"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.

Examining the effects of home modifications on perceptions of exertion and safety among people with mobility disabilities.

BACKGROUND: People with mobility disabilities often have reduced stamina and limited energy, making daily activities physically demanding. Home modifications, such as installing grab bars and optimizing the environment, have the potential to reduce exertion and enhance safety in the home, enabling individuals to participate more in other activities. OBJECTIVE: The purpose of this study was to evaluate the effects of a home modification intervention on perceptions of exertion and safety among people with mobility disabilities. METHODS: The study utilized the Home Usability Program (HUP), which aims to improve accessibility, safety, and independence in participants' homes. Participants were recruited from four Centers for Independent Living (CILs) across the US and underwent a comprehensive assessment to identify consumer-directed, individualized home modifications. Surveys examining safety and exertion, in addition to qualitative interviews, were conducted to explore the impact of the intervention on participants' energy levels and feelings of safety. RESULTS: Analysis of pre-post measures and participant interviews revealed that the HUP intervention resulted in decreased exertion. Decreased exertion had positive outcomes, including increased time for other activities, improved socialization, enhanced independence, and the potential for engaging in activities outside the home. Additionally, the HUP intervention led to increased safety, which positively affected mental well-being and independence. CONCLUSIONS: Findings highlight the need for useable living environments that minimize physical strain and reduce exertion. Policy recommendations include prioritizing accessibility standards for housing, implementing individualized assessments for funding home modifications, providing financial assistance options, and allocating research funding for innovative solutions and technologies.

Personal Care Aides: Assessing Self-Care Needs And Worker Shortages In Rural Areas.

Previous research has documented shortages of personal care aides who provide Medicaid home and community-based services, but there are few detailed geographic data to determine the areas of greatest need and assess the availability of personal care aides nationwide. Using 2013-17 data from the American Community Survey and the Office of Management and Budget, we analyzed potential need for personal care aide services among adults and the supply of aides across the US. Areas with the highest percentages of adults with self-care disability were mainly in the South, and the gap between the potential need for personal care aide services and the aide supply was greatest in southern states. Within states, there were fewer personal care aides per 1,000 adults with self-care disability in the more rural and most rural areas than in the least rural areas. Wage and benefit increases, improved training and career opportunities, increased flexibility in state Medicaid policies on paid family caregiving, incentives and compensation for travel, and increased data collection and government tracking of workforce data could help boost the supply of personal care aides in rural America.

The intersection of disability status and rurality in American Indian/Alaskan Native communities.

There is a noteworthy gap in the literature regarding disability in rural American Indian/Alaskan Native (AI/AN) communities. This is significant, as many tribal lands are in rural areas and AI/AN individuals experience some of the highest prevalence rates of disability. To address this gap, we used descriptive statistics to examine the intersection of AI/AN and rurality in disability prevalence. Results indicate that rural counties have the highest prevalence of disability for both Whites and AI/ANs and that AI/ANs experience higher prevalence rates than Whites. However, further analysis indicates that county makeup (counties with high prevalence of AI/AN in the general population) moderated this relationship. Specifically, rural counties with populations of at least 5% AI/AN had lower prevalence of AI/AN disability compared to counties with populations with less than 5% AI/AN. Further analysis is needed to unpack this relationship, but results might suggest that AI/AN communities may feature resilient and protective attributes, moderating the amount of disability experienced in rural AI/AN communities.

Is the presence of home entrance steps associated with community participation of people with mobility impairments?

BACKGROUND: Little is known about how home entrances are related to community participation for people with mobility impairments. OBJECTIVE: This investigation explored how the need to navigate steps at the entrance of a home affects the community participation levels of people with mobility impairments. METHODS: This survey study used pre-measure data collected from three different samples. Participants were adults living independently in the community aged 18-94 years old who self-reported having a mobility impairment. Measures included the Brief Community Engagement Questionnaire to examine potential differential effects on the number of non-discretionary trips people make into the community (e.g., getting groceries, medications) versus the number of discretionary activities (e.g., socializing outside the home) people reported over seven days. RESULTS: People with mobility impairments were less likely to report a stepped entrance than people without MI, but when the entrance they use the most had steps they reported significantly higher exertion to use the entrance. The presence of steps had no effect on non-discretionary trips (p = .74), but was associated with 49% (p < .01) fewer discretionary activities reported by people with mobility impairment relative to those without MI. CONCLUSION: Steps at the home entrance of people with mobility impairment may be an important mediating factor in their level of participation. When researchers and practitioners evaluate interventions that aim to increase community participation of people with mobility impairment, they should control for the presence of steps at their home entrance.

