Growing pains can mean one thing for a typical adolescent and quite another to an older teen with cerebral palsy attempting independence in an adult world. A unique program, the Indiana University School of Medicine Center for Youth and Adults with Conditions of Childhood (CYACC) is helping these youths spread their wings and live more independently.
IU pediatricians at Riley Hospital for Children have been at the forefront of innovative care for patients, including advances that over the past three decades have created new challenges for patients with special needs and their caregivers. Now, Riley physicians are leading the way to providing a solution.
CYACC provides interdisciplinary consultation in a health-care setting to specifically address transition and adult life issues regardless of the youth or adult's diagnosis.
"Twenty to 30 years ago it was not unusual for children with serious congenital or developmental conditions to die before reaching adult life," said Mary Ciccarelli, M.D., an assistant professor of clinical medicine and pediatrics at the IU School of Medicine and medical director of CYACC. "Today, the life expectancy of many of these children reaches well into adulthood yet there are few programs available to help them transition to independent lives with both the best health status and the fullest participation in their communities."
Nationally, there are only a handful of programs that are beginning to address the need, Dr. Ciccarelli said.
It is estimated that 4,000 Indiana youth with special health-care needs experience transition into adult life each year. CYACC patients, who are between the ages of 11 and 22 years, are seen at the Wishard Primary Care Center on the IU Medical Center campus. Frequent diagnoses of patients served by the CYACC team are cerebral palsy, Down syndrome, autism, diabetes, rheumatologic disorders and spina bifida. Resources in many specialties and disciplines are involved to successfully integrating youth with chronic conditions into the adult world.