It’s time for Tennessee to acknowledge the tireless efforts these family caregivers provide and pay them for their work

• Vanessa Zapata is an attorney and the director of health policy and equity at the Tennessee Justice Center.

Tennessee ranks last in all 50 states and D.C. in its treatment of family caregivers according to a 2023 AARP report.

This comes as no surprise to Tennessee families who must care for loved ones with disabilities and/or who are aging.

The expectations and stress related to family caregiving are too high and have become unsustainable.

Every day, families reach a breaking point, as one family caregiver explained, “I would like there to be 24/7 support for my son in the family home. He would get this support in any other residential setting, but since he lives with me, it’s expected that I will do everything over 40 hours a week for free. It’s just too much to expect of any person. It’s no wonder that family caregivers go into crisis. Can’t live on four hours of sleep indefinitely.”

During the COVID-19 public health emergency, many states paid family caregivers as a method of protecting medically frail individuals during the pandemic. This experiment helped states understand that paying family caregivers is not only a tool to keep vulnerable community members safe and out of an institutional setting. It also provides critical relief for the family caregiver. It’s time for Tennessee to join this trend and pay these unsung heroes for their work. We can do this through Medicaid Structured Family Caregiving.

Change the system so it works for Tennessee families

Compensating family caregivers is a strategic investment in healthcare. Studies consistently show that family care at home significantly decreases health care utilization such as ER use. Paying family caregivers also recognizes caregivers as integral members of the healthcare team for the person supported. Not only will this prevent the undervaluing of their work but will also promote equity as Black and Hispanic households are more likely to take on family caregiving roles.

Right now, our state’s Medicaid program, TennCare, only has the option of “Consumer Direction” as an indirect way for family caregivers to be compensated.

However, many families have found this option to be impossible to implement. The most impractical barrier for many families is that immediate family members or any person that lives with the person supported, or even lived with the person in the last five years, cannot be paid through Consumer Direction. This structure just doesn’t work for many families.

But we can change the system so that it does work for those who are aging, those that have disabilities, and their families. Implementing this policy requires thoughtful analysis of what Tennessee families experience today, the experience during COVID, and what other states are trying now.

One option that Tennessee can study is Georgia’s state agency, Health Force of Georgia, which manages hiring and paying family caregivers. Another option is the agency-directed model, where family members are hired by existing agencies, as seen in Oregon.

Care giving should not become a financial burden

It’s time to acknowledge the tireless efforts these family caregivers provide and pay them for their work.

They shouldn’t have to choose between caring for a loved one and financially supporting their family.

This not only helps value their work but also reaches the heart of what our TennCare program is about – providing healthcare to Tennesseans.

Vanessa Zapata is an attorney and the director of health policy and equity at the Tennessee Justice Center. She provides direct services to individuals having issues navigating public benefits programs like TennCare Medicaid. She advocates for policies that strengthen public benefits programs, remove access barriers to these programs, and promotes health equity.