Background and Introduction

What is health care transition and why does it matter for special education?

Pediatric to adult health care transition (HCT) is the process of moving from a child- or family-centered model of health care to an adult- or patient-centered model of health care. The process prepares adolescents with special health care needs to manage their own health care and effectively use health services. To succeed in their post-secondary school lives, students in special education should be able to manage their own health and health care to the best of their abilities. This includes understanding:

• Their medical needs and medications
• What to do in a medical emergency
• How to make a doctor’s appointment
• How to refill medications
• How privacy changes when they reach the age of majority (typically at 18)
• Why it is important to have and carry health insurance
• How to request accommodations and ask questions

Why is the connection between health care transition and special education important?

• The Individuals with Disabilities Education Improvement Act (IDEA), the special education law enacted in 2004, mandates that all students with an Individualized Education Program (IEP) receive transition planning for post-secondary education and training, employment, and independent living. 
• IDEA does not require health or health care as part of transition planning , which has resulted in little attention on HCT assessment and goal setting in IEP transition plans. This lack of focus on gaining the knowledge and skills needed to manage health needs and navigate health care can jeopardize success in post-secondary work, education, and independent living.
• Only 22% of CYSHCN, ages 12-17, receive HCT from their health care providers.  Special education is an opportune setting to build health-related transition skills in tandem with other transition skills building.

How did this work begin?

Elevating HCT in special education began as a grassroots effort with a small group of state Title V CYSHCN programs and family leaders who wanted to bring greater attention to the HCT needs of students in the special education system.

Got Transition formed the Health Care Transition and Special Education Learning Community, which meets monthly and includes leaders from Florida, Georgia, Hawaii, Illinois, Michigan, Minnesota, New Mexico, Oregon, Vermont and Wisconsin. The National Technical Assistance Center on Transition: The Collaborative (NTACT:C), participated in this effort from the outset and offered special education transition expertise. The HCT and Special Education Learning Community is now offered through the National Center for a System of Services for CYSHCN. 

What is the National Center for a System of Services for CYSHCN?

The National Center for a System of Services for CYSHCN, also known as The National Center, aims to advance and strengthen the system of services for CYSHCN, their families and caregivers at the community, state and national levels. For more information, visit The National Center’s website. Got Transition is a Consortium member of the National Center, providing expertise to improve transitions from pediatric to adult health care for CYSHCN.  

What is Got Transition?

Got Transition® is the national resource center on HCT, operated by The National Alliance to Advance Adolescent Health. Its aim is to improve the transition from pediatric to adult health care through the use of evidence-driven strategies for clinicians and other health care professionals; public health programs; payers and plans; youth and young adults; and parents and caregivers. This resource guide was developed by Got Transition as a product of the National Center.