Rehabilitation Research and Training Center (RRTC) on Family Support

BackgroundThe prevalence of disability in rural areas is higher than in urban areas, and this disparity has recently widened (Sage et al., 2019; Zhao et al., 2019). People with disabilities make up 18.0 percent of the total civilian noninstitutionalized population living in the most rural communities. By comparison, the prevalence of disability in the most urban areas is 12.1 percent (Leopold & Greiman, 2022). People with disabilities and people living in rural areas are highlighted in Executive Order 13985 as underserved populations who have been systematically denied full opportunity to participate in aspects of economic, social, and civic life. NIDILRR aims to address barriers to such participation with a Rehabilitation Research and Training Center to generate new research-based knowledge and interventions to support improved health, employment, or community living outcomes among people with disabilities living in rural areas.  People with disabilities who live in rural areas face structural, environmental, and sociodemographic challenges to satisfactory and healthy community living that are often greater than those experienced by their urban counterparts.  Compared to those living in urban areas, people with disabilities living in rural areas typically have less access to public transportation (Bezyak et al., 2020; Myers et al., 2022) and accessible and affordable housing (Greiman & Ravesloot, 2016; Meschede et al., 2022; von Reichert, 2022). They also have fewer employment resources and opportunities (Erikson et al., 2018; Ipsen et al., 2019; Ipsen & Stern, 2020), and greater difficulty accessing necessary physical and mental health care (Chong et al., 2022; Dassah et al., 2018). Compared to people with disabilities in urban settings, people with disabilities living in rural areas also often have difficulty running basic errands, and accessing the resources they need (Sage et al., 2022b), including personal assistance services (Chapman et al., 2022; Sage et al, 2022a, 2022b).  Moreover, preliminary evidence suggests that these disparities may be worse for people with disabilities from racial/ethnic minority groups (Mashinchi et al, 2022; Sage, Ward, Myers, and Ravesloot, 2018). Recent research has highlighted the interconnectedness of many of the barriers and challenges experienced by rural-dwelling people with disabilities. This research has demonstrated how the combined effects of these barriers result in outcome disparities for rural residents with disabilities, across all the domains in which NIDILRR funds research: health and function, employment, and community living and participation. For example, rural-dwelling people with disabilities who face barriers to running regular errands and who experience problems finding and keeping personal care assistants are at greater risk for not having their basic needs met (Sage et al., 2022b).  Not having basic needs met can lead to worsening health and mental health outcomes (Cree et al., 2020; Chong et al., 2022), loss of ability to work (Bezyak, et al., 2020; Cochran, 2020), increased likelihood of isolation and loneliness (Repke and Ipsen, 2022), and, limited opportunities and ability to engage in the community (Sage et al., 2022b). Similarly, because the most affordable housing is often in areas that lack accessible transportation options, out of financial necessity people with disabilities frequently must forgo transit access for housing (Washington Disability Mobility Initiative, Disability Rights Washington, 2021).  In turn, the lack of transportation limits community access (e.g., employment, health care access, and social activities), especially for non-drivers (Myers, Ipsen, and Standley, 2022) and those living in small towns/rural communities that are more likely offer only fixed-route scheduling (Marsel & Choi, 2021). Additionally, these constraints are exacerbated by limited accessible housing stock (Greiman & Ravesloot, 2016).People with disabilities living in rural areas experience a wide range of additional barriers to positive health, employment, and community living outcomes. These include but are not limited to lack of high-speed internet and related digital services in rural areas (Dow-Fleisner et al., 2022; Scanlan, 2022), poor food and nutritional options in many rural communities (Schwartz, Buliung, & Wilson, 2019), shortages of health care facilities (Dassah et al, 2018), and shortages of health care providers (Health Resources and Services Administration, 2023), especially those who are knowledgeable about the health care needs and experiences of people with disabilities (Dassah et al, 2018). More research is needed in each of NIDILRR’s domains to provide new knowledge about and to empirically measure the extent of these challenges and disparities experienced by people with disabilities living in rural areas. This new knowledge is necessary to improve the programs and systems that provide support and services to people with disabilities and their families in rural areas. Specifically, there is a need for additional research to identify and test program, policy, and systems interventions that can lead to improved employment, health and function, and community living and participation outcomes for individuals with disabilities in rural areas.  