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When your child is young, as a parent and a caregiver you’re at the center of their care. You answer the questions, make the decisions, and sign the documents. Providers look to you for updates. You are the one who knows everything about your child.
But as children grow into young adults, the focus shifts. Providers begin asking your grown child directly: “How do you feel? Did you sleep well? Do you have pain?” The goal becomes autonomy and helping the young person manage their own health and advocate for themselves.
The transition from pediatric to adult healthcare is a significant change. It’s exciting but also stressful for families, and without preparation, gaps in care can happen. This guide explains what to expect, when to start, and how to support your child as he or she grows to become an adult.
In 2003, Blessing Udo, PhD, RN, became a mother to twin girls. One of them was medically fragile. Her journey through months in the NICU (Neonatal Intensive Care Unit), multiple hospital stays, and the emotional toll of caring for a fragile child led her to create a pediatric home care agency built on compassion and quality. Now, she brings her experience and insight to help other families navigate the road ahead.
This article is based on a recent webinar, part of the BDI Empowers series, led by Dr. Udo.
Why Transitions Are Challenging
The hardest part is often the gaps in care. For example, in Georgia, children in the GAP (Georgia Pediatric Program) age out at 21. At that point, families often face sudden changes in insurance coverage, access to occupational, physical, or speech therapies, primary care, and specialty providers. If planning hasn’t started by age 18, the young adult may temporarily lose access to essential appointments, medications, or therapies.
Other challenges include emotional stress for both parent and child, uncertainty about insurance and benefits, and adjusting to a new care style. Children sense when parents are stressed. When appointments are missed or therapies stop, they notice, and it can affect their well-being.
When to Start Preparing
According to the American Academy of Pediatrics, planning should begin at ages 12 to 14. It may seem early, but these years are an ideal time to introduce skills that build independence. “I’ll never forget when my daughter, about 12 years old, was asked by her pediatrician what she liked to do in her free time. Her answer? “I like to count my money.” She even pulled out her piggy bank! It wasn’t the answer I expected, but it was a reminder that she was finding her own voice,” Dr. Udo remembers.
A Timeline for Transition
Every child develops differently, but here’s a general guide for what to focus on at different ages.
Ages 12–14: Early Preparation
At that age, it is time to begin teaching them about their diagnosis and medications and start practicing answering provider questions directly. Always carry a copy of their insurance card. It is also essential to learn how to explain symptoms in simple terms, e.g., “I can’t breathe well because I have asthma”.
Ages 15–17: Practicing Independence
In this stage, your growing child needs to know the names and purposes of the medications they take. He or she must speak first during appointments and even practice scheduling or confirming appointments. They must be confident enough to begin calling the doctor’s office with supervision. Teach them to ask questions like: “Is this my medicine? Is it time for my appointment?”
Ages 18–21: Transition in Full Swing
By that time, you must have transferred to adult providers. Be prepared for insurance and waiver changes. For example, GAP may end, and other programs like COMP (Comprehensive Waiver) or ICWP (Individualized Community Waiver Program) may begin. At this stage, parents should step back, even though it’s hard, and allow the young adult to speak for themselves.
Ages 22–26: Building Full Autonomy
Many young adults should be managing their own care by now, with support as needed. Some may attend appointments with caregivers instead of parents. They need to learn to carry their own insurance card, handle medical paperwork, and continue to practice self-advocacy and problem-solving skills.
Key Skills to Teach Your Child
To ensure a smooth transition for your child and yourself, there are some key skills to teach them to help you along the way.
Medication Management
Ensure they know the names, colors, and purposes of medications. Keeping a medication log at home is also a vital strategy. Your child must be able to recognize their medicine and reject the one that is not a part of their treatment plan. They must also understand when medicines are changed or stopped.
Communication Skills
Helping your child develop communication skills is a crucial part of the process. At home, practice answering common provider questions. Encourage speaking first at appointments. Respect their privacy and let them meet with the provider alone when appropriate.
Problem-Solving
Model how to handle issues like pharmacy mix-ups, late appointments, or denied refills. Teach them flexibility and resilience. Show them how to deal with challenging situations.
Self-Advocacy
Encourage your child to express preferences. They need to be able to select their provider, not only rely on your opinion. Reinforce often that their voice matters.
Supporting Families During Transition
The transition from a pediatric to adult childcare is a long process that can often be stressful not only for the individual but also for you as a parent and a caregiver. Respect your role. You will always know your child best. Transitioning doesn’t replace your importance; it simply adds new skills for your child.
Building a strong care team is another key element in the process. Make sure you include a trusted team that may include a primary care provider, specialists, therapists, home care, school, and community resources. Not all providers have experience working with young adults with special needs, which is why it is essential to ask direct questions before making a commitment.
It is also vital to stay proactive with insurance, because coverage changes at 18 and then at 26. Learn about Medicaid, SSI/SSDI, waivers, and employer insurance options. If you need help with this, Bobby Dodd Institute has experts to guide you through the process. You can schedule a 15-minute free consultation to review your specific situation.
Consider guardianship and legal issues. For children who cannot make decisions independently, alternatives like supported decision-making may help strike a balance between independence and protection. Consult a lawyer or social worker early.
Collaborate with schools and community programs. Schools can support social skills, life skills, and integration into peer groups. Check community organizations. They offer checklists, peer connections, and counseling resources to help you during this period of transition.
Medical Records and Care Continuity
Proper organization is key to staying ahead of any changes and dealing with unexpected situations. Make sure you keep a comprehensive medical summary that includes:
- Diagnoses and medical history
- Medications and allergies
- Hospitalizations and surgeries
- Provider list and contact information
- Insurance information
Share this information with new providers to ensure smooth continuity of care.
Common Parent Challenges
As a parent and a caregiver, it is not always easy to accept the fact that the person in front of you is not the small child you remember. You now have a young adult who is capable of managing his or her care independently.
One of the things you may find difficult is letting go. The urge to answer for your child is strong but stepping back builds independence.
Navigating insurance can also be a huge challenge. It is important to be proactive, not reactive. “And I can’t stress this enough: Start paperwork early,” says Dr. Udo.
Being a parent and a caregiver can be stressful, especially in times of transition like this one. Consider counseling and peer support to help you ensure your well-being and a smoother process.
Things to Remember: A Checklist
- Start early. Begin planning by ages 12–14.
- Expect change. Insurance, providers, and responsibilities will shift at 18, 21, and 26.
- Prevent gaps. Communication and planning help avoid care interruptions.
- Encourage independence. Build skills gradually. This includes medication management, self-advocacy, and problem-solving.
- Advocate always. No one knows your child better than you.
Transitioning from pediatric to adult healthcare is a complex yet achievable process with proper preparation and support. As a parent or caregiver, your role evolves from being the one who speaks for your child to being the one who empowers them to speak for themselves. There’s not a universal list to help you in times of transition. But by simply following the advice given in this article, you ensure that you have the basics covered. And if you need personalized care and support, KindTouch Healthcare services can help.
