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Youth & Young Adults

Frequently Asked Questions

Transitioning from childhood to adulthood is exciting and challenging. However, health care transition (HCT)—the process of moving from pediatric to adult model of care—often receives less attention than other transitions (such as post-secondary education, employment, and independent living). The following Frequently Asked Questions are intended to help guide you through this important transition in your life!

HCT 101

What are the Six Core Elements of Health Care Transition and what is my role in them?
The Six Core Elements of Health Care Transition is the widely adopted approach to health care transition, based on recommendations from the major medical organizations. The Six Core Elements define, for clinicians, the basic components of a structured transition process and suggested services to offer youth/young adults and parents/caregivers in their practice. Youth and young adults, along with their parents and caregivers, have a key role to play in helping clinicians incorporate this Six Core Elements process into their practice.
What are the differences between pediatric and adult health care?
The main difference between a pediatric and an adult approach to health care is that you are the person communicating with your doctor about your health (unless you sign a release of information form), as it is you—not your parents—who is making your health care decisions and managing your own care (appointments, medications, and health care insurance/payments). Of course, you can ask your parents for help on making decisions for your health, but it is you who makes the final decisions about your health. The change to this adult approach to care usually comes at age 18, even if you are still seeing your pediatric doctor.
  • This one-pager explains the differences between pediatric and adult care and offers tips for preparing to transition.
I go to a pediatric doctor, why do I have to change to a new doctor?
As you get older, you'll begin to have health needs that you probably didn't have as a child. It's important to have a doctor who knows how to keep you healthy as an adult. Pediatricians are trained to care for infants, children and teens; they are less familiar and are not trained for treating the medical conditions that happen in adults when you get older.
I see a primary care doctor and a pediatric subspecialist. Do I need to transition both my primary and specialty care? If so, do I need to make the transition to these adult doctors at the same time?
Each of your doctors has a special role in the care of you and your chronic condition. Your pediatric doctors are familiar with your primary care and chronic condition needs when you are younger but are less familiar with the effect of growing older on your body and your chronic illness. Thus, you should transition both your primary and specialty care but you should not change all your doctors at the same time. Start with transitioning your primary care doctor first. Your adult primary care doctor can then help you find the best specialists for you as you get older and you and your new adult doctor can work together to create a new care team of subspecialists for you.
My doctor is a family medicine doctor who I plan to stay with as an adult, so why do I have to think about transition?
Even though you are not changing doctors when you have a family physician or family nurse practitioner, you will transition to adult approach to care within the practice. This involves seeing the doctor by yourself, calling to make your own appointments, and learning how to give the receptionist your insurance card and to make your co-pays, if applicable. After age 18, it will be up to you to decide who can be in the medical visit, see your medical records, sign medical forms, call for refills, and pick up prescriptions. By starting early, you and your family medicine doctor will be prepared for these changes. If you see pediatric specialists (such as a dermatologist, pulmonologist, or psychiatrist), you may need to change to a specialist that cares for adults. You can talk with your primary care doctor about when and how to make this change (see the question above).
At what age should I start to think about transition?
The earlier you start thinking about transition, the more time you'll have to plan for all the upcoming changes you'll be going through, and the more prepared you'll be in the long run. Many people start planning for their health care transition in their early teens, since it takes time to practice and gain independence in making your own decisions and managing your own health.
What about other aspects of transitioning into adulthood?
Health care is just one of the many changes that will occur for you as you grow up. Changes in employment, housing, transportation, academics, and social life are also taking place during this exciting time. Understanding your own health needs and how to navigate health care will help to set you up for a successful transition into adulthood. If you are a young adult who has a developmental disability, after you graduate from the school system, you may not automatically have a "place to go" during the day or options for supported employment, so explore options through local agencies such as The Arc, Family Voices, or your Developmental Disabilities or Rehabilitation Service agencies.