ReferencesBezyak, J.L., Sabella, S., Hammel, J., McDonald, K., Jones, R.A., Barton, D. (2020). Community participation and public transportation barriers experienced by people with disabilities. Disability and Rehabilitation, 42(23):3275e3283. https://doi.org/10.1080/09638288.2019.1590469.Chapman, S.A., Greiman, L., Bates, T., Wagner, L.M., Lissau, A.,Toivanen-Atilla, K., and Sage, R. (2022). Personal Care Aides: Assessing Self-Care Needs and Worker Shortages in Rural Areas.  Health Affairs, 41, No. 10, 1403-1412.Chong, N., Akobirshoev, I., Caldwell, J., Kaye, H. S., & Mitra, M. (2022). The relationship between unmet need for home and community-based services and health and community living outcomes. Disability and Health Journal, 15(2), 101222.Cochran, A. L. (2020). Impacts of COVID-19 on access to transportation for people with disabilities. Transportation research interdisciplinary perspectives, 8, 100263.Cree, R. A., Okoro, C. A., Zack, M. M., & Carbone, E. (2020). Frequent mental distress among adults, by disability status, disability type, and selected characteristics—United States, 2018. Morbidity and Mortality Weekly Report, 69(36), 1238.Dassah, E., Aldersey, H., McColl, M. A., & Davison, C. (2018). Factors affecting access to primary health care services for persons with disabilities in rural areas: a “best-fit” framework synthesis. Global health research and policy, 3(1), 1-13.Disability Rights Washington. Transportation Access for Everyone: Washington State. (2021). Available online at: https://indd.adobe.com/view/dc0a72c0-2a05-4397-a17d-3aa0ecce4923 (accessed October 15, 2022).Dow-Fleisner, S. J., Seaton, C. L., Li, E., Plamondon, K., Oelke, N., Kurtz, D., ... & Rush, K. L. (2022). Internet access is a necessity: a latent class analysis of COVID-19 related challenges and the role of technology use among rural community residents. BMC Public Health, 22(1), 1-11.Erickson, W. A., VanLooy, S., von Schrader, S., & Bruyère, S. M. (2018). Disability, income, and rural poverty. Disability and vocational rehabilitation in rural settings: Challenges to service delivery, 17-41.Greiman L, Ravesloot C. Housing characteristics of households with wheeled mobility device users from the American Housing Survey: do people live in homes that facilitate community participation? Community Dev. 2016;47(1): 63e74. https://doi.org/10.1080/15575330.2015.1108989.Health Resources and Services Administration (2023). Designated Health Professional Shortage Areas Statistics. Available at: https://data.hrsa.gov/Default/GenerateHPSAQuarterlyReportIpsen C, Goe, R, Bliss S. (2019). Vocational Rehabilitation (VR) funding of job development and placement services: Implications for rural reach. Journal of Vocational Rehabilitation, 51(3):313-324. doi: 10.3233/jvr-191048.Ipsen, C., & Stern, S. (2020). The effect of ruralness on vocational rehabilitation applications.  Journal of Vocational Rehabilitation, 53(1), 89-104.Leopold, A., & Greiman, L. (February, 2022). America at a Glance: An Update on Rural-Urban Differences in Disability Rates. Missoula, MT: The University of Montana Rural Institute for Inclusive Communities. Retrieved from: https://scholarworks.umt.edu/ ruralinst_independent_living_community_participation/80/Maisel, J. L., Choi, J., & Ranahan, M. E. (2021). Factors Influencing Fixed-Route Transit Decision-Making: Exploring Differences by Disability and Community Type. Journal of Public Transportation, 23(1), 1-15.Mashinchi, G. M., Hicks, E. C., Leopold, A. J., Greiman, L., & Ipsen, C. (2022). The intersection of disability status and rurality in American Indian/Alaskan Native communities. Rural Disability and Community Participation, 16648714, 38.Meschede, Trivedi, K., & Caldwell, J. et al. (2022).  