We have been blessed with the opportunity to go through medical transition during the COVID pandemic. People seem to give our kids and us parents a little bit of leeway. Our dear pediatrician’s office let us stay with them until about a month ago, as did several of my son’s other physicians.
I was smart enough to go through the guardianship process before my son, Jackson, turned 18. It seemed like I really didn’t need that proof for anything until suddenly, Jac was sick. Then, everyone needed proof of guardianship for admission, hospital records, etc. I am so glad we went through it when we did, even though it seemed heart-wrenching and kind of crazy at the time.
Now I am trying to figure out some of these other parts of the transition process. It can be like a foreign language to me, such as the special needs trust, an ABLE Account, a letter of intent and, of course, what happens when he turns 21 with his STAR KIDS Medicaid program. It seems I’m always playing phone tag with our managed care company coordinating the various parts of transition.
What I do know is that our Navigate Life Website has tons of information on the transition to adulthood. I often read and reread all the available information. I also seek webinars on this subject, as I did when Jac was younger.
My son is 20 and considered an adult. We recently discovered while Jac was sick that navigating medical care as an adult is much different. We no longer get through the phone lines as fast, the physicians aren’t yet familiar with all of my son’s disabilities, we don’t receive text messages from his care team checking up on him during rough times, and we no longer get “squeezed in” to the physician’s schedule.
To sum it up, we haven’t yet established the loving care we had before Jac was considered an adult. We’re starting over with new doctors. Right now, it feels like we are just a number, which means my advocacy for him is even harder but much more important. I think back to our early days and figuring out how to convey to doctors that we aren’t your ordinary case.
So, I may just start baking muffins for these physicians' office staff and nurses to figure out a way to get through the phone lines a little faster!