Taking Charge of Your Health

What should I be asking my doctor about transition?
As you get older, let your doctor know that you want to become more independent. This includes meeting with your doctor alone for at least part of the visit. Not only is it good to talk about some things privately, but you may get more comfortable asking questions about your own health. Before you turn 18, make sure to ask about your rights to privacy and how these change as you get older. If you go to a pediatric doctor, find out when you will have to leave the practice and switch to an adult doctor. When the time gets closer to switching doctors, ask what your doctor's office will do to help you with this process.
How can I keep track of my health care information?
It can be helpful to use a calendar on your phone to help you remember doctor appointments and medication refills. Many teens and young adults also keep a printed medical summary or their key health information on their phone that has a list of all of their medicines, allergies, emergency contacts, and past medical problems. Be sure to have a place where you keep all of your medical records you get from medical appointments, emergency room visits, insurance companies and pharmacies—this information can be helpful later!
What should I bring with me to my appointments and have after the appointment?
Leading up to your appointment, think of questions you might have and jot them down in your phone or in a notebook. Remember to bring your insurance card and note any changes in your medications/health since your last visit. Many types of insurance require you to pay a fee for the visit (called a co-pay), so call ahead and ask what that fee it and bring along a credit card or cash. As you leave your doctor's office, be sure that you understand any instructions you have been given from the doctor, and don't forget to schedule your next appointment!
How can I become more in charge of my own health care?
This does not happen overnight. Just as with everything, taking the first steps can be the most difficult, but once you make your first appointment or order your first prescription, the second and third times become a lot easier. You will get more comfortable seeing your doctor alone and asking them to explain things more clearly when you don't understand. Understanding what your doctor suggests and making your own decisions about your health will make you feel more in control of your own care.
  • Using a transition readiness assessment can be helpful to think about the skills that you need to manage your own health care.
  • See if you are ready to transition to adult care with this online quiz.
  • Watch an example of a youth taking charge of her own health care in this video.
Transitioning to adulthood can be stressful. How can I take care of my mental health during this time?
Getting used to this new life stage takes time and sometimes added support. So many changes take place that it can be very stressful. Symptoms of stress come in many forms: physical symptoms like difficulty sleeping or headaches, emotional symptoms like feeling overwhelmed or angry, and cognitive symptoms like difficulty concentrating or forgetfulness. While it is perfectly normal to feel stress from time to time, sometimes your usual coping strategies (e.g., talking with friends, sleeping, exercising) do not work. That would be a good time to talk with a mental health counselor who can help to address your concerns. It is ok if you need to talk to someone when you are feeling stressed. It is nothing to be ashamed of, and there are professionals that are there to help. Importantly, most mental health conditions begin before the age of 24, and there are good effective treatments available.

Navigating the Health System

As I turn 18, what legal changes in health care do I need to know about?
Probably the most important change that happens at 18 is that your parents or guardian(s) no longer have legal control over your health care decisions. As a legal adult, you are the one that consents to medical treatment and are the only one that can access your medical information. If you want to have your family or others involved in making your health care decisions or knowing your medical information, you will need to give written permission to your doctors.
How do I find a new adult doctor, and how do I know if they are a good fit for me?
Finding a new adult doctor who meets your needs can take some time. One of the best places to start is with your current doctor. You and your family can also talk with people you know to find out what adult doctor they are seeing. Your health insurance plan has a directory of doctors for you to choose from. Once you decide on a few names, call their offices and ask the office staff about whether the doctor is taking new patients, accepts your insurance, and whether the doctor is familiar with seeing patients with your condition. After the visit, you can decide if you were comfortable with this doctor, and want to keep seeing them. Remember that it takes some time to form a trusting relationship with a new doctor.
  • Here are transition-related questions for you to discuss with your doctors.
  • Check out a list of tips in "Finding and Using Adult Health Care" prepared by KY Commission for Children with Special Health Care Needs.
What should I know about my health insurance?
Understanding the basics of insurance coverage is really important, but often scary. Most importantly, remember to keep your insurance card with you at all times and be sure to put the phone number for member services in your cell phone. To understand your health insurance, the first thing to know is what type of insurance coverage you have: do you have a plan that requires you to get most of your care from one group of doctors (an HMO) or can you go to different doctors that accept your insurance (PPO). In both of these types of plans, there are rules about which services you need to get approved before you use them (e.g. hospitalizations).

