Never Ending Bureaucratic Mazes

As you probably know if you follow this blog, we’ve been working on trying to get a minivan that can accommodate Cyrus's wheelchair for over a year. The difficulty here is that these vans are expensive. A new minivan is around 30-40k, and then the conversion is apparently an additional 24-32k on top of that. In my research, I also discovered that you could buy a used van for about 35k (so like the cost of a regular new vehicle). But then I learned from a special needs parent friend that the Regional Center will often help pay for these vans, but only if you get one that is practically brand new. They only want to invest this amount of money if it's going to last. So they pay for the conversion, and we pay for the van. This means for the same 35k we can get a new van instead of a used one. Of course, you have to be able to afford the new van, so this system is unlikely to help a special needs child that is in a family with less financial resources.... (but I will spare you my social justice rant for the time being).

But the Regional Center often refers to themselves as the payer of last resort. They will help you, but only if everyone else says no first. So we were assigned the task of obtaining rejections from our insurance company, three charities, and California Children's Services (CCS).

CCS was easy! They have a standard rejection letter on file that they will just hand to you upon verbal request!

The hardest part about getting rejections from charities was in finding organizations that might consider a case like ours. For the most part, this involved writing a grant proposal or filling out an application that explained what the funding would be used for and why that equipment or those services were needed. Once submitted it was simply a waiting game. I submitted three applications within the space of a month, and two of them responded within about three months. Both of them rejected us, likely on account of our income, which is apparently too high for such charitable causes.  But no matter, I only needed rejections anyway. (Maybe these charities will help cover the families that don't have the financial resources to use the Regional Center's program. At least I hope so!)

But the third charity never responded, after months and months. I sent in an inquiry about our status, and never got a response for that. I wasn't sure that the organization was even still active, and there was no phone number to call.

So, I found a fourth charity! One, that had updated information less than a month old! And spent a day writing another grant proposal. We never heard from them either. I wasn't too stressed about it though, because I was busy fighting with our insurance company!

I lost count long ago of how many times we tried to called them. I honestly have learned in dealing with insurance companies and specialty pharmacies that it sometimes helps to just call a second time so you are talking to a different person who will give you a different story. Over the first three calls, we made it deeper within their bureaucratic phone maze each time. But since we have learned how to navigate these departments, we’ve had the remarkably the same frustrating conversation over and over again. It goes something like this.

After asking to make a request to receive prior authorization in the funding of a modification to a van, we are transferred over to the Authorization Department. They ask for a prescription, which we give them. Then they ask for the ICD 10 code. This is a code that is supposed to identify the specific equipment that is being requested. When we don’t have one, they insist they are unable to process the request at all. My pediatrician didn’t know what it is and suggested we talk to the manufacturer. The sales people at Mobility Works insist that the code doesn’t actually exist, and that you just tell this to your insurance company, they will usually issue an automatic denial. Ours won’t do this.

We then requested aid from our social worker at the regional center in finding a code. She gave us a code, but it wasn’t an ICD 10 code. It was a diagnosis code that justified why he needed the van modification, but did not identify the equipment. The request could not be processed. But I was told directly, that if it doesn’t have a code, it’s definitely not covered under the plan. One phone rep suggested we talk to the Benefits Department and ask for a “Benefits Denial Letter”, which according to them was just a blanket – this is not covered under this plan – type of letter. And that it wouldn’t have to go through the formal authorization process.

Upon talking to the Benefits Department, they always tell a different story. Basically, that they can’t issue a Benefits Denial letter unless the request has actually been denied. When I told them the Authorization Department wouldn't even accept the request, they usually shrugged, apologized, and told me they can’t help me. But on one occasion, the phone rep suggested that I write an Appeal. They said, that if I submitted an Appeal the Insurance company would HAVE to rule one way or the other within 30 days of the request.

So, we did that. It was very similar to the grant proposals sent to the charities. And then received a letter back from the insurance company, that we can’t actually appeal a decision that has never been made. That they can only process an appeal on a claim that was previously denied. 

