Four African American adult sisters laughing Siblings often have the longest relationships of their lives with each other and many siblings of people with IDD provide critical support and caregiving. As people with IDD live longer and outlive their parents, caregiving roles often transition from parents to siblings in families. Many siblings currently fulfill or anticipate in the future a caregiving role for their brothers/sisters with disabilities. However, siblings often do not feel prepared to take on these roles. Siblings are often not included in the future planning process where families discuss and make decisions related to the future services and supports for family members with disabilities including, but not limited to living situations, service/healthcare coordination, and financial planning.

In this databrief we looked at the sibling role in long-term care for their family member with intellectual and developmental disabilities (IDD). We examined how siblings perceive their ability to have choice and control over the services used by their family member.

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