"Too few, too far away, for what is paid": Consumer voices about the personal assistance worker crisis.

BACKGROUND: The growing gap between demand and supply of personal assistance service (PAS) workers presents a significant burden to those who use services. The intensity and duration of hardship is growing, and consumer voices need to be heard and incorporated into the national dialogue. OBJECTIVE: This paper explores how PAS worker shortages manifest themselves in the daily lives of people with disabilities using or needing PAS services in the United States. METHODS: We used thematic coding of qualitative data from the 2022 National Survey on Health and Disability. Respondents (n = 330) provided open-ended responses to the prompt "Briefly explain the types of problems or issues you have had finding PAS or support workers." RESULTS: Three themes emerged regarding consumer perspectives and experiences with worker shortages (1) low pay, few benefits, and undervalued work, (2) demanding working conditions and logistics, and (3) low quality workers. In combination, these themes informed a fourth theme (4) impacts for PAS consumers characterized by substandard care and additional stress and workload for those who direct their own care. CONCLUSIONS: As a society, we have taken steps to increase opportunities for community living and created policies to uphold choice and independence for people with disabilities. In the absence of an adequate workforce to support these policies, however, we convey an empty promise. Without tangible steps to resolve these problems at the policy level, such as improved worker pay and protections, hope for resolution to these issues remains elusive.

Participatory curriculum development for health and independent living for disabled people: a qualitative study of participant experiences.

Participatory curriculum development is an approach that draws on participatory research philosophy by engaging members of intended audiences in the curriculum development process. This is a fairly new approach to curriculum development, which has seldom been applied in health promotion and, to our knowledge, has not previously been used to develop curriculum with disabled people. In this project, participatory curriculum development was used to both develop a new curriculum and revise an existing curriculum for in-person, web-based delivery. We engaged in this process with Center for Independent Living staff members, twelve of whom we interviewed post-engagement. We assessed the development process for equitable engagement and sharing of power and identified three relevant main themes: learning, collaborating, and empowering. Our project partners engaged collaboratively in project development and believed the curriculums would empower their intended end-users. However, they desired greater sharing of power during the process to create an equitable experience.

"Just trying to adjust to the new reality that seems to be changing every hour": Lessons learned from nation-wide peer meetings on COVID-19 with rural disability service providers.

At the onset of the COVID-19 pandemic, providers of independent living services for rural disabled people were forced to adapt how they conducted their operations. This study is a primary analysis of data based on transcripts from eight meetings of a nationwide network of service providers, who met virtually to provide peer support during the unfolding pandemic. We used qualitative thematic analysis to understand the ways these service providers adapted to address the needs of rural disabled people during the pandemic. Each meeting was attended by Center for Independent Living (CIL) staff members (n = 40 to 150 participants per meeting). We identified four main themes describing organizational adaptations: 1) Providing core services remotely, 2) Regular check-ins, 3) Virtual group meetings became a mainstay of service provision, and 4) Barriers and solutions to virtual connectivity in rural areas. Although this was a predominantly challenging time, CIL staff identified ways their adaptations were beneficial. These included creating new ways to connect, reaching more people with disabilities, and cutting down on commuting time to provide services. CIL staff intended to continue using their adapted strategies and platforms for providing services, and thus projected these benefits would be long-lasting.

Hopefulness and meaning in adults with disabilities' physical activity: A qualitative study.

PURPOSE/OBJECTIVE: The body of knowledge regarding the processes involved in changing physical activity behaviors in people with disabilities is very limited. This qualitative study is a follow-up to a pilot study on an individualized health coaching intervention for adults with any type of disabilities, titled Health My Way, that used a disability-specific health-promotion curriculum. In the original study, we found that participants in the health coaching intervention experienced improved health-promoting behavior, notably physical activity. In the current follow-up study, we examined the relationships among participants' personal sense of meaning and hope and the physical activity change process. RESEARCH METHOD/DESIGN: Participants (n = 12) were a subset of participants from the original pilot study, who were adults with any type of disability, recruited by convenience sampling. These participants completed in-depth interviews to explore possible interactions among health coaching, health behavior changes (including physical activity), meaning, and hope. The curriculum-based health coaching intervention involved weekly, individual coaching for up to 12 weeks. We used thematic analysis to analyze interview data. RESULTS: We identified three main themes: tapping into sources of meaning, increasing hopefulness, and hopelessness combined with lack of meaningful engagement. CONCLUSIONS/IMPLICATIONS: In the context of health coaching for people with disabilities, identifying sources of personal meaning appears to be necessary for the initial motivation for goal-directed action regarding physical activity. Subsequent generation and maintenance of hope appear to be vital for maintaining physical activity in this population. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Health Coaching for People With Disabilities: An Exploratory Mixed-Methods Study.

