Personal care aides supporting patients at home are in high demand but nearly 3 times more likely to live in poverty

Rural people with self-care disabilities have less access to personal care aides, revealed a new study published in this month’s Health Affairs issue.

Adults with self-care disabilities—disabilities requiring help dressing, bathing or getting around at home—range from 3.9% to 8.7% of the population across the U.S. These 7.5 million Americans are concentrated in the south, southeast and rural areas, areas least likely to supply PCAs to meet demand. The new study offered various creative solutions, including increased flexibility in Medicare waivers and reallocating Medicare funds to increase pay and retention incentives.

“Personal care aides are especially critical to the health, safety and community engagement of adults with one or more self-care disabilities,” said study co-author Susan Chapman, Ph.D., professor at the University of California, San Francisco school of nursing. “Given the current state of the personal care aide workforce, exacerbated by the COVID-19 pandemic, and the decreasing population of working-age people in rural areas, policymakers and home care service providers need creative solutions to address the need for services among rural adults with a self-care disability.”

Using 2013 through 2017 data from the American Community Survey and the Office of Management and Budget, non-white rural residents over 65 years old were the most likely to have a disability. This study segmented off those who self-reported as having a self-care disability, and Chapman emphasized that there are other segments of the population also relying on personal care aides, also called home health aides, who were not included in this study; therefore, the study shows conservative demand estimates.

When there are PCAs in the areas most in need, they are more likely than the general population to live below the poverty line and not be insured, the study found. Across all other occupations, 6.8% of all Americans live below the poverty line, yet 19% of PCAs live in poverty.

While PCAs in urban areas are more likely to be non-white immigrants without a high school diploma, PCAs in rural settings are often white, born in the U.S. and with at least a high school diploma.

“There have been data over time showing chronic worker shortages in this area, but not necessarily highlighting it by geography so that was our goal: Where are the areas with most need?” Chapman said. “We thought that there would be some challenges in rural areas, but we analyzed the whole country and looked at the ratios in the whole country. The reasons for personal care aide shortages over time haven't changed. It's because of the job and the pay and the benefits.”

Researchers point to long-standing challenges in recruiting personal aides in rural communities, including low wages (on average $10 to $12 per hour), travel time between clients, limited or a lack of employment benefits, unpredictable schedules and an isolating work environment.

Nearly a quarter of adults younger than age 65 in rural areas are covered by Medicaid, according to the study. Twenty-two percent are dually enrolled in Medicare and Medicaid. Medicaid is also the primary funder of long-term services and support (LTSS).  

The Medicaid LTSS program dictates that states must cover benefits for nursing facilities, but home and community-based service coverage is optional with spending varying by state.

“Maybe we move money out of more expensive nursing homes and into the communities so people can live at home; that's already happening with more money going toward home and community-based services,” Chapman said. “The creative part is how to address the wage issue rather than just pay more. This could be paying incentives for travel time. People need a higher skill level of care, maybe allowing personal care aides to increase their skill bases by having more training and therefore earning better money while providing more care.”

Despite incentives for states to reallocate Medicaid LTSS dollars toward home and community-based services, institutional services continue to receive more funds in rural areas as compared to urban areas. Many southern states offer some pay for family members who function as PCAs, but regulations on hours covered, types of family relations considered applicable and training required can vary widely.

Chapman emphasizes that more location-specific research is needed. Since all data pools analyzed are public, she suggests states and counties do more niche research, expanding the maps she has helped create to understand the zoomed-in state of the problem.

“It's not the same problem and it's not the same solution everywhere,” Chapman said. “The whole country needs to solve this problem programmatically. Each state can do their own analysis. They could look at our breakdowns and refine them to address the problem. When they plan a workforce incentive program and provide grants for training you can look where the greatest need was.”

The authors suggested rural areas could expand waivers for family members to receive pay for work they are already doing, overall wages can increase, retention bonuses can be offered and travel can be better rewarded. COVID-19 decreased the overall workforce, demanding a rethinking of labor pools, the study said. Older residents can also be recruited to work as PCAs, a population that disproportionately resides in rural areas.

With an increase in PCA wages would come a decrease in reliance on other government-subsidized programs aiding populations below the poverty threshold, researchers said.