Youth with special health care needs (SHCN): Challenges and recommendations for successful transition to adult care

Background: Youth with special health care needs face numerous challenges when transitioning out of a system of care designed for children and seeking adult care. The California Children's Services Program (CCS) provides diagnostic and treatment services, medical case management, and physical and occupational therapy services to children and youth with special health care needs (CSHCN) who meet medical, financial, and residential eligibility criteria. This paper addresses the challenges faced by these youth and potential solutions. Methods: The Family Health Outcomes Project conducted an assessment of the needs and systems issues related to delivering services to children eligible for CCS. Methods included key informant interviews, focus groups, and web-based surveys. Results: The majority of families with youth with SHCN report not receiving transition services: only 41% report their child's doctor talking about how health care needs might change, 26% report their child's CCS case manager talking about their child's transition, and 19% report their child receiving any vocational or career training. Major barriers to successful transition include: lack of access to providers, lack of training for adult providers, lack of case management and care coordination once the client transitions out of CCS, and burdensome procedures to access insurance. Conclusions: Suggestions identified to encourage doctors to take CCS clients as they age out of the program include offering training for adult providers, funding, and resources to help care for these patients. Clients having insurance that covers the costs of health care and care coordination was the most highly rated suggestion.