Building new relationships can be as challenging as it is rewarding. Many families face uncertainty when connecting with a new neurologist that will help their child navigate the oncoming challenges of adulthood with a neurological disorder. The team at Child Neurology Foundation created resources to help prepare you for what to expect for you, your child and your family.
A well executed transition is an integral component of your child’s shift to adult-oriented health care, and can be done with prior planning and the support of your child’s pediatric care team. While case planning looks different for every family, conversations around care transition can begin when your child is as young as 12 years old, with the actual transition usually occurring between 18 to 21 years of age. You can work with your child’s medical, nursing and social supports team to develop benchmarks and goals for the hand-off. Successful and seamless transition of care begins with each specialist and caregiver in your child’s current team defining their role in transitioning and encouraging your child, if possible, to assume a more vocal position in managing their care.
A large part of succession planning with your child’s care planning is building a new care team. This involves choosing a new primary care or internal medicine physician, onboarding any subspecialists beneficial to your child’s care and releasing your medical records, care plans, insurance details and case history to your child’s new physician. You can connect your child’s pediatrics and adult care teams to start conversations around life planning with regards to possible higher education, independent living and career planning, and how health care supports can be scaffolded into these areas to serve your child’s unique needs.
This phase in your child’s diagnosis is also an incredible opportunity to empower them in taking more of a hands on role in managing their health and diagnosis. As you scale back your involvement, be patient and supportive with your child as they gain experience in making decisions around their health care.
“Transition is an important time for adolescents with neurological conditions because for many of them it’s a lifelong disorder. They’re growing up, becoming more independent, trying to figure out what they want to do when they grow up,” says Rebecca Schultz, a Pediatric Advanced Practice Nurse. “There’s lots of things to learn from a medical standpoint; like what medicine they’re taking, or why they need to take them.”
Living with a neurological disorder can present patients and families with challenges, but can also impact their lives in unexpected and beautiful ways. If you or your family have questions or need support through your transition, please reach out to [email protected] or check out our our Transitions of Care page, which holds resources like checklists and videos of families’ journeys through transition.
“Moving towards adult care is a step in the right direction, and you always have resources.” says Delovely, mom to Kobe who is now a young adult living with a seizure disorder. “It was a little challenging, but it actually made us really close.”