health Policy (NASHP) is a nonpartisan forum of policymakers throughout state governments, learning, leading, and implementing innovative solutions to health policy challenges. NASHP supports states as they reach across branches and agencies examining and creating solutions to critical health issues. For more information, visit www.nashp.org 

About the RAISE Family Caregiving Advisory Council 

The Family Caregiving Advisory Council (the Council) was established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and convened for the first time in August 2019. The Council includes representation by federal agencies and 15 voting members, including family caregivers; older adults who need long-term services and supports; individuals with disabilities; health care and social service providers; providers of long-term services and supports; employers; paraprofessional workers; state local officials; accreditation bodies; veterans; and as appropriate, other experts and advocacy organizations engaged in family caregiving. The Council is charged with providing recommendations to the Secretary of Health and Human Services on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs. For more information, visit www.acl.gov/RAISE. 

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