The nation’s pediatricians are getting new guidance on how to help teenagers with intellectual and developmental disabilities and their families navigate the transition to adulthood.

In a policy statement published this month in the journal Pediatrics, the American Academy of Pediatrics is spelling out the steps that physicians should take as children move toward age 18 when they will be legally recognized as adults.

Pediatricians should start discussing the transition to adulthood and what level of assistance children are likely to need between the ages of 12 and 14. They should work together with patients, their caregivers and their teachers, always advocating for the least restrictive decision-making environment, according to the guidance.

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While some individuals with developmental disabilities will be prepared to be fully autonomous in their medical decision-making as adults, others will need assistance through supported decision-making, guardianship or other means, the pediatrics group said.

“The continuum of supported decision-making, power of attorney (health care proxy), other decision-making options, and guardianship may be considered to support the youth at levels that promote autonomy and self-determination in decision-making,” the policy statement reads. “Physicians, including pediatricians, play a significant role in supporting youth with IDD in this process.”

Pediatricians are advised to actively engage their patients with intellectual and developmental disabilities about care decisions while being mindful of their ability to communicate and understand decisions about their care. They should work with youth, their families, legal experts and other stakeholders to determine the level of appropriate support.

The guidance notes that pediatricians can familiarize themselves with local and state resources to make referrals, as needed, and they can reevaluate any decision-making arrangements during annual exams “to align with the youth’s desires, needs, and decision-making abilities over time.”

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