Sibling Participation in Service Planning Meetings for Their Brothers and Sisters With Intellectual and Developmental Disabilities in the United States

Siblings have the longest lasting familial relationship. When a disability is present, siblings fulfill unique roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given their roles, siblings want to be included in service planning; however, it is unclear the extent to which siblings are involved in service planning. The purpose of this study was to examine sibling involvement in service planning meetings. In this study, 422 siblings of individuals with IDD in the United States responded to a national, web-based survey. Only 36% of siblings had attended a service planning meeting for their brother/sister with IDD. Further, sibling involvement was positively correlated with sibling age, advocacy, future planning activities, and less functional abilities of individuals with IDD. Siblings reported needing certain supports to better participate in service planning; an improved service delivery system, information about navigating adult services, family–professional partnerships, access to support from others, and logistical supports. In this study, siblings reported wanting more support to advocate for their brothers and sisters with IDD. To support these siblings, professionals need to encourage sibling attendance at service planning meetings and provide advocacy supports.