accessibility_fail | Wheelchair update: a rant

Wheelchair update: a rant

So on Monday morning I contacted the sole "wheelchair supplier" authorized by Cigna and ordered a wheelchair, even though as it turns out they do not actually supply wheelchairs; they verify the claims/prescriptions for wheelchairs and then contract a supplier to send the actual wheelchair. I was informed that I would hear from them within 48 hours. I was pretty skeptical.

Understand something: I do not want this wheelchair. I have fought against the necessity of getting this wheelchair, and only finally agreed to get one after a particularly bad fall in September that made it even more difficult to walk for several days and where there was a question of potential knee surgery and after months of having close friends talk me through this. I hate the entire concept of being in a wheelchair. (I hope I'm not offending anyone; if I am, I'm really sorry, and I'm very aware that I have issues here that I need to work through.)

So we are talking about going through the process of something that I need but do not want. The second thing is that I'm lucky: I'm not rich but I do have cash on hand to buy an ultralight folding wheelchairs - not a top of the line model but one that would work. The third thing is that I'm not married and depend on several people to drive me around so one of those platforms for cars to carry a wheelchair is just not practical.

Anyway.

So yesterday morning I called to find out what was going on. The woman who answered said that she didn't know why this was taking longer than 48 hours but she would check and call me right back. Naturally, she didn't. I called again in the afternoon, to be told that my request was still being processed and I needed to understand that they were handling lots of other people besides me and it would take time. "How much time?" I asked. "I don't know." "Can you at least give me an estimate?" "I really don't know."

I explained to her that without the wheelchair I was FALLING and injuring myself. Her exact words:

"Well, that's fine, but we still have to go through the process."

No, it's NOT FINE. It's not at all fine.

So I called Cigna again. They tried to give me the same names that already hadn't worked, then agreed to call CareCentrix again to find out what the issue is. CareCentrix repeated, to me and to the Cigna rep that they had to go through the process, and then gave me the real news: it will take another two weeks to process my claim (something I feel Cigna, not CareCentrix, should be doing) and then since we will be working with a provider in Miami (!) another few days for that provider to come because they won't make a trip for just one person so it has to be scheduled with other people and then it will take at least another 30 days to deliver the wheelchair. In the meantime, if this was a problem for me, I should feel free to buy a standard wheelchair on my own and if there was a transport problem add a lift to the car. (See above! Lift=not practical! Ignoring the problem that I can't push a standard wheelchair on my own! And why do you need a lift for a regular wheelchair anyway? Aren't those for power wheelchairs or am I showing my ignorance here?)

To her credit, the Cigna rep choked right along with me. "30 more days?"

"That depends upon the delivery service they choose. It may take longer."

"Why didn't you tell me this WHEN I INITIALLY CALLED?"

"Well, we have a process. And we need to go through the process."

The Cigna rep apologized. Meanwhile, I'm torn between just cancelling the entire thing and buying one on my own versus waiting for this stupid process. Especially since I'm becoming grimly convinced that they will deny the request, even with medical documentation from my personal physician, the clinic that treated me after my fall, and the Mayo Clinic showing the necessity.

Unquestionably, though, once it becomes practical, I'll be buying the power wheelchair on my own.

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"Well, we have a process. And we need to go through the process."

Translation: I work at a callcenter, and I need to follow the script I was given, even when it doesn't make sense.</speculation>

"we're explicitly told to lie to you, sorry"

Maybe? (It's unclear to me whether the people mariness talked to on Thursday are the same ones who made the 48h claim initially, so it's possible, however remotely, that they don't know about that claim. Not that it matters to her, though.)

Yes, yes, they were. I should have been more clear. The same exact person, in fact.

Ah, yes. Then the accusation of lying becomes much more likely correct, then. :-(

And what she didn't seem to get is that I honestly do understand that it can take them seven days (or more) to process an order and another 30 days to get it out. I just think I should have been informed, so that I could decide if I really wanted to do this, or to just buy something through the internet.

*nod* Indeed.

.............*much much sympathy*

Stupid insurance Processes.

Goddamned stupid damnable insurance. I'm sorry that you have to go through this crap. If I were you and it was remotely viable and whatnot, I'd ditch the insurance process and get the wheelchair on your own, contacting a supplier and seeing if you can get it without the insurance company. Waiting over thirty days for a wheelchair that is a medical necessity is SO NOT GOOD.

