Transition from youth to adulthood involves many factors: education, employment, finances, home living, community living, recreation and leisure, personal responsibility. For the individual with a heritable disorder, transition includes issues related to medical care and disease management such as identifying adult health care providers knowledgeable about specific conditions, developing new relationships with adult health care providers, adapting to new service delivery approaches, changes in health care coverage and insurance, and learning to manage one’s own health care. Transition is a process, not an event that should occur gradually, in concert with adolescent and family development. Including parents, pediatric providers, specialists and adult providers in the process is essential to smooth, coordinated, comprehensive transition.
The Transition Workgroup will focus on identifying and promoting effective models addressing transition to adult services for youth with heritable disorders
