The Daughter Chronicles

Friday, November 09, 2018

The long, LONG saga of Mia's new chair

I've been wanting to write about Mia's new chair for a while, because it's something that we hope will help her out a lot. However, I didn't want to write about it until we actually got it, and that turned out to be … quite an epic, unfortunately. But it's here now, so buckle in!

Mia had an activity chair for several years. We didn't want to use her wheelchair indoors, both because it gets dirty out in the world and because it was difficult getting it into the house every day. An activity chair also gave her a bit more support, which a wheelchair didn't necessarily do, simply because it wasn't built for that. So we had a nice chair that she grew out of. You know, like kids do. A few years ago we realized we probably needed a new one. She had grown to the point where the button to which her feeding tube attaches was right at the level of the chair's tray, so it was very hard to feed her while she was sitting. We moved the arms of the chair down so that the tray wouldn't interfere with her button, but that meant that the tray didn't provide much support anymore. As she had grown, the harness that came over the top of the chair and supported her torso didn't reach anymore, so the tray was the only support she had.
Given her back and hip issues, she tends to twist when she sits someplace with not a lot of support. So she was sitting in her chair with little support, and she looked very uncomfortable because she was always twisted to the left a bit. Eventually, we stopped putting her in the chair and just kept her in bed most of the time, because she could stretch out and she had, naturally, a lot more support. If she was home for a long time - Christmas break, say, or summer after her camp ended - we would bring the wheelchair into the house and let her sit there. She really likes sitting in the living room instead of watching television in her bed - we think it's because she feels more in the middle of the action, even though we try to stay away from her when she's watching television, because if she's not watching the Muppets, she'll be bugging us to put on the Muppets. She really likes the Muppets these days, is what I'm saying (and Norah, through osmosis, has learned about a LOT of 1970s celebrities!).

So we started the process of getting a new chair. What we decided to get was a chair that has a crank attached to it that allows you to slowly elevate it into a stander. It has been some years since Mia had something to help her stand, and that was a gait trainer, which also helped her walk. She outgrew that, of course, and after about 2011, when her muscles started getting even tighter than they had used to be, we decided to stop worrying about whether she would walk or not. For some reason, in that year her muscle tone got really high, and it took over a year just to straighten her legs out. After that, it became clear that she would have problems just keeping her legs straight, much less going through the motions to propel herself forward, so we decided instead to worry more about just getting her upright, because then, at least, her legs would be getting stretched and she could be in different positions than just sitting or lying down. So the chair/stander we decided on functions as an activity chair, but you can crank it slowly so that she gradually stands up, but you can stop any time so that her knees are still bent and she's not completely straight, which would probably be very painful or at least uncomfortable for her. Eventually, we hope that she can stand up straight, but that's a long-term goal. So we found a good chair/stander, and off we went.

Early last year (in 2017, that is), I got a prescription from her pediatrician, because if you want equipment and if you want insurance to pay for it, you need a prescription from a doctor. Look, I liked her pediatrician very much (I use the past tense not because he's dead, but because he retired), and he knew quite a bit about Mia's condition. But he is just a general medical doctor, and while I appreciate his prescription, Mia's physical therapist actually has a doctorate but she couldn't write the prescription because … she's not a medical doctor? Maybe? I forgot to ask. But she knows a whole heck of a lot more about Mia's issues than he did. But that's neither here nor there for now, because he wrote the prescription and whenever we need anything from the clinic, they're quite good about getting it for her.
I took a long time to get around to using the prescription - the early delay in getting her a chair is definitely on me, sure, but I was the least of her problems. So around September of 2017 we submitted the request to our insurance company. We had the prescription, the order form for the chair and all the nifty accessories, and a three-page letter from her physical therapist explaining why she needed a new chair and why it had to be the kind that converts to a stander. Mia has been standing at school, but their frame is a hard piece of wood that they strap her onto and slowly raise, and because it doesn't gradually work on her knees, they can only tilt it to 30 degrees or so. So she puts some weight on her legs but not a lot. If we could get this chair/stander, we could slowly get her to put weight on her legs and possibly alleviate some of the twitching that her leg randomly engages in. It's not a seizure and it's not clonus (at least according to her neurologist), so we just think that she doesn't use the leg muscles enough and the muscle kicks in and twitches a lot. It tends to happen in spurts, where it will go on for a few days and then stop for a while, but it's very annoying to her and to us when it happens. We're hoping that the weight on her leg will cause the muscle to fire in a more productive way, and that's why we need the stander. Plus, she doesn't use her hips often enough, so we're hoping this helps her hips straighten out a little, as well. Finally, standing is just a different perspective from sitting, even if by just a little. Mia doesn't get a chance to get different perspectives, so maybe this will help a bit.

