AAP Voices Blog

Pediatricians’ critical role in transition of care for patients with Intellectual Disability

My brother John, who has Down syndrome, loves school. From ages 3 through 21, he reaped the benefits of excellent public school systems. There he received quality education, became friends with peers in both mainstream and special education classrooms, and, as he grew older, had opportunities for school-supported internships within the community.

My parents knew how important school was for John and worried what life might look like once he aged out of the public school system at age 21. Because of that, they started researching postgraduate opportunities for John years prior to graduation. Now, at age 23, John is enrolled in a residential education program where he lives with a roommate and commutes independently to an offsite internship.

My family feels extremely lucky that John’s postgraduate transition has been relatively seamless. Unfortunately, not all individuals with intellectual disabilities have the same experience. 

As pediatricians, we play a crucial role in helping our patients with intellectual disabilities transition from pediatric care to adult care.

As pediatricians, we play a crucial role in helping our patients with intellectual disabilities transition from pediatric care to adult care. This transition should encompass the whole child, including their ongoing educational, vocational, and social needs as they graduate from the public school system.

When we think of transition of care, we often think of patients with medical complexity – such as organ transplant patients or those with rare medical conditions – who require adult subspecialty expertise specific to their complex medical history. Similarly, patients with intellectual disability should establish care with an adult provider who is familiar with treating these patients. But this does not take into account some of the unique needs of patients with intellectual disability, including guardianship, continuing education or vocational training, and independent or semi-independent living.

Young adults with intellectual disabilities have higher rates of anxiety and depression compared to their typically developing peers, and these rates seem to peak after age 21 when individuals have aged out of public schooling. Social isolation contributes heavily to these increased rates, as many young adults with intellectual disability who do not have a strong educational transition plan abruptly go from daily public schooling with ample socialization to a lack of daily routine and limited social contacts. Transition planning encompassing the entire child, not strictly their medical needs, is critical to ensure that they thrive socially, emotionally, and physically after aging out of both pediatric care and the public school system.

Pediatricians have a duty to their patients with intellectual disabilities and these patients’ caregivers to have conversations early and often about what they hope the transition from school to postgraduate life will entail. For some patients and families, this prompting from their pediatrician may be the first time they’ve considered life after public school. And it’s not enough for pediatricians to simply initiate these conversations – we should familiarize ourselves with existing local opportunities and provide patients with possibilities suited to their specific abilities, needs, and desires. Unfortunately, many such opportunities are exorbitantly expensive, which can make them inaccessible to individuals who may benefit most. As such, we as pediatricians should also understand the barriers our patients with intellectual disabilities may face in pursuing postgraduate educational and vocational opportunities and work closely with families to help navigate these hurdles.

These conversations around transition of care are only the beginning for individuals with intellectual disabilities, but pediatricians have a crucial role to play. As a pediatrician myself – and more importantly as John’s sister – my hope is that every young adult with intellectual disability has a clear transition plan in place after graduating from public schools that helps them thrive and succeed well into adulthood.

*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics.