The U.S. Department of Health and Human Services (HHS) has released a broad national strategy that provides the roadmap needed for federal, state, and local governments, as well as businesses and communities, to better support family caregivers. The 2022 National Strategy to Support Family Caregivers identifies hundreds of actions that federal agencies will take to prioritize improving access to respite care, including family caregivers as part of a person’s care team, strengthening the direct care workforce, and helping to ensure caregivers’ financial security. The strategy includes corresponding actions for states and the private sector.
The National Strategy was developed by two congressionally mandated councils supported by the Administration for Community Living, in partnership with The John A. Hartford Foundation and the National Academy for State Health Policy.
“This first-ever national strategy gives us a whole-of-society approach to supporting the millions of family caregivers who desperately need assistance in this country,” said Terry Fulmer, PhD, RN, FAAN, president of The John A. Hartford Foundation. “The federal government has boldly detailed nearly 350 actions that agencies overseeing Medicare and Medicaid, Veterans Affairs, housing, labor, and more will take over the next three years to support caregivers. Now is the time for all of us — states, communities, business leaders, researchers, nonprofits, and philanthropies — to take action so that caregivers of older adults get the help they need and deserve.”
Federal government actions
The National Strategy includes federal government actions that address issues caregivers say are most important, including:
- Access to Respite Services: AmeriCorps Seniors will offer short-term care to help family caregivers take a break.
- Support with Day-to-Day and Complex Medical Tasks: Offices throughout the government will coordinate with states to grow and strengthen the direct care workforce to help with caregiving tasks.
- Inclusion of Caregivers in Care Teams: The Centers for Medicare and Medicaid Services will update rules to include family caregivers in the hospital discharge planning process so transitions are smoother for all involved.
- Financial Education on Caregiving Costs: The Consumer Financial Protection Bureau will increase the availability and use of financial education tools on the costs of long-term care so caregivers can better prepare.
- Better Identification of Family Caregivers: Departments across the government will pilot identification of family caregivers in electronic health records and state information systems and conduct localized outreach to share information with family caregivers about the support available.
- Research on the Needs of Family Caregivers: Interdepartmental efforts across the federal government will research family caregiving to inform evidence-based policies, including by providing grants to colleges and universities with gerontology and family service programs so support options meet family caregivers’ needs.
The report also includes state government actions in these key areas:
- Engaging Family Caregivers in Health Care Services and Systems: Engage family members as part of the care team, especially during care transitions and hospital discharges, assess family caregivers for their own needs, ensure that family members receive the information they need to care for the individual, and measure family caregiver engagement for quality improvement and payment.
- Services and Supports for Family Caregivers: Blend and braid federal and state funding for services such as home and respite care which can give family caregivers a needed break, leverage new Medicaid funding and flexibility, rebalance toward more home and community-based services, and pay family caregivers through Medicaid self-direction options.
- The Direct Care Workforce: Coordinate workforce policy and resources across agencies, develop career pathways, improve and streamline training and working conditions, create registries to match workers with clients and credential portability for aides to work in various settings or as a career ladder, and collect data on turnover rates, tenure, full-time/part-time status, vacancy rates, wages, benefits, and recruitment and retention.
- Financial and Workplace Security: Enhance family leave requirements, establish tax credits for caregiving expenses, establish protections against workplace discrimination based on family responsibilities, include family caregiving in unemployment insurance eligibility, and promote financial education and planning for family caregivers.
“As the major public payer for long-term services and supports and regulator of providers, states are facing the challenges of helping families live in their homes and communities while grappling with the shortage and working conditions of direct care workers — with increasingly aging populations. The National Strategy provides a timely roadmap for states as well as federal, business, and community sectors to address these challenges.”Hemi Tewarson, executive director at the National Academy for State Health Policy
Each year, around 53 million people provide a broad range of assistance to support the health, quality of life, and independence of someone close to them. An estimated one in six individuals is a family caregiver, and more than two-thirds of people will need assistance with tasks as they age.
Caregivers say providing support is rewarding but challenging mentally, physically, and financially. Family caregivers report poorer health outcomes because they often prioritize the needs of others before themselves and face chronic stress associated with their caregiving duties.
Lost income due to family caregiving is estimated at $522 billion each year. Family caregivers, on average, spend one-quarter of their annual income on caregiving expenses. Three-quarters of caregivers spend an average of $7,200 annually on caregiving-related out-of-pocket expenses.
Interested individuals and organizations can provide public comment on the National Strategy beginning on October 1. The Strategy will be updated biennially, informed in part by public feedback, ensuring it continues to meet the needs of family caregivers and those they care for as they evolve.
The National Strategy was developed jointly by the RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregiving Advisory Council and The Advisory Council to Support Grandparents Raising Grandchildren — both comprised of family caregivers, health care experts, advocates, and others — with technical support from the Administration for Community Living.
The John A. Hartford Foundation and the National Academy for State Health Policy provided support to the RAISE Family Caregiving Advisory Council through resources, technical assistance, and policy analysis.
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.
About the Advisory Council to Support Grandparents Raising Children
The Supporting Grandparents Raising Grandchildren (SGRG) Act, (Public Law 115-196) authorized establishing an advisory council to identify, promote, coordinate, and disseminate information, resources, and best practices available to help grandparents and other older relatives meet the needs of children in their care while maintaining their own physical, mental, and emotional health. The council is composed of grandparents, professionals working in the field of supports and services to grandparents and the children they care for, and representatives of the federal agencies that serve these populations. For more information, visit www.acl.gov/SGRG.