Yeah, that's what my friends are saying. Plus if I don't go ahead and get it I may chicken out, medical necessity or not. I just so did not want to spend the money on this _when I have insurance_!

(but you are right about the wait.)

And why do you need a lift for a regular wheelchair anyway? Aren't those for power wheelchairs or am I showing my ignorance here?)

as far as i know (a non-wheelchair user here) they are for people who can't get out of the wheelchair to put it in their car or don't have anyone to do that for them. the lifts are usually found on vans that are specially equipped with hand controls as the people in wheelchairs can't use the pedals.

What she was talking about - and I asked her to describe it, to be sure - isn't the sort of lift to get you into the car. It's what you install in the back of the car (although I've mostly seen them for SUV) to carry just the wheelchair, not the person and the wheelchair. She brought this up when she was saying that the ability to fold the wheelchair was an option, and I said no, because I had to get it into a variety of cars, which is when she started talking about adding the lift to the back of the car to carry the wheelchair, meaning that I didn't "actually" need to have a foldable wheelchair.

oh. i didn't know they had those.

I've seen them around here toting around the really heavy powerchairs. And bicycles.

Once you have a letter of medical neccesity (which it sounds like your doc has already written or is quite willing to write) then most insurance companies (including Medicare) will pay to rent you a chair until they come through with one of your own.

As far as transportation tech, here's a quick rundown.

Terminology is fuzzy because there are minimally overlapping sets of experts, each with their own jargon.

Generally a wheelchair lift is sturdy enough to hoist a person in their power chair ~ 600 lbs. Full size vans have lifts, and high-platform buses. You'll also see them on some porches, to get around the front stairs.

There are racks to hold a manual wheelchair, much like a bicycle. The manual must fold side-to-side (that's what the standard heavy "depot" chairs that you'll see in a clinic or a grocery store.)

Then there are hoists which lift a scooter or power chair from the ground up (and then often swing into) a minivan or SUV. Hoists just carry the equipment.

Living in Florida, you may have seen roll-on platforms. They can hold scooters & lightweight powerchairs but just the equipment. So you'd have to drive the device onto the platform from a standing position, and then lean on the car to get back to the drivers' seat.

Finally, there is the fabulous Tip Top Mobility Hoist, which is a rooftop carrier that lets you wheel up next to a car, transfer inside, and then grabs your chair and pulls it into a box on top of your car.

We're rooting for you, come'n'whine whenever!

Much thanks for the clarification on the terminology! I'm still learning stuff here. It sounds as if what the CareCentrix person was talking about, and what won't help me, are those roll-on platforms. I don't know why she called it a lift? (Then again she seemed to think that being 5'1" is a very rare condition, so...yeah, maybe I shouldn't be taking her word on anything.)

I did ask about renting a chair since I already have the letter of medical necessity (which has been faxed to Cigna) but that isn't covered by my policy.

There was a bit on PBS.org about healthcare and health fairs, I think they were called. I forget the company one man worked for, I want to say Cigna, but that may be bias.

Anyway, he talked about going to visit family in Virginia and hearing about the healthfare and figuring to swing buy and see how it was since his own family members were talking it up like it was such a big deal. He'd figured it'd be a couple of folks getting their blood pressure checked, some nutrionists and the chance to talk someone's ear off about aches and pains.

He didn't understand why it should be such a bid deal.

Then he got there. In the rain. And there were thousands of people waiting to be seen by doctors and dentists; holding umbrellas, huddled under tents. And he was told people had been there waiting since 7am, and the fair closed at 8pm and they were considering extending it another day if they could scrounge up the resources.

He was in shock.

Why were so many individuals coming to a -fair- for healthcare?!

Then he went back to his family, finished his visit, had the company's private plane pick him up. Sat down in his leather jet seat, had the hostess put a gold plate in front of him for lunch and realized where all the money for healthcare was going.

I rolled my eyes some, since he seemed to want to get cookies for quitting his job and dipping his toes into advocacy. But I found it made a solid impression on me with how out of touch the current supposed caretakers of the healthcare system are with real suffering.

---

CareCentrix has a 30 day process they will only inform you of if you say WTF the magic number of times - indeed.

