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Finding Adult Health Care

Transition (Change) in Health Care

As youth with special health care needs grow into adult age, they will need to transition from pediatric (child) health care into adult health care, and will need to find a new doctor (or other clinician, such as a nurse practitioner or physician assistant). Creating a bond with a new doctor can be easier when the child has made a slow move toward self-advocacy and handling his or her own health care during the teenage years. All adults with special health care needs deserve to have an adult-focused primary care doctor.
The goal in transitioning to adult health care is to boost function across the lifespan through high-quality, age-appropriate health care that is coordinated, continuous, and comprehensive.

What is the Role of the Medical Home?

The medical home helps the youth and family to:
  • 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 (PDF Document 18 KB).
  • Write up a Transition Self-Assessment (PDF Document 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

Transitioning to adult health care can overwhelm both parents and youth. In focus groups with parents and young adults with special health care needs, some common concerns were found and are discussed below.

Finding a doctor with knowledge of certain of disabilities and special health care needs

This was the biggest worry among parents, family members, and young adults with special health needs or disabilities. One young person stated: "My pediatrician and I worked together well when it came to my health needs. When I had shunt problems at age twenty, she was able to point out the issue just by looking into my eyes and checking a few other things. I don't know if that will be possible with my new doctor because she doesn't know me that well and I'm her first patient with Spina Bifida."

Building a new connection with adult health care

Making a connection and building trust with a new doctor was a worry voiced by all of the young people. They were worried about how long it would take and how the new doctor would help with their needs.

Parent involvement in health care

Parents were worried about changes in their role in their youth's health care. Pediatric care actively involves the parent and/or other family members. This is not the case with adult care, which tends to focus only on the patient, who often handles their own health care.

Changes in health care coverage and insurance

Parents expressed concerns about changes in health care coverage as their children made this shift. Under some health plans, there are rules that must be met to keep prior coverage. In some cases, they needed to apply for Medicaid because their children no longer met the age or dependent rules of private insurance.
One parent shared that transition was very sudden for her son with special health needs. Both the doctor and family thought the health plan covered the patient until age 25, but found out that it really only covered patients 21 years and younger. The result was a break in care for her son. Also, because her son had complex needs, there was less time to get to know his new doctor.

Tips for Youth and Young Adults

So, how do you find a doctor who will meet your youth's needs, who will be covered by your health plan, and who can give the care you are looking for?

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.
Since your health depends on your medical care, it is vital that you can talk with your new doctor and feel that he or she knows your concerns. Think about meeting with them before you make a final choice of a new doctor. You will most likely have to pay for that visit, as in most cases it is NOT covered by insurance. You should only need 15 to 30 minutes and the meeting should not waste your time or the doctor's. To learn how to speak with your doctor, see Communicating with Doctors and Other Health Care Providers (PDF Document 126 KB).
The best time to see a new doctor is when your health is good, so you aren't asking for crisis care while getting to know them.

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

Doctors who care for children are different in many ways from doctors who care for adults. For this reason, young adults taking charge of their own health care need to have certain skills:
  • A way to tell the doctor about your medical history, symptoms, lifestyle, and self-care in just a few minutes.
  • Knowing how to ask questions about your health and how it will affect your school, work, recreation, and social life. See Employment/Daytime Activities 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 (PDF Document 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 (ACEP)), 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

Authors & Reviewers

Initial Publication: July 2008; Last Update: December 2018
Current Authors and Reviewers (click on name for bio):
Contributing Authors: Robin Pratt
Barbara Ward, RN BS
Gina Pola-Money
Joyce Dolcourt
Kristine Ferguson
Teresa Such-Neibar, DO
Lynn Foxx Pease
Helen Post
Roz Welch
Reviewer: Alfred N. Romeo, RN, PhD
Funding: Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.

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.