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Parents & Caregivers

Frequently Asked Questions

Watching your child* transition 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 in your youth's life (such as post-secondary education, employment, relationships, and independent living). The following Frequently Asked Questions are intended to help guide you through this important transition in your child's life!

* "Your child" or "your youth" are used interchangeably throughout these FAQs to refer to both biological and non-biological transition-aged dependent persons.

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. You and your youth/young adult 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 your child is the person communicating with the doctor about their health (unless they sign a release of information form), as it is your child — not you — who is making their health care decisions and managing their care (appointments, medications, and health care insurance/payments). Of course, they can ask you for help on making decisions for their health, but they make the final decisions about their health. The change to this adult approach to care usually comes at age 18, even if your child is still seeing their pediatric doctor.
  • This one-pager breaks down the differences between pediatric and adult care and offers tips for preparing to transition
My child goes to a pediatric doctor; why do they have to change providers?
Having a different doctor just makes sense—you would not expect your child to have the same math teacher in 11th grade as they did in 2nd grade. Health and health care are very personal experiences, and health care needs change as your child gets older; so it makes sense that as children grow into their young adult years, part of their transition includes finding a new health doctor who can respond and relate to them during this phase of their life.
My child sees a primary care doctor and a pediatric subspecialist. Do they need to transition both their primary and specialty care? If so, do they need to make the transition to these adult doctors at the same time?
Each of your child's doctors has a special role in caring for them and their chronic condition. Their pediatric doctors are familiar with their primary care and chronic condition needs when they are younger but are less familiar with the effect of growing older on your child's body and their chronic illness. Thus, your child should transition both their primary and specialty care but should not change all their doctors at the same time. Start with transitioning your child's primary care doctor first. Their adult primary care doctor can then help find the best specialists for you and your child as your child gets older, and your child and their new adult doctor can work together to create a new care team of subspecialists.
My child's doctor is a family medicine doctor who they plan to stay with as an adult, so why do we have to think about transition?
Even though you are not changing doctors when you have a family physician or family nurse practitioner, your child will transition to an adult approach to care within the practice. This involves seeing the doctor alone, calling to make their own appointments, and learning how to give the receptionist their insurance card/make their co-pays, if applicable. After age 18, it will be up to your child to decide who can be in their medical visit and see their medical records, sign medical forms, call for refills, and pick up prescriptions. By starting early, your family medicine doctor will help ensure that you and your child are better prepared for all of these changes. If your child sees pediatric specialists (such as a dermatologist, pulmonologist, or psychiatrist), they may need to change to a specialist that cares for adults. You and your youth can talk with their primary care doctor about when and how to make this change (see the question above).
At what age should my child and I start to think about transition?
Begin to think about health care transition for your child based on their individual needs. For a child with special health care needs, it often helps to begin planning for this transition in alignment with the Individualized Education Plan (IEP) transition planning at school, which often begins around age 14. You can also align your child's health care transition "training" with other independent living skills (e.g. making sure your child has their insurance card when they go away to summer camp). Even though it helps to link education or other transitions to health care transition planning, it's always important to talk with your child's doctors about transition.
  • This transition timeline offers an idea of when changes in your youth's health care may happen.
What about other aspects of transitioning into adulthood?
Health care is one of the many changes that your child will experience as they grow up (along with changes in employment, housing, transportation, academics, and social life). It is important to plan for all these changes and to understand how important it is for your child to manage their own health and navigate the health care system during this transition into adulthood. For some young adults with special needs, there may be options for things like supported employment and other support services through local agencies such as The Arc, Family Voices, or your Developmental Disabilities or Rehabilitation Service agencies.

