Transitioning from Pediatric to Adult Care

Considerations for Young Adolescents, Young Adults, and Their Caregivers

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If you’re 18 or over in the United States, you are considered a legal adult. Being a legal adult limits your parents’ or guardians’ access to your medical information.

Young adults can begin to take ownership of their own care by following some practical steps:

Educate yourself about your specific condition
Become an active participant in your medical appointments
Choose a healthcare team that is right for you
Maintain your health records
Become familiar with your insurance coverage
Make a list of your medications and practice a consistent medicine routine
Make an emergency contact list
Make a list of questions you’d like to cover during an appointment (see the Self-Advocacy in Clinic section for ideas)
Involve loved ones and a support network

Even as a young adult, you may find it beneficial to keep your parent and/or guardian informed about/involved in eosinophilic disease care for a period of time. Keep an open line of communication about what your preferences are for sharing medical information.

When appropriate, families may consider taking some steps to ensure that sharing medical information remains possible after a child turns 18. Here are some formal options to be familiar with as a family:

➤ HIPAA Authorization Form and FERPA Waiver

A HIPAA Release and FERPA Waiver is a legal document that authorizes the release of protected health information under the Health Insurance Portability and Accountability Act (HIPAA) and educational records under the Family Educational Rights and Privacy Act (FERPA). HIPAA protects the privacy and security of individuals’ medical records and other health information, while FERPA protects the privacy of students’ educational records. By signing a HIPAA Release and FERPA Waiver, you grant permission for healthcare providers and educational institutions to disclose your medical and educational information to specified individuals, such as parents, or organizations.

➤ Durable Power of Attorney for Healthcare

(or Health Power of Attorney):

This legal document designates someone, often a parent/guardian, as a healthcare proxy or medical power of attorney. This person has the authority to make medical decisions if the young adult is not able to do so due to incapacity. The person appointed as your healthcare agent, typically a trusted family member or friend, is authorized to make medical decisions according to your wishes, as outlined in the document or as they believe you would have wanted. This includes decisions regarding medical treatment, surgery, end-of-life care, and other healthcare-related matters. It’s important to discuss your healthcare preferences with your chosen healthcare proxy and ensure they understand your wishes before appointing them in a Health Power of Attorney document.

➤ Electronic Health Record (EHR) Access

Providers may have their own forms and rules about accessing a medical record. Check with your providers to understand their policies and forms necessary to grant a parent or guardian access to electronic medical records.

➤ Finance Power of Attorney

A Finance Power of Attorney is a legal document that grants someone the authority to manage your financial affairs and make financial decisions on your behalf. This appointed person can handle a wide range of financial matters, such as paying bills and filing taxes.

In the U.S., privacy laws for people aged 12 and older are mainly covered by HIPAA (Health Insurance Portability and Accountability Act) and state laws. HIPAA sets rules to safeguard medical records and personal health information. People aged 12 and up usually have the right to see their own medical records. Parents or legal guardians can also access minors’ records, including those aged 12 and older, unless state laws say otherwise.

States may have additional rules about accessing medical records for people aged 12 and older, with some states allowing minors to consent to medical treatments without parental involvement. While HIPAA generally grants access to medical records for those aged 12 and older, healthcare providers may have their own rules to protect sensitive information. They may consider factors like a minor’s understanding of their records and the effects of giving access.

Transitioning from pediatric care to adult care is an important time in your eosinophilic disease care. Preferences about whether to involve parents/guardians, and for how long, are unique for each patient. Planning ahead for this phase of your eosinophil-associated disease care and keeping an open line of communication between you and your family is an important practice as you take greater responsibility in coordinating and managing your healthcare.

Additional Resources:

Tips for Transitioning From Pediatric to Adult Care | APFED Eos Support Webinar Series

See Related Pages

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