Okay, before I get into the Saga of the Bathing System, let me update you on Soren.
It's been over a month since I last wrote. At that time, Soren was having some big problems with daily seizures. We tried some stuff that really didn't seem to work and then all of the sudden, Soren's seizures normalized to just 1 per week.
But before we got too cocky, they came back. Most of March and early April he was having daily seizures. During Spring Break, Soren was in a great mood one day, but then had a seizure one evening and another the next morning. He was wiped out and cranky the rest of the day (not that I blame him). That "double whammy" really took its toll.
I increased his morning meds a couple weeks ago and have now increased his evening meds, so I'm crossing my fingers that this helps. In between the seizures, he's such a happy, engaged, silly boy. And if the seizures are small enough, he's bouncing back quickly. We'd just really like to finally get rid of these things.
Now, onto the bathing system. Soren cannot sit up alone in the tub, so he has a Rifton bath seat which has done us well for the past 8 years (seriously, he got it when he was 2). With this seat, I lift Soren from our bed to the bathroom, put him on the seat, bathe him, lift him again, and put him back on the bed. Now, this is all well and good when you're dealing with a little boy. However, 3 years ago, Soren started getting big and I'm only a wee 5 feet tall.
So, in 2011, we started working on getting a bathing system. After doing research, we decided we needed a system where I could use our Liko Lift to put Soren on a bathing seat that's on wheels, roll him into the bathroom, click the seat over into the tub, bathe him, click him back, and then use the lift to move him again once he was dry and ready.
We picked one out, submitted it to our insurance, they approved it, and the seat was delivered. Only one problem. The seat didn't work in our bathroom! Our tub is blocked a bit by the cabinet and, ugh, it just didn't work. So they took it away and I did more research. There was one piece on that chair that was causing problems. So I found another that didn't have this piece.
Once again, we submitted to our insurance. But, in the time between Seat 1 and Seat 2, our insurance changed the rules on Durable Medical Equipment (DME). They no longer considered bathing systems for the disabled DME. I have no idea what a bathing system is if it isn't that. But, nonetheless, we were denied.
Because he is severely disabled, Soren has MediCal. So, the next step was applying to MediCal to see if they would cover the seat. (Keep in ming that this seat is priced at $3,689.) But MediCal is hardly in any rush to approve such things. In fact, they wanted me to apply to CCS (California Children's Services) to pay for it instead. The only hitch with this is that Soren's CCS case had been closed about 3 years earlier because he'd "aged out" or something (I'm not sure, I'm constantly baffled).
But MediCal insisted, so I persisted. I finally got CCS to reopen Soren's case. I had to give them Soren's most up-to-date information, which includes his medical diagnosis. Well, this can be a bit of a problem. Soren's got a lot of things going on. I consider his biggest problem to be Epilepsy, but CCS does not consider a seizure disorder as a worthy condition to warrant medical equipment. Never mind that it's the seizures that have caused his global developmental delay. They want big flashy diagnoses like Cerebral Palsy and Autism. Well, as luck would have it, Soren also has these on his list of diagnosis, so I gave them the doctors' reports and hoped for the best.
Unfortunately, after lots of hemming and hawing, CCS denied Soren this piece of equipment. So, I went back to MediCal and told them that Soren had been denied. "Why?" they asked. I explained that, as far as I understood, it was because his diagnosis didn't fit the bill. "Why?" they asked. "I don't know," I replied truly not knowing why but knowing that I just wanted to move forward with this.
By now, I'd actually developed a nice relationship with the Manager at MediCal. She was also helping me deal with the monthly denial letters I was getting from MediCal for Soren's incontinence/diapering supplies. Thanks to her efforts, she made sure that I didn't have to wrap Soren's behind in old rags by putting the right information into the computer so that we got an automatic approval.
