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Background This study explored the way families support self‐determination in young adults with intellectual and developmental disabilities (IDD) during life transitions. Method Qualitative case studies were conducted with two Canadian families who participated in semi‐structured interviews and ethnographic observations every quarter for one year. Analyses were informed by family systems theory and self‐determination theory. Findings Families considered the needs and preferences of the young adults with IDD, suggesting individualized approaches for balancing independence and protection. Families set short‐term and long‐term goals for increased independence, scaffolded the learning of new skills and collaborated on important choices. Collaboration occurred to the extent that all family members perceived agency in planning and implementing transitions. Conclusions Families supported the young adults with IDD in their psychological needs for competence, relatedness and autonomy, which allowed them to experience self‐determination. Findings have implications for supporting self‐determination and transition planning in the family system.

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Persons with intellectual and developmental disabilities (IDD) have the right to participate in research with dignity and respect. Information about persons with IDD is often acquired from third parties; however, they are capable of, and want to be included in, research. Nevertheless, current practices to protect persons with IDD from harm may preclude them from participating in research. Therefore, inclusive research requires ethical and practical considerations to ensure that persons with IDD are treated fairly. In this chapter, experiences and recommendations in four aspects of ethical research with persons with IDD are shared: (1) accessibility, (2) consent, (3) confidentiality, and (4) research participation risks. Interactions with research ethics boards are used to illustrate the complexity of these ethical considerations and the need for guidelines.

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