Leaving the comfort of the pediatrician’s office can be anxiety inducing for parents and patients alike. The pediatric healthcare system feels comfortable and safe, while the adult healthcare system can appear cold and disjointed. For teens and young adults with complex health conditions or intellectual and developmental disabilities, it is often even more terrifying.
As a physician for adults with intellectual and developmental disabilities, my first visit with patients often is spent easing anxieties and helping to support families in starting to navigate this adult world. I love providing a safe landing space for young adults with disabilities, but there are also things that patients, families, and pediatricians can do to help make the transition feel less abrupt.
Transition experts suggest starting discussions about transition in the early teen years. You don’t have to switch to adult providers early, but it is helpful to think about what an adult care team looks like. More importantly, it is important to set up teens to be successful in decision making and navigating their own care. This will look different for different teens depending on their abilities and support needs, but all patients have ways they can become more involved in their care.
It’s important not to forget that once someone turns 18, medical decision making is legally theirs, regardless of their abilities, disabilities, or support needs. For teens with disabilities who require lifetime support, start thinking about the legal component of medical care early. Research supported decision making, medical and financial power of attorney, and guardianship as options. There is no one right option for everyone, and each option comes with different levels of support and restriction on an individual’s decision making. If possible, have a plan set up before they turn 18.
Adult Care Team
For teens and young adults with complex medical problems or disabilities, their adult care team will not be simple or coordinated. Many patients are used to the luxuries of the pediatric health system with co-located specialists, services, and often multi-disciplinary clinics. It can be frustrating to transition to a world where each specialist is at a different clinic and has a different electronic health record. It often feels like no one sees the whole picture of an individual’s medical needs or outside life. Look for a primary care provider you feel comfortable with and can oversee all of their care. If possible, finding a provider who also understands the social support system for adults with disabilities can ensure that a teen or young adult gets all the wrap around support they need.
Emily Johnson, MD is a provider at Peak Vista’s Developmental Disabilities Health Center. Growing up with a brother with Down syndrome, Dr. Johnson knew from an early age that she wanted to care for patients with developmental disabilities. Dr. Johnson loves sharing her knowledge with patients, especially during Developmental Disabilities Awareness month.