Managing your own health care allows you to become more independent, go away to school, get a job, travel, and much more. But transitioning to adult health care providers, preparing for appointments, and making health care decisions is often daunting.
This section of Take Charge of Your Health care covers:
Transitioning to Adult Health Care
Making Your Own Health Care Choices
Transitioning to Adult Health Care
Most of your health care providers may have specialized only in pediatric medicine. Pediatric medicine is the health care of infants, children, and adolescents. Now that you are getting older, it may be time for you to switch to health care providers who specialize in adult medicine. People usually make this switch sometime between the ages of 16 and 25 years old.
Moving to an adult provider can be challenging. You most likely have known your team of health care providers since you were young and have developed strong relationships with them over the years. You may wonder, do I have to change health care providers? Why do I have to leave? As a teenager or young adult, your body is growing and changing. Adult health care providers are trained to address issues specific to adults.
If you go to a Hemophilia Treatment Center (HTC), moving to adult health care will involve changing to an HTC team who sees adult patients. It will also include seeing a primary care provider, who is the adult medicine version of a pediatrician. An adult primary care provider can answer questions and address general health care issues.
As you navigate your health care more on your own, you will also have to learn more about your health insurance, start carrying your insurance card with you, and wear your medical ID jewelry so you are prepared even in case of emergency.
If you want more information about insurances, please go to Insurance Basics.
If you want more information about what to do in emergency situations, please go to Emergency Preparedness.
Patient Rights
Moving into adulthood means many new responsibilities for you. As an adult you will gain full patient rights relating to your health care. Some of these rights are guaranteed by federal law, such as the right to get a copy of your medical records. Many states have additional laws protecting patients, as do many health care facilities. Many health care facilities and hospitals have patient advocates who can help explain these rights to you.
As an adult seeking health care, it’s important for you to know your rights because you will be making many health care decisions on your own. Confidentiality laws protect your personal and health information. Your parents or caregivers will not have access to this information without your written permission.
Here are some additional resources:
Health care Government website: https://www.healthcare.gov/health-care-law-protections/
Patient Rights website: https://mypatientrights.org/navigating-your-insurance/
Making Your Own Health Care Choices
As you take charge of your health, the decisions your parents and caregivers made for you are now decisions you will make for yourself. Some of these decisions include:
- The location where you receive care
- The health care providers and specialists you choose
- Where you will get your medications and supplies
- Your treatment preferences
- Designating emergency contacts
Here is some further information: Turning 18
Even as you start to make your own decisions you can still talk to your support network if you have questions or need to discuss decisions. Your Hemophilia Treatment Center (HTC) or local bleeding disorders organization can also help. For example, if you haven’t been self-infusing, your HTC team can help you decide if this is a good option. They will train you to identify bleeding episodes quickly and show you what to do if a bleed starts. Understanding how to treat bleeds is critically important, especially if you’re planning on moving far from your current home.
If you want more information about your role in treatment, treatment options and basics of managing your treatment, please go to the Treatment section.