Parent and Sibling Roles in Decision Making with Individuals with Intellectual and Developmental Disabilities


The family has long played an important role in decision making among individuals with intellectual and developmental disabilities (IDD). Historically, such roles included guardianship or conservatorship wherein the individual with IDD often did not have much decision-making authority. With recent developments in self-determination and supported decision making, the role of the family has shifted from more authoritative to supportive. Accordingly, the role of the individual with IDD has shifted from more restricted to spearheading their own decisions. In this chapter, we discuss the role of sibling and parent dynamics with respect to decision making of individuals with IDD. Specifically, we review person-family interdependent planning and the family (i.e., parent and sibling) role in supported decision making. Then, we discuss the role of the family with respect to informal and formal decisions. We identify personal characteristics, environmental demands, and support needs which are considerations for the family role in decision making. We conclude with directions for research and practice in decision making for individuals with IDD and their families.

Suggested Citation

Burke, M., Lee, C. E., Rossetti, Z., & Hall, S. (2021). Decision Making by Individuals with Intellectual and Developmental Disabilities (I. Khemka & L. Hickson, Eds.). Springer International Publishing.


Book Chapter 
Springer Publishing


  • Community life
    • Parenting and family relationships
  • Specific disability
    • Intellectual/developmental disability (IDD)