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!
My daughter turned 18 last year, and I know that our time with our familiar team is running out. This is a really hard thing to think about, because I don’t want to have to do all this work over again – finding and getting to know and learning to trust and work with a whole new set of providers. What makes this even more complicated is that every clinic or specialist we see seems to have a different approach. One of her specialists has laid out a plan that includes a recommendation of the doctor to switch to, starting next year. Another has told us when we have to leave, but not where to go. Her pediatrician says she’ll keep seeing her “as long as no one tells me I have to stop.” Several clinics have never brought up the subject at all, and I’ve found it comfortable to avoid it myself as long as I can.
And at the same time that we’re figuring out this big transition, my daughter’s going through all kinds of other “transitions to adulthood.” There’s so much to learn and figure out all at once, it seems. It’s scary and confusing for me and for her.
What I’ve come to realize, a little later than I wish I had, is that planning ahead for this change is important. Just like in the early days when she was first diagnosed, it’s going to take some hard work and effort to pull together all the resources she needs now, as an adult, to keep her healthy and thriving. I’ve discovered that there are some helpful tools out there. And we don’t have to do this alone – we can ask her current providers for support and assistance in figuring out how to move forward in the safest, smoothest way possible.
Here are some resource that you might find helpful:
Checklist for Transitioning to Adult Health Care – PE2643
Adolescent Health Transition Project
Autism Speaks Adult Transition Tool Kit
Disabilities, Opportunities, Internetworking and Technology – University of Washington DO-IT Program
Friendship Adventures – Recreational, Educational, and Leisure Opportunities for Adults with Developmental Disabilities
Giving Your Child an Active Role in His or Her Healthcare
Preparing for Transition From School to Supported Employment
Transition to Adulthood for Youth With Intellectual and Developmental Disabilities
Thank you, Joy, for this helpful article. I hadn’t thought about the logistical aspects of transition before. This helps me get ready.
Thank you for sharing your current journey. Our daughter is 20, and while some of your points I remember from her 18th year, as if they were yesterday. I won’t throw anybody under the bus, but YES! At 18 y/o one of her primary physicians just closed the door. And I refer to a Special Needs Clinician.
We felt very abandoned.
The journwy continues after 18… 21… and beyond. We now prepare for how to carve a place into the world where she can feel attached and valued. Where she can find ways to occupy her time, and hopefully this will look as close to a volunteer or paid position one day. A safe place to live with whatever level of support or independence is best suited.
The journey is never really over, but we/you (and our kids) are looking for new big step to take. (-: