The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of…

Although services are critical for many transition-aged youth, it is unclear the extent to which autistic youth participate in decisions about their services. By exploring the perceptions of autistic youth about their role in services, interventions can be developed to improve their participation. In this study, we interviewed 43 transition-aged…

Systems navigation can be difficult, especially for low-resourced families (i.e., families who are "low income" or meet one of the following indicators: mother has a high school diploma or less; primary caregiver is unemployed; or the family receives governmental assistance). Navigators may help families access services; however, the…

The COVID-19 epidemic caused disruption and dislocation in the lives of people with disabilities, their families, and providers. What we have learned during this period regarding the strengths and weaknesses of the service system for people with disabilities should provide a roadmap for building a more robust and agile system going forward. Based…

We propose a justice-based partnership between employees and family members as a means to create services and support systems for people with intellectual disability, enhancing quality of life indicators. More specifically, we examine the links from mutual intergroup justice to three outcomes reported by family members: satisfaction with the…

Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services…

Supporting families who have family members with intellectual and developmental disabilities (IDD) as they move through life is a critical need (Reynolds, Palmer, & Gotto, 2018). The phrase, "supporting families," juxtaposes the typical family support paradigm in response to the ongoing shrinkage of federal and state dollars and the…

The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer…

The health status of 206 female caregivers supporting adults with intellectual and developmental disabilities at home was investigated using objective (i.e., presence of chronic health conditions and activity limitations) and subjective (i.e., self-perceived health status) health measures compared with those of women in the general population in 2…

Longitudinal impacts of a consumer-directed support program that provides families with an individualized budget were studied at three points in time over a 9-year period: Time 1 (1991), Time 2 (1995), and Time 3 (2000). At Time 3, families in the program were also compared with families on the waiting list. Over time, families in the program…