Ambulatory Wheelchair Users and the Insurance Maze: The Evaluation

If you read Part 1, you know it took months just to get to the starting line. Today I want to talk about what happened once I finally got there, and where things stand now.

March 25th: Getting There

Mary Free Bed Rehabilitation Hospital is about an hour from where I live. That's not a drive I can do without getting a migraine, so I arranged Medicaid transport both ways. I went alone.

I want to name that because it mattered more than I expected. That building is large. Navigating it in a manual wheelchair that doesn't fit my body, by myself, without a caregiver or anyone with me, was genuinely hard. By the time I got to the appointment my shoulders were already paying for it. That's not a complaint, it's just the reality of what it takes to access care sometimes. You show up, you manage, and your body keeps the tab.

The Evaluation

In the room were the occupational therapist and a Carelink rehab specialist. It was actually the same Carelink specialist who had followed my case through the entire process, which made for an interesting dynamic given everything that had happened with the paperwork.

The evaluation covered a lot more than I expected. It wasn't just about whether I could get from point A to point B. They assessed my joint stability, fatigue, POTS, sciatica, nerve pain, and syncope episodes. They also talked about function in my actual home. Not just whether I could use a chair, but whether a chair would work in the spaces I actually live in.

That last part was something I had already thought through carefully before I ever walked in. Maybe it was the designer in me, but I had been thinking about fit, function, and spatial reality long before I got to that appointment. I did my research. I showed up knowing what I needed.

Going In With a Plan

I did my research before the appointment. I knew what I needed and what wouldn't work for my life. A full power wheelchair with tilt and all the features that some people with severe POTS genuinely need wasn't going to fit in my home or in my Toyota Camry. A chair like that would have solved one problem and created several others.

So I went in knowing what I wanted. Including a specific brand: Motion Composites.

The OT started showing me some options. They were fine. But I asked if they could bring out Motion Composites instead. Her response was immediate: of course. She went and got one.

That moment felt important. I had done the work to know what I was asking for, and being prepared meant I wasn't just handed whatever was easiest to order. I got to actually advocate for what my body needed.

The one tradeoff: Motion Composites chairs are manufactured in Canada, so the lead time was longer than some other options. I knew that going in and decided it was worth it.

After the Evaluation: The Paperwork Begins (Again)

You don't leave a mobility evaluation with an order form in hand. Here's what actually has to happen first.

The Carelink specialist fills out the order form. The occupational therapist, if she's a good one, writes a letter of medical necessity. Mine was a good one. She wrote two pages documenting exactly why I needed this chair and what my body required. That letter then went to my PCP, who had to review it, agree, and sign off that yes, this is medically necessary, yes, Monica needs a wheelchair.

Once my PCP signed it, it needed to make its way to Carelink via fax.

And here is where things started falling apart again.

I could see in my chart that my PCP had signed the paperwork. So I called Carelink to confirm they received it. They hadn't gotten the fax. I contacted my PCP. They said they had faxed it and would fax it again. Carelink still didn't have it. Back and forth, back and forth. That loop cost me about two and a half weeks.

Eventually I did what I had done before. I downloaded the signed order and the letter of medical necessity from my chart myself and emailed them directly to the Carelink specialist. At that point I was pretty done with the whole situation.

His response: oh yeah, we did get the fax, it just didn't make it into our system.

But before Carelink could place the order, there was another step I hadn't fully accounted for. The paperwork had to go from Carelink to my insurance company for approval. Insurance had to review and sign off before anyone could order anything.

Given how much time had already been lost, I called my insurance company directly and asked if they would expedite the review. They said yes. Not everyone gets that. Expedites are typically granted based on medical urgency, and my situation qualified. My care manager was able to get the approval pushed through faster than it would have gone otherwise.

Once insurance approved it, that approval went back to Carelink. Only then could the order actually be placed.

I'm including this because it's a step that doesn't get talked about clearly. The full path goes: evaluation, letter of medical necessity, PCP sign-off, Carelink, insurance approval, back to Carelink, then order. If you're in this process and things feel stalled, it helps to know exactly where in that chain things are sitting.

So when the Carelink specialist told me he'd get the order in that day, that was a Monday.

I had specifically asked him to let me know when the order went in so I would know without any doubt that it wasn't being delayed anymore. Most of the week passed. I heard nothing. So on Friday, May 15th, I called and left a voicemail saying that if the order hadn't gone in that day, I needed to speak with a supervisor given all the delays.

Within an hour I got a call back. The order was in the system.

That is what frustrated me most out of this entire process. Not the fax getting lost. Not the weeks of back and forth. The fact that it took one voicemail threatening to escalate for something to happen in under an hour that I had been waiting four additional days for. Why did it take that?

I don't have a good answer. I just know that it did, and I'm documenting it here because you might need to know that escalating is an option. You're allowed to ask for a supervisor. You're allowed to name the delays and say this isn't okay. Sometimes that's what moves things.

Where Things Stand Now

The chair was ordered. And then the waiting began again.

I'm still in my friend's borrowed wheelchair that doesn't fit me. Still navigating daily life in something that wasn't built for my body. Still waiting for the one that was actually chosen for me to arrive.

It's a different kind of waiting than before. Before, I didn't know what was coming or when. Now I know what it is, I know it was chosen thoughtfully, and I know it's on its way.

That's not nothing.

What I Want You to Take From This

If you're heading into a mobility evaluation, do your research first. Know your life. Know your home. Know what you can and can't work with. You're allowed to walk in with a preference. You're allowed to ask for what you actually need.

And after the eval, follow the paperwork. Check your chart. Make calls. Send emails. Escalate if you have to. It shouldn't fall on you to do this while managing a chronic illness. But knowing that it might means you won't be caught off guard when it does.

I'll write Part 3 when the chair arrives.

If you're navigating a similar process and want to share your experience, I'd love to hear from you.