A family systems perspective on supporting self‐determination in young adults with intellectual and developmental disabilities

Abstract

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.

The experience of mothers supporting self‐determination of adult sons and daughters with intellectual disability

“…These family relationships, although at times involving a degree of conflict, were viewed, by the adult participants with intellectual disability, as important and of a reciprocal nature. Another study of family support for self‐determination, specifically during times of transition, also acknowledged the interconnectedness of the family and noted the importance of healthy family functioning for promotion of the self‐determination of family members with intellectual disability (Taylor, Cobigo, & Ouellette‐Kuntz, ).…”

“…A sense of familial responsible for the person's safety (Dyke et al, ; Foley, ) and wanting decisions to be in accordance with family values (Saaltink et al, ) add to the concerns. While the need to promote and support self‐determination with strategies that work well across multiple settings including the home, school and community has been documented, effectiveness of such programmes is not well understood (Shogren, ; Taylor et al, ). Currently, there is little understanding about how parents provide support for the development of the skills and behaviours required for self‐determination (Carter et al, ).…”

Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees

“…Many parents experience that their child becomes more passive because of their own decision to stay at home instead of participating in social activities. Parents may also describe that they are devalued as resources for their own children, exemplified by not being contacted by the community career's when their child has significant needs or problems [23][24][25]. The expectations from the parents may come into conflict with the services.…”

Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees.

“…Many parents experience that their child becomes more passive because of their own decision to stay at home instead of participating in social activities. Parents may also describe that they are devalued as resources for their own children, exempli ed by not being contacted by the community career's when their child has signi cant needs or problems (23)(24)(25). The expectations from the parents may come into con ict with the services.…”