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…

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,…

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…

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…

Disability service providers are often critical sources of guidance for people with intellectual and developmental disabilities (IDD) and their families. This study examined the extent to which these professionals were familiar with community resources that could help support the inclusion of people with IDD in valued experiences and help meet…

Families of young children with intellectual and developmental disabilities (IDD) experience challenges that may be exacerbated by challenging behavior (CB) and a lack of specialized support services. While waiting for services, families must implement strategies on their own, while taking arduous steps to access supports to eventually meet their…

Background: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users. Methods: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal…

Background: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities.…

Background: Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic. Method: We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between…