Navigating Medical Transitions

The transition from pediatric to adult health care has been identified as one of the top challenges for children with special health care needs and their families who live in West Virginia. It is important to make a plan as your child approaches age 18 to ensure a smooth transition to adult providers.

We spoke to West Virginians with disabilities, family members and providers about their experiences with medical transitions from pediatric care to adulthood. The video below features some of their valuable insights and advice.

Navigating Medical Transitions from Pediatric to Adulthood mini-documentary

Questions to ask your doctor about transitioning to adult health care (provided by Got Transition):

• During your adolescent years:
  • When do I start to meet with you on my own for part of the visit to become more independent when it comes to my own health and health care?
  • What do I need to learn to get ready for adult health care? Do you have a checklist of self-care skills that I need to learn?
  • Can I work with you to prepare a Medical Summary and Emergency Care Plan?
  • When I turn 18, what information about privacy and consent do I need to know about? If I need help with making health decisions, where can I get information about this?
  • At what age do I need to change to a new doctor for adult health care?
  • Do you have any suggestions of adult doctors to transfer to?
• Before making the first appointment with a new doctor:
  • Do you take my health insurance?
  • Where is your office located? Is there parking or is it near a metro/bus stop?
  • What are your office hours, and do you have walk-in times?
  • What is your policy about making and cancelling appointments?
  • If needed, can the new adult doctor help me find adult specialty doctors?
• Before the first visit with a new doctor:
  • Did you receive my medical summary from my pediatric doctor? (Call your pediatric doctor to remind them to send the medical summary before your first visit to the new adult doctor.)
  • What should I bring to the first visit?

ECHO Series: Navigating Medical Transitions into Adulthood

The WVU CED was funded by the West Virginia Developmental Disabilities Council through the WV Department of Health and Human Resources to create a six-session ECHO Series on navigating medical transitions from pediatric to adult health care.

This six session training online series is intended to provide education and resources to individuals, families and healthcare professionals about navigating medical care transitions from pediatrics to adult care.

These sessions are intended for individuals with disabilities, families/caretakers and professionals who work with individuals with disabilities and/or special health care needs.

CEUs are no longer available for the webinars, but you can view them at any time. Click the topics above to watch individual sessions, or select the button below to view the whole series:

ECHO Series Webinars

Additional Resources

• Got Transition: The federally funded national resource center on health care transition (HCT). Its aim is to improve the transition from pediatric to adult health care using evidence-driven strategies for clinicians and other health care professionals; public health programs; payers and plans; youth and young adults; and parents and caregivers.
• Center for Transition to Adult Health Care for Youth with Disabilities: A national health care transition resource center with the goal of empowering youth and young adults with intellectual and developmental disabilities ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.
• Tips for Preparing for your Move to Adult Health Care: This document made by Got Transition outlines the difference between pediatric and adult health care. It also includes some helpful tips to help prepare for the move to adult health care.
• My Health Care Visit: A form for people with intellectual and/or developmental disabilities to prepare for a visit with a health care professional. It can be completed with the clinician to better understand the purpose and outcome of the visit.
• About My Health Worksheet: A different worksheet for people with intellectual and/or developmental disabilities to help make health care visits successful. It asks about likes, dislikes, communication preferences and more.
• Health Care Transitions Checklist and Plan: The transition checklist helps prepare families and youth for discussions with providers to help make transitions successful. The transition plan helps providers set goals for transitioning a patient and their family.
• My Hospital Form: This form helps hospital staff know how to best accommodate medical and communication needs in a situation when they may need to go to the hospital while their family and support are unavailable.
• Decision-Making in Health Care: A tool to help health care providers respect the decision-making rights of people with intellectual and/or developmental disabilities.
• Person-Centered Health Profile Workbook: A workbook that can be completed by an individual with special health care needs and their chosen health partner to be used at visits with providers to help them understand communication and decision-making preferences.