While rapid advances in medical science have enabled more than 90 percent of children born with special needs to reach adulthood, youth with special health care needs are much less likely than their non-disabled peers to finish high school, pursue post-secondary education, get jobs, or live independently. Few coordinated services have been available to assist them in their transition to adult-oriented care. Transition planning must begin early in order to move children and families along in a developmentally appropriate fashion. One of the greatest challenges in planning is how to make a successful transition from the pediatric to the adult model system of care. Health care professionals, on both the pediatric and adult sides, may lack the training, support, and opportunities they need to promote the development of youth with special health care needs as partners in health care decision-making. Some adult health care providers may not be prepared to treat patients with complex medical conditions that begin in childhood. The challenge remains to improve the system that serves youth with special health care needs while simultaneously preparing youth and their families with the knowledge and skills necessary to promote self-determination, wellness, and successful navigation of the adult service system.
The standard for transition outcome was evaluated for CSHCN aged 12 to 17 using two questions: whether a child’s doctors usually or always encourage adolescents to take increasing responsibility for their care, and whether doctors had provided anticipatory guidance for the transition to adult health care.