As siblings play an increasing role in the lives of people with intellectual and developmental disabilities as a result of the longer lifespan of this population and the aging of their parents, more investigative work in this area is warranted. To lay a foundation for this, the authors reviewed the English‐language literature on siblings of adults with intellectual and developmental disabilities, focusing on three main questions: (1) what are the psychosocial outcomes of having a sibling with an intellectual and developmental disabilities on the sibling without a disability?; (2) what factors relate to the nature of the sibling relationship?; and (3) what factors relate to future planning, including expected and future relationships when parents can no longer provide care? This literature review looked at published work for the period 1970–2008 on adult siblings over 21 years of age that addressed relationships, psychosocial outcomes, and/or involvement in future planning. Twenty‐three relevant studies were identified. Overall, these studies present a mixed, but generally positive picture of the psychosocial outcomes of having a sibling with a disability. They also indicate that siblings tend to have long‐lasting close relationships with their siblings with a disability and anticipate taking on greater supportive roles as both grow older.

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.

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This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.