Finding adult health care providers who understand your family member’s health condition and who are sensitive to working with people with intellectual and developmental disabilities can be a challenge. During the transition process, you should work with the pediatrician to make sure the move to adult health care goes smoothly. One way to partner with your doctor is through the medical home approach. Resources to help you work with health care providers and find new ones include:
- Partnering with your Doctor: The Medical Home Approach (Region 4, Genetics Collaborative) Provides tip sheets on questions to ask when choosing a doctor, topics to discuss with the doctor related to transition, maintaining a health partnership, cultural values, and others.
- Planning for a Healthy Transition (Washington State) Brochure covers many areas of health transition including tips on finding and using adult health care.
Recommendations for adult care providers may come from your pediatrician, other families, support or advocacy groups, or other community or school-based organizations. Look for family support or advocacy groups, family trainings, or Special Education PTA’s to get information. Parent to Parent is a nationwide organization that provides support on a local level. The national website will direct you to your statewide program:
Social media sites also provide an opportunity to find or start a support group.
Once adult health care providers are chosen, it is important for pediatricians to communicate with them. They need to transfer information such as medical history and care plans to them. Checklists such as the following can help this process.
- Transfer of Care Checklist (Got Transition)
The pediatrician should also include a transfer letter or form with the package of information. Samples include:
- Transfer Letter (Got Transition)
- Clinical Summary for New Health Care Team (National Diabetes Education Program)
Communication between pediatric and adult health care providers is essential. Families should encourage this communication early in the transition process.