How States Can Strengthen Support for Family Caregivers

There are about 53 million people in the U.S. serving as family caregivers, carrying out tasks ranging from preparing meals to helping loved ones bathe and dress. That number is certain to grow as the nation’s population ages amid a severe shortage of paid home care workers, placing increased health and financial stress on families.  

Recently, the U.S. Department of Health and Human Services released the 2022 National Strategy to Support Family Caregivers, identifying hundreds of actions that federal agencies can adopt to better assist family caregivers. In addition, it includes more than 150 corresponding actions broken into five goals that states, localities and other sectors can take to help families and to better coordinate with the federal government.

The five goals call for officials to increase awareness of and outreach to family caregivers, advance partnerships and engagement with them, strengthen services and supports, ensure financial and workplace security, and expand data, research and evidence-based practices to support home care workers. 

State actions to further two of the five goals—growing the home care workforce and expanding employment protections—would have a significant impact on the lives of family caregivers and those they care for.

Growing the Direct Care Workforce

One of the most effective ways to help family caregivers is to expand and strengthen the workforce of paid caregivers, also known as direct or home care workers, who assist older adults and people with disabilities wherever they live, including in nursing homes and other long-term care settings. Low pay, inadequate benefits, insufficient training and little to no opportunity for career growth has led to a critical shortage of these workers. Home care jobs are frequently part time, forcing workers to patch together their income. They are often held by women of color and immigrants, and the treatment and working conditions they are subject to are time and again rooted in racism, sexism and classism.

Facing extreme worker shortages, states are already taking action to improve support for family caregivers and conditions in the direct care workforce by educating people about the value of these workers and coordinating policies and resources between agencies. Several states have registries of direct care workers to match them more easily with the people who need their services. Some states are addressing training, recruitment and retention through Medicaid managed care plans that provide long-term services and supports. Many states are allowing registered nurses to delegate certain health care tasks to aides, which can reduce the burden on families who otherwise might need to perform these tasks themselves.

States can strengthen and grow the direct care workforce by increasing wages, benefits, training and career growth opportunities. They can achieve these goals through increasing Medicaid payment rates, technical and community college trainings and partnerships, minimum training requirements, Medicaid managed care plan contract negotiation, and adjustments to provider licensure requirements. 

The benefits of doing that are extensive—caring and well-trained individuals are more likely to seek and stay in professional caregiving jobs as a career, leading to higher quality of care for families. At the same time, growing the direct care workforce drives state and local economic development by creating new job opportunities with wages that allow for more discretionary spending.

Strengthening the direct care workforce is also politically popular and enjoys overwhelming bipartisan support. In a poll released by The John A. Hartford Foundation (JAHF) in November, 94% of Democrats and 93% of both Republicans and independents are in favor of bringing in direct care workers to assist families.

Ensuring Financial and Workplace Security

Family caregivers lose $522 billion in wages each year by using unpaid time off or leaving the workforce altogether to carry out their responsibilities. On average, those who are employed spend one-quarter of their income on caregiving expenses. For three-quarters of caregivers, that can mean more than $7,000 a year in out-of-pocket expenses.

Several states have addressed financial insecurity by establishing tax credits for caregiving expenses, prohibiting workplace discrimination against family caregivers, expanding the length of leave available under the Family and Medical Leave Act and increasing the number of covered employers, and ensuring individuals who leave a job to become a caregiver are eligible for unemployment insurance. Most of these initiatives are implemented through state legislation and corresponding regulations.

In the JAHF poll, 93% of respondents said they were in favor of providing paid time off to family caregivers. And nine out of 10 respondents said they believed in guaranteeing unemployment benefits for people who need to leave their jobs to care for someone.

A Roadmap for States to Support Family Caregivers

States wield incredible influence and have several tools available, including legislation, regulation, Medicaid waivers and health plans to better support family caregivers. Now, the historic HHS report provides an opportunity for federal, state and local governments, and the private sector to do more to support family caregivers, improve their quality of life, and ultimately strengthen our communities and health systems. This opportunity should not go to waste, and states should immediately work towards implementing all the recommendations to further the strategy’s five key goals.