Our kids spend a lot of time with their doctors and therapists.
And we spend a lot of time on their medical care too. We manage those appointments. We talk to health insurance companies about getting things covered. And we work hard in general to make sure our children’s medical teams work well for them.
As your child becomes an adult, their medical care will also change. Doctors who work with children will be replaced by doctors who work with adults. Waivers and health insurance programs designed for children will be replaced by waivers and insurance programs designed for adults. And, legally, your now-adult child will be responsible for managing all of their medical care unless you put protections in place.
Over time, we can help our children learn to take charge of some or all of their medical care themselves, teaching them to talk to the doctor about their symptoms, showing them how to schedule visits, and making sure the doctor talks to our child during the appointment. It’s a lot to adjust to. Here are some facts, ideas, and tips we’ve gathered from other parents to help you and your child go through this change.
Involving Your Child
One of the biggest parts of a medical transition is the shift in who the doctor expects to talk to. When you have a baby or younger child, doctors expect you, as a parent, to tell them what that child needs. But doctors who work with adults are used to talking to their patients directly.
We realize that not all children will be able to take over management of their own health care. You can read over the Got Transition checklist for youth for a list of specific skills your child will need, like managing insurance and payment, describing symptoms, and knowing what to do in an emergency. And you can see our Legal Options for Age 18 and Beyond page for some ways to help protect your child in areas where they aren’t able to manage their own care.
And, if you start early, you can prepare your child step-by-step to be ready for as much of their own care as they’re able to manage. Here are some ideas to help your child get ready:
- Have your child greet the doctor at the start of each visit.
- Encourage your child to tell you if something hurts or is bothering them. Then have your child practice telling this to the doctor. Making a script, writing a list, or role-playing before you go to the doctor might help your child be more comfortable.
- Ask your child to come up with at least 1 question to ask the doctor on each visit. Write or record the questions ahead of time to bring with you. If your child uses a communication device, just enter their questions into it before you go.
- Teach your child about their medical needs. As you do something for them, explain why you are doing it. Ask them to start explaining these things back to you.
- Show your child their care notebook and your filing systems so that they know where things are and what to keep track of. Ask them to help you read over paperwork, organize it, and more – as much as they can do. Read our Organizing Medical Records page to learn more.
- Take them with you to the pharmacy and show them how to use call-in or online refill systems. Have them ask for their own prescription when you pick it up. You can role-play this beforehand. And, if your child uses a communication device, enter these questions into it before you go.
- Have your child start helping you fill out their medical forms and schedule doctor’s visits. This might be you reading the questions to them and talking about the answers as you write them. Or having them listen in as you call and schedule a visit. Many doctor’s offices are now putting forms and appointment requests on their websites, so you and your child can just use a computer at home.
Making the Change to Adult Care
You don’t have to manage these big changes alone. If you are using the medical home model, the core medical team your child has been seeing can help your child get ready for this transition. Even though they might be transitioning out of being your child’s main team, they can help make the move to a new medical home smoother.
Making a Medical Transition Plan
Here are some of the steps:
- Have a meeting with your child and their primary medical team to talk only about medical transition. You can do this as early as your child’s 14th birthday.
- Talk about each of the skills that your child will need to take part in adult health care. These include explaining their medical needs, knowing what to do in case of a medical emergency, being able to fill a prescription, managing health insurance, and getting themselves to a doctor’s visit, among other things. Make a plan to target the skills your family is going to work on first, and then later. Use it to figure out where your child will need extra help.
- Go through the list of your child’s doctors, therapists, and specialists to see which ones also work with adults. Work with your child and your medical team to decide who is going to replace the doctors that have to change.
- Work together to create a timeline for changing each of these doctors. The timeline might depend on your child’s abilities and what medical care skills they’ve developed.
- When it's time to transfer to a new doctor, ask your current medical team to be part of the process. See if there is a nurse coordinator who can gather the information from your current team and come to a meeting with your new team to share recommendations. They should also send along any files, records, or other background that will help the new doctor learn about your child's medical history.
Just because you start working on this plan when your child is 14 years old doesn’t mean you have to get the whole plan together overnight – or even in a year. Transition is a process, and creating a good plan is a process too. It will need to be updated as your child grows and changes in their teens.
Finding and Working With a New Doctor
Many of us have been through the switch to a new doctor. We have a page full of general tips for talking to (and working with) your child’s doctor. But, in the transition time, there are a few other things you can do to find the right doctor and make things go more smoothly.
- Connect with other parents to find adult doctors in your area who work well with adults with disabilities or special health care needs.
- Think about your own doctors. Would they work well with your child?
- Ask for recommendations from your child’s doctors. Maybe they also work with adults or have someone in their practice who does.
- Make a short 1- or 2-page summary of your child’s medical history that you can hand to any new doctors. Dimensions is an organization that offers many examples of these summaries. If you have a Letter of Intent (LOI), this could help you too.
- Include your child. Have them help you find or interview some of the doctors.
- Think about making the transition a little early, before you absolutely have to, so you have enough time to get help if you run into any problems.
The Health Insurance Transition
Group or private health insurance plans will let your child stay on your plan until they turn 26 years old – or longer, depending on their disability or special health care need. This gives you and your child time to figure out how they will get their own insurance coverage. Here are some ways to get insurance.
- Private insurance: The Affordable Care Act makes sure that everyone can get private health insurance, despite any pre-existing conditions.
- Employer-provided insurance: If your child is employed, they may be able to get insurance through their employer.
- Staying on your insurance: Depending on your child’s disability or special health care need, they can stay on your plan, even when they turn 26 years old. Talk to your insurance provider to see how to keep your child on your plan.
- Medicaid: Based on your child’s income, they might be able to get insurance coverage through Medicaid. At age 18, Medicaid only looks at your child’s income instead of the family income.
- Medicare: If your child receives Social Security Disability Insurance (SSDI) benefits, they can get insurance coverage through Medicare after they have SSDI benefits for 24 months.
To find out how to apply for these programs, please see our insurance section and our Medicaid page.
“Recently, I went with Jake to his first visit with a physician. I was really just there for moral support. When the nurse came into the exam room with the clipboard and many pages of medical forms, she handed it to me instead of Jake. In front of her, I handed it to Jake and said, ‘here you go.’ He was no stranger to this process, but the nurse was surprised to see that an individual with autism could actually fill out his own medical forms. Imagine that!”
- Parent Quote
“As a doctor who treats both children and adults, I know how important it is for a child with disabilities and special health care needs to be able to talk about their disease or condition from as young an age as possible. Hearing a young adult patient explain their disease to me, makes me comfortable that this person will be able to navigate their new health care system. I like to start off asking my new adult patients with pediatric conditions to tell me about their disease/ condition. It helps the young adult and the adult provider build a relationship and work together.”
- Doctor Quote