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Preparing for Transition of Aging Youth with Complex Medical Conditions and Intellectual Disability

Statement of Problem

With advances in pediatric care, youth with complex medical conditions and/or intellectual disability are increasingly transitioning to adulthood.  Families with such youth face increasing challenges of navigating a transition to adult health care and also preparing for long-term care needs as caregivers age.  This portfolio examines the challenges around care delivery as youth with complex medical conditions and intellectual disability transition to adulthood.


Next Steps

The magnitude of variation between adult and pediatric care for youth with disabilities illustrates the need to standardize approaches for care delivery and ensure that all youth can grow into healthy, productive adults. The team intends to disseminate these findings across pediatric and adult health systems in an effort to improve the quality of care for transitioning youth. The emphasis on challenges faced by families caring for youth in community settings will permit strategic work with regional and state leadership to better support families retaining youth at home.

This project page was last updated in September 2019.

Suggested Citation

Children's Hospital of Philadelphia, PolicyLab. Preparing for Transition of Aging Youth with Complex Medical Conditions and Intellectual Disability [Online]. Available at: [Accessed: plug in date accessed here].