We actually weren't surprised when the insurance company rejected our claim the first time. I worked for a few years in insurance, and I know they tend to do that (it's stupid, but don't even get me started on how insurance companies work) and even some people who had done things like this told me to expect it. I learned later that part of the reason for it is that almost everyone who gets equipment like this is covered by secondary insurance, almost always through the state. So insurance companies reject the claim and the secondary insurance kicks in, and the people get their equipment and the insurance companies don't have to pay out anything. Everyone wins! Except, of course, that state-run insurance is taxpayer-funded, and while I'm completely in favor of government-run healthcare, I can see why people who don't need it would get grumpy about it. Secondary insurance should be just that, secondary, except that it's easier for people who have it to simply use it instead of fighting with their primary insurance providers. But Mia doesn't have secondary insurance, because her car accident came with an insurance settlement, so she doesn't qualify for state insurance. We don't think our primary insurance company was used to dealing with people who don't have secondary insurance. They would soon learn that it's hard to get rid of us!

So we appealed the ruling. They claimed that there wasn't enough explanation about how it was medically necessary, despite Mia's PT writing the letter about how medically necessary it was, and they also said that Mia hadn't done a trial with the chair, so how could they know it would work with her? To which I wanted to reply, "How can she trial the &%$(*#@ chair when she doesn't actually have the &%$(*#@ chair, you know?" But we did what we were told, like good little trained seals, and I contacted a representative of the manufacturer of the chair, who brought a model to our house so Mia could try it out. We took photographs of her and put them with our appeal. This is in early December by now, because that's when the dude could come out and see her.
So we have the original prescription, a second letter from her PT explaining in even more detail why it's medically necessary for her, and photographs of her hanging out in the chair. Off went the appeal!

We didn't have too long to wait, but only because I called the insurance company. We had already waited a few months, and they claimed they would be quick about it (not the last time I would hear that, and it was almost always untrue). I managed to get in touch with a customer service representative at the end of January. She checked and found out that they had just approved the chair that very day, so yay! Little did I know that this was really just the beginning of our problems. She said that they would send the paperwork over to the vendor, which is a local company. I said groovy and called them the following week to find out what was what. They told me that they had received the paperwork, but there was a problem. The base of the chair was covered, but none of the accessories. I said that's weird, as she needs the accessories we asked for, such as a tray (so she can eat while she's sitting) and footplates (so she can place her feet on them) and straps on the footplates (because she will lift up her feet if they're not strapped down) - yes, technically they're accessories, but for someone like Mia, they're vital. So I asked the person I spoke to at the company if she could get me a list of accessories that weren't covered. I did this for two reasons: One, so we could appeal it to the insurance company if we needed to; and Two, because if the list was small and manageable, we could pay for them with our own money. If they didn't cover swivel castor wheels on the frame, for instance, they were something like $100 - we could deal with that if it meant getting the chair sooner. So I wanted the list of accessories that weren't covered. Easy, right?

Ha! It took me several phone calls and emails to get a list of accessories that weren't covered, and several weeks. In fact, it wasn't until March that I got this list. Now, by this time in the process of getting Mia a chair, you should just assume I'm angry all the time. I mean, I get the first rejection, as stupid as it was. I get the delays with the appeal. Then, once they approved it, I understood if they might not pay for all the accessories. I certainly didn't agree with it, but depending on what accessories weren't included, I might understand. But from late January onward, I started to run into brick walls, so it's best if you just assume I'm angry about this all the time. I never lost my temper with any representative at either company, because I was never sure if it was their fault or someone in a different department, but I did speak rather sternly to some of them, usually just out of frustration. I mean, I'm calling and emailing ALL. THE. TIME. You might think they would cotton to the fact that I needed something done in a more timely fashion. But I guess not, and I digress a little. So now it's early March, and I finally get a list of accessories that, I remind you, are not covered by insurance. Let's take a look at that list, shall we?

I don't know how large that is (Blogger's preview function rarely shows things in the size they get published), but if you can see it, you might notice some things. The base is at the top. The accessories listed include, for a chair, a seat and a back. Yes, a seat and a back are counted as accessories for a chair. If you find this insane, you're a rational human, but you've also never worked in insurance! Those are all the accessories we wanted, mind you, so there was no way I was going to pony up almost $6000 for them - as I noted, if they had been a few hundred, we could have swung it. But this was ridiculous. I mean, why wouldn't we just sit her in a regular chair if we didn't need all those accessories? It's madness, I tell you, MADNESS!

So I called our insurance company, and here the anger really began to boil (even though, again, I almost always kept my cool when talking to them, and the few times I got angry I didn't really raise my voice, I just told them how stupid this entire process was). First of all, they told me that her prescription for the chair had expired, so I had to go back to the doctor and get them to renew it. That made me grumpy, but I did it. Then they told me that when I appealed the first rejection, I didn't sign the authorization form saying that I was the person who could speak for Mia, and because she was older than 13, I had to do that. That made no sense - she's not 18, so she's not an adult, so I don't know what 13 had to do with it. The problem was that when we first submitted the request for the chair, her PT actually sent the stuff in, because her letter was the final thing we needed to do, so we gave it to her to send in. So her name was the one attached to the request, but then, when we appealed it, I did it, so they needed me to sign an authorization form. Actually, they wanted Mia to sign an authorization form, and when I heard that, I laughed at the dude telling me this. I told him Mia can sign things, but her signature doesn't look very good, and she won't have any idea what she's signing anyway. He actually told me that once I got the form (which he emailed to me), whatever happened after that in terms of people signing was not his business. Basically, whoever signed it would be fine. When I got the form, there's actually a place for a parent acting on a child's behalf to sign, so I have no idea what they were talking about. I emailed it back, and that small bit of annoying business was settled.

By now it was May. Yes, the gears of insurance companies grind slowly!!!! By the middle of May, the customer service representative who was assigned to my case said they had everything they needed. Ha! So the appeal process went forward, and I was pretty confident about things.
I mean, we had explained why the accessories were necessary, and if you're going to give us a chair without a seat and a back, I can't really say anything. Of course, we went on vacation to England in early June without having heard anything, even though they said they would have an answer for us. I actually emailed the representative from London to find out what was going on, and she told me … that the appeal had been rejected. What? Exsqueeze me? Baking soda? It cast a bit of a cloud over our vacation, but there wasn't anything we could do about it then. So I girded myself for more battle when we returned to the States.

I got back and emailed the rep, basically asking just what the hell was going on. The rep told me that the standing frame was covered but everything else "exceeded basic needs." You know, like the straps to keep her sitting in the chair instead of falling forward onto her face. She suggested I write a personal letter telling the appeals board why they were full of shit (okay, not exactly, but explaining why she needed all the stuff) and that they would have a pediatric disability consultant take a look at it. In the meantime, I had received the official denial letter and it implied that at some point, most of the accessories were approved. So I began to have a sneaking suspicion that what was being denied was different than what had been in the past. I asked the rep about it, but she sent a list that matched what had been denied back in January, although she also implied that at some point, it had been approved. The mystery deepened!

