TennCare, our state’s Medicaid program, covers nursing home costs for 60% of all Tennessee nursing home residents and also covers in-home professional caregivers. However, TennCare members also rely on family caregivers to meet their care needs. By taking on caregiving tasks at the most crucial moments, family caregivers enhance their family members’ quality of life. They also save the state dollars by delaying or preventing the need for care in a nursing home or similar facility. This is essential because, as the number of paid caregivers rapidly decreases, family caregivers fill the gap created by workforce shortages.
Despite the value family caregivers provide, Tennessee largely overlooks their vital role in the healthcare system. According to AARP’s 2023 State Scorecard Report, Tennessee is ranked last in all 50 states and D.C. in supporting family caregivers. Financially compensating for the labor family caregivers provide is one step towards supporting this role in Tennessee's healthcare system.
Tennessee’s shortcomings are even more distressing in the context of a healthcare system that is plagued with inequities. Social determinants of health (SDOH) are non-medical factors that have a major impact on people’s health, well-being, and quality of life. These factors include things like economic stability, education, neighborhood, and community. If older adults and disabled individuals experience a lower quality of care due to SDOH, this has a ripple effect on family caregivers. In addition, family caregiving burdens are more intense for those in Black, Latine, low-income, and rural communities than white communities due to these inequities.
Disparities in caregiver burdens
Caregiving is demanding. Some family caregivers maintain a full-time job in addition to caring for their loved one while others remain purposely underemployed in order to meet caregiving needs. The National Alliance for Caregiving found that, on average, Black and Latine caregivers spend more hours providing care to their family members and helped with more activities of daily living that require physical hands-on assistance, like bathing and eating. In another study, 54.3 percent of Black caregivers were likely to provide over 40 hours of care per week compared to 38.6 percent of white caregivers.
Caregiving is expensive. Even when supported by a Medicaid program, families often have regular out-of-pocket costs related to caregiving. 33 percent of white respondents to a national survey reported that covering costs of their family members’ needs is a problem. For other racial and ethnic groups, the percentage is higher: 49 percent of Black respondents, 52 percent of Latine, 44 percent of Asian, and 56 percent of American Indian/Alaska Native/Native Hawaiian/Pacific Islanders reported difficulties covering out-of-pocket costs.
Caregiving is intergenerational. Family caregiving is common in Black, Latine, and Asian communities where many households are intergenerational. Capable family and community members assume the role of caregiver, with or without outside support, because they prioritize family over personal needs. This may mean working more hours to make ends meet, giving up working entirely, or learning new skills related to caregiving. Though Black, Latine, and Asian caregivers often self-report lower emotional strain from caregiving than White caregivers, objective measures – such as financial strain of caregiving, number and intensity of caregiving tasks, impacts on mental or physical health – show these same communities experience more burdens from caregiving.
Paying family caregivers.
Black, Latine, and Asian family caregivers are more significantly impacted by caregiving burdens and require a policy intervention that makes their role more sustainable. One critical investment to address this is to pay all family caregivers for the labor they perform and the relief they provide to the long-term services and supports healthcare system. Our state’s policymakers should prioritize robust relief for family caregivers through direct payments, training programs, and support networks to minimize the equity issues that caregiver burdens cause.
To learn more or join us in pushing for this policy change, visit Tennessee Disability Coalition/Tennessee Justice Center's Paid Family Caregiving Resource hub here.