Transitions to Adult Care
Children with neurodevelopmental disabilities now regularly live into adulthood. Like other children, they become adolescents and then adults, which is challenging both for the children and for their parents. Eventually their health care needs can no longer be met appropriately by pediatricians. At this point, they must make the transition to adult care that recognizes both limitations caused by their conditions and their rights as adults to receive excellent care.
Adolescence is an exciting time in a person’s life. Adolescents are growing and developing physically, emotionally, and socially. Every aspect of their life is affected as they make the transition to adulthood. Part of the transition includes their relationship with the health care system as they make the move from pediatric to adult health care providers. Unfortunately, this move can be confusing and uncertain at times, particularly for people with neurodevelopmental and intellectual disabilities. Although they may have received some information about growing into adulthood, they often do not receive adequate information about what this means for their health care, and it can cause signiﬁcant problems for young adults, their families, and their health care providers.
This web page provides an overview of the health care transition. It deﬁnes and describes the transition, explains who is involved in the process, and reviews how to make transition plans with and for patients and their families. There is also a resource list you can use to learn more and to provide to patients.
A health care transition is the planned movement of adolescents and young adults from a child-centered to an adult-oriented health care system. The goals of the transition for children with chronic physical and medical conditions, and for their families, is to improve their ability to manage their own health care, advocate for themselves, and effectively use health services. It is important to remember that this is a process, not a one-time event.
For providers, the goal is to ensure an organized clinical process in both pediatric and adult care settings to facilitate preparation for the transition and then smooth transfer of care to integrate patients into the adult care system.
In the past few decades, thanks to improvements in technology; the development of newer, more effective treatments; and the delivery of higher quality, more personalized care, medically complex patients have survived illnesses that were thought to be lethal just a few years ago. Many children with special health care needs, including those with neurodevelopmental and intellectual disabilities, are living long into adulthood. This has created a new challenge for health care providers. Who takes care of young adults with special health care needs? How do we best address the speciﬁc health care needs of patients who are making the transition to adulthood? What problems arise when transition goes wrong?
Every health care system (and every health care provider, for that matter) handles the situation differently. Some providers, systems, and insurers require that pediatric patients make the transition to an adult system at age 18. Others are more ﬂexible and will see patients into young adulthood.
Patients and families themselves may be unprepared for the differences in the approach to care between pediatric and adult health care providers and systems. Pediatric systems tend to be more family-centered and may be more interdisciplinary in nature. Conversely, adult health systems are patient-centered, rely upon patient autonomy, and may use a less interdisciplinary approach. These issues can lead to trouble for patients with complex needs.
Inadequate, unplanned, or incomplete transitions are associated with morbidity and gaps in care. Patients and families may not know how to ﬁnd appropriate adult providers. Providers of adult care themselves may feel unprepared to take on patients with certain conditions, especially for those with rare neurological, metabolic, or genetic disorders; certain neurodevelopmental conditions; complex neurobehavioral disorders; or intellectual disability.
Patients who are unable to ﬁnd providers of adult care may be lost to follow-up for years. They may only seek care in times of crisis or turn to emergency and urgent care services as a result. Ultimately, this can lead to emotional distress, dissatisfaction with care, and higher health care costs for patients, as well as increased health service utilization.