American Academy of Pediatrics Policy: Preparing Youth With Intellectual and/or Developmental Disabilities Transitioning to Adulthood on Medical Care Decision-making

When teenagers with intellectual and/or developmental disabilities reach the age of majority, typically 18, they may need support in making medical decisions. The American Academy of Pediatrics in a policy statement, “Considerations for Alternative Decision Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities,” provides guidance for pediatricians to support conversations with youth and their caregivers. The statement, published in the June 2024 Pediatrics (published online May 28), recognizes that youth will fall under a spectrum of medical decision-making, ranging from being fully autonomous to being under guardianship. Some states may recognize levels of supported decision-making in between these two extremes for individuals who need assistance to make some decisions. Youth are presumed to have the capacity to make decisions until proven otherwise, thus balancing autonomy with appropriate support is paramount. 
 
The AAP provides recommendations that include establishing support teams that include the youth, caregivers, teachers and pediatricians who engage in transition planning when the child is between 12 and 14 years old. The teams identify and develop resources to support the maturing youth’s capacity for independent decision-making. Pediatricians should advocate for the least restrictive decision-making environment for their patients. They also can be familiar with local and state resources supporting disability and autonomy for youth with intellectual and/or developmental disabilities, including medical-legal partnerships. 
 
Policy statements and technical reports created by AAP are written by medical experts, reflect the latest evidence in the field, and go through several rounds of peer review before being approved by the AAP Board of Directors and published in Pediatrics.

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The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.