HHS Delivers First National Strategy to Support Family Caregivers

With 53 million unpaid family caregivers supporting those needing long-term health care in the United States, many American families face a crisis as they try to provide quality care for a loved one while juggling their personal needs. Many of these caregivers are untrained and unprepared for the role. Many people have not made any plans for future long-term care, so the family goes into crisis mode.

The U.S. Department of Health and Human Services (HHS) released the 2022 National Strategy to Support Family Caregivers. The program was created to support family caregivers of all ages, from youth to grandparents, regardless of where they live or what caregiving looks like for them and their loved ones.

The program strategy is administered by the Administration for Community Living (ACL) and highlights nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. 

Unpaid Family Caregivers Would Cost Millions to Replace with Professional Care

Each year, around 53 million people provide a broad range of assistance to support the health, quality of life, and independence of a person close to them who needs assistance as they age or due to a disability or chronic health condition. Another 2.7 million grandparent caregivers – and an unknown number of other relative caregivers – open their arms and homes each year to millions of children who cannot remain with their parents. 

Without this crucial support, millions of elderly and disabled people would be unable to live in their communities; in addition, replacing it with paid services would cost an estimated $470 billion annually.

Generally, health insurance, including Medicare and supplements, pays little or nothing toward most long-term health care services. Medicaid will pay for long-term health care services but only if the care recipient has little or no income and assets. Long-Term Care Insurance will pay for these services, but someone cannot purchase a policy that already has poor health. LTC Insurance is typically purchased when someone is in their 50s. 

Many family members become caregivers by default of any advance plan. These family caregivers – who provide the overwhelming majority of long-term health care in the United States– currently lack resources to maintain their health, well-being, and financial security while providing crucial support for others.

COVID-19 Has Complicated Caregiving

HHS Secretary Xavier Becerra said that supporting family caregivers is an urgent public health issue that is exacerbated by the long-term effects of the COVID-19 pandemic.

This national strategy recognizes the critical role family caregivers play in a loved one's life. I know the importance of this first-hand, as someone who cared for my late father and navigated the challenges associated with caregiving.

Acting ACL Administrator and Assistant Secretary for Aging Alison Barkoff says that at some point in our lives, most of us will either be a family caregiver or need one, with many that experience both.

This strategy presents a vision, along with recommendations for achieving it. Bringing that vision to life will require contributions and commitments from every sector, every level of government – and all of us – and ACL is proud to help lead that work.

The strategy was developed jointly by the advisory councils established by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, with extensive input from family caregivers, the people they support and other stakeholders. The Administration for Community Living leads the implementation of the RAISE and SGRG Acts and facilitates the work of the two advisory councils.

Family Caregivers Lose Income When Providing Long-Term Health Care

Being a family caregiver is physically and emotionally demanding. 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. 

When the challenges become overwhelming, and family caregivers no longer can provide support, the people they care for often are left with no choices except to move to nursing homes and other institutions or to foster care – the cost of which is borne by taxpayers when the care recipient has little or no income or assets.

The strategy represents the first time a broad cross-section of the federal government has collaborated with the private sector on a response to the longstanding national need for a comprehensive system of family caregiver support. It is the product of comprehensive analysis and input from 15 federal agencies and more than 150 organizations representing a range of stakeholders from across the nation. It builds upon the initial reports delivered to Congress in 2021 by the RAISE Family Caregiving Advisory Council and the SGRG Advisory Council.

Commitment to Achieving Health Equity

"This strategy exemplifies our commitment to achieving health equity and providing better support to caregivers." said CDC Acting Principal Deputy Director Debra Houry, MD, MPH. "Providing fast, readily available data can help to identify and implement strategies to reduce the challenges and needs caregivers often face."

The Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure says that supporting family caregivers is common sense. She says that most people will, at some point in their lives, be a family caregiver, need a family caregiver, or both. She points out that caregivers are sacrificing for their loved ones and often are standing in the health care gap by providing that care.

Many of the more than 150 million people who receive health care coverage through Medicare, Medicaid, and the Health Insurance Marketplaces® rely on trusted friends and family for care. CMS is committed to advancing home and community-based services and other forms of caregiver support across the lifespan to give caregivers the recognition and resources they need and deserve.

Carole Johnson is the Administrator of the Health Resources and Services Administration. She says that family caregivers continue to be the life-sustaining force of our health care system – a fact that became even more clear during the pandemic.

The National Strategy to Support Family Caregivers is an important step forward in valuing their role and recognizing the work necessary to better support family caregivers going forward.

The strategy will be updated every two years. The updates will be based on public input, as well as the continued work of the advisory councils and communities, states and tribes, and federal agencies that are developing, implementing, and adapting policies and programs to support family caregivers.

The 2022 National Strategy to Support Family Caregivers was delivered to the U.S. Senate Committee on Health, Education, Labor and Pensions, the U.S. House Committee on Education and Labor, and to the State agencies responsible for carrying out family caregiver programs. The strategy will be updated every two years, as required by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017 (Public Law 115-119).

Advance Planning Can Reduce Financial Impact and Family Stress

While some families do not have the financial resources to plan adequately for long-term health care, those that do have the assets to protect often fail to do so. The lack of planning creates financial hardship and adds stress and anxiety to adult children who often become caregivers.

The federal government authorized the Long-Term Care Insurance Partnership Program as part of the Deficit Reduction Act signed by former President Bush in 2005. It allowed the states to participate in the program where those who own qualified Partnership Long-Term Care Insurance can have asset shelter even if they exhaust all the benefits from their LTC Insurance policy. Even a small policy can provide asset protection and access to quality care services. This would allow family members to be family instead of becoming caregivers.

There are also some federal tax incentives in place for some individuals and businesses. You can learn more by reading the Long-Term Care Tax Benefits Guide.