Families of Individuals With Intellectual and Developmental Disabilities: Policy, Funding, Services, and Experiences

Abstract

Families are critical in the provision of lifelong support to individuals with intellectual and developmental disabilities (IDD). Today, more people with IDD receive long-term services and supports while living with their families. Thus, it is important that researchers, practitioners, and policy makers understand how to best support families who provide at-home support to children and adults with IDD. This article summarizes (a) the status of research regarding the support of families who provide support at home to individuals with IDD, (b) present points of concern regarding supports for these families, and (c) associated future research priorities related to supporting families.

Individual, parent and social–environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder

“…Parents may struggle to retain their previous role of ‘decision‐makers’ (Hewitt et al . ). There may be a tendency, from parents, to protect their offspring leading to reduced choicemaking and self‐determination (Powers et al .…”

Parent Involvement in Meaningful Post-School Experiences for Young Adults With IDD and Pervasive Support Needs

“…In fact, positioning individuals with disabilities and their families as experts on the lives they wish to lead and the supports they need to do so was identified as a research PARENT INVOLVEMENT IN POST-SCHOOL EXPERIENCES 6 priority in this area (Hewitt, Agosta, Heller, Williams, & Reinke, 2013). We previously published a study (Author, 2015) that examined parent perceptions of what their young adult children with pervasive support needs and limited functional communication were doing upon exiting from special education.…”

Community Living and Participation: Embracing the Complexity and Forging Forward

“…Harnessing such instruments could provide direct feedback on which state policies and service configurations have positive or negative effects on which outcomes for people with IDD. Unfortunately, varying conceptualizations of key variables such as "family support" or "living arrangement" and "quality of life" as pointed out in the articles by Hewitt et al (2013, this A number of longitudinal IDD data sets have been used to inform policy and practice in the United States for several decades, notably the Projects of National Signiflcance (PNS) discussed by Ticha et al (2013, this issue). These separate data sets provide information on specific issues about state IDD systems, such as residential services, employment, and IDD service expenditures.…”