Transition
Stages
Preparing for successful transition from pediatric to adult care
Brainy Ridge motto
Have Fun. Be Wise. Live Well.
About Camp Brainy Ridge
Camp Brainy Ridge is a set of residential camps for 7–17-year-olds with chronic medical conditions. The camps include Neurofibromatosis, Epilepsy, High Functioning Autism, Heart, and Type 1 Diabetes. There are also camps for Leadership, Type 1 Diabetes Family, and Transitional Youth age 18–26.
The camps provide the opportunity to meet others living with the same condition and learn from experts while under full-time medical supervision. Support groups address issues specific to children and adolescents with their condition. The camp fosters a network of peer support and helps reduce the social stigma and isolation often associated with chronic medical conditions.
Mission
Brainy Ridge Inc. is a non-profit dedicated to empowering children living with various chronic health conditions by fostering an inclusive and supportive environment. We aim to promote independence, self-management, and leadership skills, while cultivating lasting friendships. Our mission is to provide a safe, positive, and cohesive community that instills hope, a sense of belonging, and the tools necessary for these children to thrive.
Brainy Ridge motto
Have Fun. Be Wise. Live Well.
Introduction
The successful transition from pediatric to adult care is a gradual process that can look different for each person. The goal is to build the skills and knowledge needed to maximize each person's potential for autonomous function as an adult. It is a process that occurs over time — not something that just happens on the 18th birthday, though legally things change on that date.
The process starts in early childhood, much like learning to read. We do not hand an 18-year-old a college textbook and expect them to be able to read it. The first step is learning the alphabet, starting in kindergarten or before. Planning for transition is much the same — it begins with a sound foundation: developing communication skills, building resilience, promoting wellness, understanding conditions, and teaching self-advocacy and leadership.
Research shows that health outcomes are better for young adults who are prepared for the transition and supported at the level they need. Young adults experience reduced medical complications, enhanced adherence, greater satisfaction, and improved self-esteem when a successful transition is achieved.
We hope that this information will help youth, parents, and providers work together to prepare for a successful transition with confidence in this critical process.
Transition Stages
First Stage — Any age
Building the foundation from early childhood
Shifting responsibility over time
Youth
- Understand that as you get older, you will be more responsible for your own medical care.
Parents
- Embrace a mentality to gradually shift responsibility for medical care to your child as he/she approaches adolescence/adulthood.
Providers
- Support a mentality to gradually shift responsibility for the child's medical care as he/she approaches adolescence/adulthood.
- Inform parents/caregivers at what age your clinic no longer cares for young adults.
Knowing the condition
Youth
- Know the name of your condition.
- Talk to the people who care about you about how you will explain your condition(s). What will be the story you want to tell?
Parents
- Ensure your child knows the name(s) of his/her condition(s).
- Help your child develop healthy "scripts" for talking with others about his/her condition(s).
Providers
- Ensure the child knows the name(s) of his/her condition(s).
- Hear the child tell the story of their condition.
Communication about how you feel
Youth
- Talk to the people who care for you about how your body feels and what is important to you to be happy.
- Tell the people who care about you how you feel about the testing you need to do (e.g., MRIs).
Parents
- Ask your child how their body feels. Encourage them to share how they feel with providers.
- Prepare yourself for how you'll walk them through the sometimes awkward parts of adolescence.
Providers
- Ask the child how their body feels. Encourage them to speak for themselves as they are able.
- Discuss with the parent/caregiver the child's ability to tolerate testing and how it will change with developmental progress.
Building resilience and setting treatment goals
Youth
- Help set your own treatment goals by sharing what is important to you to feel happy.
Parents
- Help your child build resilience through open communication and allow them to help guide their own treatment.
- Encourage your child to help set their treatment goals by sharing what is important for them to feel happy.
Providers
- Help the child build resilience through open communications and allow them to help guide their own treatment.
- Encourage the child to help set their treatment goals by sharing what is important for them to feel happy.
Transition Stages
Second Stage — Ages 11–13
Starting to plan, building self-advocacy
Begin transition planning by age 12
Youth
- Transition planning starts by age 12. Start planning for when you turn 18.
- Know where your medical records are kept and what is in them. Be active in your own planning, including IEP meetings.
Parents
- Transition planning starts by age 12.
