In this series on transition to adult medical care, we’ll discuss tips and strategies from parents, providers, and family advocates for those who are starting to navigate the complex process of transitioning out of pediatric care and into adult health care. Thank you to Dr Raina Voss and Joy Gehner for their help in organizing the series.
Guest post by: Joy Gehner
Parent perspective on transitioning to adult care
When you have a child with special needs or complex medical issues, it takes a long time to learn about the care they need, and put together their team of doctors and other providers. After my daughter got her multiple diagnoses, between ages two and three, it was years before I felt like we had her full team of experts in place. It was really hard work, where I had so much to learn about what my daughter needed – and so did her care team.
We’ve been developing our relationships with these providers over the many years since then. We’re comfortable with each other. I trust them to know and understand my daughter and our family. When we talk about her care, we have a shared understanding of our experience, a shared history of knowing what works for us and what doesn’t. On an even more basic level, I’m familiar with the processes for making appointments, and how billing works. I know where to park and how to navigate the buildings to the clinics we need. I even have the phone numbers of her most frequent providers memorized, simply from having dialed them so often! Read full post »