We’ve known for a while that we needed to get Gavin a new adaptive stander. While we have one on loan from the N.E.A.T. Market, the issue is that it’s a little too big and he doesn’t feel comfortable in it because there’s no back to it (the stander makes him lean forward). Problem is when he tones, he does so backwards, where there is very little support to make him feel safe.

Knowing the process to get the new stander would happen after my company changed health insurance companies; I started asking questions weeks prior to ensure we would have benefits for coverage. Without getting into all the details, I was assured that it WOULD be a covered benefit. I checked my benefits summary once enrolled to verify that the stander was INDEED a covered benefit under “Durable Medical Equipment” and was not listed with any “exclusions”.

Based on all that information and when my insurance changed over we took Gavin to Shriner’s Hospital to be fitted for a new adaptive stander (June).

(Quick side note – an adaptive stander is just what it sounds like. An adaptive stander promotes bone strength by having the user bear weight on his/her legs, it also helps with digestion, circulation, and breathing. In Gavin’s case it would also help with trunk and head control and would be the stepping stone to get him an adaptive walker – ideally next year or so.)

I don’t hear anything and call the vendor to find out if we’ve been approved – as everyone is expecting. Except I don’t hear that it’s approved, I hear that we’ve been denied. Again, I won’t go into details as we are obviously going to petition the denial (and it’s really boring stuff), but here’s what I don’t get and maybe someone can explain it to me.

Gavin’s three Birth23 therapists, 2 Shriner’s therapists, four specialists and his pediatrician all agree that this stander is necessary for his continued development and growth. These are people who are tops in their fields and to put it plainly have been around the block a few times.

Knowing that in the long run this will benefit him, increase his ability to walk and function on his own, with less dependence on others or additional (and very expensive) equipment why would it not be approved (especially since I was told it would be – but that’s another discussion)?

In my mind, it’s similar to preventative care. Take care of yourself BEFORE there’s a problem to lessen the likelihood that there will be a problem down the road. Preventative (or well) visits are typically covered 100% by insurance companies (provided in-network and all that jazz).

When I called to speak to a rep at my insurance company to get a better explanation as to why the claim was denied I was essentially told that it’s because of the way the claim was coded (although she didn’t offer any additional information on how it could be coded differently). She also seemed confused and unable to clearly explain why the claim was denied (comforting!) The other thing I noticed was this. On the denial claim it lists all these “exclusion” reasons – which actually do not fit with what his stander is or what it does, ironically, but saying that “this letter is not a treatment decision. Treatment decisions are made between you and your physician.”

So we’re using codes – not actual medical findings to help dictate what is covered and what isn’t.  Maybe it’s me. Maybe I’m too close to this, but it just seems like the system is totally broken.

The reality is that the minute you put the word “adaptive” in front of anything the price gets jacked up 100%. There are certain devices/items that I totally understand being labeled as “exclusions” and would never even think of asking insurance to cover. But a device that could actually have a huge and lasting impact (oh and lessen medical costs in the future) being denied just doesn’t make sense to me.

Another side note: this past weekend, we were able to get Gavin to kneel crawl using a tumble form and a dolly. It stretched his arms and allowed him to lean on something while using his legs. He pushed himself across the floor (TWICE). When we can, WE adapt things at home to help him learn to use his muscles and learn new skills. We go to the specialists when we know we’re out of our league and need the “real” adaptive equipment.

So for now, I will remain baffled by the health insurance world and continue fighting for Gavin – getting him the services and devices he needs to grow and to one day soon show the world what surprises he has in store for all of us.