Taking Charge of Health

What should I be asking our doctor about transition?
As your youth gets older, ask their doctor about their office's process for transitioning to an adult doctor. Find out when the practice will no longer see your youth and how the transfer to an adult doctor actually works. Make sure your youth has at least some time alone with their doctor. Ask for a copy of your youth's medical summary. Transition often goes much more smoothly when parents and caregivers are more proactive and partner with their child's doctor.
How can I encourage my child to keep track of their own health care information?
It can be helpful for your child to use a calendar on their phone to help them remember appointments and medication refills. Print a medical summary for them that has a list of all of their medicines, allergies, emergency contacts, and past medical problems. Encourage them to have a place where they can keep all of their medical records they get from medical appointments, emergency room visits, insurance companies and pharmacies—this information can be helpful later!
What should my child bring with them to their appointments?
Leading up to their appointment, work with your child to write down some questions they might have. Remind them to bring their insurance card and note any changes in their medications/health since their last visit. Many types of insurance require you to pay a fee for the visit (called a co-pay), so call ahead to find out what that fee will be and remind them to bring along a credit card or cash.
How can I encourage my child to become more in charge of their own health care?
Encourage your child to take a transition readiness assessment to figure out what they already knew about health care. Then complete the parent/caregiver version yourself so that you can compare answers. It can be fun and informative to see how some of your answers are the same and others are different. This often leads to a deeper discussion about gaining independence.
As a parent, how can I prepare to "let go" of managing my child's health care?
Launching your child into the world as an adult can be scary and hard. You may not be able to imagine them surviving without relying on you to guide them through each new step in their life. But it's important to give them a chance to gain confidence in themselves so they can be independent in taking care of themselves, depending on their level of health care needs and support.
  • This one-pager describes the changing roles of parents/caregivers and their youth during the transition to adult care.
Transitioning to adulthood can be stressful for youth and young adults. How can my child take care of their 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 for your child. Keep a lookout for symptoms of stress in your child, from physical symptoms (like difficulty sleeping or headaches) to emotional symptoms (feeling overwhelmed or angry) or cognitive symptoms (difficulty concentrating or forgetfulness). While it is perfectly normal for your child to feel stress from time to time, sometimes their usual coping strategies (e.g., talking with friends, sleeping, exercising) do not work. Encourage them to seek out a mental health counselor who can help to address concerns. Importantly, most mental health conditions begin before the age of 24, and there are good effective treatments available.

Navigating the Health System

As my child turns 18, what legal changes in health care do they need to know about?
Probably the most important change that happens at 18 is that you no longer have legal control over your child's health care decisions. Instead, only your child can consent to medical treatment or access their medical information. If they want to have you or others involved in making their health care decisions or knowing their medical information, they will need to provide written permission to their doctors.
If my child needs help with making health care decisions, what are our options?
As a parent of a child with significant health care needs, it often comes at a shock that the law won't automatically recognize you as a legal authority in your child's life. When your child turns 18, you will need to complete legal paperwork and possibly also appear in court to be sure you can act as their guardian. In the eyes of the law, your child is an adult regardless of their ability to make decisions. There are more options than you realize for decision-making after age 18, ranging from the least restrictive (signed consent form at doctor's office) to the most restrictive (legal guardianship). Whatever your child's needs may be, preparing for these changes early in adolescence and continuing through late adolescence and young adulthood is important. Essentially there are informal and formal options, and these laws and options vary by state. The informal options for shared decision-making with a family member or trusted friend include confidentiality waivers and health care powers of attorney. The formal option is legal guardianship where someone is appointed to act as a guardian. Guardianship can be set up in different ways—temporary, emergency, or limited. Disability organizations can help guide you to free or inexpensive legal resources to facilitate these processes.
How do I find a new adult doctor for my child, and how do I know if they are a good fit for them?
Finding a new adult doctor who meets your child's needs can take some time and careful planning, especially if your child has special health care needs. One of the best places to start is with your current doctor. You can also start by asking some parents of youth who have the same condition as your child. More often than not, other parents can be the best source of information when it comes to doctors who work well with young adults with special needs. Once you decide on a few names, work with your child to call their offices and ask the office staff about whether the doctor is taking new patients, whether the doctor accepts your insurance, and whether the doctor is familiar with seeing other patients with your child's condition. After the visit, check with your child to see if they were comfortable with this new doctor. Remind them that it takes some time to form a trusting relationship with a new doctor.
What should my child know about their health insurance?
Understanding the basics of insurance coverage is really important, but often scary. Most importantly, remind your child to keep their insurance card with them at all times and encourage them to put the phone number for member services in their cell phone. To understand health insurance, the first thing they need to know is what type of insurance coverage they have: a plan that requires them to get most of their care from one group of doctors (an HMO), or can they go to different doctors that accept their insurance (PPO). In both of these types of plans, there are rules about which services need to get approved before they can use them (e.g. hospitalizations).

