The journey from childhood to adulthood is a period of immense growth, self-discovery and new responsibilities. One significant change is the move from pediatric to adult health care.
When your child was growing up, you spent a lot of time on their medical care. You made appointments, talked to the insurance company and filled prescriptions. Over time, your teen will learn to take charge of some or all of their medical care.
If you are a parent of a teen with a disability or complex health care needs, this change can feel overwhelming. There are many additional aspects of their care to consider.
While it’s important to be supportive in this transition, it’s also important for your teen to make decisions for themselves – even if you have the urge to make it for them.
Read on to understand how to encourage your teen to take a more active role in their care.
Start the transition early
Transition isn’t a single event but a gradual process. Getting ready for this change can start early and continue after your teen starts to see their new provider or health care team.
Planning ensures your teen has a smooth transition and helps identify any possible problems or challenges early on so you can address them.
“Begin discussions about the transition during routine appointments to make sure everyone is on the same page about future health care needs,” said Heather Bartz, DO, an internal medicine and pediatrics specialist with Banner – University Medicine.
Some questions you may want to ask the provider as you prepare for the transition:
- What is the age limit for the patients you care for? Can you continue to see my child beyond the normal age limit? Can there be an overlap between you and the adult provider?
- How many specialists will my child see in their 20s and beyond?
- Can you recommend adult providers or specialists who understand my child’s unique needs?
- Can you connect us with organizations or groups that support individuals during this transition?
- Does the medical office assist in the transition?
Create a transition plan
Work with your child’s provider and specialists to develop a transition plan. The plan should outline the specific steps and timeline for the transition.
“Many pediatric and provider practices that care for patients with disabilities have a care coordinator or social worker who can help write down your plans for the transition so you can track your teen’s needs and ensure there are no gaps,” Dr. Bartz said.
You can also check out Got Transition, a federally funded national resource center on health care transition, for additional information. It has resources on health care transitioning, including full self-assessments of transition readiness for parents, youth and young adults, as well as sample transition timelines.
Build independence
Your teen plays an important role in the transition. “If they can participate, allow your teen to make decisions in their health care and make choices surrounding their providers, timing and future care,” Dr. Bartz said.
You can gradually involve them in managing aspects of their health care. Here is a general guide to help you. These may vary depending on your teen’s ability.
Early teen years (up to 18)
- Practice scheduling health care appointments with your help.
- Let your teen lead the appointment and spend time speaking with the health care provider alone.
- Practice asking the provider questions and sharing symptoms and feelings.
- Learn about their health condition and reasons for treatment. Keep a personal health record with their medical history, past treatments, surgeries and hospitalizations.
- Learn basic concepts of health insurance coverage.
- Check themselves in for their appointment and help fill out any paperwork.
- Learn how prescriptions are filled and refilled. Understand the names and purposes of medications.
Later teen years (18+)
- Take medications independently and consistently. Understand the possible side effects and how to manage them.
- Make their medical appointments.
- Actively participate in medical decision-making. Communicate directly with their health care provider and specialists.
- Engage in online communication with providers and specialists.
- Keep all medical paperwork in one location or store electronically.
- Manage health insurance information, including co-pays and deductibles.
Explore legal rights and medical coverage
Once your teen turns 18, you may no longer consent to medical treatment on their behalf unless a document gives you that authority.
If your teen cannot make decisions on their own behalf, you will need to complete a legal transfer. Supported decision making (SDM) agreements, power of attorney for health care decisions and adult guardianships are three well-known legal options, but there are more.
Your teen may also not be able to stay on your private insurance. With some insurance plans, your teen may be able to stay on your plan until age 26 or longer if they have a verified disability that started before age 22. If you aren’t able to keep your child on your policy, they will need to purchase their own policy or apply for Medicaid.
A social worker or care coordinator can walk you through both processes.
Identify adult health care providers
Narrow down a list of a few adult health care providers.
“When looking for an adult provider, many people like to find someone trained in internal medicine and pediatrics (meds-peds) or family medicine since they have some pediatric background, but any internal medicine provider can provide good care,” Dr. Bartz said. “The key is finding someone with the time and expertise to care for your teen or young adult’s medical needs.”
Once you’ve gathered your list, sit down with your teen and make a list of questions to ask each one. Schedule interviews and then discuss which provider your teen feels most comfortable with.
[For additional help, read “How to Choose a Doctor Who is the Best Match for You.”]
Prepare for the transition
At first, it may be a good idea to overlap appointments between the pediatric and adult care teams. This can ensure a smooth transition and the best possible continuity of care for your teen.
“Make sure all important medical records are shared between the old and new providers,” Dr. Bartz said. “This helps your new provider better understand your child’s health history.”
Takeaway
Transitioning from pediatric care to adult health care can be challenging for you and your teen. Stay positive, provide emotional support and celebrate milestones along the way.
