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Rural and Urban Experiences in Personal Assistance Services
November 15, 2021
Personal Assistance Services (PAS) allow individuals with disabilities who need assistance with activities of daily living to remain in their own homes rather than unnecessarily moving into congregate living facilities, like nursing homes. By having access to in-home care providers who can assist with activities of daily living, consumers of PAS receive support for maintaining independence and staying connected to community.
While the need for PAS exists within all communities, researchers at RTC:Rural were interested in exploring whether or not there are different experiences among consumers living in rural and urban areas. The research team, led by Dr. Rayna Sage, sent 1,000 surveys to people with disabilities living in five states (AZ, AK, WI, TX) who use PAS through Consumer Direct Care Network, a company that assists people who choose to self-direct their care in their homes. The surveys went to consumers living in rural and urban areas in each of the five states to explore their experiences with PAS and living in their communities.
People who received the survey answered questions about both paid and unpaid PAS. Questions about paid PAS included experiences in hiring and scheduling workers, rates of pay, electronic visit verification (EVV), reasons for turnover, and how long it takes to find new workers. To frame consumers’ personal situations, all surveys also included questions about overall experiences in community participation, trouble doing activities, family and non-family supports, mental and physical health, and demographic information.
Dr. Sage explained, “Given what our advisory board members and other disability advocates had told us about the increased challenges faced by rural consumers compared to those who live in urban places, we were surprised to find no differences between the groups in social wellbeing, satisfaction with services, experiences with worker turnover, and a variety of health characteristics, including pain, fatigue, depression, anxiety, sleep difficulties, and frequency of poor physical and mental health. We know that people in rural places do not have the same levels of access to services that support independent living as urban consumers, but that difference did not seem to impact overall of well-being.”
Findings from the survey did uncover some differences between rural and urban consumers, however. Notably, the first is rural survey respondents were significantly more likely than urban respondents to report having trouble doing the activities they wanted to do. This included leisure and family activities, as well as house work or doing activities with friends. Additionally, rural consumers reported having more non-family social supports beyond PAS like neighbors, fellow church members, and friends compared to urban consumers. In fact, half of the rural respondents reported having “some” or “a lot” of non-family support, compared to just a third of urban respondents.
While people with disabilities reported many similar experiences with PAS in both rural and urban areas, the reported contrasts may indicate differences in access due to environmental barriers within the communities. For example, rural consumers reported experiencing more trouble doing desired activities despite having more non-family supports than urban respondents. This leads to further questions of why and if common environmental barriers like lack of public transportation and inaccessible buildings may play a role in consumers’ reported experiences. It may also be the case that the non-family supports help offset difficulties accessing services, thus why the research team did not see differences in factors such as satisfaction with personal assistance services.
To address these questions and more, the research team is currently recruiting study participants who live in rural places and use personal assistance services to do phone or video interviews. Visit the Rural Personal Assistance Project page to learn how to participate!