Timeline for a Successful Transition to Adult Care

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    Mapping out a path to taking over your medical care once you are of legal age and/or ready to move away from home will help you have a successful transition into the adult medical world.

    Below are general steps you can take to build independence in relation to your medical care, particularly around your hydrocephalus. Don’t feel like you have to complete each task under each age grouping. Go at your own pace. This is a guide and one that is aspirational. Most people will need a little more time for some of the steps outlined below. When you turn 18, make sure you give permission to your parents or caregivers to continue to speak with your doctors and access your medical records, if you are comfortable giving that permission, so they can continue to help you until you’re 100% ready to take on everything by yourself.

    If you or your child has intellectual and/or developmental disabilities that make this timeline too difficult to adjust, we have listed resources below the timeline to help you.

    AGE 12-13

    • Learn about your hydrocephalus and any other medical conditions.
    • Learn about your medications and allergies.
    • Ask your doctor questions about your health.
    • Ask your doctor if and at what age they no longer care for young adults

    AGE 14-15

    Medical/Doctors

    • Know who is a part of your healthcare team. This includes your primary care doctor (pediatrician), your neurosurgeon, and any other specialists you see. (TIP: Add these doctors and nurses as contacts in your phone.)
    • Learn more about your hydrocephalus. Make sure you can answer these questions either from memory or with the help of an app like HydroAssist® or notes.
      • How is your hydrocephalus treated?
      • If you have a shunt, is it programmable or non-programmable?
      • Which company makes your shunt and what is the name of the model of your shunt?
      • If it is programmable, what is the current setting?
      • How does it feel when you go into shunt failure or you know things aren’t working well?
    • Check out this great tool you can fill out and then review with your parents and your doctor to see how ready you are to transition. Do this every year to check your progress! Got Transition Transition Readiness Assessment
    • Know what to do in case of a medical emergency.
    • Practice making a doctor’s appointment (either by phone, online, or through an app).
    • Check-in when you arrive for your appointment. Let the reception desk know your name, your appointment time, and the name of the provider you are seeing.
    • Fill out any medical forms with assistance from your parent(s). This is a great way to learn about your health and your hydrocephalus treatment history.
    • Carry your own health insurance card.
    • Begin to see your primary care doctor alone for part of your doctor’s visit to help gain independence in managing your health and health care.
    • Share asking questions with your parent during your appointments with your neurosurgeon, neurologist, and other specialists.
    • Work out a plan with your parents to let you ask questions first and then allow them to ask any questions they may have after you are done.

    Medications

    • Take your prescriptions at the right time.
    • Tell your parents when a medication is getting low.
    • Practice ordering prescription refills (either by phone, online, or through an app).

    Technology

    • Download useful apps for managing your care
      • HydroAssist® (free on Google Play and the Apple App Store)
      • Patient portals from doctors/hospitals (e.g. MyChart)
    • Set up the Medical ID feature on your smartphone. (Visit GotTransition for instructions.)
    • USE EMAIL and an online calendar system. (Remember, adults don’t communicate via social media messaging or text like you do. They use email! So don’t forget to check your email daily.)
    • If you find you have a hard time keeping track of things on your phone, consider a smartwatch that syncs with your phone. You can receive physical notifications through vibrations on your wrist, including calendar notifications, reminders, emails, and access navigation and health apps. Features such as fall detection and seizure monitoring also help manage additional medical conditions, if needed.

    AGE 16-17

    Medical/Doctors

    • Progress check! See how you’re progressing on your readiness to transition. Continue to fill this out each year and review it with your parents and your doctors. Got Transition Transition Readiness Assessment
    • Make your own doctor’s appointments and put them on your calendar.
    • Begin to see your neurologist and/or neurosurgeon alone for part of your doctor’s visit.
    • Prepare questions beforehand, take notes during your appointment, and take the lead in asking questions. Invite your parents to participate after you have asked everything that is on your mind.
    • Ask your doctor to direct the conversation and questions to you, not your parents, when they are in the room with you.
    • Ask your doctor to talk with you about your privacy rights when you turn 18. You should have this conversation with both your pediatrician and your neurosurgeon.
    • Work with all of your doctors to make a medical summary for you. Keep a copy for yourself. Here’s a great resource to use with your doctors to create your medical summary.

