Finding Adult Health Care
Transition (Change) in Health Care
What is the Role of the Medical Home?
- Select an adult health care doctor who can work with the challenges of the youth’s condition or disability and accepts their health insurance.
- Put together and keep up a portable up-to-date Medical Summary (
35 KB).
- Write up a Transition Self-Assessment (
83 KB) by age 14.
- List what care is needed, who will provide it and how it will be paid for.
- List preventive care in the plan.
- Make sure there is ongoing health insurance coverage.
What Youth and Families Want
Finding a doctor with knowledge of certain of disabilities and special health care needs
Building a new connection with adult health care
Parent involvement in health care
Changes in health care coverage and insurance
Tips for Youth and Young Adults
Before you start looking for a new doctor, think about what you want:
- Do you need your new doctor to have experience with your health issue?
- Do you think you can teach the doctor about your health issue or link them with those who could give more insight?
- Do you need an office that is wheelchair accessible, or other special assistance in the doctor’s office?
- Is the office location important?
- Will you need help with transportation?
- Which means most to you: someone who will take time with you during an office visit, or someone who is an expert in his or her field but can only see you for a short amount of time?
- How do you reach the doctor at times other than office hours?
- What hospital do you use, and is this doctor on staff or able to talk to the staff there?
In your search for a new doctor:
- Ask your doctor for references.
- Check out the doctor your parents or other family members see.
- Contact a family support group or adult disability office for recommendations.
- Ask for recommendations from adults who have health needs like yours.
- Look at your health insurance booklet of approved providers.
- Ask a Vocational Rehabilitation or Independent Living Center counselor.
- Find a university health center (sometimes there are research studies going on which offer free care).
- Reach out to your local medical society, American Academy of Family
Practitioners, or internal medicine society on their websites for
referrals.
To find community services mentioned above, see Services Directory.

Think about (and write down) questions:
- Does the doctor know how to treat your health issue and/or is he or she willing to learn from you and from past doctors?
- Do you like how the doctor works with you?
- How does the office manage an emergency or crisis?
- See also the Assistance in Choosing Providers section of the Medical Home Portal.
Tips for being in charge of your own health care
- A way to tell the doctor about your medical history, symptoms, lifestyle,
and self-care in just a few minutes.
- Always carry your own records, such as a
Medical Summary (
35 KB) and a summary of your Family History (
110 KB).
- Always carry your own records, such as a
Medical Summary (
- Knowing how to ask questions about your health and how it will affect your school, work, recreation, and social life. See After High School Options and Recreation Activities.
- Knowing how to tell the doctor about your needs for education, technology, and accommodations, and to ask if you need help getting these needs met. See Education.
- To be willing to follow plans that have been developed by you and your doctor.
- Following up with an Action Plan (
12 KB).
- Keeping yourself well:
- With diet, medication, and treatments
- With self-care
- By getting help when you feel angry, lonely, or sad
- Being aware of your symptoms and health needs before you have a medical crisis and knowing when to call your doctor.
- Making a plan for emergency care (see Emergency Information Form (EIF) for Individuals with Special Health Care Needs (
61 KB)), including:
- When to see with the doctor
- What hospital to go to
- What care you want and do not want
- Naming someone who can let your wishes be known if you cannot (designated care giver)
- Understanding your health care plan (see
Health Insurance/Financial Aids), including:
- When to call for pre-approval
- How to get reimbursements
- What is not covered
- How to file an appeal if you do not agree with decisions made by the plan (see Appealing Funding Denials)
- Knowing that as you become more able to manage your own
health care that you, not your parents, should:
- Make medical appointments
- Be the one that knows the most about your health needs
- Know when to seek guidance in solving problems
- Show that you are able and ready for adulthood!
Resources
Information & Support
For Parents and Patients
Healthcare Transition Resources
This site has downloadable workbooks on transition that can be used by parents in any state. Provided by the Florida Health
and Transition Services (HATS), University of Florida.
Youth/Young Adult Transition Needs Assessment ( 91 KB)
Provides a user-friendly worksheet to help the youth or young adult with special health care needs prepare for transition
to adulthood; from the Utah Family Voices Health Information & Support Center, adapted from Florida.
My Health Passport (FCIC) ( 539 KB)
This passport can be filled in with important information to help health professionals better support children with special
needs during hospital or clinic visits; Florida Center for Inclusive Communities.
Excerpts used with permission from Kentucky Commission for Children with Special Health Care Needs, KY TEACH Project, MCHB Healthy and Ready To Work Projects, and Shriners Hospitals for Children.