By this time, it was July, and while I was still frustrated, I wasn't particularly angry. Then I got an email that made me angry. The rep said that I needed a new medical letter of necessity, or actually two - one from her pediatrician and one from the physical therapist. They both needed to explain that the chair/stander was necessary for Mia's daily living and that without it, her medical condition would worsen. Then she told me that one of the main reasons why it was denied the first time - THE FIRST TIME! - was because the PT had used the word "leisure" in her letter, describing how Mia could also use it for leisure activities. Now, the letter she sent was 99% about the medical benefits to Mia, but because she used the word "leisure," they denied it. It's a chair - of course Mia will use it to sit, which isn't all that strenuous an activity! Of course, just being Mia is difficult - she has two titanium rods in her back, after all - so even a "leisure" activity like sitting forces her to use her muscles more than it probably does you and me - but still - a "main reason" why it was denied? That was the final straw for me. I fired off a very angry email to the rep (even though I assured her I wasn't mad at her, because I wasn't - it wasn't her fault) about the word "leisure" and the fact that this was never told to us back in frickin' October when we got the first denial letter. I mean, it's stupid enough that they denied for that, despite a prescription from her doctor and a very detailed letter from her physical therapist about how it will help her medically, but to not tell us? That sucks. And I told her so. She was very sympathetic, and she said she was trying to figure out a way to override the necessity of sending more letters. So that was nice, even though, as I noted, we had already wasted nine months because they couldn't be bothered to tell us they didn't like the word "leisure."

As I noted, I had noticed that the approval was a bit vague, so I sent her another email asking if we could get clarification on what was approved. I didn't want to be arguing about small stuff, especially if they were being so contrarian. I looked at the order form and told her what supposedly came with the frame, not as an "add-on" but as just standard, because if the stander was approved, perhaps all that was as well. In late July, she got back to me with some good news. Apparently our insurance is through an employer group which sets the rules for the employees. She said that she got in touch with the liaison to those groups, and she explained the situation. If the employer group was willing to approve it for their employee (which is Krys, as she's the policy holder), then any prior denials wouldn't matter. The employer group's wishes override everything. She also noted that some of the problems seem to be from when the prior authorization had expired and what people were trying to add onto the prior authorization. I don't know everything about prior authorizations, but in case you haven't had to deal with them, the insurance companies need them so that a doctor already knows that we're trying to get this equipment (or surgery, or whatever). They expire, so all the foot-dragging by the insurance company had screwed that up, too, even though they managed to extend it in the middle of all this. I don't really believe her, but the rep claimed that the appeal from October was approved with the basic accessories, but then a "provider" submitted another authorization with extra stuff that was denied.
I assume she means Mia's PT, who submitted another letter, but she only submitted two: the first one, which was part of the original denial, and the second, which was part of the appeal. In both letters she stressed the need for all the accessories, so I don't know what this mysterious letter from after the approval with "new" requests was. I didn't push it, though, because if the appeal to the employer group worked, it wouldn't matter. It was just a mysterious part of the process that, as usual, no one told us about so we couldn't fix it right away. Of course.

Finally, on 2 August, the employer group said it was okay, and the entire thing was approved. Huzzah! You might think this would end the saga, or at least bring it to a swift conclusion. You, sadly, would be wrong. I didn't hear anything for two weeks, and neither did the vendor who was ordering the chair. After some weeks (the rep was on vacation for a few weeks, and we can't have someone else picking up the slack, can we?), she emailed me and said the vendor just had to submit a claim for the chair, and they would get the approval. She sent me the approval, which I couldn't open because it was a Word document and I don't have Word on my computer. The vendor said they couldn't submit a claim without the approval (and the insurance company wouldn't give out the approval without a claim?), so I forwarded the document I had - which I hadn't read, of course - over to them and told them I hoped they could open it. Yes, this is the state of health insurance in our country today - isn't it grand? Finally, the vendor was able to open the document, see the approval, and submit the claim to the insurance company. Success!