Examining the effects of the COVID-19 pandemic on community engagement for people with mobility disabilities.

BACKGROUND: The COVID-19 pandemic and subsequent mandates upended community participation in the United States. People with disabilities were often more vulnerable to the adverse effects of the pandemic. Some areas of community participation affected for this population include employment, access to transportation, and social engagement and connection to others. OBJECTIVES: The purpose of this study was to explore the effects of the COVID-19 pandemic for people with mobility disabilities across a variety of topics related to community engagement including social interactions with family and friends, and access to caregivers, groceries, transportation, and employment. METHODS: A survey was administered to participants with mobility disabilities (N = 39). Participants were asked to elaborate on topic areas that they identified as being affected by the COVID-19 pandemic. Data analysis included descriptive statistics and a content analysis in search of themes from open-ended responses. RESULTS: Results indicate that access to family and friends was the most negatively affected topic related to participation, followed by access to food and groceries, transportation, employment, living independently, caring for others, and participating in the community in general. In response to these pandemic-related challenges, participants reported utilizing technology to connect with others and to get essential items delivered. CONCLUSIONS: Findings from this rapid research emphasize the need for emergency preparedness strategies, accessible and reliable resources related to technology use (e.g., Internet), and continued access to services for people with disabilities to maintain various aspects of community participation throughout the COVID-19 pandemic and in the future.

Effects of a consumer driven home modification intervention on community participation for people with mobility disabilities.

BACKGROUND: Community participation has become a key outcome measure for people with disabilities. This has resulted in a shift in researchers focus from the individual to the environment. However, research has focused primarily on participation barriers in the community with limited research examining the role of the home environment. For people with mobility disabilities the home environment is the starting place for community participation and research is needed to understand the relationship between the home and participation outcomes. OBJECTIVE: This study explores the effects of a consumer-driven home modification intervention on community participation for people with mobility disabilities. METHODS: We conducted a randomized control trial (from June 2017-April 2019) of the effects of a consumer-directed home modification intervention on community participation. The intervention, the Home Usability Program, was implemented with consumers at two different Centers for Independent Living (N = 195) and included a self-assessment of their home environment and implementation of a home usability change. RESULTS: The Home Usability program positively affected the community participation of people with mobility disabilities. Overall, intervention participants reported a 39.5% (p < .05) increase in social and recreational activities immediately following the intervention relative to the control group after controlling for health status and month when outcome data were collected. Six months after the intervention, this effect returned to baseline. CONCLUSIONS: Community-based, consumer-driven home modification programs show promise for improving community participation outcomes among people with disabilities, however, more research is needed to understand why results did not persist.

A usable home: A qualitative investigation of the relationship between home usability and community participation for people with disabilities.

BACKGROUND: People with mobility disabilities frequently have unmet needs in their home environment, which can lead to difficulties completing daily living activities. Therefore, it is important that homes are not just accessible, but rather useable, meaning that the home complements an individual's functional, social, and psychological needs. Although previous research has shown the importance of home usability for people with mobility disabilities on health outcomes, this research explores the relationship between home usability and community participation both inside and outside the home. OBJECTIVE: The objective of this study was to understand the perception of people with mobility disabilities on the relationship between community participation and home usability. METHOD: Twelve participants completed in-person semi-structured interviews to answer questions related to home usability and community participation. A content analysis was used to identify emergent themes. RESULTS: Results indicate that personal, social, and environment factors influence home usability and one's ability to participate in the community. CONCLUSION: Home usability is a complex concept that is intertwined with a person's ability to participate in their community. Useable homes can facilitate community participation, both inside and outside the home. In fact, home usability is a critical component of community participation, as homes are not only located in the community but are sites from which people access community. Further research is needed to understand the significance of this interaction and the impact of changing home usability on one's ability to participate in the community.

Understanding successful transition to independent living: A qualitative study of young adults with disabilities.

