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American Association of Caregiving Youth applauds recommendations for improved recognition and support of family caregivers

Federal advisory council delivers key recommendations
to support family caregivers

For Immediate Release

Boca Raton, FL . (September 24, 2021)—A congressionally mandated council that received input from the American Association of Caregiving Youth (AACY) delivered recommendations to policymakers on how to better support family caregivers of all ages, including a call for financial and workplace security and expanding home and community-based services, among other actions.

The RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregiving Advisory Council—comprised of family caregivers, healthcare experts and others—with AACY’s Caregiving Youth participating and Dr. Connie Siskowski serving on its faculty, developed the recommendations after a two-year, multifaceted effort. The 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 Caregivers to decrease theimpact 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.

According to AARP and the National Alliance for Caregiving, 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. An estimated one in six individuals are family caregivers today, and more than two-thirds of people will need assistance with tasks as they age. There are more than three million adult family caregivers in Florida alone and more than 290,000 public middle and high school Caregiving Youth.

Founded in 1998 in Boca Raton, FL, what is now the American Association of Caregiving Youth (AACY) is a nonprofit serving children and adolescents who provide significant or substantial assistance, often on a regular basis, to relatives or household members needing help because of a physical or mental illness, disability, or frailty. Above all, we champion, support, and celebrate youth who care for chronically ill, injured, elderly, or disabled family members.

AACY is the only organization in the U.S. dedicated solely to addressing Caregiving Youth issues. 

“Family caregivers of all ages provide support to a host of individuals, from the ever-growing number of people and especially older adults with the gamut of physical and mental health conditions. They are an integral part of our society, and the health and home care delivery system.  They are needed and relied on now more than ever. Increasingly care is falling on children and adolescents, for whom there is so little support and recognition. The recommendations of the RAISE Family Caregiving Advisory Council give us tangible ways to support them and offers one of the first opportunities for the voices of all family caregivers to be heard on a national level.” said Connie Siskowski, RN, PhD, President and Founder of AACY. 

The council’s 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, including Caregiving Youth 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 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 council was established as part of the RAISE Act (Recognizing, Assisting, Including, Supporting, and Engaging Family Caregivers), which passed Congress in 2018. 

In addition to the participation and support of The American Association of Caregiving Youth, The John A. Hartford Foundation and the National Academy for State Health Policy provided support for the RAISE Family Caregiving Advisory Council with resources, technical assistance, and policy analysis. For more information, visit www.acl.gov/RAISE

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CONTACT:  Dylan Wilde, Communications Manager, AACY | dylan@aacy.org | 561-391-7401