Of course, it still took a while, because why would anyone hurry up at this point? The vendor got the approval and had to contact the manufacturer. The manufacturer, it seems, is in Minnesota, so it would take a little bit to ship the chair here, but okay. They told me they had to get a quote from the manufacturer, because they had a certain amount that the insurance company would pay and they needed the quote to make sure it would come in under that. They told me that the quote usually took a day to get, and on the phone, I nodded and said, "Yeah, okay" because I knew it wouldn't take a day - everything else took longer than everyone told me, so why not this? Of course, a few days later I still hadn't heard, so I called back, and they said they would call about it. So they got their quote, which turned out to be quite a bit less than the insurance company approved, and as we have already met our deductible this year, we didn't have any out-of-pocket expenses, which I guess is a small silver lining in all of this. They said they would order the chair and that it usually takes 4-5 days to arrive. Once again I nodded and said, "Yeah, okay" and already began thinking about when I was going to call them to find out where the chair was. This was in the middle of September - I can't remember the exact date, but it was probably around the 20th or so. I waited for a week, maybe, then called the vendor back. They couldn't give me any updates, because they claimed they had ordered it from the manufacturer, so it was out of their hands. I asked them to call the manufacturer, and then I waited a little longer. I was hoping that the chair would arrive during Mia's Autumn Break, which began on 8 October, because then it could be delivered during the day and she wouldn't be at school and therefore they could see how it fit her. The week before the break, I called the vendor back, and they told me the manufacturer said it was "scheduled" to ship … on Tuesday, 9 October. SCHEDULED TO SHIP?!?!?!? You mean it hadn't already shipped, even though the vendor said they had ordered it a few weeks before? So it would be probably three weeks since it was ordered that it was shipped? Was Geppetto carving it out of the highest quality wood deep in the forests of Bavaria? Were aliens constructing it out of space-age polymers somewhere in the orbit of Betelgeuse? Without freaking out too much, I asked them when they expected it to arrive in Arizona, and they told me the 13th - which in my blind rage that I was trying valiantly not to express I didn't realize was a Saturday. So I said "Groovy" and waited until Tuesday the 9th, when I called the manufacturer. They did confirm that it was scheduled to ship that day, and I didn't get the chance to ask them if their 97-year-old blind man who was reading the assembly instructions in Old English had managed to put the thing together correctly.

I called the vendor on Friday the 12th and asked if the chair had magically appeared a day early, but of course it hadn't. I called on Monday the 15th and asked where it was, and they told me that it was either in their warehouse already or was going to arrive that day. The dude on the phone told me that he would check with the warehouse and call me back, but it shouldn't surprise anyone to find out that he straight up lied to me, because I never heard back from him.
I called on Tuesday and found out it was in the warehouse, and was "in line" to be assembled. "In line"? What the heck does that mean? Do they only have one person assembling these things? Did the 97-year-old blind man accompany it, and only he could put it together, but only after he assembled fifty other items? The woman on the phone told me she'd call me back when it was assembled (a day or two, she assured me), but of course I didn't believe her for one hot minute, so I called back on Wednesday, and it was ready to be delivered! Huzzah! Now, I had no confidence that they wouldn't load it on the backs of donkeys and try to walk the ten or so miles between the warehouse and my house and that it would turn into a Humphrey Bogart/Walter Huston movie, but I thought that it was 2018 and they must have heard of a van by now. The woman told me they would deliver it the next day, and when I asked when (again, I wanted to make sure Mia was home), she said the delivery dude would call me on Thursday morning to set up a time. "Yeah, right" I didn't say but thought, and sure enough, I had to call on Thursday to see if the delivery dude could come around 3 o'clock, as Mia gets home from school around 2.45. So around 3 o'clock on Thursday, 18 October, Mia's chair was delivered into our living room. You'll forgive me if I fainted when the delivery dude left it with us, as I thought I might die of old age before it actually arrived.