- Ask your child's providers if and at what age they no longer provide pediatric care.
- Maintain a thorough medical record of your child's medical and family history.
Providers
- Transition planning starts by age 12.
- Remind the family at what age the practice no longer provides pediatric care.
Readiness assessment (TRAQ)
Youth
- Assess your readiness to transition to adult care. Access and fill out the TRAQ – Youth. Review with parents/provider(s).
Parents
- Assess your child's readiness. Complete TRAQ – Parents/Caregivers. Review with child/provider(s).
- Develop a partnership with your child regarding their healthcare. Begin conversations about financial responsibility and safety.
Providers
- Assess the child's readiness to transition to adult care. Review TRAQ-Youth and TRAQ-Parents/Caregivers with child and parents/caregivers.
Self-advocacy and speaking up
Youth
- Start learning how to advocate for yourself.
- Ask your providers questions about your health. Practice speaking for yourself and be actively involved in your health care.
Parents
- Teach your child how to advocate for himself/herself. Encourage your child to ask providers questions and speak for himself/herself.
- Access resources on how to advocate for your child, such as during your child's IEP meeting. Ensure the implementation of necessary accommodations.
Providers
- Encourage the child to advocate for himself/herself. Ask the child questions directly. Encourage the child to ask questions and speak for himself/herself.
Knowing your condition, medications, and insurance
Youth
- Learn about your condition(s), medications, and any allergies you may have.
- Plan for how you will answer questions about your condition to advocate for yourself.
- Keep a copy of your own insurance card and emergency contact information.
- Learn how to contact your insurance company and access emergency care.
Parents
- Teach your child about his/her condition(s), medications, and any allergies he/she may have.
- Help your child plan how to answer questions about his/her condition(s) to advocate for himself/herself.
- Provide your child with their own copy of their insurance card and emergency information.
- Teach your child how to contact the insurance company and access emergency care.
Providers
- Teach the child about his/her condition(s), medications, and any allergies he/she may have.
Meeting with provider alone
Youth
- Start meeting alone with your provider for at least part of the session when you are ready, usually starting around age 12.
Parents
- Encourage your child to begin meeting with their provider alone for at least part of the appointment starting around age 12.
Providers
- Encourage meeting with the youth alone for at least part of the session when they are developmentally ready, usually around age 12. (Reference American Academy of Pediatrics)
Third Stage — Ages 13–16
Formal planning, growing independence
Initiate formal transition planning
Youth
- Initiate formal transition planning process.
- Know when you will need to move to an adult provider.
- Actively participate in your IEP process, including the areas that address transition.
Parents
- Initiate formal transition planning process. Maintain documentation.
- Know when your adolescent will need to move to an adult provider.
- Initiate transition planning in your adolescent's IEP.
Providers
- Initiate formal transition planning process. Document in EMR including readiness, youth's goals, and prioritized actions. (Reimbursable activity)
Adolescent development — peer groups, relationships, boundaries
Youth
- Develop a healthy peer group. Explore meeting others your age through camps, networks, symposiums, etc.
- Identify the adults you can trust to help guide you through your health care journey.
Parents
- Discuss peer pressure with your adolescent, particularly regarding alcohol, tobacco, and drugs.
- Have an open dialogue about sexuality and relationships, encouraging him or her to ask questions.
- Talk to your adolescent about setting clear personal boundaries and advocating for his or her own health and safety.
- This is also an ideal age to begin talking about your adolescent's plans for life, post-high school.
Providers
- Provide education to youth and parents about adolescent development, particularly as it applies to the condition.
Readiness assessment (TRAQ)
Youth
- Assess your readiness to transition to adult care. Access and fill out appropriate sections of TRAQ – Youth. Review with parents/provider(s).
Parents
- Assess your adolescent's readiness. Complete TRAQ – Parents/Caregivers. Review with adolescent/provider(s).
Providers
- Assess the adolescent's readiness to transition to adult care. Review TRAQ-Y and TRAQ-P/C with child and parents/caregivers.
Advocacy, health knowledge, and independence
Youth
- Continue learning how to advocate for yourself.
- Continue to develop knowledge of your condition(s), health, health care, and family medical history.
- Carry your own health insurance card and emergency information.
- Know what to do in case of a medical emergency.
