Adult transition starts at 12 years
Transition is the process of getting ready to leave your pediatric doctors and get your health care from doctors who are trained to care for adults. Transfer of care to an adult care provider occurs around 18-19 years. Please read the transition policy Adolescent Transition Policy (PDF)
Who should learn about transition to adult care:
- You are older or equal to 12 years old
- You have HbSS (homozygous sickle cell disease), HbSC (hemoglobin SC disease), HbS/Bothal (sickle beta zero thalassemia disease) or HbS/B+thal (sickle beta plus thalassemia or a severe hemoglobinopathy)
What happens when I turn 18-19 years of age:
- He/she will begin transferring to an adult doctor and to an adult medical care facility
- He/she has rights to consent and make his/her own medical decisions.
Questions for Parents Going Through Transition
Level 1: Ages 12-14
- When does my child need to learn about transitioning to adult care?
- What does my child need in order to prepare for transitioning?
- When should my child learn about privacy and consent regarding his/her healthcare needs and decisions?
Level II: Ages 15-17
- If my child needs help making healthcare decisions, who/where can I get this information?
- When should we begin verifying insurance coverage?
- At what age should we begin searching for an adult health care physician?
Level III: Ages 18-19
- Are there any healthcare concerns that may prevent my child from transitioning at age 19?
- When should we request a transfer/release of medical records?
- When should we review and discuss policies/procedures for scheduling and cancelling appointments with a new physician
- Will my child need proof of school/class enrollment to maintain eligibility status for transitioning?
What I need to know when I turn 19
You have successful become an adult in the healthcare setting in Alabama. After you turn 19, you are no longer a minor. You have the right and responsibility to make your own legal choices
What does this mean for you as a patient?
- After you turn 19, your doctor talks to you, not your parents, about your health.
- Your health information and medical records are private (or confidential) so please let the doctor know if you do not want your parents/guardian to learn about your private health issues.
- It is up to you to make decisions for your own health care. If you need help making decisions, talk to your family, your support team, and your doctor about who needs to be involved and what you need to do to make sure they can be a part of the conversations.
Things to know
- The confidentiality between you and your doctor is legally known as the Health Insurance Portability and Accessibility Act, or HIPAA.
- Ask for a copy of the hospital privacy statement.
Am I Ready for Transition to Adult Care?
Below are some questions that you should think about and discuss with your parents and sickle cell medical team. These questions have been developed specifically for patients with sickle cell disease. https://www.ncbi.nlm.nih.gov/pubmed/26226115
Health Care Knowledge
- I understand what behaviors can cause a pain episode
- I can answer my doctor’s questions during my clinic visits.
- I keep track of my own medical appointments
- I know how to take my medicines (time, dose, how often) without help
- I am aware of what hydroxyurea is and how it affects sickle cell disease
- I understand how drugs, alcohol, and tobacco usage affect sickle cell disease
Independent Living Skills
- I know how to manage money and pay a bill
- I know how to write a check
- I know how to use an ATM card
- I have held a full or part time job
- I know how to get my prescriptions filled
- I know how to make my own medical appointments
- I go to my medical appointments on my own
- I can arrange transportation to my medical appointments
Education and Vocational Planning
- I have a vision for my future
- I plan to attain education (college or job training) after high school
- I know the types of work situations that could cause problems related to sickle cell disease
- I have talked to my parents or family about my hopes for the future
Social Support Skills
- I participate in activities at school and/or outside the home
- I have friends that I can talk to about sickle cell disease
- I have a good social support system
- I understand what healthy relationships are
Look for ways to get involved in activities and support groups from the Sickle Cell Foundation and Children’s of Alabama.
- You and your family are not alone.
Being a part of your sickle cell community is a vital part of transitioning to adulthood. Here are some informational links to find a Sickle Cell Foundation near you:
Brimingham Sickle Cell Foundation
North Alabama Sickle Cell Foundation, INC
Southeast Alabama Sickle Cell Association
Sickle Cell Foundation of Mobile
Sickle Cell Foundation of the River Region
- A Transition Program designed with specific classes to help you and your child take charge of your life after pediatrics is available at Children’s Harbor Family Center (located at Children’s of Alabama.)
- You are encouraged to attend and complete the free transition classes by the time you are 18.
Learn about the medical coverage rules:
- The rules of medical care coverage for all third party payors (including Medicaid) change by the time a child becomes a young adult.
- We will try to help you find an adult doctor, in order to prevent a lapse in medical coverage and care.
- Beginning now, start thinking about where your child may go for adult care and who might be his/her primary doctor and/or hematologists.