If approval is not received, your insurance company might not pay for the services. There are four types of charges that you will need to understand when you are getting care: 1) the amount you pay each month for your insurance (premium), 2) the amount you owe for health services before your insurance will begin to pay for them (deductible), 3) the amount you have to pay for covered health services (either a dollar amount or a percentage of the total charge), and 4) the limit that you pay before the insurance begins to cover all of the costs (out-of-pocket limit). If you are not insured, it's important to visit to see what options you have. As a warning, "catastrophic" plans are inexpensive, but you will end up paying most of the costs of your care if you get sick or have an emergency. This type of plan may not work for someone who has special health care needs, and regular medical expenses. If you have the choice of staying on your parent's plan until 26, it is a great option. There are people that can help you figure out your coverage, or the best coverage for you if you don't have insurance:
Will Medicaid coverage change when I turn 19? What about coverage under the Children's Health Insurance Plan (CHIP)?
Find out about your state Medicaid coverage for young adults before you turn 18. Every state is different. Medicaid coverage for adults is typically less generous than it is for children. With the Affordable Care Act, there have been new Medicaid expansions for adults ages 19 and older, but not every state has adopted them. CHIP coverage is only through age 18.
I am planning on going to college. How can I transition my health care to my new college?
Going to college can be an exciting step towards independence and taking care of your own health is a major part of that process. This is a good time to figure out what insurance coverage you have and that it will be accepted by the clinic at or near your college. Find out what services are offered by your college's student health center. Be sure to visit the college medical center when you go on a visit the college, and learn what hospitals or medical facilities are nearby in case of an emergency. It can be helpful to keep a recently updated medical summary handy for any new doctors you may see. Be sure to know the steps you should take in case of an emergency. In college, the staff and faculty are there to help you succeed so don't be afraid to ask for help!
If you have special health care needs, you will need to be your own advocate in college... but there are people that can help you! When you start at a new school, meet with your school's Disability Services Center, which can help you set up accommodations in your classes and offer tips on how to explain your needs to your teachers. It will be up to you to explain your health needs to your teachers and classmates, and keep in mind that doing so can benefit you when you need some flexibility in coursework or deadlines. Even if you don't think you need these accommodations at the time, it doesn't hurt to have things in place in case you get sick!

Visiting Your New Adult Doctor

What information does my current doctor need to send to my new doctor? How can I help?
It is best if your new doctor knows about you and your health condition before you arrive for your first visit. Ask your current doctor to send a copy of your medical summary and emergency care plan. Some doctors will include a letter with your medical records or make a call to the new doctor. If you have anything, either medical or non-medical (such as a hobby or activity that is important to you, for example), that you want your new doctor to know to help them get to know you, tell your current doctor to include it in that letter or call. If you have a rare or complex condition, it can be helpful to ask that your pediatric doctor send a description of what to expect with your condition, including what is known about the condition as you get older. Before your first visit with the adult doctor, you can check in with your new doctor's office to be sure that they received your medical information.
  • This is an example of a medical summary that you will want to have from your doctor.
What questions should I ask about my new doctor's practice?
There are several things to figure out before arriving at a new doctor: how to make and cancel appointments, transportation options, wheelchair access, when to arrive, what you pay, and what you need to bring with you. You should ask about what services are available at the doctor's office (for instance, can you get blood drawn there, do they have social workers or psychologists on staff, where do they do things like X-rays?). It is also helpful to ask how to communicate with the office (call, text, email, online portal).
How do I improve health care transition for others?
Check back in with your pediatric practice to let them know that you safely landed in adult care. If you have a chance, share what was helpful and what didn't work (such as whether or not you like your new adult doctor, or if a nurse was helpful in explaining transition). Becoming an advocate for yourself and other people is a good way to help others with transition. Consider talking to your peers to help them take charge of their own care and to plan for independence.

Click here for a Toolkit with helpful transition-related resources for you and your family!

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