Parents
- Continue teaching your adolescent how to advocate for himself/herself and developing knowledge of his/her condition(s), health, and family medical history.
- Have the adolescent carry his/her own health insurance card and emergency information.
- Ensure your adolescent knows what to do in case of a medical emergency.
Providers
- Continue teaching the adolescent how to advocate for himself/herself. Continue to develop knowledge of the adolescent's condition(s), health, and family medical history.
- Empower the adolescent to begin to manage his/her own healthcare.
Appointments, prescriptions, and provider visits alone
Youth
- Practice making a provider appointment. Learn how to fill a prescription.
- See the provider alone for part of the visit to help gain independence.
- Ask your provider about your care both with/without your parent/caregiver present.
Parents
- Have your adolescent practice making a provider appointment. Teach your adolescent how to fill a prescription.
- Empower your adolescent to begin to manage his/her own healthcare.
- Encourage your adolescent to see the provider alone for part of the visit.
Providers
- Encourage the adolescent to see the provider alone for part of the visit to help gain independence.
- Have the adolescent ask the provider about his/her care both with/without the parent/caregiver present.
Transition Stages
Fourth Stage — Ages 16–17
Preparing to turn 18
Update the transition plan
Youth
- Update the transition plan. Keep your own copy.
Parents
- Update the transition plan. Maintain written record for transition planning.
Providers
- Update transition plan in EMR as needed. (Reimbursable activity)
Determining level of support after age 18
Youth
- Before you turn 18, figure out what level of support for managing healthcare you will want or need. Have this conversation with your parents/caregivers and providers. Resources such as Family Voices can provide assistance.
Parents
- Before your child turns 18, figure out what level of support for managing healthcare your child wants or needs. Have this conversation with your child and providers. Resources such as Family Voices can provide assistance.
Providers
- Assist the youth and parents/caregivers in figuring out what level of support for managing healthcare the youth wants or needs.
Privacy rights at age 18
Youth
- Talk to your provider about your privacy rights when you turn 18.
Parents
- Talk to the provider about your child's privacy rights when he/she turns 18.
Providers
- Talk to the youth and parents/caregivers about privacy rights when he/she turns 18.
Medical summary
Youth
- Work with your provider to make a medical summary. Keep a copy for yourself. Provide others who will help with your healthcare with a copy.
Parents
- Assist your child in working with the provider to make a medical summary. Have your youth keep their own copy. Ensure the youth provides others who will help with the young adult's healthcare with a copy.
Providers
- Work with the youth and parents/caregivers to create/maintain a medical summary including conditions, allergies, surgeries, and medications. Provide the youth their own copy. (Reimbursable activity)
Insurance and medical supplies
Youth
- Learn how to check your benefits with the insurance company or to sign up for new insurance.
- Learn how to secure all medical supplies and routinely check to be sure you have an adequate quantity.
Parents
- Teach your adolescent how to check benefits with the insurance company or sign up for new insurance.
- Teach your adolescent how to secure all medical supplies and routinely check to be sure he/she has an adequate quantity.
Providers
- Assist the youth/family in identifying insurance resources and community support services.
Fifth Stage — Ages 18–21
Legal adulthood and transitioning care
Legal status at age 18
Youth
- 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 the provider's visit unless you consent or if your parent/caregiver retains guardianship after you turn 18.
- Decide how much support you want from your parents/caregivers and discuss with them.
Parents
- Your child is a legal adult at age 18 and is responsible for his/her own care. Parents/caregivers cannot access medical information or be in the provider's visit unless the young adult consents or if the parent/caregiver retains guardianship past the age of 18.
- Discuss with your young adult how much support he/she wants from parents/caregivers.
Providers
- Initiate adult care model if youth is to remain in pediatric care setting.
- Assess young adult's wishes/needs for continued support from parents/caregivers.
Finding and transferring to an adult provider
Youth
- Work with your current provider to find a new adult provider, if needed. Make sure the new provider accepts your health insurance.
- Call your new adult provider to schedule the first appointment. Make sure the new office has your medical information.
Parents
- Help your young adult work with the current provider to find a new adult provider, if needed. Ensure the new provider accepts his/her health insurance.
- Your young adult will call the new adult provider to schedule the first appointment. Provide support and assistance as needed.
