Approximately 10 million people with disabilities receive paid personal assistance services (PAS) in the United States. For many, these services are critical for social and community participation. However, little is known about rural-urban differences in PAS delivery and consumption, and how these services influence community participation and health.
To address this lack of understanding, RTC:Rural is conducting research on PAS in rural America.
Dr. Rayna Sage, RTC:Rural Project Director, explains the project and its goals, and gives a quick progress update.
What will you be doing for the PAS in Rural America project?
Rayna Sage (RS): This project has three exciting components that involve getting a lay of the land, surveying and interviewing rural PAS consumers across five states (Alaska, Arizona, Montana, Texas, and Wisconsin), and conducting participatory curriculum development to shape existing PAS worker training to better meet the needs of rural workers.
In this first year [of the five-year project], we are neck deep in completing a systematic review of peer-reviewed literature, of which there is very little on rural PAS experiences, and analyzing three years of administrative data provided by our national partner Consumer Direct Care Network. These efforts will help us, in partnership with our Rural PAS Advisory Board, decide what questions and measures we will include on the consumer survey we are conducting this fall.
Why is RTC:Rural doing this research?
RS: I see the importance of this project as two-fold: 1) to bring greater public awareness to the challenges and opportunities related to these vital services that are often first to be cut during difficult budget time, and 2) to fill an important gap in disability research.
This project will help tell the story of the many rural people with disabilities using PAS services and making it work. It’s important to share this narrative, which is in contrast to much of the current popular press coverage that paints rural America as a failing and disappearing part of American culture.
PAS is incredibly underfunded, but for many people with disabilities in rural places, access to PAS and the availability of PAS workers is vital for living a healthy life, connecting to community, and staying in the workforce.
What work have you done so far?
RS: This spring I worked with two undergraduate research assistants to complete a rapid literature review of peer-reviewed research related to rural PAS for people with disabilities. We limited our search to research published between 2000 and 2019 across a wide variety of interdisciplinary journals. This search resulted in 17 potential articles, with some really only being related loosely to our topic and primarily focusing on access to health care.
When Lewis Black, a University of Montana sociology graduate student, joined our team this summer and began working on the literature review, he asked early on if he should look for some more updated research. He was shocked that these 17 peer-reviewed articles are all that exist on such an important topic. Our findings will fill an important research void.
Who are you working with?
RS: Our primary partner on this project is Consumer Direct Care Network, although the Association of Programs for Rural Independent Living (APRIL) has also been fantastic in helping us recruit advisory board members and in shaping the initial proposal. Our advisory board members represent consumers, PAS workers, and service providers in all five of our states: Alaska, Arizona, Montana, Wisconsin and Texas.
So far we’ve had two video conference calls with our Advisory Board, to get them familiar with the project, get their feedback on our progress, and to start to gather information from them about their experiences with PAS in their respective states. We’re looking forward to collaborating with them as the project continues!
Read more about the project on the Personal Assistance Services (PAS) in Rural America project page.