As a parent you can coach your child towards acquiring self management and self advocacy skills. But if your child is unable to or needs extensive assistance and support, then you may need to be their Spokesperson. While the degree of help each child needs may vary (depending on their skill level), the goal is to ensure that your child is included in all decisions.
Your child should be the central and the most important member of the health transition team, which means he/she should be able to participate to the fullest extent possible. Your child might need support and assistance to be able to actively participate. To further explore the skills your child might need to become a self advocate and to be able to self manage their health, consider filling out the Parent/Caregiver Health Transition Worksheet and the Youth Milestones Worksheet.
They are instrumental in moving your child from pediatric providers to adult health providers. Some of the things your child’s current pediatrician or PCP should do include:
– Provide you with your child’s health summary.
– Start preparing your child towards self management and self-advocacy.
– Provide you with a list of potential adult health care providers.
If your child has an IEP, your child’s teachers can help by including health-related goals as part of your child’s transition plan.
(Example of a health related goal: Leah will locate the pharmacy phone number and rehearse a script to be able to refill her prescriptions 3 out of 5 times)
The adult specialist will be the doctor who will be taking over the treatment of your child. There should be a communication bridge between your child’s former doctors and his/her current adult specialist/ health provider. The adult health care providers should work towards partnering with both you and your child.
Although each of the team members has a role to play, you, as the parent, will have to make sure that there is communication and coordination among the team members. The goal is for your child to have a smooth and seamless transition so your child is, at no time, left without care.
(Compiled from Parent to Parent of Georgia and Children’s Medical Services Health Transition Training Guide)