Evidence suggests that integrated support, combining both natural and formal supports, is often essential for individuals with developmental disabilities to achieve their preferred quality of life. However, studies are limited on how to organize supports so that people with developmental disabilities and their families find a balance between…

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…

Background: Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the…

Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study's aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for…

Developmental support agencies support many adults with intellectual disabilities in the community. Unfortunately, these adults often exhibit high rates of challenging behaviour, which present significant pressures on these service providers. Agencies need to develop effective means of increasing their capacity to provide quality support. Previous…

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…

Background: Adults with intellectual and developmental disabilities and their families have high need for support services. This study assessed resource utilization among caregivers of intellectual and developmental disabilities and other conditions. Methods: We assessed 366 caregivers of adults with intellectual and developmental disabilities,…

Understanding service providers ' perceptions of family-centred care (FCC) is essential to improve the processes and outcomes of children's services in early intervention. A systematic review and meta-analysis of the research on the Measure of Processes of Care-Service Provider (MPOC-SP) were performed to determine the extent service-providers of…

Given the critical shortage of community providers and a growing aging population of individuals with intellectual and developmental disabilities, siblings are expected to provide caregiving for their brothers and sisters with intellectual and developmental disabilities. However, family support and disability policies often do not acknowledge…

People with intellectual and developmental disabilities (IDD) are overrepresented in the criminal legal system. Further, many people with IDD move between large state-run institutions and the criminal legal system. In 2019, for example, 29% of people moving into large state-run institutions came from jails, prisons, and other correctional…

Background: Self-directed supports (SDS) are a model of disability service delivery that focuses on supporting increased decision-making authority and budget autonomy for people with disabilities and their families. This study identifies supervisory and administrative staff's perspectives within a self-directed, individualised budgeting programme…

"Promoting choice" is a defining value guiding Positive Behavior Support (PBS) models for serving individuals with intellectual and/or developmental disabilities (IDD). The ability to make independent choices is of paramount importance to self-advocacy and self-determination. Promoting choice is also an essential commitment of…

Although special education advocates have played an essential role in obtaining rights for individuals with disabilities, there is still much unknown about their motivations, challenges, roles, and the meaning they made from their experiences. Research into Saudi parent advocates of children with disabilities and their complex daily life issues…

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…

In the United States, families of young children with developmental disabilities may encounter many challenges and obstacles when advocating for their child's developmental services and supports. Research has highlighted that the transition from early intervention services to school-based services is especially confusing and difficult for many…