I turned to other Special Needs parent friends that have already been through this process, and learned that they had no such troubles getting their insurance company (Kaiser in both cases) to give them written denials.

After Cyrus had surgery this past July, and Anthem Blue Cross was courteous enough to assign us a Nurse Case Manager who would call us once a week to check on Cyrus through questions to see if she thought we should go to the doctor’s due to surgery complications. She also offered to answer any questions related to our insurance coverage. I asked her for help on this. She was horrified by my experience and promised to try to have a resolution within a week.

She and a social worker that also works for Anthem Blue Cross worked internally. They told me they tried to contact our social worker at the regional center (I think only to receive a code). They tried talking to the Benefits and Authorization departments both, to see if they could get them to write a letter, or if they knew some tricks for how I should be phrasing my requests to make better progress.

After three weeks, they both gave up and said they couldn’t help me. That my best bet was to call them myself and ask to speak to respective managers. My husband tried that, but they didn’t allow him to speak to the managers.

Since then, I have called again and had no success. I have also requested their policy of being unable to process a request without a code, in writing. They said they couldn’t do this because this policy was on internal documents that outlined job descriptions. I requested that they put it in writing that they were unable to process the request. They said they couldn’t do that either.

I was feeling rather frustrated for having poured months into this, to only have gotten absolutely no where. It is abundantly clear to me that my insurance company will not cover the van conversion. But they categorically refused under any and all conditions to put that in writing.

At this point, I was panicked. When we first started this process, getting a wheelchair van was in the "would be nice" category of priorities. But it has rapidly become a necessity as Cyrus has outgrown his adaptive stroller, and was fitted for a new one this past summer, and we're expecting his new Zippy Iris within few months. This new wheelchair will not fold or collapse the wave the adaptive stroller will. Once we have to use this (we're already cramming him into the adaptive stroller as it is), we will no longer be able to transport him anywhere. Not to doctor's appointments or anything. He will still be able to go to school because the school buses can handle his wheelchair, but we wouldn't be able to take him anywhere. He would be trapped at home. 

The panic was further compounded by the fact, that we're expecting another child. And once she is born, we won't be able to fit both children (the adaptive wheelchair and a stroller) in our current vehicles. So, we will have to buy a van anyway. And it seems absolutely ludicrous to buy a van without the conversion that can't accommodate Cyrus's wheelchair when we KNOW we will need that in the very near future. (Not to mention, that getting a van converted after the fact usually costs an additional $6000 for shipping costs to get the van to and from the factory). 

So, I reached out to our social worker at the regional center and explained all of this in minute and excruciating detail with all the documentation of what I had attempted so far. And like the nurse case manager, she was horrified by our experience. And she reached out to her supervisor to get special permission to skirt around the policy of needing a rejection from insurance. But she told us that we needed to get one more actual rejection from a Charity, and recommended Center for Independent Living. She said they would either have funding or not within their charity cycle and would tell me right away. She was correct! It only took a week! 

Our next step was to be assessed by an Occupational Therapist to establish that Cyrus does in fact need this. This was scheduled within two days of everything else being submitted. I was nervous that this one assessment would make all of this work pointless, but she wrote a beautifully detailed report that documented exactly why every other option was problematic or outright useless for Cyrus, and our application went through the Regional Center less than a week later. We were then told it takes about a month or three before the funding went through. 

But we went van shopping anyway. Picked out a slightly used Toyota Sienna with a power folding ramp, put a holding deposit on it, and hoped that we'd maybe have it before Christmas! Only to be contacted by the Dealership a week later, telling us he had received approval from the Regional Center for the conversion funding! He told us he had only ever seen one other application go through faster than this one once everything was submitted, and that we must have been put on the priority fast track list. Our request for our own financing for our portion has also already been submitted, and is expected to be completed in the next two days. We might have this van in time for our Thanksgiving trip (Like literally, we might have it the day before Thanksgiving), but we were guaranteed that everything would be completed by the end of the month.  