Severe housing and neighborhood inequities of households with disabled members and households in need of long-term services and supports. Housing and Society, DOI: 10.1080/08882746.2022.2065614. Myers, A., Ipsen, C., and Standley, K. (2022) Transportation Patterns of Adults With Travel-Limiting Disabilities in Rural and Urban America. Frontiers in Rehabilitation Sciences 3:877555. doi: 10.3389/fresc.2022.877555Repke, M. A., & Ipsen, C. (2020). Differences in social connectedness and perceived isolation among rural and urban adults with disabilities. Disability and health journal, 13(1), 100829.Sage, R., Standley, K., & Ipsen, C. (2022a). " Everything is a Mess. I'm Just Trying to Survive It.": Impacts of COVID-19 on Personal Assistance Services. Journal of Health Care for the Poor and Underserved, 33(4), 1844-1864.Sage, R., Standley, K., and Mashinchi, G.M. (2022b). Exploring Metro and Non-metro Differences in Satisfaction With Services and Community Participation Among Low-Income Personal Assistance Service Users. Frontiers in Rehabilitation Sciences, 3: 876047. doi: 10.3389/fresc.2022.876047Sage, R., Standley, K., & Mashinchi, G. M. (2022c). Intersections of Personal Assistance Services for Rural Disabled People and Home Care Workers' Rights. Frontiers in Rehabilitation Sciences, 62.Sage, R., Ward, B., Myers, A., & Ravesloot, C. (2018). Transitory and enduring disability among urban and rural people. The Journal of Rural Health, 35(4), 460-470.Scanlan, M. (2022). Reassessing the disability divide: unequal access as the world is pushed online. Universal Access in the Information Society, 21(3), 725-735.Schwartz, N., Buliung, R., & Wilson, K. (2019). Disability and food access and insecurity: A scoping review of the literature. Health & place, 57, 107-121.von Reichert, C. (2022). Disability and the household context: Findings for the United States from the public Use Microdata Sample of the American Community Survey. Frontiers in Rehabilitation Sciences. 3:875966. doi: 10.3389/fresc.2022.875966.Zhao, G., Okoro, C. A., Hsia, J., Garvin, W. S., & Town, M. (2019). Prevalence of disability and disability types by urban–rural county classification—US, 2016. American journal of preventive medicine, 57(6), 749-756. Priority The Administrator of the Administration for Community Living (ACL) establishes a priority for an RRTC on Disability in Rural Areas. This RRTC must conduct research, knowledge translation, training, dissemination, and technical assistance activities to improve outcomes among people with disabilities who live in rural areas, including those from racial and ethnic minority groups. The RRTC must focus its research on one or more specific stages of research. If the RRTC is to conduct research that can be categorized under more than one of the research stages, or research that progresses from one stage to another, those stages must be clearly specified and justified. These stages and their definitions are provided in this section of the notice. The RRTC must also focus its research activities on topics that fall under at least one of the outcome domains identified in NIDILRR's Long Range Plan for Fiscal Years 2018-2023 (78 FR 20299): health and function, employment, or community living and participation. RRTC applicants must demonstrate in their original application that people with disabilities from diverse racial and ethnic communities will be included in proposed samples in sufficient numbers to generate knowledge and products that are relevant to the racial and ethnic diversity of the population of people with disabilities being studied. Applicants must describe and justify the planned racial and ethnic distribution of people with disabilities who will participate in the proposed research projects. Under this priority, the RRTC must be designed to contribute to the following outcomes: (A) New knowledge about the experiences and outcomes of people with disabilities who live in rural areas, relative to those of urban residents with disabilities. The RRTC must contribute to this outcome by:(i) Identifying, justifying, and using appropriate definitions of rural and urban communities. (ii) Collecting and analyzing new data or analyzing existing data to produce statistical information about a wide range of opportunities, challenges, and outcomes for rural residents with disabilities. In conducting this statistical work, the RRTC must seek innovative ways of collecting and analyzing data focused on people with disabilities in rural areas. These innovations may include use of administrative data or other new data sources. (iii) Collaborating with the RRTC on Disability Statistics to conceptualize analyses and disseminate statistics regarding people with disabilities in rural areas. (B) New evidence-based interventions designed to improve outcomes for people with disabilities living in rural areas. The RRTC must contribute to this outcome by: (i) Conducting research to:a. Identify or develop an intervention or interventions designed to address one or more environmental factors affecting outcomes among people with disabilities living in rural areas. The intervention or interventions may be designed for implementation at the individual, program, system, or policy level. b. Test the efficacy of the intervention or interventions identified or developed under (B)(i)(a) to improve outcomes among people with disabilities living in rural areas. (ii) Using findings generated by new knowledge generated under paragraph (A) to