En español | An advisory panel charged with helping the U.S. Department of Health and Human Services (HHS) develop a federal strategy to support family caregivers has delivered its initial report, detailing 26 recommendations to provide financial and other assistance to the more than 48 million Americans providing unpaid care to older and disabled loved ones.
The 141-page report issued Sept. 22 marks a major step toward implementation of the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act. The measure, which Congress passed and the president signed into law in early 2018, tasks HHS with establishing a national family caregiving agenda and improving coordination across government programs that assist caregivers and care recipients.
In a series of meetings over two years, the 30-member RAISE Family Caregiving Advisory Council assessed the current patchwork of federal efforts to support family caregivers and developed recommendations for meeting five core goals:
- Expand outreach and education for family caregivers and public awareness of the needs and challenges they face.
- Engage caregivers as partners in providing health care and long-term services and supports for their loved ones.
- Improve access to services and supports such as respite care, counseling and transportation assistance.
- Ensure financial and workplace security for family caregivers.
- Generate research, data and evidence-based practices to develop policies and programs that meaningfully help caregivers.
In a statement, AARP praised the council’s work, particularly in spotlighting the financial strain on family caregivers and calling for greater access to home- and community-based services to support them. A June 2021 AARP study found that 78 percent of family caregivers routinely incur out-of-pocket caregiving costs averaging more than $7,200 a year.
“As the council points out, America’s 48 million family caregivers are the backbone of our care system, and they are breaking under the strain,” said Nancy LeaMond, AARP’s chief advocacy and engagement officer. “It’s time for policymakers to take action.”
AARP has called on Congress to enact a tax credit for family caregivers this year and to pass legislation to provide paid leave for caregiving. Some states mandate paid leave for caregiving purposes, but the federal Family and Medical Leave Act authorizes only unpaid leave and does not apply to 40 percent of the U.S. workforce.
RAISE Act panel targets ‘negative financial impacts’
The advisory council report does not cite specific legislative initiatives but does call for federal action to “decrease the negative financial impacts for family caregivers” and advance “employee-centered, flexible workplace policies and practices that support work/life balance” and help working caregivers maintain job performance when their personal circumstances change.
That’s a common problem for the tens of millions of Americans who help parents, spouses, children and adults with disabilities and other loved ones to live independently. They prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform common medical tasks and more, all so loved ones can live at home.
Among other issues, the report also addresses the need for respite care and other services to address caregivers’ physical and mental well-being; including caregivers as “essential members and partners” of a care recipient’s health care team; and how Medicare, Medicaid and veterans’ programs interact with caregiving.
The HHS secretary appointed the council, and it operates under the aegis of the Administration for Community Living, an HHS agency that works to help older adults and people with disabilities live and thrive in their own communities.
It includes 15 voting members, among them caregivers, disabled adults, employers, health care and long-term care providers, veterans, state and local officials, and 15 advisory members from federal departments and agencies. One of the voting members is Catherine Alicia Georges, AARP’s former national volunteer president, who was caregiver to her late husband.
Their recommendations will serve as a framework for a national family caregiving strategy aimed at improving information collection and sharing — especially on promising practices and innovative models for care, better coordinating and assessing existing federal programs to recognize and support family caregivers, and assisting and informing state and local efforts to support family caregivers.
Editor's note: This article, originally published in July 2015, has been updated with more recent information.