Yes, that guy was from Cigna. And I have to say, honestly, it feels as if Cigna wants to make me sicker. This is by no means my only problem with them, and it's frustrating. (Especially since all of my doctors have agreed I need to try to avoid/reduce stress. Not bad advice, mind you, just, Cigna!)

But it's not just Cigna. My best friend is having issues with United Health Care over a freaking colonoscopy; my parents are also having issues with United over some of my father's heart tests - and they have top of the line insurance!

I get, of course, that many people (including members of Congress) have financial reasons for supporting health insurance companies. And if private health insurance acted more the way car/home insurance does, where I have my choice of insurers, can leave for another insurer if I'm unhappy, and can also opt out entirely by choosing not to have a car (ok, admittedly not everyone can do this) or a house, I'd have fewer issues. (I'd still have issues, mind you, because you only need car insurance for an accident, not for daily maintenance.) But that's not the system we have now.

And I still don't see why CareCentrix couldn't tell me that it would be 30 days when I first called them.

Hi! I wanted to mention something.

1. Hating the idea of a wheelchair is one thing, but wait until you actually get into one and see how helpful it can be. I hope you will enjoy it.

2. Rigid, nonfolding wheelchairs are FAR lighter than folding wheelchairs, which makes them easier for me to handle and get in and our of cars. They actually _do_ fold somewhat if you ask for the option: their backs fold down. I have fit my wheelchair and its wheels into multiple small sedans, either in the back seat or in the trunk.

I wish you luck in this. It took me months and months to get my wheelchair, although part of that was because my vendor had me try a bunch of different types to be sure I got th eright one for me.

1. I'll at least enjoy not having to hear everyone nagging me about getting one.

2. Hmm. Two of the people who drive me around use a Volkswagen Bug (this is the main person) and a Mazda Miata (not as frequent). The Miata trunk space is the real question here. But I will definitely keep that comment in mind since the weight of the chair is a real concern for me - I want to be able to push myself, and I fatigue VERY easily, so the lighter the better.

Thanks!

1. I'll at least enjoy not having to hear everyone nagging me about getting one.

HA HA HA HA!

I had the opposite experience; everyone thought I was maybe jumping the gun in getting the chair.

I also fatigue easily, and after trying out the best folding model they had and a run-of-the-mill titanium rigid, there was NO question which was easier to push.

Oh! And while I'm dispensing advice: bicycle gloves. I wish I'd had them from the get-go.

Nobody thinks I'm jumping the gun here. This is a year and a half after doctors and friends first recommended one, and I have several friends who have been urging me to get one for months.

I do have the bicycle gloves! I use them on my trike. They're AWESOME. Special bonus: they help reduce my hand swelling. I actually have two pairs now - a fingerless one for the nine months of the year where it's too hot to wear full gloves here, and a fingered one. Getting those was the best advice the bike store gave me, by far.

Do you happen to ever need crutches? I fixed up my bike to carry mine easily and quickly:

http://www.flickr.com/photos/haddayr/sets/72157614985153804/

It cost $13.

(I'm also very sorry if I'm squeeing and geeking out over equipment and stuff and you are just freaking out at the idea of a chair. You and I are Opposite Girls, I think -- I don't know why, but I never had emotional hurdles with mobility equipment. I wanted to get where I needed to go in the easiest possible fashion for my abilities, and I realize that this is a very VERY upsetting issue for many people.)

I can't use crutches - my chief issues are balance/fatigue/foot disorientation, and sudden unexpected drops in blood pressure that usually lead to me falling. I do have a quad cane which helps with the balance but doesn't stop the falls; thus the wheelchair.

Unfortunately the setups for cane/crutch holders don't usually seem to work with quad canes, but I am making shameless use of a Crafty Friend to create a cane holder that I can use with the scooter and the wheelchair.

And no need to apologize. I'm on a major learning curve here and the more I can learn about equipment the better for me.

Do you by any chance have the option of purchasing your wheelchair personally and having Cigna reimburse you? I know my parents had a lot of pay-first-reimburse-later options or requirements in their health insurance plans.

Best of luck, whatever happens. :\

That was actually what I was trying to do, but my policy states that durable medical equipment (which is what the wheelchair is classified under) has to be purchased through a Cigna provider for reimbursement. If you choose to use a non-Cigna provider Cigna can decline the reimbursement, and even if they don't I'd still have to pay 70% of the full retail price of the wheelchair (which is actually more than I what I would pay by going through 1800wheelchair.com, so I would basically not get any reimbursement at all.) The real problem, which I chatted about on my own blog here, is that Cigna DOESN'T COVER ANY WHEELCHAIR PROVIDERS IN THE ORLANDO AREA. Excuse the caps but I'm still irritated. I live in a major metropolitan area with a large disabled/elderly population and several wheelchair providers, so this shouldn't have been difficult, but Cigna doesn't work with any of the providers here, possibly because a couple of the providers have refused to work with Cigna.

It's beyond stupid, because if I have another bad fall and need knee surgery - the only reason I agreed to get this wheelchair in the first place - Cigna will have to pay a lot more for the knee surgery than for the wheelchair. On the other hand, they probably can tell that my COBRA coverage ends in December and then I and my assorted health issues will be United Healthcare/CoverFlorida's problem. (Which won't cover any pre-existing for a year.) So all they're risking is that I don't have a bad fall in November.

If you do wind up buying your own chair, I highly recommend one of Quickie's folding power chairs. Mine's batteries just finally died on me after five years -- and that was after the original owner had the same batteries for two years before me, despite the fact that the batteries are only rated for two years. I'm mulling whether to replace the batteries or the chair, though leaning toward the latter, mainly because I took that poor chair all over the country, on plains and trains and the trunks of taxicabs, and it really is nearly due to just be retired. It's scruffy, but if it weren't for the batteries going I could still take it all over Manhattan -- or all over my CT hometown where sidewalk maintenance and repair get addressed years late if ever. Don't think it's going to be flimsy or rickety because it can be folded up. It can even roll right through a 3-4 inch depth of running water (though I wouldn't recommend trying to go much more than 3-4" width of water that deep; I only chanced it that time because there was a sudden flash flood and I pretty much had to.)

The model I have is a P210, but they change model numbers every year or 3, and you probably want a never version. Advantages of the folding models include ease of finding a place to attach tie-down straps (which is necessary in paratransit and medical transportation vehicles and also most buses), compatibility with standard wheelchair accessories, and of course the option to take the velcro-attached seat cushion off, lift (or have someone else lift) the batteries & battery tray out, and fold the chair up -- mainly but crucially useful when the only transportation option is a sedan.

Unless you really truly need one of the chairs with the tall, padded seats, I recommend against them; they may look cool, but they're rarely as convenient in practice, but are frequently foisted onto first-time wheelchair users (even though they're more expensive!) by manufacturers, providers and even insurers.

I highly recommend you insist that someone bring several models for you to try out so they can see which chair actually fits YOU -- and you may need to get their agreement to do this in writing. One poor woman in my building had to give her chair away because the idiot insurance company paid for a chair rated for a 350lb person even though she's under 5' and really needed a "child"-sized chair. (Unfortunately for adult little people, that is the industry term.) She literally could not use the chair because she slid all over the seat and couldn't reach the controls safely. Most people don't get that lousy a fit, but wheelchairs are NOT NOT NOT one-size-fits-all.

Also, I have to specifically warn you away from a Jazzy brand chair unless that's the only brand Cigna will cover *AND* you have it in writing that they'll also cover both parts and labour for repairs. The place that does all the work on my chair won't work on Jazzy chairs both because they break down ridiculously often and seriously even when essentially brand new and because dealing with the manufacturer to get the parts is ridiculously difficult. (The only other brand they don't do is Hoverounds, and that's just because HR doesn't let anyone but their own people service their chairs, so it's not that they just want me to use the brand or brands they sell or get kickbacks from or something.)

Like I said, I bought my chair used, for all of $600. Since some people's insurance covers a new power chair every couple of years, there's often a healthy second-hand market. Sometimes you can even get a "second-hand" chair that's basically unused, as when (like my neighbour) the chair their insurance provides is unsuitable to the point of unusable, or when the insurance takes so long to get someone their chair that they die or otherwise become unable to use it in the meantime. Just, again, watch out for those crappy Jazzy chairs, as they really do flood the market in many places.

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Wheelchair update: a rant

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