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Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and
Renee M Turchi1, Dennis Z Kuo2, John W Rusher3
1Department of Pediatrics, Drexel University College of Medicine & St. Christopher's Hospital for Children, Philadelphia, Pennsylvania.
Pediatrics
|May 28, 2024
Summary
Transitioning youth with intellectual and/or developmental disabilities (IDD) require patient-centered care and early planning for decision-making support. Pediatricians play a key role in empowering IDD youth and families with resources for autonomy.
Area of Science:
- Pediatric Healthcare
- Developmental Disabilities
- Healthcare Transition
Background:
- Increasing numbers of youth with intellectual and/or developmental disabilities (IDD) are transitioning to adulthood.
- This transition necessitates integrated, patient- and family-centered care models.
- Early transition planning is crucial for optimizing health and well-being.
Purpose of the Study:
- To review alternative decision-making support options for youth with IDD.
- To discuss legal requirements and concepts related to decision-making for this population.
- To guide care teams and pediatricians in supporting transition and autonomy.
Main Methods:
- Review of alternative decision-making support concepts.
- Analysis of legal frameworks for decision-making.
- Discussion of pediatrician's role in supporting transition.
Main Results:
- Transition planning should begin between ages 12-14.
- Decision-making support ranges from supported decision-making to legal guardianship.
- The least restrictive alternative should be prioritized to preserve rights and dignity.
Conclusions:
- Care teams must consider various decision-making supports tailored to individual needs.
- Pediatricians can facilitate autonomy by engaging youth, supporting communication, and connecting to resources.
- Empowering youth with IDD in decision-making promotes their autonomy and well-being.
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