Background: Independent Living (IL) involves having choice and control over where and with whom one lives. People with disabilities are less likely to live independently than their peers without disabilities. Objective: The purpose of this study was to understand the perceptions of young adults with mobility disabilities regarding IL, how they define IL, and what advice they would give others considering living a more independent life. Method: Semi-structured interviews were conducted with six young adults with mobility disabilities who had successfully transitioned to living independently. A content analysis was used to identify emergent themes from the interviews. Results: Results indicate that participants had individualized perceptions of the definition of IL. Participants identified many barriers and facilitators to IL, including the physical layout of housing, available amenities, and social support. They recommended preparing for IL in advance and taking advantage of outside resources to enable a successful transition. Conclusion: Young adults with mobility disabilities define IL in various ways, which may have an impact on whether they consider their transition to IL successful. Findings can be used to guide recommendations for young people with disabilities to use to ensure a successful transition to IL.

Exploring Access to Independent Living Services for People With Disabilities Through a Transportation Network Analysis.

Centers for Independent Living (CILs) are nonresidential, nonprofit agencies that provide independent living services to people with disabilities across the nation. The services CILs provide are invaluable to people with disabilities living independently in the community. Accessing CIL services can be challenging for people with disabilities, particularly for individuals in rural areas. A geographic analysis called a transportation network analysis is one method for assessing access to CIL services. We draw on the distribution of CILs across the country and in two rural states (Montana and Arkansas) to assess levels of geographic access using travel distance along national and local road networks. Incorporating data from the American Community Survey allowed us to estimate the number of people with disabilities living within certain distance thresholds from CILs. We saw increased access in urban areas where there is a higher concentration of CILs, suggesting that people with disabilities in rural areas have limited access to CIL services. We explore how partnering with Area Agencies on Aging has the potential to expand access to services for people with disabilities in rural areas, highlighting the utility of geographic analysis in social service provision.

Life Starts at Home: Bathing, Exertion and Participation for People With Mobility Impairment.

OBJECTIVE: To investigate the relationship between perceived exertion while bathing/dressing/grooming and associations with social-recreational activities outside the home for individuals with mobility impairment (MI). DESIGN: A 2-study approach was used to examine data from the American Time Use Survey (ATUS) and primary data from the Health and Home Survey (HHS). The relationship between bathing/dressing/grooming and engagement in social-recreational activities was explored, as well as the role that exertion in the bathroom may play in participation in these activities. SETTING: General community setting. PARTICIPANTS: For the ATUS survey, participants (n=6002) included individuals who reported an MI. For the HHS, 2 mail-based recruitment methods were used to recruit a sample of individuals with MI (n=170) across 3 geographically diverse U.S. communities. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participation in social and recreational activities. RESULTS: People with MI (relative to those without MI) were less likely to report spending any time bathing/dressing/grooming on a given day, but spent more time when they did. People with MI reported higher exertion while bathing/dressing/grooming than people without. People with MI were less likely to leave the house or engage in social-recreational activities on days where they did not engage in bathing activities. People who reported greater exertion in the bathroom engaged in fewer social-recreational activities. CONCLUSIONS: Exertion in the bathroom may present a barrier to participation, indicating a relationship between exertion in the bathroom and social-recreational participation. Research that examines the impact of home modifications on exertion and participation is needed.

An investigation into the temporal scaling of community participation measurement.

PURPOSE: Community participation remains fundamental to contemporary models of disability. However, the effect of temporal scaling on the measurement of participation has not been explored. This study examined the similarities and differences between two different temporal scales (i.e., seven-day recall vs. in situ) on participation measurement. RESEARCH METHOD: We collected seven-day retrospective recall data using a self-report paper-and-pencil measure (i.e., the Brief Community Engagement Questionnaire) from a community-based sample (N = 525) of individuals who endorsed one or more items of the American Community Survey disability screening questions. A subset of these participants (n = 148) completed an ancillary ecological momentary assessment (EMA) study, which involved repeated, in situ, daily measurements of participation for two weeks. Corresponding participation items from each method were compared. RESULTS: Survey and EMA participation data were relatively consistent over repeated measurements, suggesting reliability across methods and temporal scaling. Consistency across activities was most evident for major activities that tend to require regular behavior (e.g., work and volunteering). Conversely, lower base rate behavior demonstrated less stability regardless of temporal resolution. CONCLUSION: Understanding the implications of temporal resolution for participation measures is valuable for advancing ecological participation models. Future research is needed to develop consensus on participation measurement and provide a solid basis for developing ecological models of participation.