Rural Personal Assistance Services: Short Supply and High Demand

December 7, 2021

People in the United States have a long history of preferring to live in their communities and “age in place” rather than move into nursing homes or assisted living facilities. For people of all ages with disabilities, this often means finding help from a Personal Care Aide (PCA).

People with self-care disabilities rely on PCAs in order to remain in their homes and be active members of their communities. PCAs help with tasks like meals, dressing, housekeeping, transportation, and running errands. The services PCAs provide are called Personal Assistance Services (PAS), and they are vital for people with disabilities.

Researchers wanted to compare the differences in PAS for people with disabilities in urban and rural areas. Is there more need in cities or small towns? Can people with disabilities who need PCAs find them? To answer these questions and more, two research groups teamed up.

Rural PAS: Short Supply and High Demand was a shared project through the University of San Francisco Health Workforce Research Center on Long-Term Care and the Rural Institute on Inclusive Communities at the University of Montana. These teams got together to look into the availability of PCAs nationwide. They created a visual tool called a StoryMap to show where there are higher rates of people with self-care disabilities and where there are PCAs.

Unfortunately, the researchers found that there are not enough PCAs where they are needed most. In rural areas, there is a lower ratio of PCAs to people with self-care disabilities. As a result, people with these disabilities who live in smaller towns or the country often can’t find the help they need. This makes it difficult for them to stay in their homes and communities.

Knowing that rural areas have too small a PCA workforce, researchers were interested in the experiences of the people doing the job. In the second phase of the project, the research teams focused on the day-to-day realities for PCAs caring for people with disabilities in rural communities.

The experience of rural PCAs is not well understood. To give them a voice, researchers recruited PCAs from rural communities across the country to be interviewed for phase two. These interviews provide a valuable glimpse into their lives. Participating PCAs talked about how much they love their jobs, despite low pay and unpredictable hours. They told researchers about the challenges of rural infrastructure and inadequate policies, but also their dedication to the people they care for and their satisfaction with their work. Researchers used the content of the interviews to create a second StoryMap about the people involved. This StoryMap illustrates the resilience and relationships that form rural life. It tells us about people and places that have often been ignored, but keep going through determination, joy, and hope.

Many rural areas used to have local industries. Mining, farming, logging, and manufacturing provided jobs and formed rural cultures. Overall, there are fewer of these jobs now. This can make it tough for rural people to find good employment. Jobs in Home and Community Based Services (HCBS) such as PAS are growing quickly. The growth rate for these jobs is four times the national average. The problem is that they are not growing quickly enough in rural areas. This research shows there are already not enough PCAs for rural people with self-care disabilities. Plus, rural populations are aging more quickly than urban centers as young people move from their rural communities, which increases the need.

While PAS could provide a lifeline for rural communities to endure and thrive, this research illustrates an urgent need for change. HCBS policies need to be updated to provide the necessary resources to create good PAS jobs in rural communities. Rural people with disabilities need more PCAs to help them participate in their communities. Rural PCAs need better pay, benefits, and support. And most importantly, rural people with disabilities and their PCAs need to be part of the discussion.

To learn more about this research, check out the two StoryMaps. Personal Care Assistance in Rural America shows phase 1 and describes the essential role of PCAs with analysis of their regional availability for people with disabilities. Phase 2 is presented in It’s a Human Connection, which provides an inside look at paid caregiving in rural America directly from PCAs.