So now we have her chair. It's impressive. It's very heavy and rather wide - the dude tried to bring it in through the garage, but it was juuuuuusssst a bit too wide for the door, so we had to lift it and carry it up four steps to get it into the house, and I was surprised I didn't get a hernia from that. All the accessories are there, and Mia fits in it nicely - she's actually a little bit small for it, so she has room to grow if she wants to, which is nice. She enjoys sitting in it but hates it when we make her stand, as it's extra work for her! We haven't made her stand too much, and we haven't gotten it straight yet - we keep her legs bent a little bit, but we're working on longer standing times and getting her straighter. One of the reasons we wanted to get her a chair is because she can sit out in the living room instead of lying in her bedroom, and even though we can't be in the room with her (we're far too distracting!), we think she likes being more centrally located. She can eat a wider variety of foods, too, because in bed, she can't have things that are too crumbly. Out in her chair she can eat Doritos and fig bars and such, because she drops more on her tray and not a lot on her seat, so it's easier to clean up. It's a nicer television, too, so maybe she digs that.

This annoying odyssey was annoying because it shows the problems with health insurance in this country so very well. Yes, there's insurance fraud. Mia's PT told me she has seen people with chairs like this who never use them, or others who get it for free through the state insurance and then sell it and keep the money. Of course there are unscrupulous people all over the place, but here we are, paying our premiums to a company that wants to make a profit and probably doesn't on someone like Mia. Still, they make a profit on so many other people, yet they're being jerks about paying out to Mia. We did everything they asked, and it still took over a year to get the chair. We had documentation from professionals who work with Mia all the time, and they still kept rejecting us. I threatened to call Mia's lawyer, whose firm doesn't do this kind of thing but she knows plenty of people who do, and when you have to threaten to get lawyers involved simply to get something that, according to the insurance company's coverage guidelines, they needed to provide to us, it's ridiculous. I was frustrated because all summer, when I called the insurance company, they kept telling me the appeals board had deadlines for an answer, which they never met. At one point I got so frustrated I told the customer service representative that either she was lying to me or she was incompetent, which I do regret as she (and anyone else I talked to) was just looking at a screen and going off what others were telling them, but when you tell me there's a deadline and then, when I call on that deadline and you tell me that the deadline has been pushed back, I get angry and decide that you're lying to me, you're incompetent, or someone else is lying to you, so why aren't you angry that someone is lying to you? I think part of the problem was that these people didn't know exactly what they were trying to get for me - more than one person thought it was a wheelchair, even after I told them it wasn't. Some thought it was just a stander, so they couldn't understand why I needed "chair" accessories. That I sent in the order form, which says exactly what it is, and that you can easily find pictures of it on-line, apparently never crossed anyone's mind. They hear "chair" and they think "wheelchair," or they hear "stander" and think something rigid that can't convert to a chair. It's mind-boggling that people who work for a health insurance company can't be bothered to get this basic information correct. There's also the fact that, as I noted above, most people just go through their secondary insurance. They don't fight their health insurance companies because it's not worth their time. I wonder if the insurance company didn't know what was going on and their appeals people kept thinking, "Why doesn't this dude just go away?" Mia doesn't have secondary insurance, so this was it. That's not a reason for them to string us along, but I wonder if they were just mystified as to why we kept fighting this battle.

It's nice to have the chair, because we think it will help Mia use her muscles more, perhaps help her twitching (although we're always looking for other things to help with that, too), and get her to eat a wider variety of stuff. The tray is nice and big, so we can play some games that she likes on it, too. At Thanksgiving, she can sit with the family, even though she doesn't really like doing that - we don't "force" her to eat with us very often, but it's nice that she can. And she likes sitting, so that should be neat, too.

I apologize for the length of this post, but it's been a long process. Anyone who's had to deal with insurance for big-ticket items probably knows the frustration and even anger that can accompany it, and I certainly sympathize. But we have it now, and Mia digs it, so all's well that ends well? I guess?


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