Children and youth diagnosed with a chronic condition and/or disability in BC are most often referred to a pediatrician in the community and then referred for pediatric sub-specialty care at BC Children’s Hospital or other pediatric clinics in the province.
The multi-disciplinary team taking care of them may include physicians, nurses, social workers, dieticians, psychologists, or physical and occupational therapists. In most cases the child, parents and family members come to BCCH (or a pediatric clinic) at least once a year, more commonly 2-3 times per year, for health monitoring, tests, teaching, and support. In many ways, the pediatric team becomes a significant support system to them.
These children might have any number of conditions: diabetes, gastrointestinal disorders, epilepsy, kidney disease, arthritis, or more complex conditions like neuromuscular diseases, cystic fibrosis, cardiac diseases. Some may have more than one chronic disease or disability.
At 18 years of age, they age-out of a number of services that have supported them since childhood: school, insurance, home care, travel benefits, and many others. Additionally, they also graduate from pediatric care into the adult health care system – whether they are prepared or not.
Unprepared families tell us that ‘it is like falling off a cliff.’ The ON TRAC model and tools have been developed to help youth, families, and care providers prepare for the changes that occur in adulthood, and the differences to expect as they transfer and participate in the adult health care system.
You are not alone in this transition. Explore the Youth Toolkit
and Family Toolkit
to find the information and resources you need as you enter into this next phase.