    Medications

    • Take your prescriptions at the right time and on your own without parent reminders.
    • Pick up your prescription from the pharmacist (with parent).
    • Call in prescription refills to the pharmacy when you realize medications are getting low.
    • Track when refills for your prescription will run out. Call your doctor with enough time to renew your prescription prior to running out of your medications. Remember that you might need to schedule an office visit before receiving a new prescription, particularly in the case of medications prescribed by a mental health professional.

    Parents

    • Find out about your family medical history from your parents.
    • Talk with your parent/caregiver about the age you want to transfer to a new doctor for adult care.
    • Before your 18th birthday, talk with your parents about what role you want them to play in helping you make medical and financial decisions and process medical and financial information once you turn 18. Many young people continue to involve their parents in these matters after age 18, while gradually assuming more and more responsibility for them.
      • Ability to access your medical records.
      • Ability to talk to doctors both with and without you.
      • Ability to make decisions for your care.
    • If you do not have one, get an identification card. (Driver’s license or State ID)
    • Understand and agree on how you will get to and from medical appointments. Try to navigate to a couple on your own!

    AGE 18-21

    Medical/Doctors

    You are a legal adult at age 18 and are legally responsible for your care. Parents/caregivers cannot access your medical information or be at your doctors’ appointments unless you give permission.

    Working with your current medical team while you identify new adult providers: 

    • Schedule doctor and imaging appointments with your health care providers, especially any appointments you need before you leave home for college or a job.
    • Fill out your medical history form unassisted. This includes answering questions like immunization dates, names, and doses of medications, date of your last menstrual cycle (if appropriate), etc.
      • Know the last 4 digits of your social security number.
      • Know who the policy holder is for your medical insurance as well as their date of birth.

    Finding new adult care providers:

    • Work with your neurosurgeon, neurologist, and any other specialists to find new adult doctors. Remember, if you have a team of doctors treating various medical conditions, you need to make sure that you identify new adult providers for each one – neuro-ophthalmology, neuropsychology, endocrinology, etc.
      • Make sure they are accepting new patients.
      • Make sure they are comfortable treating hydrocephalus.
      • Make sure they accept your health insurance.
    • Update your medical summary with your doctor. Have them send this to your new adult doctor. Keep a copy for yourself.
    • Call your new adult doctor to schedule the first appointment. Make sure the new office has your medical information, and learn if there are any charges at the first visit.
    • Complete the required forms for the adult provider(s) and your new treating hospital.
      • If you want your parents to have access to your medical records and doctors, you need to give them permission. There may be a separate HIPPA Authorization form from your doctor and/or the hospital that you need to sign.
      • If you want your parents to be able to see your information on a patient portal app, you need to ask for instructions on how to authorize them.

    Medications

    • Call or meet with your prescribing doctor for a new prescription when prescriptions are getting low.
    • Pick up prescriptions from the pharmacy or set up mail order.

    Parents

    • Create your necessary legal documents. These documents should include a durable property power of attorney for financial decisions and, for medical decisions, a health care power of attorney, designation of health care surrogate, or other advance health care directive (different states use different names for these documents).
    • Work with your parents to share important medical history and legal documents. They can be stored in a binder and/or scanned and stored on a cloud sharing service, like Google Drive, or on your computer.
    • Talk to your parents about when and how you want your hydrocephalus and other medical conditions shared with others. They can help you make decisions about who and when to share information, especially with professors, employers, etc. At the same time, it is also important that parents have your consent to share information about you and that they respect your privacy.
    • Learn if there are additional changes at 18 that affect you (e.g., military/selective service registration, health insurance, Social Security Income).

    AGE 22-25

    Medical/Doctors

    • Continue to get care from your adult doctor, learn to manage your health and health care, and update your medical summary.
    • Be sure to stay insured. If you change your health insurance, make sure your doctor takes your insurance, and learn if there are any charges at the visit.

    Much of this timeline was adapted from Got Transition’s Health Care Transition Timeline (GotTransition.org), with additions from medical professionals and parents caring for youth and young adults living with hydrocephalus.

    Additional Resources

    Child Neurology Foundation (CNF) Transition of Care Program provides a number of helpful resources, including a video series. Click here to visit their website.

    The American College of Physicians provides a list of parents and providers can use with families of teens with intellectual disabilities (ID) and/or developmental disabilities (DD). Click here to access the information.