So, she pushed the paperwork through and got us an approval for the bathing system. Huzzah! After 2 1/2 years the nightmare was about to end! My back would be saved! All would be right with the world! Except...that didn't happen. When they delivered the bath seat, it was the kind that sits in the tub for old people. You know, just a plastic and metal chair? Before they guy could even take the plastic off, I told him to put it back in the car. I wasn't accepting it. I then called the Manager. She said she'd gotten a note that I'd refused the seat. I admitted this was true. Soren could never use this seat. Soren cannot step into a tub and sit in a seat. I wish he could! But sadly, this was not the seat we were looking for.
I re-sent her the information on the seat that we wanted. She saw the price tag of $3,689 and realized that this item was WAY out of MediCal's allotted amount. (I think the seat they sent was $150.) I was so bummed. I thought I was close to the finish line, but it got moved on me yet again.
Now, at many points during this over 2 year ordeal, my husband (seeing my immense frustration and listening to my manic rants) suggested that we save up the money and buy the seat ourselves. But I was in too deep by this point. I'd written too many letters, made too many calls, and harassed too many doctors. And it wasn't like I was asking for the moon. This is an item that is medically necessary for my severely disabled kid!
In fact, Soren has a friend that got the exact seat we were asking for right away--no hassle--from CCS. The difference is the diagnosis. This boy's diagnosis fits their magic criteria. But if these people actually met Soren, they'd see that he is much more disabled. He just doesn't have the appropriate diagnosis to match.
But I wasn't ready to give up. I was going to get this chair! And I had one more option: The Regional Center.
In California, there is an agency called the Regional Center that supports children and adults with developmental disabilities. Soren has been with the Lanterman Regional Center since he was a baby and they have provided amazing things for him. Therapies, camps, equipment, and they even helped pay for our ramp van. Way back when this bath seat saga started, I asked Soren's Case Manager if the Lanterman could pay for the chair. She said she could submit the paperwork and see. The only problem was, Lanterman is the last resort in these cases. I had to have letters of denial from every other possible source before I could submit my request.
So, when the Manager at MediCal said that they couldn't pay for the seat, I excitedly said, "Fine! Can I just get a letter of denial? That's ALL I need!" I think she must have heard that I was at my wit's end (and she was probably sick of talking to me). I got the letter the next week.
I submitted a pile of paperwork to Lanterman. By now I had acquired a letter from Soren's pediatrician and a letter from his neurologist, both stating why this piece of equipment was necessary. (Originally I only had the letter from the pediatrician, which should have sufficed. But either MediCal or CCS requested a letter from the neurologist, which is rather unusual.) I had the letter of denial from our insurance, CCS, and now MediCal. I had info on the piece of equipment with the price. I sent it in and at the end of 2012, I was told it was approved! Huzzah! Happy dancing all around!
But it's never that simple. Soren's Case Manager said that a Rep from the equipment company that they worked with needed to come out and assess if this was the best seat for Soren. I was totally fine with that. Anything to move this forward. However, in doing that, we discovered that the Omni seat that I had so desperately been pining for wasn't actually the best seat for Soren. The Rep recommended another seat. It positioned Soren much more safely, so even though it's the ugliest piece of medical equipment I've ever seen, we had the Rep submit the quote for that piece. The trouble is, it was MORE expensive! It came in at a whopping $4,875!
Well, then Lanterman had to get some other companies to give quotes. Which means I had to schedule another visit with another vendor--who didn't show up during his allotted time. (I'm a busy lady, people! And he was actually busy with another client. But still.) But he did come in with a cheaper quote, bringing the price down to $4,368.
Now, remember, the price for the original, approved seat was $3,689. The price difference is $679. And Lanterman was now questioning whether to pay for the seat at all. They want to know why it's this seat instead of the other seat. I noted that it's not because it's visually pleasing. It's because it's safer and more appropriate for my kid. So I proposed that if they cover the amount that was already approved, we'd cover the difference. That sounds fair, right?
Currently, I am waiting for the answer to this proposal. Soren is currently 9 1/2 years old, approximately 52" and 54 lbs. I'm optimistic that we will get this seat before he outgrows me. Hopefully this saga will soon be over and we will finally have this Bathing System!