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The transition from pediatric- to adult-based health care is known to be difficult, particularly for individuals with chronic illness and/or disabilities, including many people with genetic diagnoses. This chapter focuses on several of the issues that add to the complexity of this challenging period. It is important for medical providers to be aware of changes to health insurance coverage, be versed in the options and resources available to facilitate vocations upon high school graduation, and understand the legal implications of the existing options for medical decision-making. Additionally, there are many psychosocial considerations that can greatly impact healthcare delivery and affect health and wellness. Given these challenges, it is important to have evidence-based processes and practices in place to facilitate transition planning and improve related outcomes.

The transition from pediatric-based to adult-based health care is often difficult, especially for individuals with chronic illness or developmental disabilities, such as cerebral palsy. This article describes the current state of health care transition, focusing on some of the elements that contribute to the complexity of this challenging life period, including: changes to health care insurance, medicolegal considerations and options for supported decision making, discussions about vocations and related barriers and resources, and important psychosocial issues faced by many patients with cerebral palsy. Evidence-based processes and practices are described that can help facilitate health care transition planning and improve outcomes.

PURPOSE: For the growing population of adolescents and young adults with chronic childhood conditions (AYACCC), the transition from pediatric to adult health care contains many barriers and appropriate adult-based health care options are few. In 2005, the Transition Medicine Clinic (TMC), affiliated with Baylor College of Medicine, was established in Houston, Texas. It is one of the first clinics of its kind and serves AYACCC by providing a medical home in the adult health care system. This article describes the development and implementation of the TMC, its patient population and their resource needs, and lessons learned along the way. METHODS: We retrospectively examined the electronic health records of 332 patients that established care in the TMC prior to July, 2011. Data were collected describing multiple facets of the patient population and their resource utilization, both in aggregate and for several subgroups. RESULTS: The most common primary diagnoses were cerebral palsy, spina bifida, Down syndrome, genetic conditions, and autism. Patient characteristics demonstrated the unique challenges faced by the clinic: more than 80% received Medicaid, 65% had an intellectual disability, 41% used a wheelchair, and most had multiple secondary diagnoses. Compared to typical adult primary care practices, a larger amount of clinical resources, medical technology, and specialists were used, especially for those with the most medically fragile conditions. CONCLUSIONS: The results suggest that a clinic serving AYACCC requires physicians and support staff familiar with the aforementioned issues that are willing to spend a considerable amount of time and effort outside of routine office visits in health care coordination. Because many of these patients are covered by publicly funded health insurance, enhanced reimbursement must be considered to keep clinics like the TMC self-sustaining. Future research is needed to demonstrate adult-based care delivery models, develop clinical care guidelines, and evaluate key clinical outcomes.