Healthcare transition is the process of moving from your childhood (pediatric) doctor to the doctor you will see as a young adult. That may seem scary to some, but you should not worry. Transition does not happen in one day, and if you run into problems you can always ask for help. It can be a lot to wrap your head around when you think of healthcare transition, but these three E’s will help you transition with ease:
Explore — in this first step of healthcare transition, you will be learning about what transition is and what to anticipate from the other steps to transition
Equip — this step of transition will help you to build the knowledge and skills you need to navigate adult healthcare
Execute — during this step, you will use your new skills and knowledge to move from your child to adult doctor
If you are a teen living with epilepsy, chances are you are going to go through healthcare transition multiple times because your primary doctor and any specialists you see, like a neurologist or epileptologist are going to change. The first step toward this healthcare transition is to EXPLORE how the process works so you can identify the knowledge and skills that you need to build in order to make the transition successful. Most doctors have a standard way of transitioning their patients to a new provider, so you can start by talking to your doctor. Your parents and family are another great resource. Throughout the year, we plan events and programs to help youth prepare for health care transition, so be sure to check our event listing.
Check out the videos below for an introduction to transition and why you should start thinking about it now:
If your teen is starting to talk about healthcare transition, it is time for you to prepare for your child becoming more independent. A parent’s role is to watch over their kids and teach them everything they can, so that they will be prepared to take control when the time comes. The resources below can help you support your teen’s exploration of transition:
Healthcare transition can feel overwhelming, but this video will introduce you to things that you can start thinking about now. The earlier you start thinking about healthcare transition, the quicker and smoother the process will be. The resources below can help you explore transition.
In this phase of transition you are starting to take charge of your healthcare. When it comes time for a doctor’s appointment, you should check yourself in, know what type of health insurance you have, and be prepared to fill out the medical history paperwork. That is a lot of information to learn and remember, but the upside of transition is that it does not occur overnight. This phase of the process is practice for the final step when you start seeing your new adult doctor. There is no need to be overwhelmed because there are many helpful tools that are available to equip you.
One great way to stay on top of your medical history is by typing it into a medical history bracelet. You can request a free EAWCP USB medical bracelet by contacting Jordan at 800-361-5885. You can also download the fillable pdf. Sitting down to fill out this pdf is a great way to learn your medical history and prepare you to answer questions from your doctor. You can also print the individual pages of the pdf to bring with you to your doctor’s appointments.
If you own a smart phone, you can choose to display medical information on your lock screen, so if you have an emergency, whoever responds to it will know what you have chosen to share about your medical condition. It is important to know that this information will be visible to anyone who picks up your phone, as it is visible without unlocking your device. Here are links to visit the support page for putting emergency information on your lock screen if you have an Apple product or if you have an Android device.
The internet can also be a helpful tool to manage your care as a young person. Today, more and more doctors and health insurance providers are integrating scheduling platforms, medical records, and easy communication with your doctors into one stop “hubs.” Check with your doctor’s office and your health insurance provider to see if they have online portals for managing your healthcare.
Talking to a doctor and being afraid to say the wrong thing is more common than you think. Start practicing now in your appointments with your pediatric doctor. If your doctor is directing their questions and conversation to your parents, don’t be afraid to speak up and ask them to talk to you instead. If your doctor uses terms that you are unfamiliar with, ask them to explain what they mean.
In this final phase of transition, it is time to use those skills and tools you are now equipped with to transition to a new adult provider. Here are a few things to think about.
Talk to your current doctor because they may be able to recommend an adult provider who they think would be best to continue your care. You can also reach out to other people for suggestions for a new doctor, like you parents, friends, or local support groups. Once you have a few doctor recommendations, it is important to call your insurance company and make sure those doctors are considered “in-network,” because if they are not in network, the appointments will likely cost you a lot more out of pocket.
You will then need to call the new doctor’s office and ask the receptionist if the doctor is accepting new patients and double-check that they accept your insurance. Then tell them you want to make an appointment.
It is important to find a doctor who is convenient to your house, and who makes you feel comfortable, and is easy to talk to. If you do not like your new doctor, you can always switch to someone else.
Starting at age 16, you have a legal right to talk to your doctor alone, if you choose. Also, when you turn 18, your parents no longer have legal control over your healthcare decisions. After age 18, it will be up to you to sign medical forms, call for refills, and pick up prescriptions.
There is a federal law called HIPAA, which stands for Health Insurance Portability and Accountability Act that helps protect your medical information. This law ensures you have rights over your own health information and limits what information can be shared by medical professionals without your explicit permission.
Before you turn 18, check what age your current insurance plan coverage will end and apply for adult health insurance. You can get health insurance through employee benefits (your parent’s coverage through their work, or your own coverage through your work), a campus health plan, a private plan, Medicaid, or Medicare.
Insurance benefits describe what type of insurance plan you have, and what will be paid for, or covered, by the insurance versus what you will be responsible to pay “out of your own pocket.” Your health insurance company will give you a “policy book” that will contain many FAQs. The most important things to find out are: if you need a referral from your doctor to see a new doctor or specialist, if the insurance company will pay for equipment to be fixed or replaced when necessary, if you need preauthorization for certain medications or hospitalizations, and the appeal process and how to use it if you think your services have been denied in error.
Keep track of all your insurance information where you can easily find it. When you call your insurance company with questions, it may be a confusing conversation. Insurance is very complex. The best thing to do is write down what they say and ask the rep to repeat it until you understand. It’s a good idea to keep track of all phone calls by writing down the date, who you talked to, and what was discussed. That way it will be easier to follow-up if there are problems.
Because healthcare can be very expensive, it definitely makes sense to try to pick doctors that are considered “in network.” A doctor is “in network” if they have a contract with your health insurance company to provide you care. The opposite of “in network” is “out of network.” You may still be able to see an “out of network” doctor, but you should call your insurance provider first to see what is covered and how much you would owe for that appointment.
Finally, always remember to carry a copy of your insurance card. You’ll need it every time you go to the doctor or pharmacy. And the phone number for the insurance company is on the back of the card so you can call them with any questions.
This version of our Transition with Ease series includes an introduction and all of the steps for healthcare transition — Explore, Equip, and Execute.
This series of videos helps to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems.
Got Transition™ aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals, youth, and families. This program features six steps for health care transition, referred to as the Six Core Elements of Health Care Transition™:
Got Transition also has a readiness assessment that can help you figure out how ready you are to transition to a new adult provider: https://www.gottransition.org/youthfamilies/HCTquiz.cfm