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The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed waiver program who used personal assistance services. Results indicated that the caregiver's satisfaction with the personal support worker, self-efficacy in managing personal support workers, and mental health varied significantly based on type of personal support worker hired. Also, the physical health and daily choice making of the adults with disabilities differed significantly by type of personal support worker hired.

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Aim: Consumer-directed long-term care services have grown dramatically over the past decade, both in the US and internationally. Flexibility in hiring, including the ability to hire family and friends, is a key determinant of interest in consumer direction. This study examined the differential experiences and outcomes for people with intellectual and developmental disabilities (ID/DD) and their families receiving consumer-directed services based on the type of personal support worker (PSW) hired (family, friends, agency staff, non-agency staff). Method: The data includes responses from written surveys sent to families in the Illinois Adult Home Based Support Services Program (a Medicaid waiver program) along with interviews conducted with adults with ID/DD in the program. The measures filled out by 446 families using the Family Satisfaction with Consumer Directed Supports survey (and consumer interview) were used for analysis of satisfaction with the PSW, self-efficacy in hiring and managing the PSW, and the self-determination and community participation of the adults with ID/DD.

Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD.