Thursday, January 8, 2015

F*** the Insurance Companies, and the screwed up system they rode in on!

First let me say it's good to be back! Been on a little hiatus, but is back in a big way in 2015. So without further adieu, here is the first new post of many of 2015!

So as some of you may have seen about 2 months ago (11-5-14) on my Facebook, I was slightly pissed off about my current situation with getting a new chair, and how ridiculous the process is. Well...I'm not done! In fact, I was just getting started. So I'm here to give you the scoop on this ridiculous situation, show you all how I really feel about everything surrounding it, and to get this moving again. If you're unfamiliar with the wheelchair business and how insurance companies treat it, allow me to educate you.

Now before I go into the whole process, let me tell you about my current wheelchair state. First off, I currently have an iBot 4000. If you've never heard of it, I've linked to it's Wikipedia page, it was engineered by Dean Kamen, the inventor of the Segway, in partnership with Johnson and Johnson's Independence Technology. In a nutshell, the chair normally functions on four wheels like the "typical" power wheelchair, but also has the capability to drive on 4 powered wheels in what is called "off-road" mode, can climb stairs, and can stand and balance on 2 wheels in what is called fittingly "standing" mode. Now the "off-road" mode enables me to climb curbs, single steps, and easily traverse deep gravel and some sand. A useful function, especially considering how messed up the sidewalks and streets can be here in Seattle. The stair climbing function, while it sounds awesome, is pretty much a bust. In order for the user to use it by themselves, they have to have enough upper body strength to pull themselves up a handrail to initiate the chair's climbing action. I personally don't have such upper body strength. On the flip side, if like myself the user needs someone to assist them up or down stairs, the user has to contact the iBot people, have them fly a representative to them, and then have them personally train the designated person/people on how to assist in the climbing function. Extra right?!? And on top of all of that, the climbing function is slow, herky-jerky, and quite frankly unsafe if you ask me. I've actually had an "incident" involving stairs, the climbing function, and a few other elements that I'll talk about in a later blog post. Trust me, that story is one for the ages that you won't want to miss. My best friend Drew can totally back me when I say that.

However, while that does sound quite negative, I have to say that it's the chair's "standing" function that has been a truly revolutionary ability in my life. The fact that the chair balances on 2 wheels like the Segway does is cool. It looks cool, I get stares and questions every time I use it, and it's unlike any wheelchair I've every seen or used, and if you know me, I have no problem with standing out and being different. But I could care less about the chair literally balancing in such a fashion. The thing that makes the function so great, is that it enables someone like myself, who has spent their entire life sitting in a wheelchair and being "ass-level" to everyone, the ability to finally be basically eye to eye with people. That in itself has been huge for me. Both in public settings where people are all walking around and I can be seen and acknowledged, to teaching and presenting while I'm standing height and getting people's attentions. It's something that so many take for granted that I love. Also, the standing function allows me to reach so many things, cook effectively in the kitchen, which I love to do, be able to go to restaurants/bars where high tables are used, and overall just be more independent. It's something I never imagined having in my life, but since I've had it, I can't imagine being without.

So those are the reasons that the chair I've been using for the past 7+ years has been pretty awesome for the most part. But there are negatives to it, outside of the bogus stair climbing function. The first being, that I had to pay for the whole thing out of my own pocket. Remember how I mentioned that insurance companies can really suck? Well in this case they did. Insurance companies have a very narrow idea on what wheelchairs need to be able to do in order for them to be covered. Not only that, there are features that they deem "unnecessary" or "convenient," and therefore they won't cover said features. In the case of the iBot, they actually didn't cover ANYTHING. Even worse, the chair costed about $23,000. Ridiculous I know. And while I could've just gotten a different wheelchair, the moment I saw the iBot for the first time, I knew I had to have that chair. And looking back, even though I had to use some of my own savings, my parent's helped, and I was able to secure a $10,000 loan from the Washington Access Fund, I wouldn't change a thing. I've viewed the world from a perspective I never imagined I would, and one that I have to have going forward.

Negative #2 is the fact that the battery is horrible. I could get about 6 miles per charge, which isn't the best, but also isn't the worst. While most chairs get closer to 10-15, I could still manage to go to work, go home, travel to my girlfriend's house, go out at night, make a run to the store if needed, and whatever else I would want to do in a day. The horrible part is that while the batteries are supposed to last about a year and a half, which is already substantially shorter then any other chair I've had in my life, within 8 months the battery's memory would degrade, and that 6 miles per charge would turn into closer to 2-3 miles per charge. And every time that would become apparent, I'd have to purchase a new set of batteries for $1000. So I'd either have to deal with having a chair where I basically can only go to work and home while I'm constantly worrying about whether I can make it home, or spend more dough on new batteries. A real headache!

With all that being said about the chair, both good and bad, I really do love the chair. But the real nail in the coffin, and the reason why I'm currently once again reminded about how much the insurance companies can blow, has to do with the state of the company Independence Technology. Due to the fact that insurance companies deemed the iBot as un-coverable, Independence Technology wasn't able to sell very many because lets face it, there aren't droves of people with $23,000 to spend on wheelchairs. As a result, the company halted production of the chairs, and this past September, they totally halted all service and maintenance for the chairs. And currently my iBot is in horrible shape. The battery memory is closer to a 1 mile per charge lifespan and the chassis is broken. The broken chassis prevents me from driving in any mode outside of the "standard" drive function, and also restricts the top speed to 3 miles per hour. So I'm essentially hamstrung to driving slow (which can suck since Seattle has a tendency of having rain), not being able to travel a full days worth (I have to call someone to pick me up from the bus stop after work since I know I can't make it home), and being without any versatility or independence that I had previously. I'm actually currently using my 12 year old Invacare Arrow wheelchair. It's a little snug in terms of fit, and has no standing or comparable functions, but the battery is really good (about 10 miles per charge), and it's actually faster than my iBot ever was seeing as the iBot's top speed is 6.5MPH and the Arrow's is about 8MPH. Gives trues meaning to the phrase that they don't make them like they used to.

Well now that you know the current state of my wheelchair affairs, let me tell you about what the process of getting a new chair is like. First off, once I came to the conclusion that I needed a new chair, I did some research and came to the conclusion that I wanted a Bounder from 21st Century Scientific, Inc. There are a few different wheelchair manufactures out there, but I found the Bounder to have everything I wanted. It's sturdy, has great motors, has a battery option that's rated at 50 miles per charge, and has an elevating seat option that raises the seat of the chair 12-13 inches. As I stated earlier, being able to be at an elevated position is something I refuse to go without from this point forward, so that was a requirement for me. Also, the chair has a top speed of 11.6MPH, has all the other features I've had previously, like recline, tilt, head and tail lights, a horn, bells and whistles I've always had, and all around just was the chair I wanted. So once that was decided I contacted NuMotion, which is basically the dealership that most people using wheelchairs go through, and let them know I was in the market of getting a new wheelchair. I was told I have to go to my doctor, get a prescription from him saying I need a power wheelchair, and then also get a referral from him for a physical therapist who would also need to confirm that I need a wheelchair. What kind of shit is that?!? Now I understand that people have and will continue to try to scam insurance companies. But I've been in a wheelchair my whole damn life. I've dealt with NuMotion my entire life, back when they where known as Wheelchairs Northwest, and then changed to ATG Rehab before becoming NuMotion. So I know they have some paperwork on me somewhere. But whatever. I did as I was told. When I saw my doctor and told him why I was there, he just said "seriously?!?" Then he wrote me a prescription around what I needed my future chair to be able to do, and then wrote me a referral to see a physical therapist. Once I met with the physical therapist, she said the same thing and then had me thoroughly detail all the different things I needed my future chair to be able to do for me to continue to be as independent and self-sufficient as I've been so far, so that she could compile everything into her report. While both the steps with my doctor and therapist were completely painless, it's incredibly annoying that someone who has had 5 power wheelchairs in their lifetime, and has Spinal Muscular Atrophy, which isn't going to change, still has to jump through these types of hoops.

Once these initial steps were taken, I then had to meet with the NuMotion representative. He came over to my house, and had to take all of my and my chair's measurements. The point of being measured is to ensure that the chair I get fits properly, and also to be certain that whatever the dimensions that my future chair may have, they aren't too far off from my current chair, as to not negatively affect how mobile I will be in my everyday environments. After the measurements were taken, we talked about what I wanted my future chair to be able to do. Now this is where a huge issue for me is. Let me first just say that the NuMotion rep was just doing what he's required to do as a result of the way insurance companies operate. But one thing I have to do is justify every feature that I know that I need. Like I said earlier, I realize that people scam insurance companies all the time. But the fact that I know what I need to be able to do in my life and in my future, and that I have to justify that to someone that doesn't know my life or what it's like to be in my shoes is insulting. Still I did it like I suppose they figure a good cripple should. While doing that, we went over the entire order form for the Bounder chair. It too was a long arduous process, but necessary nonetheless. This personal interview/measurement process took place about 1 month after my initial inquiry to NuMotion about getting a new chair, but it is what came out of this that truly pissed me off, and was the reason that I went off on Facebook like I did.

You see, I was given two quotes by NuMotion: one quote (about $18,000) giving the total cost, and the other (also about $18,000) giving the cost of the parts/pieces/functions that insurance won't cover. And the list of the shit that they won't cover makes NO DAMN SENSE! Now for those that don't know, the things that they won't cover are essentially deemed by them as "unnecessary" or "convenience" items. Some of the items that ended up being designated as uncovered, and therefore I have to pay for with my own money, include:
  • Tie-down loops (because who would ever need their chair to be securely tied down in a moving vehicle?!?)
  • Headlights (because crippled people only travel outdoors at high noon, and it must be illegal for us to be out at night right?)
  • Puncture sealant in the rear tires (because having tires that are more resistant to flats would be a travesty!)
  • The Lithium Ion batteries I spoke about earlier (because being able to travel farther and longer without worrying and therefore being more independent is entirely too much to ask for!)
  • But the most egregious inclusion on this list has to be the 12 inch elevating seat (because as we all know, being able to recreate something many people in wheelchairs dream of being able to do, would be absolutely a convenience item.)
And the moment I received that email that informed me of all the uncovered items, I lost it. HOW AND WHO IN THE FUCK DETERMINES WHAT IS AND ISN'T "NECESSARY" FOR A WHEELCHAIR AND ITS USER TO HAVE?!?! I've said it before and I'll say it again, but a wheelchair, for those of us that depend on them, isn't just some device that we use to get around. My wheelchair is an extension of myself. Now don't get me wrong, I'm the person that uses said device. But the more capabilities my chair has, the more I am able to do, and therefore I will have a higher level of independence. How would you feel if you had to literally pay in order to have the ability to reach things? Or how about there being a monetary price to being able to stand up and access stuff? That's kind of what is happening here. I actually had someone I know suggest that I just get a cheaper chair, and I damn near went off on them. They just looked at the dollar amount, but I had to break it down for them to just comprehend the whole situation. Don't worry though. I remained calm, and we're still cool. :) What also severely fucking pisses me off, is the fact that what is essentially happening is that there is a price being put on one's level of independence. "We'll totally pay for a 'standard' wheelchair, no problem. But you want features that make you more independent or self sufficient? Or, features that will possibly save us from spending more money on you in the future, like a battery that you'll get more use out of, or other features that'll make your chair more future proof? You want to be able to reach shit? THAT'S EXTRA!" Of course they, and by they I mean those damn insurance folks, don't actually say that, but they might as well.

Anyways, I was and I'm still extremely irritated by the entire ordeal. A little over 2 months into the whole process, and my chair still hasn't even been ordered! Matter of fact, 2 weeks ago I had to go in for another face-to-face evaluation with my doctor for the chair. In my case, according to NuMotion, the insurance company had to have an actual document called a 'face-to-face evaluation' filled out by my doctor. So I once again had to meet with my doctor, this time with the evaluation form in hand. And once again my doctor chuckled over how dumb this additional step was. And trust me when I say the form was dumb. There was even a question asking for me to describe my gait. Seriously. Regardless, we went through the evaluation as needed despite laughing at all the questions, and he turned it in right after.

Well, with all this said, and while I'll forever be irked by the way the insurance companies treat the whole wheelchair buying process, hopefully my wait for my new chair is almost over. I am however dreading paying for the half of the chair that insurance won't help with. I'm confident that I'll figure out a way to cover the $18,000 that I'm responsible for. I'm once again applying for a loan through the Washington Access Fund, and I've got some savings and a job that I love, but I've also created a GoFundMe page. Hopefully that bears something, but I'll figure everything out regardless. As I've stated in a prior post, cripple people are resourceful. So until next time, remember this: insurance companies, and whoever else plays a part in the whole process, fucking suck in terms of their understanding of how wheelchairs impact the lives of those of us that use them, and I will always get whatever wheelchair I feel enables me to be the most independent I can be, by hook or by crook. Me allow someone to sway me differently, or to let a dollar figure stop me from being as independent as possible? Cripple Please!!!


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