If approval is not received, the insurance company might not pay for the services. There are four types of charges that they will need to understand when they are getting care: 1) the amount they pay each month for the insurance (premium), 2) the amount they owe for health services before the insurance will begin to pay for them (deductible), 3) the amount they have to pay for covered health services (either a dollar amount or a percentage of the total charge), and 4) the limit that they pay before the insurance begins to cover all of the costs (out-of-pocket limit). If your child is not insured, it's important to work with them to visit to see what options they may have. As a warning, "catastrophic" plans are inexpensive, but your child will end up paying most of the costs of care if they get sick. If your child has the choice of staying on your plan until 26, it is a great option. There are also people that can help them figure out the best coverage if they don't have insurance:
Will Medicaid coverage change for my child when they turn 19? What about coverage under the Children's Health Insurance Plan (CHIP)?
Find out about your state Medicaid coverage for young adults before your child turns 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. can be helpful in finding out this information. CHIP coverage extends only through age 18.
My youth is planning on going to college. How can I help them transition their health care to their new school?
Going to college can be an exciting step towards independence for a young adult and taking care of their own health is a major part of that process. You may want to meet with each school's health center when deciding what school your child wants to attend. It's important that your child knows where these services are at each campus and whether the staff can meet their needs. This is a good time to encourage your child to figure out what insurance coverage they have and determine whether it will be accepted by the clinic at or near the school. Help them find out what services are offered by the college's student health center. Help them develop a recently updated medical summary for any new doctors they may see in college.
If your child has special health care needs, they will need to be their own advocate in college... but there are people that can help! When they start at the new school, encourage them to meet with the school's Disability Services Center, which can help set up accommodations in classes and offer tips on how to explain their needs to their teachers. It will be up to your child to explain their health needs to teachers, so it's important to remind them that doing so can benefit them they may require some flexibility in coursework or deadlines.

Visiting the New Adult Doctor

What information does my child's current doctor need to send to their new doctor? How can I help?
It is best if the new doctor knows about your child and their health condition(s) before they arrive for that first visit, so help your child reach out to the current doctor to send a copy of their medical summary and emergency care plan. Some doctors will include a letter with the medical records or make a call to the new doctor. If your child has a special condition, it can be helpful to ask that the pediatric doctor send a description of what to expect with that condition as your child gets older. Before your child's first visit with their new adult doctor, encourage them to check in with the new doctor's office to be sure that they received all their relevant medical information.
  • This is an example of a medical summary that you will want to have from your doctor.
What questions should my child ask about the new doctor's practice?
There are several things to figure out before your child arrives at a new doctor: how to make and cancel appointments, transportation options, wheelchair access, when to arrive, what they need to pay, and what they need to bring with them. You and your child should research what services are available at the doctor's office (can they get blood drawn there? are there social workers or psychologists on staff? where do they do things like X-rays?). It is also helpful to ask what is the best way to communicate with the office (call, text, email, online portal).
How do my child and I improve health care transition for others?
Check back in with your child's 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 and your child like their new adult doctor, or if a nurse was helpful in explaining transition). Encouraging your child to become an advocate for themselves and other people is a good way to help others with transition.

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

An African-American young adult male in a wheelchair smiling and holding school supplies African-American young adult having a telemedicine appointment with African-American doctor Waving and smiling African-American young adult man