Helping Teens with Epilepsy Transition to Adult Care
When a teen with epilepsy becomes an adult, it is important to think about moving care out of the pediatric setting to an adult doctor. The thought of getting care outside of Children's Hospital of Philadelphia can be scary, since this is where you and your family feel that people know you and your medical history the best.
We understand these feelings. Our goal with the information below is to help you get ready for this transition and prepare your parents, as well.
What is a healthcare transition and when does it occur?
The healthcare transition is the process of getting you ready to manage your own healthcare and switch from pediatric doctors to adult providers.
How long can I stay at CHOP?
- At age 14, your provider may start talking about transition
- At age 18, you are an adult. You can still get care at CHOP but your team will also start talking about transferring care
- Between ages 18 to 22, care should be transferred to adult providers
When you turn 18, you take control of:
- Medical decision making. You consent to your care (but you can always ask for help to make decisions).
- Sharing medical information. You determine who has access to your medical information.
- Advanced directives. This document has information about your preferences for care in the event that you become too sick to make your own decisions.
- Power of attorney (PoA). This is the authority to act for another person in specific matters.
You can do this!
Because of your epilepsy, you will have an additional layer of responsibility as an adult. Know that you can do this. The first step to a successful healthcare transition is for you to begin to own your healthcare. Here’s how:
- Be the primary communicator during your visits, without your parents.
- Keep a folder with your medical information and papers or know the username and passwords of your health portal login.
- Learn how to schedule appointments, fill prescriptions, etc.
- Learn to advocate for yourself.
- Keep your health information up to date. Most smartphones let you set up a Medical ID without a password by using a QR code. List your diagnosis and medications, and update your “in case of emergency” (ICE) info and contact in your phone to someone who is reliably involved in your life.
- Know your insurance card. If you can, create a virtual wallet on your phone or take a photo of your insurance card and keep it on your phone for easy reference.
Making the move
At least six months before your transfer to adult care a member of your CHOP care team will be designated to help coordinate the transition and provide support. This team member will collaborate with you to discuss what type of adult practice is most appropriate for your care and develop a care plan detailing your care needs and who will support them after your transition to adult services.
When you are ready, your designated coordinator will work with you to shift your follow-up care to adult-focused care providers.
Things to remember when scheduling your first adult visit:
- Have your insurance information available.
- Call to schedule an appointment. Here's what to say: “Hi! My name is __________. I am an epilepsy patient at Children’s Hospital of Philadelphia. My neurologist, _________________ at CHOP gave me this number to call and make an appointment with an adult epilepsy specialist."
- Ask how to send your medical records.
- Write down the date, time and location of your appointment.
Other steps on your path to independence
We can provide tools to help you learn about important topics like what colleges and employers can do to help those with chronic illness. We’re here to help you along your path to independence.
- Plan for secondary education (college)
- It is up to you to disclose your needs to your school, usually through the disability services office.
- Unlike in primary education, your 504 or individual education program (IEP) doesn’t automatically carry over to college.
- Familiarize yourself with your rights when it comes to your education once you finish high school. For example, use of memory aids or extra time to complete exams.
- Plan for work
- It is up to you whether to tell your employer about your health status.
- Talk to the supervisor of human resources (HR) at your job if you need changes or accommodations to help you do your job safely and successfully.
- You cannot be denied employment or fired because you have epilepsy.
- Learn how and when to disclose your medical needs
- About epilepsy in the workplace