PURPOSE: To expand the reach of health-promotion efforts for people with disabilities, we piloted a health-coaching intervention with a disability-specific curriculum. We evaluated the intervention's effects on health-related quality of life and health behavior change. DESIGN: Mixed-methods research design using pre-post measures and semi-structured interviews. SETTING/PARTICIPANTS: A convenience sample of community-dwelling adults with disabilities (n = 39). INTERVENTION: Participants engaged in a curriculum-based health coaching intervention, titled Health My Way, which used weekly one-on-one coaching for up to 12 weeks. METHODS: Participants completed pre- and post-intervention surveys including questions from the Health-Related Quality of Life (HRQOL) measure and the Health-Promoting Lifestyle Profile II. A subset of participants completed in-depth interviews to explore how health coaching influences health behavior change (n = 12). RESULTS: We found statistically significant effects on poor-health days due to physical and mental health, and effects on physical activity. We saw additional effects with engagement in relevant curriculum content. Qualitative main themes (tailoring of information, enthusiasm for personally meaningful goals, and social support) indicated processes by which health coaching supported health behavior changes. CONCLUSIONS: The results of this pilot study indicate health coaching appears to be effective for improving HRQOL and health behavior, especially physical activity, for people with disabilities. Apparent key factors include enthusiasm for personally meaningful goals, having tailored information, and social support.

"Patiently waiting": How do non-driving disabled adults get around in rural America?

Most mobility needs in rural America are primarily met via driving. Yet many disabled adults cannot drive. Lack of adequate public transportation in rural areas exacerbates transportation-related disparities. We interviewed 33 non-driving disabled adults throughout the U.S. to explore how they get around in their rural communities. Research questions primarily focused on the relationships between transportation, community participation, healthcare access, and social capital. We used thematic analysis to identify themes related to our research questions. In general, interviewees described a dearth of public transportation options. Even if public transit were available, other issues limited use such as inaccessibility, expenses, or schedules and routes. Many participants also described getting rides from others. While this was a critical component of many individuals' daily travel, it also introduced a layer of dependency and social pressure that otherwise would not exist with more independent means of transportation. Policy implications include improved public transit funding and strategies to promote universal auto access.

"Everything is a Mess. I'm Just Trying to Survive It.": Impacts of COVID-19 on Personal Assistance Services.

In the United States, eight million people have disabilities related to self-care (having serious difficulty with bathing and dressing). Of these, approximately 2.3 million receive paid personal assistance services (PAS) to assist with activities of daily living. The National Survey on Health and Disability asked a series of questions about the impacts of COVID-19 for disabled people including disruptions in PAS. We used data from an open-ended question "How did you manage without the help you needed in your home?" to bring light to both the importance of, and vulnerabilities associated with, receipt of PAS. Themes from qualitative responses (n = 108) included (1) causes of unmet need, (2) consequences of unmet need, and (3) adaptations to overcome the loss of PAS. Results provide compelling evidence about the importance of the personal care attendant workforce and needed policies to address worker shortages to support community-based living options.

Exploring Metro and Non-metro Differences in Satisfaction With Services and Community Participation Among Low-Income Personal Assistance Service Users.

