Transitioning medically complex children to adult care

Advances in pediatric medicine have allowed more children with complex chronic conditions, disabilities, and technology dependence to survive into adulthood, creating an increasing need for coordinated transitions from pediatric to adult health care, according to Ellen Fremion, MD.

Fremion, an associate professor of internal medicine and pediatrics at Baylor College of Medicine in Houston, Texas, and affiliated with Texas Children's Hospital, discussed barriers to adult care and strategies for improving transition planning at the American Academy of Pediatrics (AAP) 2026 National Conference & Exhibition.

She emphasized that successful transitions require more than identifying an adult physician. Pediatricians must consider insurance coverage, medical equipment, medications, community-based services, and the administrative support necessary to maintain continuity of care.

Why do gaps persist when medically complex patients enter adult care?

Fremion explained that improvements in pediatric treatment have changed the long-term outlook for patients with chronic conditions and developmental disabilities.

However, adult health care systems have not always developed the infrastructure needed to support these patients.

She cautioned against assuming that adult primary care physicians lack the skills to manage complex medical conditions.

"However, it's a misconception that internal medicine doctors are not used to complexity. They really are," Fremion said.

Adult physicians routinely manage patients with multiple chronic conditions, but they may be less familiar with specific childhood-onset diagnoses, specialized equipment, or treatment requirements.

For example, an adult hospital pharmacy may not routinely stock a liquid formulation of a particular antiseizure medication. Similarly, equipment designed for smaller patients may not be readily available in adult facilities.

Outpatient practices may also lack the administrative resources that pediatric systems have developed to help families navigate insurance requirements, medical supply orders, and other services.

These differences can create disruptions even when an appropriate adult physician has been identified.

When should pediatricians begin transition planning?

Fremion emphasized that planning for lifelong care should begin when a child is diagnosed with a condition that may require ongoing medical or disability-related support.

Although discussing adult care immediately after a diagnosis may be overwhelming for families, clinicians should consider long-term needs from the beginning.

"The idea of lifelong care needs to really start happening at diagnosis," Fremion said.

Certain services require particularly early planning.

Insurance coverage and enrollment in disability-related support programs may need to be addressed years before a patient reaches adulthood.

Fremion highlighted state waiver programs, which can provide additional services to help individuals with disabilities remain in their communities.

However, waiting lists may extend for years. She noted that some waiver programs in Texas have waiting periods of approximately 17 to 20 years.

These delays illustrate why pediatricians should not postpone conversations about long-term services until adolescence.

Formal health care transition planning generally begins around ages 12 to 14 years, when clinicians can introduce the eventual move to adult care and gradually prepare patients and families.

Fremion recommended presenting the transition as a multiyear process rather than an abrupt change that occurs when a patient reaches a particular age.

How can pediatricians prepare adult providers for complex patients?

Developing relationships with adult care clinicians is an important component of transition planning, according to Fremion.

She encouraged pediatricians to identify adult providers in their communities who are willing to care for patients with childhood-onset conditions and developmental disabilities.

Internal medicine, family medicine, and combined internal medicine-pediatrics (Med-Peds) clinicians may all play important roles.

Fremion noted that Med-Peds physicians can be particularly useful in facilitating transitions because their training includes both pediatric and adult health care systems.

"I say we're bilingual in healthcare systems because we had to train and take care of patients in both," she said.

She recommended establishing a clear referral process that addresses the adult practice's capacity to accept new patients, anticipated wait times, and the clinical information needed before transfer.

Multidisciplinary planning meetings can also help teams anticipate challenges and ensure that necessary services are in place.

A well-organized medical summary should communicate the patient's diagnoses, medications, equipment needs, specialist involvement, and ongoing support requirements.

Fremion compared this preparation to organizing belongings before a move, emphasizing that poorly organized information can make it difficult for the receiving team to establish care efficiently.

What barriers limit access to adult care?

Although the number of adult clinicians specializing in developmental disabilities and medical complexity remains limited, Fremion emphasized that workforce capacity involves more than physician availability.

She described a growing network of adult developmental medicine specialists across the United States, with different models for delivering care.

Some physicians work in clinics dedicated exclusively to patients with medical complexity and developmental disabilities, while others incorporate these patients into broader primary care practices.

Fremion's adult primary care clinic focuses exclusively on patients with medical complexity and developmental disabilities.

However, she explained that practices also need staff who can manage the substantial administrative work associated with caring for these patients.

Individuals who rely on medical technology, home nursing, or specialized supplies often require frequent documentation, prior authorizations, and coordination with insurers.

Without sufficient support, delays in paperwork can lead to interruptions in services or equipment essential to daily living.

"So our support staff, which is usually unpaid for time from insurance reimbursement, is doing a lot of heavy lifting so that we can take on those patients," Fremion said.

She noted that even practices interested in welcoming patients with disabilities may struggle without the necessary nursing and administrative resources.

For pediatricians, Fremion's recommendations underscore the importance of treating transition planning as a long-term, coordinated process. Early preparation, relationships with adult providers, and attention to the practical requirements of ongoing care can help reduce gaps as patients with medical complexity move into adulthood.

Reference

Fremion E. Transitioning Children with Disabilities into Adult Care. Presented at: American Academy of Pediatrics 2026 National Conference & Exhibition; October 4, 2026; San Diego, CA.