Caring for your health

Knowing about your health condition and medications is the first step in taking charge of your health care. Below are important skills and tips to help you start.

• Learn about any health conditions (diagnoses) you have.

  • Talk to your health care team, parents, or caregivers about your condition.

  • Learn the name of your condition.

  • Learn what it means to have this health condition.

• Learn about your health history.

  • Talk to your health care team, parents, or caregivers about your health history.

  • Learn about any surgeries or procedures you have had.

  • Write down your history or put it in your smart device. Check your MyChart (patient portal) information.

  • Practice giving your health history to your health care team at your next visit.

• Learn the signs and symptoms of your health condition.

  • Ask your health care team about what signs and symptoms to look for if your condition gets worse.

  • Know what to do when you notice those signs and symptoms.

  • Use a notebook or smart device to keep track of any changes in your health.

  • Share any changes with your health care team.

• Learn about your medications.

  • Know your medicine names, how much you take, how often you take them and the reason for taking them.

  • Ask your health care team, parents, or caregivers to help teach you about your medicines.

  • Learn about side effects of your medicines you take.

• Learn about any special medical equipment you use.

  • Learn what type of medical equipment you are using and how to use it.

As you get closer to becoming a young adult, you will begin to be more involved managing your health and making medical decisions. Below are tips to help you start managing your health.

• Talk to your health care team.

  • At your visits, begin to answer questions from your health care team about your health, medical history, and medicines.

  • Also ask your health care team any questions you have about your health.

  • Practice checking into your next visits on your own.

• Understand your health care rights.

  • When you turn 18 years old, you will be an adult and will be responsible making medical decisions about your own health.

  • You will be required to sign consents for treatment and decide who you want to share your medical information with and how it can be shared.

  • Talk with your health care team, parents or caregivers about your health care rights and making medical decision in the future.

• Learn the differences between pediatric and adult care.

  • Talk with your health care team, parents or caregivers about what to expect when you move from your pediatric doctor to an adult doctor.

• Learn how to refill your medications.

  • Watch and listen as your parents and caregivers refill your medicines.

  • Practice calling the pharmacy with your parents and caregivers the next time you need a refill.

• Know your health care team and their role in caring for your health condition.

  • Learn the names of your health care team and how they help you.

  • Your health care team could include your primary care doctor, specialists, nurses, social workers, child life specialists, psychologists, or dieticians.

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• Learn when and how to contact your health care team.

  • Talk to your health care team about when you should contact them.

  • Ask for their contact information so that you can reach out to them if you need their help managing your health.

  • Have your health care team phone number in your wallet or on your phone.

• Learn how to make a visit.

  • Watch and listen as your parents and caregivers make a visit with your doctor.

  • Practice calling the clinic or logging on to patient portal with your parents and caregivers the next time you are needing a visit.

  • Next time try making your visit with the support of your parents and caregivers.

• Know when you need to go to emergency room.

  • Talk with your health care team, parents, or caregivers about what to do if you need emergency care.

  • Learn where the nearest emergency room is located.

  • Identify someone to call and inform of your emergency.

• Start planning on how to get to and from your doctor’s visit.

  • Talk with your health care team, parents, or caregivers about your transportation options for visits.

  • Practice setting up transportation with your parents and caregivers the next time you are needing to get to a visit.

Begin talking to your health care team and parents/caregivers about how to practice wellness behaviors daily. Below are tips to help you practice wellness behaviors.

• Learn the reasons for following your recommended medical plan, including taking medicines as prescribed.

  • Talk to your health care team, parents, or caregivers about the importance of following your medical plan.

  • Learn why your medicines must be taken and the importance of taking them.

• Know your medication adherence plan and how you remember to take medicines.

  • Learn about your medial plan and why it’s important to take your medicines.

  • Talk with your health care team, parents or caregivers about tips and strategies for staying adherent.

  • Try using your smart device to remember to take your medicine on time and avoid missing a dose.

• Learn about factors or situations that may prevent you from adhering to your medial plan.

  • Ask your health care team for help spot these factors and situations.

  • Talk with them about ways and tips to stick to the medical plan and recommendations.

• Learn about the benefits of a healthy eating, physical activity, and sleep.

  • Ask your health care team about eating healthy, what type of physical activity you can do, and how much sleep you should be getting.

  • Try to add these to your daily routines.

• Learn about the risks of alcohol, drugs, and tobacco.

  • Ask your health care team about how alcohol, drugs, and tobacco affect your health condition.

• Learn when mental health care support is needed and how to access services.

  • Talk with your health care team about your mental health needs and how to access mental health care.

  • This could include learning how to manage stress, anxiety, and when to ask for help.

• Learn other disease specific wellness behaviors.

  • Ask your health care team about other wellness behaviors that could help you stay healthy.

Begin thinking about your future for health insurance, school, work and living situations. Below are tips to help you start planning.

• Understand types of health insurance.

  • Ask your health care team, and parents, or caregivers about the different types of health insurance.

  • Learn about your current health insurance and how it works.

  • Carry your insurance card with you.

• Apply or re-apply for Supplemental Security Income (SSI), if needed.

  • Learn about SSI benefits and if you qualify for them.

  • Around the age of 18, you need to re-apply for SSI as an adult. Information about re-applying should be received by mail from Social Security Administration.

  • Work with your health care team, parents, or caregivers to complete this application, if needed.

• Plan for health insurance coverage for the upcoming year.

  • Know when your current health insurance will end.

  • Research options for health insurance in the future.

  • Identify next steps needed to have health insurance as your current health insurance ends.

  • Talk with your health care team, parents, or caregivers to learn about options for health insurance.

• Plan for the future.

  • Talk to your health care team, parents, or caregivers about your plans for the future.

  • Decide if you will continue school at college or go to work. Identify the next steps needed.

  • Learn how your health may affect your school or work.

• Identify accommodation needs for school or work.

  • Know what help you may need at school or work.

  • Talk to your health care team, parents, or caregivers about how to get the help you need.

• Identify at least two people to ask for help when needed.

  • Think about two people that can help you become more independent as you move into adulthood.

  • Ask them for their support.