Personal assistance services (PAS) are supports provided by workers to assist disabled people with their activities of daily living. Access to in-home PAS allows people who need assistance with these activities to live in their own homes and communities, rather than moving to congregate living facilities. Because metro and non-metro areas differ in many ways, we explored the following research questions: (1) Are there differences between non-metro and metro PAS users?, (2) What factors are associated with satisfaction with services?, and (3) What factors are associated with satisfaction with community participation?. We randomly surveyed PAS consumers in five states about their experiences with PAS. To answer the first question, we compared metro or non-metro consumers using independent samples t-tests. We found few statistically significant differences between metro and non-metro respondents. To answer the second and third research questions, we conducted linear regressions predicting our dependent variables. In terms of satisfaction with services, our model explained very little of the variance, other than finding that being partnered or married was significantly, positively related to satisfaction with services. In predicting satisfaction with community participation, the model explained about a quarter of the variance, with having fewer disabilities and higher health status predicting more satisfaction. This research indicates that there are few differences between metro and non-metro low-income PAS consumers and that more research is needed to understand what factors are related to satisfaction with services and community participation in this population.

Intersections of Personal Assistance Services for Rural Disabled People and Home Care Workers' Rights.

It is very difficult to find and keep workers to provide home-based care for disabled people, especially in rural places. There is a tension between the rights of disabled people and the rights of home-based personal care workers. In this brief review, we explore the intersections of historical and social forces that shaped federal-level policies for both disability rights and the rights of personal care workers, as well as the current state of the policies. This paper provides a narrow focus on federal policies relevant to both groups, while also considering how the urbancentric nature of advocacy and policymaking has failed to address important issues experienced by rural people. In addition to briefly reviewing relevant federal policies, we also explore sources of support and resistance and how urbanormativity, ableism, and sexism intersect to influence how the needs of people with disabilities and their personal care workers are conceptualized and addressed. We conclude with recommendations for how to better address the needs of rural people with disabilities using home-based personal care services and the workers who provide them.

Transportation Patterns of Adults With Travel-Limiting Disabilities in Rural and Urban America.

Introduction: Lack of transportation is a significant barrier to community participation for many disabled adults. Living in a rural area introduces additional transportation barriers, such as having to travel long distances to access services or socialize, and limited public transit options. While the importance of transportation access is clear, the mix of different transportation options used by people with disabilities to participate in their communities is less understood, particularly among those who do not or cannot drive. Methods: We used data from the 2017 National Household Travel Survey to explore transportation behaviors among disabled adults in rural and urban areas and by four regions across the United States. We explored differences by transportation modalities (e.g., driver, passenger, public transportation, taxi/uber, walk) and trip purposes (e.g., social, independent living, healthcare, work). Our sample included 22,716 adults with travel-limiting disabilities. Results: Several geographic differences emerged among non-drivers. Rural non-drivers were less likely to take any trip, particularly for social activities, and reported using less public transportation or walking/rolling than urban non-drivers. Further, respondents from the Northeast were more likely to report using public transportation and walking/rolling options, relative to the Midwest, South, and West. Overall, disabled rural adults reported lower odds of giving up driving, even after controlling for socio-demographic and health characteristics. Discussion: These findings highlight the relative importance of different transportation modalities for participating in activities and the continued reliance upon personal vehicles, either as a driver or passenger, especially among rural disabled residents. Potential policy insights are discussed.

"Less time committed to care": Beliefs About Electronic Visit Verification Among Adults Using Home-Based Personal Assistance Services.

In 2016, the federal government mandated that all Medicaid-funded personal assistance services be documented through an Electronic Visit Verification (EVV) program by January 2020. Most states have asked for extensions due to difficulties in implementation and strong opposition from consumer advocacy groups. Qualitative research has documented various concerns of consumers and consumer advocates. In 2020 (prepandemic), we conducted a mail survey of consumers which included questions regarding familiarity with, and attitudes toward, EVV. Respondents could also write in qualitative comments. This paper explores consumers' perceptions of EVV using four survey items related to fraud, benefits, concerns, and protection and 25 qualitative comments related to these topics. We found that respondents agreed most with statements focused on both concerns with EVV interfering with their care and help in reducing fraud. In general, the most common quantitative response to the statements was indifference. Qualitative comments centered on concerns about EVV interfering with services in a variety of ways, although there were also comments related to EVV being protective, beneficial, or helpful in reducing fraud. We also identified a new category in the qualitative comments about consumers' beliefs that the work done by their personal assistance service workers is underrecognized. We recommend that policy makers and service organizations continue to collect information from consumers as EVV is implemented and altered to both meet the expectations of the legislation and the needs of consumers and workers.