Norton Neuroscience Institute’s program helps bridge the gap for young adults with neurological conditions transitioning to adult care

Published: March 27, 2026

Most pediatric neurology patients transfer to adult care between ages 18 and 23, yet there is a critical gap between transfer and transition, the long-term process of preparing patients and families for independence and self-management. For patients with neurological disorders, many of whom have intellectual or physical disabilities, this transition is particularly complex and requires deliberate planning.

David A. Robertson, M.D., neuroimmunologist and neurologist, heads the Norton Neuroscience Institute Adult Neurodevelopmental Program. Helping families manage this transition for young adults with neurological conditions has been a personal interest of his for many years. 

In April 2025, he launched the Norton Neuroscience Institute Adult Neurodevelopmental Program, designed specifically to fill the care gap many patients face when transitioning out of pediatric neurological care. The program provides specialized care for adults with conditions like autism, cerebral palsy, genetic disorders, developmental delay and childhood-onset neurological diseases. The goal: Provide continuous, coordinated care that bridges the gap between pediatric and adult services.

Paula A. Johnson, APRN, pediatric neurology, is a nurse practitioner with Norton Neuroscience Institute. Paula’s background includes close family with neurodevelopmental issues, which lead her to becoming an APRN in pediatric neurology. For the last 22 years she has worked with Vinay Puri, M.D., pediatric neurologist and team at Norton Children’s Neuroscience Institute, and will join the Adult Neurodevelopmental Program this spring.

Why structured pediatric-to-adult transition programs are essential

Pediatric neurologists often maintain long-standing relationships and provide care that extends beyond medical needs to educational, behavioral and social support. Adult neurologists, by contrast, typically offer more narrowly focused care with less comprehensive support. 

Without structured programs, young adult patients and their families face this transition during an already challenging time — aging out of a family-centric care model, navigating new insurance issues and adapting to the fragmented adult health care system. The result is often poor continuity of care and suboptimal outcomes.

Key components of an effective transition program

Set expectations early: Begin discussing transition policy with patients and their caregivers in early adolescence.

Develop an individualized plan: Create a joint plan with the patient and their family.

Review and update regularly: Meet annually to increase disease knowledge and gradually transfer self-care responsibilities.

Complete the handoff: Provide a comprehensive transfer packet, identify accepting adult providers and ensure the first appointment is kept.

Practical implementation strategies for pediatric-to-adult transition programs

Successful programs incorporate these methods:

• Start young: Introduce individual office time beginning in the early teens, gradually separating the teen from parents during visits.
• Use standardized tools: Implement transition checklists, self-care assessments and health passports that patients can reference.
• Integrate into workflow: Build transition planning into electronic health records with automated reminders starting around age 14.
• Provide comprehensive documentation: Create detailed medical summaries and emergency plans for adult neurology providers who receive your patients as they age out of pediatric care.
• Maintain availability: Pediatric neurologists should remain available as consultants to adult colleagues, especially for complex cases.
• Collaborate broadly: Partner with primary care providers, local advocacy organizations and community resources.

For patients with intellectual disabilities, additional accommodations are necessary, including negotiating with facilities for family presence during appointments, arranging MRIs under anesthesia when needed, and training hospital staff to work with adults with developmental disabilities.

Moving forward

Recent advances in neurogenetics and targeted treatments mean patients with conditions that previously did not allow survival past childhood are now living well into adulthood. Structured transition programs ensure these patients receive continuous, appropriate care as they age.