As youth get older, they are more ready to participate in their own health care and health care decisions. And since once they turn 18 they are legally in charge of their care, it's a good idea for them to learn the ropes well before then.
The majority of CHPCC patients will transition to an adult health care provider between the ages of 18 and 22 years. Depending on your child's developmental readiness, your provider will begin spending time alone with your child at some of their visits as they approach adolescence (12-14 years of age).
During this time, we will also begin working with families to make the transition to an adult care model. Between the ages of 14 and 18, we will continue working with your child to practice this adult model of care, encouraging them to practice the skills necessary to take responsibility for their own health.
Youth with special health care needs may need more time to transition to adult care and may also need assistance with issues around guardianship. CHPCC has resources dedicated to facilitating these transitions to adulthood. If you need help or have any questions, please let CHPCC staff or your provider know.
Here are some links that families may find helpful:
What Happens When My Child Turns 18? This is Boston Children's guardianship planning guide for parents, and it is a terrific resource.
Got Transition? This website has lots of great information for patients, families and doctors.
Heading Off To College When You Have a Chronic Disease
Setting the Stage for Medical Independence
Time for transition? We can help.
Sending Your Kid to College? Think about their health, too.
Teens: Time to take more responsibility for your health (with a video from BCH's great Teen Advisory Council)
Back to school health: heading off to college with a chronic illness
5 tips for heading off to college with IBD
More resources for families of youth with special health care needs:
The Federation for Children with Special Needs
Massachusetts Disability Information
Transition Information from Massachusetts Arc
Disability Law Center
Massachusetts Advocates for Children
Transition information from the Massachusetts Department of Education
Dental care at Tufts for people with special needs
Planning for Life After Special Education in Massachusetts, a transition services online manual
Transition advice from the Massachusetts Department of Health and Human Services
"Turning 22": Massachusetts resources and information to help families with disabled children transition into adulthood
Information about transition from the Autism Consortium
A searchable database of Massachusetts transition resources from Autism Speaks
Here are some hospital transition resources:
The Center for Young Women's Health
The Center for Young Men's Health
The Pediatric Transplant Center at Boston Children's Hospital
The Metabolism Program
The Dana-Farber Cancer Institute Adult Survivorship Program
The Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Service at Boston Children's Hospital