Providers
- Transfer youth to adult care providers when indicated (per Transition Plan) when youth is stable and prepared.
- Communicate directly with selected adult clinician about pending transfer.
- Offer consultation/support and care for the patient until transfer is affected.
Living as an adult — organization, insurance, workplace
Youth
- Learn if there are additional changes at 18 that affect you (e.g., health insurance, Social Security Income).
- Make sure you have an organizational system (binder, folder, or electronic files) that includes important health documents, insurance information, prescriptions, appointment schedules and ongoing care.
- Know your rights and benefits (e.g., health insurance, sick leave) in the workplace.
- Understand your insurance coverage. Ensure there are no gaps in your medical coverage. Keep your coverage in place at all times.
- Secure all medical supplies and routinely check to be sure you have an adequate quantity.
- Whether you are living at home, at college, or independently elsewhere, ensure you have a local medical team that you trust and who has your entire medical history on file.
- Consider consulting with a genetic counselor when you begin family planning (for some conditions).
Parents
- Assist in learning if there are additional changes at 18 that affect your young adult (e.g., health insurance, Social Security Income).
- Assist your young adult in setting up an organizational system for important health documents, insurance information, prescriptions, appointment schedules and ongoing care.
- Ensure your young adult knows his/her rights and benefits (e.g., health insurance, sick leave) in the workplace.
- Assist in understanding insurance coverage. Help to ensure there are no gaps in medical coverage.
- Your young adult will be responsible to secure all medical supplies. Provide support and assistance as needed.
- If your young adult is living away from home, help identify and utilize support services offered through the post-secondary institution or local clinic.
- Support your young adult in considering consulting with a genetic counselor when he/she begins family planning (for some conditions).
Providers
- Provide educational materials to the young adult as needed.
- Update medical summary as needed. Ensure completion of transfer package. (Reimbursable activity)
Transition Stages
Sixth Stage — Age 22+
Full independence and ongoing management
Employment, career, and insurance
Youth
- As you consider employment and career options, evaluate all aspects of what each option would provide for you. Educate yourself about insurance and other benefits. Your parents/caregivers can be a valuable resource in evaluating your options.
- Be sure to stay insured. If you change your health insurance, make sure your provider takes your insurance, and learn if there are any charges at the visit.
- If you stay on your parent's/caregiver's insurance, plan to transition to your own insurance by age 26.
Parents
- Assist your young adult in evaluating employment and career options. Help to educate about insurance and other benefits.
- Help to ensure your young adult stays insured. If the health insurance changes, the young adult must make sure the provider(s) take the new insurance.
- If your young adult stays on your insurance, plan to transition to his/her own insurance by age 26.
Providers
- Assist the young adult in evaluating employment and career options. Help to educate about insurance and other benefits.
Ongoing health management
Youth
- Continue to get care from your adult provider, learn to manage your health and health care, and update your medical summary.
Parents
- Encourage your young adult to continue to get care from his/her adult provider, learn to manage health and health care, and keep the medical summary updated.
Providers
- Assist the young adult in learning to manage health and health care, and keep the medical summary updated.
References & Resources
General transition resources
Transitioning To Adult Care: A Guide for NF Patients and Caregivers – NF Collective
Healthcare Transition Timeline – Got Transition
A Family Toolkit: Pediatric to Adult Healthcare Transition
Six Core Elements – Transitioning Youth to an Adult Healthcare Clinician
Got Transitions
Youth & family resources
Healthy Adulting 101
Contact Us
Brainy Ridge, Inc.
Business Address
Brainy Ridge Inc.
PO BOX 34129
Bethesda, MD 20827
PO BOX 34129
Bethesda, MD 20827
Campsite Address
Blue Ridge School
St. George, VA 22935
St. George, VA 22935
Visit us online at www.brainyridge.com
With Gratitude
This resource was made possible with the generous support of
We would like to acknowledge and thank SpringWorks Therapeutics for their generous support of transition to adult care at Camp Brainy Ridge. Their commitment to improving the lives of people living with rare diseases extends beyond the clinic — into community, connection, and lifelong care.
Rare Disease Support
Transition to Adult Care
Community Partnership
Camp Brainy Ridge — Have Fun. Be Wise. Live Well.
www.brainyridge.com
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