inform the research toward evidence-based interventions conducted in paragraph (B). (C) Greater societal and service delivery capacity to promote positive outcomes for people with disabilities in rural areas. The RRTC must contribute to this outcome by:(i) Involving people with disabilities who live in rural areas, including members of racial/ethnic minority groups, in planning and implementing the RRTC’s activities, and in evaluating the RRTC’s work. (ii) Serving as a national resource center for people with disabilities living in rural areas, their families, service and support providers, researchers, policymakers, and other stakeholders. (iii) Providing information and technical assistance to service providers, people with disabilities living in rural areas and their representatives, researchers, and other key stakeholders.(iv) Providing training, including graduate, pre-service, and in-service training to rehabilitation service providers and other disability service providers, to facilitate more effective delivery of services to people with disabilities living in rural areas. This training may be provided through conferences, workshops, public education programs, in-service training programs, and similar activities. (v) Disseminating research-based information through peer-reviewed journals, and materials appropriate for diverse audiences, including rural residents with disabilities, policymakers, and other stakeholders. (D) The RRTC must ensure that all materials, websites, and information and technology tools and products that it plans to develop or maintain are accessible, and that electronic materials are produced in full compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d). For websites this compliance currently requires meeting Web Content Accessibility Guidelines (WCAG) 2.0/2.1 AA success criteria. RRTC applications must demonstrate an ability to meet these requirements. Definitions - Stages of Research: Exploration and discovery means the stage of research that generates hypotheses or theories through new and refined analyses of data, producing observational findings and creating other sources of research-based information.  This research stage may include identifying or describing the barriers to and facilitators of improved outcomes of individuals with disabilities, as well as identifying or describing existing practices, programs, or policies that are associated with important aspects of the lives of individuals with disabilities.  Results achieved under this stage of research may inform the development of interventions or lead to evaluations of interventions or policies.  The results of the exploration and discovery stage of research may also be used to inform decisions or priorities.Intervention development means the stage of research that focuses on generating and testing interventions that have the potential to improve outcomes for individuals with disabilities.  Intervention development involves determining the active components of possible interventions, developing measures that would be required to illustrate outcomes, specifying target populations, conducting field tests, and assessing the feasibility of conducting a well-designed intervention study. Results from this stage of research may be used to inform the design of a study to test the efficacy of an intervention.Intervention efficacy means the stage of research during which a project evaluates and tests whether an intervention is feasible, practical, and has the potential to yield positive outcomes for individuals with disabilities.  Efficacy research may assess the strength of the relationships between an intervention and outcomes and may identify factors or individual characteristics that affect the relationship between the intervention and outcomes.  Efficacy research can inform decisions about whether there is sufficient evidence to support “scaling-up” an intervention to other sites and contexts.  This stage of research may include assessing the training needed for wide-scale implementation of the intervention and approaches to evaluation of the intervention in real-world applications.Scale-up evaluation means the stage of research during which a project analyzes whether an intervention is effective in producing improved outcomes for individuals with disabilities when implemented in a real-world setting.  During this stage of research, a project tests the outcomes of an evidence-based intervention in different settings.  The project examines the challenges to successful replication of the intervention and the circumstances and activities that contribute to successful adoption of the intervention in real-world settings.  This stage of research may also include well-designed studies of an intervention that has been widely adopted in practice, but lacks a sufficient evidence base to demonstrate its effectiveness.