Where this begins
This has been building for some time now.
In the quiet unfolding of navigating care, insurance, equipment, and coordination between systems, I’ve started to feel the weight and complexity of what it means to advocate for a child. And in that unfolding, I’ve found myself thinking about the parents who came before us — the ones who learned these systems without a map — and those who will walk this path after us. It’s made me wonder how these experiences might be held and shared in a way that could support, prepare, or simply sit alongside another parent in it.
One of the moments that brought this into focus for me began in 2024, when we started exploring the need for an activity chair, around the same time we received our daughter’s wheelchair. It was the first time she could move through the world beyond our home without relying on someone else’s legs, and it gave her a real sense of independence. At that point, the idea of an activity chair felt more like a supportive addition than something urgent. So when the initial request was denied, we felt disappointed, but not entirely surprised.
As our daughter grew and began using her wheelchair more, we started to realize that the need for an activity chair was far greater than something casual. While her wheelchair has custom seating to support her body in proper alignment, it wasn’t designed to meet all of her needs — especially when it came to safe eating, sitting at counter or table height, or participating in floor-based activities where she needs to use her arms not just for stabilization, but to fully engage and be part of what’s happening around her.
So we decided to begin a new preauthorization request with insurance — the same activity chair, but this time supported with more clinical documentation for the LMN. It was denied again.
This time, it started to feel more personal, and I found myself going back to the drawing board. As I looked more closely, I realized the model we had requested was designed for children between the ages of one and five. So I began researching other options and found two activity chairs that had the potential to grow with her over time. I thought that if we requested something with more long-term use, it might strengthen the case for approval.
I brought this new approach back to our daughter’s medical team and the vendor. Our clinical team was supportive in exploring next steps, but the response I received from the vendor surprised me. There was some hesitation — even resistance — to trying again, with concerns about the time and cost involved in going through another approval process that could still result in a denial.
It was the first time I realized that even when a need is clear, moving forward isn’t always straightforward.
Internally, my reaction was much more direct — a surge of protectiveness and frustration that rose up quickly. The thought crossed my mind, “I don’t give a flying f** what it costs. If she needs this, she’s getting it.” But outwardly, I stayed steady and said, “I hear what you’re saying, and I still want this to move forward.
I asked, “If it gets denied again, what are the next steps?”
That was when I first learned about the appeal process, and the roles both the vendor and clinical team play in moving that forward. I was told that if the appeal were denied, the next step — with the support of the vendor — would be to move toward a judicial review.
With that understanding, we moved ahead.
At the same time, we also had additional requests in process for her wheelchair — including a chest harness and ankle loops — to better support her positioning and make it less taxing for her to maneuver.
To my surprise, when I checked in on where we were in the process after three months had passed, I learned that both the wheelchair upgrades and the activity chair had been denied — and that the appeal we had discussed had not been submitted.
It wasn’t what I had expected.
By the time I understood what had happened, the appeal window had already closed. I found myself having to start the process over again.
This time, I knew I would need to stay much more closely involved in each step along the way.
So we began the process again for all of the items, this time with even more supporting evidence. By then, our daughter had completed a full year of preschool, where the school had been using an activity chair within the classroom setting. Through that, we were seeing tremendous growth — she was able to express just how intact her cognition is, and it became clear that what she needed was an environment designed to remove the barriers that had been limiting her ability to fully express herself.
At the same time, it was also becoming more evident that her wheelchair alone wasn’t providing enough support. She needed frequent repositioning and would often collapse in her seating, which made it difficult for her to consistently use her joystick to navigate independently.
Alongside this, I also reached out to her PT and OT to request letters of support for her to have an activity chair within the home, so that the same level of access she was experiencing in school could be carried into her everyday environment.
After submitting everything again, the process stalled. Insurance came back asking for “something new.”
Something new? I remember thinking, what does that even mean?
By that point, I was starting to feel frustrated — especially knowing this wasn’t the only system we were navigating to create access for our daughter. There were multiple pieces moving at once, and it was becoming harder to keep track of where everything stood.
That was when I decided to create what I started calling a “medical dashboard” — a place to track everything.
Literally everything. My mind was overwhelmed by the process — not just what needed to be done, but trying to keep track of what had already been done, what was approved, what had been denied, and where each piece stood along the way.
As I began filling in the medical dashboard — tracking different equipment needs, therapy supports, and access within our daughter’s school (a story for another time) — I started to see just how much parents of children with medical complexities or disabilities are expected to hold.
And quite honestly, that realization brought me to tears.
I was carrying so much, and at that point, it felt like I had very little support.
That was when a member of our clinical team stepped in. She recognized where both the medical team and the vendor had gaps in supporting us, and began helping to move things forward. While our clinical team was actively working to support us, the vendor side of the process continued to be difficult to navigate, and at times felt resistant to moving things forward.
That part surprised me.
I hadn’t expected that some of the barriers would come from within the very system meant to help facilitate access.
Still, having someone step in who could help me stay on the pulse of things — and who I could speak with candidly about both the insurance process and the challenges we were facing — brought a deep sense of relief.
At this point, we are still in the process.
There have been continued challenges — including miscommunications, incorrect orders, and moments where the process itself has been described as an “administrative burden.” More recently, we learned that the activity chairs we were hoping to move forward with are not currently available in the U.S., which led me to reach out directly to the manufacturer to better understand what options might be available that could grow with her. Even that step felt outside of what’s typically expected, and I found myself explaining our experience in order to move things forward.
Now, we are waiting for the next steps so we can continue.
And still, we continue.
This experience has taught me that advocacy isn’t always loud or forceful. Sometimes it’s steady, grounded, and persistent — continuing to ask questions, to follow up, and to move things forward, even when the path isn’t straightforward.
