As our children move into the adult health care system, there will be changes. Medical teams will change; how we talk with the medical team will change; insurance will change.
Are you ready? Most importantly, is your child ready?
Many families begin the medical transition when children are 12-14 years old. Our family started it earlier. And we are glad we did.
None of this was easy for our girl. We had to practice, practice, practice. We still do. We must be imaginative. And we must continue to look for solutions. Her independence is important to her. She is fond of telling us, “It’s my life.” And she is right! It is her life.
We started with small steps. We had to be creative. Here are some of the supports we use:
We helped her understand her disabilities and how they impact her life. We taught her that disability is a natural part of life – nothing to be ashamed of — and that asking for support is a strength.
Today, our girl is an adult. She goes to most appointments by herself. She lets us know if she wants us to go with her. She struggles with time concepts and memory, so she will ask for a note to give to the doctor to provide accurate dates of medical events. During the appointment, our daughter will call and ask us to come in if she needs clarification. We are always waiting in the parking lot.
We are listed on her HIPPA form, so we can help with her medical MyChart file. Since she struggles with reading, we read it together once the visit notes are available.
All of this has required us to step out of our comfort zone. But we are glad we did. Our daughter is proud of herself. And we are proud of her!
Throughout our journey, we were often reminded of a quote by Norman Kunc, “When people become intentional and creative about how disabled people might participate as they are, new feasible and exciting solutions emerge.”
Here is great information about transitioning to adult health care
In addition to my son having disabilities, I also have several medical conditions that can land me in the hospital at any given minute. Being as prepared as possible is incredibly important for our family.
Categories: Diagnosis & Health Care