So apparently, the secret to success with these bureaucratic mazes is being neverendingly persistent. And if that doesn't work, lots of crying to social workers might open a few more doors. 

General Update: 
We made it back home from hotel living October 20th! And we are in the process of unpacking the second bedroom that was filled up with boxes of all our kitchen, dining room, and half of our living room stuff. With the eventual goal of setting up Cyrus's new big boy bed in his own room!

The seizure count might be slightly down. He was having up to five seizures a day for the last few weeks, but this week he seems to have stopped having them at school, but will still have them afternoon or evening. And the ones we are seeing are more severe than they've been with the tendency of wiping him out for an hour or so afterwards. This is probably due to the introduction a new anti-seizure med - Ficompa. This drug is apparently powerful, and only given once a day in the evening. But this might be why we still have some in the evening before his meds have been given, as the protection from this drug may be waning in these afternoon and early evening hours. Hopefully, as we move to the full dose over the next two weeks, these will drop down as well. 

Due to the chronic congestion, Cyrus's Pulmonologist referred him to an ENT (Ear Nose Throat Doctor). At this appointment we learned that Cyrus has freakishly large adenoids, and larger than average tonsils. This apparently makes it difficult for him to clear out any mucus in his sinuses once it is there. They told us we could surgically decrease the size of his adenoids and remove his tonsils, but they didn't push this option, and they said, he is likely to grow out of this "sinus crowding" within the next few years. So we didn't push for surgery. We don't want to do surgery again if we don't have to. In the meantime, we have added a bulky suction machine to our at home medical equipment collection. And after a little less than a week of using it a few times a day (Cyrus hates it!) his congestion has cleared up completely!

Our Complex Care Clinic recommended Cyrus for a diaper service that would pay for all his diapers, since he is likely to continue to need them for his whole life. The diaper service called and said they needed rejections from our insurance! (Nooooo!) I didn't want to touch that, so Kyle was nice enough to make the request yesterday. Anthem Blue Cross didn't even blink! They said, "Yeah, sure. Where do you want us to send that?!" They didn't even ask for a code! It took only one phone call! I'm going to be happy about that! And I'm not going to scream in irritation... 

Cyrus's granulation issues at his stoma site have finally seemed to settle. His skin looks a little red and irritated in the area, but the tissue has stopped trying to grow around his button, and leakage from the button has dropped down to almost nothing.

Cyrus's newest peptide formula did not go well. Once we moved over to the new formula exclusively, the vomiting did disappear, and there was only a little spitting up on occasion, but he had constant chronic diarrhea for over a week. His school sent him home for this too until we got a letter from the GI clinic, saying, "Hey, while we're messing with the diet, some diarrhea is expected and not a sign of infection or illness. He's allowed to be at school". 

But then, when the diarrhea lasted for a week on a formula that "almost no one has issue with", GI is all worried he might actually have an infection now. The pediatrician on the other hand, just thinks the pre-digested formula is running through him too fast. And she recommended switching formulas again - to something in-between high fiber and pre-digestion. She recommended Nestle's Compleat organic real food bend. So I ordered six days worth of that so we could try it out before I ask the GI nurse to change our formula prescription. I don't want another month's supply of something that isn't going to work. We're on day two of Compleat! And so far, we've already seen some significant improvement!! His stool is still a bit loose, but no longer pure liquid. But we're also going to collect some stool samples to insure no infection as well. 

Cyrus's school has been closed yesterday and today anyway due to air quality concerns. Apparently, here in California we have "smoke days" instead of "snow days". But it's hard to argue with staying home when the Air Quality Index is rated at 220 due to smoke from an awful fire that is 200 miles away! Cyrus's diapers have been rather smelly as of late, and we can't even air out the apartment. Time for a diaper pail and an air purifier or three methinks. 

Hope all of you are well! And that you have a roof over your head that is not threatened by fire, food to eat that doesn't give you diarrhea, and air to breathe that won't cause lung cancer or COPD.